Enable March / April 2021

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Our columnist looks at the hurdles faced to find adapted housing

The UK’s leading disability and lifestyle magazine

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March / April

CARING FOR YOUR MENTAL HEALTH Take the time to reconnect with your mental wellbeing and know the signs of mental illness

To arrange a test drive please visit www.fiat.co.uk/motability

THE FIAT FAMILY AVAILABLE ON THE MOTABILITY SCHEME* Official Fuel consumption figures for the Fiat range (including mild hybrid) in mpg (l/100km): Combined 34 (8.3) - 53.3 (5.3). CO2 emissions 192 119 g/km. Fuel consumption and CO2 figures are provided for comparative purposes only and may not reflect real life driving results, which will depend upon a number of factors including the accessories fitted (post-registration), variations in weather, driving styles and vehicle load. Only compare fuel consumption and CO2 figures with other cars tested to the same technical procedure. *Fiat family available on the Motability scheme. Vehicles only available through Motability accredited participating Fiat retailers and are not available in conjunction with any other offer. Subject to orders being placed between 1st January and 31st March 2021. Terms & Conditions apply. Offer may be varied or withdrawn at any time.

As the lighter nights arrive, so does the new issue of Enable Magazine…

ADE ADEPITAN PHOTO: © IAN WALLMAN

Welcome The UK’s leading disability and lifestyle magazine

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EDITOR’S PICKS...

31 THE NEW NORMAL Lockdown has been a challenge for autistic children and young people. One family shares the importance of routine.

42 CONNECTING WITH GARDENING With warmer weather on the horizon, a gardening expert shares his top tips on creating an accessible green space in your area.

58 MEDICAL CANNABIS: THE POWER OF PLANTS Brexit has affected families relying on medicinal cannabis from The Netherlands for children with severe epilepsy. We investigate why one plant holds so much power, and stigma.

hrough the challenges of the last year, it seems that, finally, there is light at the end of the tunnel. s the vaccine is administered across the , life could soon return to some version of normal: I hope this ‘new normal’ comes with positive changes. isability representation is poignant, this has been made clear from the errors made towards the disabled community during the pandemic and the challenges people with learning disabilities faced in the pandemic to ministerial briefings where S interpreters were not present more needs to be done to provide e uity across the board. was luc y to spea with une Sarpong for this issue page to learn more about the wor the and other media outlets are doing to promote diversity and ensure disability is recognised on and off camera.

Similarly, families of disabled children are wor ing to raise awareness of the reality, both the highs and hurdles, of raising a disabled child. n page several parents share their experiences, with a young carer calling for action and support on page . e also loo at how you can support your mental health and the mental health of others on page and newly appointed outh Mental ealth mbassador, r lex eorge tal s about the importance of ending mental health stigma on page . ll this plus much more. s ever, please ma e sure to let me now what you thin of this issue or any future feature ideas you may have by contacting me using the Get in touch details in the box. ntil next time, editor@enablemagazine.co.uk facebook.com/enablemagazine twitter.com/enablemagazine

Lorne Gillies, Editor

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HIT THE ROAD Ahead of Autism Awareness Week (29 March to 4 April), editor Lorne is running a 5K, everyday, for seven days to help raise money for the National Autistic Society.

PUBLISHER Denise Connelly denise@dcpublishing.co.uk EDITOR Lorne Gillies lorne.gillies@dcpublishing.co.uk STAFF WRITER Emma Storr emma.storr@dcpublishing.co.uk EDITORIAL CONTRIBUTORS Ade Adepitan Tim Rushby-Smith Alisdair Suttie DESIGN AND PRODUCTION Alice Winslow production@dcpublishing.co.uk SALES Marian Mathieson marian.mathieson@dcpublishing.co.uk ENABLE MAGAZINE www.enablemagazine.co.uk

Behind the scenes WELL DONE We were thrilled to learn Harvey Price has become a Mencap Ambassador, working to raise awareness of learning disability.

Catch our interview with his mum, Katie on the website.

COVER PRICE £3.00

DC Publishing Ltd, 198 Bath Street, Glasgow, G2 4HG Tel: 0844 249 9007

ONLINE Never miss the latest news, interviews, discussions and columns from the world of disability over on our website. Our current top read is with members of the disabled community who have received their COVID-19 vaccination and what you can expect.

©DC Publishing Ltd 2021. All rights reserved. No part of this publication may be reproduced or used in any way without prior written permission from the publisher. The views expressed in this magazine are not necessarily those of DC Publishing Ltd. The publisher takes no responsibility for claims made by advertisers within the publication. Every effort has been made to ensure that information is accurate; while dates and prices are correct at time of going to print, DC Publishing Ltd takes no responsibility for omissions and errors.

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What’s inside March / April 2021

INTERVIEW 10 CALLING ON CREATIVE DIVERSITY WITH JUNE SARPONG The BBC’s Director of Creative Diversity, June Sarpong chats disability representation on and off camera.

VOICES 20 END THE STIGMA WITH DR ALEX GEORGE From Love Island to the frontline, and now appointed mental health ambassador, Dr Alex George speaks to Enable.

72 WE GOT GAME Escaping to an alternative world with technology.

16 SPOTLIGHT ON UNPAID CARERS Celebrating the roles and responsibilities of unpaid carers.

82 FUNDRAISING IS FLYING HIGH Discover the autistic teen using painting to release his emotions and raise money for charity.

18 THE GIFT OF UNCONDITIONAL LOVE Finding a sense of community when raising a disabled child.

SPOTLIGHT

22 THE VALUE OF RESPITE Respite for carers is vital, even in lockdown.

36 GETTING INDEPENDENT Katie Price and Mencap’s CEO, Edel Harris discuss independent living.

48 UNDER 30: LIFE WITH MS Three women under 30 share their experiences of multiple sclerosis.

LIFE 31 THE NEW NORMAL What impact has lockdown had on autistic young people’s learning and mental health?

28 THE CALL FOR ACCESSIBLE HOUSING Ade Adepitan writes about the struggles to finding an adapted home.

58 MEDICINAL CANNABIS: THE POWER OF PLANTS The impact Brexit and stigma may have on young children with severe epilepsy.

40 CELEBRATING WOMEN WITH KELLY KNOX Model, mother, and activist Kelly Knox talks about what she chooses to challenge this International Women’s Day.

CARE

42 CONNECTING WITH GARDENING rban ungle to roaming fields, gardener Mark Lane gives us tips for accessible green fingers.

13 TAKING ACTION FOR YOUNG CARERS Coming together to support young carers.

52 CHALLENGING 21 ON WORLD DOWN SYNDROME DAY World Down Syndrome Day celebrations go virtual.

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65 PRODUCT ROUNDUP Our top picks of products on the market.

RECIPE 46 EASY READ: THE HAIRY BIKERS’ STUFFED PASTA SHELLS The Hairy Bikers have adapted a recipe for Enable readers.

HEALTH 25 CARING FOR YOUR MENTAL HEALTH et mental health confident with professional advice.

45 ONE OF YOUR FIVE A DAY Top tips on supporting a disabled person to lose or gain weight healthily.

54 NAVIGATING BRAIN INJURY Adapting to brain injury and a new sense of personality.

SPORT 39 ON YOUR BIKE WITH FREE WHEEL NORTH How one Glasgow based charity is ensuring everyone can join the cycling revolution.

FINANCE 34 CONNECTED FINANCE WITH STARLING BANK How Starling Bank is pioneering in financial security for disabled consumers.

68 SEEKING DEBT ADVICE When it comes to debt, early intervention is essential.

SUPPORT

57 GOING PURPLE FOR EPILEPSY Turn the world purple and join the conversation around epilepsy.

70 YOUR RIGHT TO INFORMATION Accessible legal advice is a right, not a privilege.

61 PARKINSON’S: MAKING STEPS TOWARDS A CURE Share your experience of Parkinson’s this awareness day.

81 THE POWER OF MUSIC FOR DEMENTIA Learn more about how music can help people with dementia.

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EMPLOYMENT 76 MAKING A DIFFERENCE WITH ACCENTURE A spotlight on how Accenture is supporting disabled employees.

EDUCATION 74 THE VIRTUAL STUDENT Higher education has changed, we learn the hurdles now in place.

78 THE CALL FOR FAIR ASSESSMENTS What do exam cancellations mean for the 300,000 students with additional needs?

MOTORING 62 REVIEW: FORD PUMA Alisdair Suttie takes the new Ford Puma for a seamless drive.

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News EUROPEAN SPACE AGENCY LOOKING FOR DISABLED RECRUITS

Christine and Paddy McGuinness creating documentary about raising autistic children CHRISTINE AND PADDY MCGUINNESS are set to record a BBC documentary highlighting their experiences of raising autistic children.

The couple’s three children, twins Penelope and Leo, and Felicity have all been diagnosed as autistic with Christine continually updating her social media followers with the realities of raising disabled children.

Entitled, Autism and our Family, the one-off documentary will follow the couple as they share the highs and difficulties of parenting autistic children, alongside their pride in the small achievements their children make.

Christine describes herself as an autism advocate, and it is hoped the documentary will also help raise awareness of the autism spectrum.

SCOTLAND BECOMES FIRST COUNTRY TO APPROVE TAKE AT HOME MS DRUG A NEW TREATMENT FOR multiple sclerosis (MS) has been approved for at home consumption by the Scottish Medicines Consortium (SMC).

Zeposia has been developed for adult patients with relapsing remitting MS, where patients experience flare ups alongside periods of remission.

The drug is one of four that has been newly-approved.

Taken orally once daily, Zeposia provides the opportunity to be taken at home.

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Mark MacGregor, SMC chairman, said: “The committee is pleased to be able to accept these medicines for use by NHS Scotland.

“For those with EPP, afamelanotide may improve their symptoms, enabling them to spend more time outside.

“We know availability of this medicine will be welcomed and we hope it will provide some benefit to patients.”

THE EUROPEAN SPACE AGENCY (ESA) is looking for disabled applicants for their new astronaut recruitment drive.

Barriers disabled people may have faced in the past to become an astronaut have been lifted, as the ESA improves their stance on diversity in the field.

People with lower limb deficiency or those with restricted growth are now actively being encouraged to apply.

The ESA has already asked the International Paralympic Committee to advise in the selection process.

Applications are being accepted to join the ESA from 31 March to 28 May 2021 (www.esa.int).

Makaton relaxation videos released for disabled children MAKATON VIDEOS HAVE BEEN released by a mother and daughter to help disabled children find a safe space, helping to encourage relaxation during lockdown and as restrictions ease.

Katie Sparks, the founder of disability dance charity, Flamingo Chicks, used her knowledge to create videos with her daughter, Poppy, who has cerebral palsy.

Designed for families who are currently unable to attend special services, the free videos are available on YouTube.

LEGENDS AREN’T BORN. THEY’RE MADE.

JEEP RANGE AVAILABLE ON THE MOTABILITY SCHEME FROM £495 ADVANCE PAYMENT* For more information or to book a test drive visit www.jeep.co.uk/motability or visit your nearest Jeep dealer.

Fuel consumption figures for Jeep Compass and Renegade in mpg (l/100km): Combined 29.4 (9.6) - 48.7 (5.8). CO2 emissions 225 – 151g/km.

Fuel consumption and CO2 figures are provided for comparative purposes only and may not reflect real life driving results, which will depend upon a number of factors including the accessories fitted (post-registration), variations in weather, driving styles and vehicle load. Only compare fuel consumption and CO2 figures with other cars tested to the same technical procedure. *Jeep Compass and Renegade available on the Motability scheme. Models shown: Jeep Compass 1.4 MultiAir II 140hp Night Eagle (with additional bi-colour paint @£400). Available on the Motability Scheme from £1,995 advanced payment. Jeep Renegade 1.0 GSE T3 120hp MT 4x2 Night Eagle. Available on the Motability Scheme from £495 advance payment. Vehicles only available through Motability accredited participating Jeep retailers and are not available in conjunction with any other offer. Subject to orders being placed between 1st January and 31st March 2021. Terms & Conditions apply. Offer may be varied or withdrawn at any time.

enable news

News The hidden barriers to vaccinations The Joint Committee on Vaccination and Immunisation has updated their advice on who should be prioritised for the COVID-19 vaccine, meaning people with a learning disability will now be invited to receive the vaccination Shocking figures released by the Office of National Statistics (ONS) revealed that disabled people make up to 60 per cent of COVID related deaths since the start of the pandemic. Thanks to continued campaigning, people with a severe to moderate learning disability are being called to be vaccinated against the coronavirus.

PRIORITY Priority group four features at risk people aged 70 years and over and the clinically extremely vulnerable, which is classified as those with specific cancers, organ transplant recipients and so forth. After campaigning, people with Down’s syndrome were added to priority group four in November 2020.

However, it has taken much campaigning by people with a learning disability, public figures and charities to have people with any level of learning disability included in priority group six; featuring adults aged 16 to 65 in an at-risk group. t present, figures show that . million people aged or over, and younger people with underlying health conditions who had been asked to shield, are expected to get the vaccination first.

Further statistics revealed by the ONS showed that disabled people are three times more likely to die from the virus, yet they were not, previously, being prioritised in group six.

CAMPAIGN Charities, celebrities, carers and people living with learning disabilities have been campaigning tirelessly to find out why they were not being prioritised for the COVID-19 vaccination. adio presenter, o hiley, first brought attention to the challenges her family have faced after she was called for her vaccine, whilst her sister Francis, who has a learning disability and diabetes, had no news on her vaccination. In the days following, Francis was admitted to hospital with coronavirus after an outbreak at her residential care home; thankfully Francis has now returned home and is recovering.

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Sharing in the dismay of Jo and her family was writer, Ian Rankin, whose son has a profound learning disability.

Speaking to The Guardian he said: “Sometimes it needs someone with a public voice to come forward and then people take notice.”

ROLL OUT As a devolved issue, people in England faced the biggest barriers. Scotland announced on 22 February that everyone with a learning disability would be priority in the next phase of their vaccination programme.

The Welsh Government and English Governments have since followed Scotland. On 24 February, the Joint Committee on Vaccination and Immunisation (JCVI) updated their advice on vaccinations, meaning that everyone with a learning disability, named on their GP’s Learning Disability Register would be called to receive the vaccination; 150,000 people with learning disabilities will now be prioritised for the vaccination in England. In response to the news, Minister for Care, Helen Whately said: “We are determined those more at risk from COVID should be vaccinated as soon as possible.”

It is advised you phone your local GP if you feel you should be prioritised for the COVID-19 vaccine. Further advice is available from Mencap (www.mencap.org.uk), Sense (www.sense.org.uk) and the NHS (www.nhs.uk).

CALLING ON CREATIVE DIVERSITY with June Sarpong

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Interview

For decades, disabled people have been left underrepresented on and off screen – until now.

The BBC’s Director of Creative Diversity, June Sarpong is trailblazing diversity in the media, she spoke to Lorne Gillies about the attitudes she is hardwiring How did you initially get involved in the BBC’s Creative Diversity department to spearhead representation in the BBC? This is an area I have been passionate about most of my working life, one because much of it impacts me personally, and because I believe it is bettering the industry. We are making better storytelling, which makes for better output and, in a way, our industry has a really important role to play in terms of educating audiences, particularly around disability where there is so much ignorance.

We know the data suggests over 60 per cent of the British public feel uncomfortable talking to a disabled person, these are all the things we have to try and undo. I believe one of the best ways to do that is through creativity.

What more do you think needs to be done to end that feeling of discomfort to encourage discussion?

Awareness. Before we even get to that, there is so much ignorance around what is considered offensive to begin with.

Considering how big a chunk of the population the disabled community is, there seems to be a lack of integration in terms of how fully embedded disabled people are into everyday society.

The release of the Creative Diversity plan in December 2020 showed a clear path for representation in the BBC. In what way are you focusing on disability representation?

Our reframing disability work is what we are doing around representing disability and really galvanizing the industry and educating where needed.

We announced in our report that we’re launching our Disability Content Panel.

This will comprise of internal and external stakeholders to really help guide and educate our commissioners on the area of disability portrayal.

We’re really excited about that; we’re

loo ing to convene the first grouping in the next couple of months. Additionally, we have the Elevate team and the Disability Passport; the passport is, at first, ust for us, but the real goal is to be able to make it industry wide so when disabled talent begin work with a broadcaster, they’re not having to ask time and time again for their reasonable ad ustments it is ust clear what their needs are.

I think, wouldn’t it be lovely to lose that conversation so you can ust get onto the conversation about the work itself.

the audience response in terms of the amount of people who said that they learned something new about disability, their opinions changed, and they felt they had a greater understanding was so high. The reach and ratings of those programmes was wonderful, for me, that is a really good example and it needs to become the norm. What that whole spate of programming has done is it has demonstrated that there is an audience, mainstream, broad audience that also want to see these stories relating to disability.

Why is hearing lived experience from disabled people in the Disability Content Panel so integral?

We have programmes like our Content Commissioning Scheme which has been focused on bringing Black, Asian and Minority Ethnic (BAME) and disabled creatives into commissioning teams, and helping to upskill them to become commissioners, not ust for the but the industry as well. But, we still have a long way to go in terms of the actual members that are on teams.

It’s something we can do to help in terms of portrayal. These panels are so important for doing that, because there is nothing like hearing from someone with lived experience. I know myself there are many areas where it comes to disability that I am still learning and I have to be humble enough to ask people that know, and that is the purpose of the panel to support our commissioning team. We’re really excited about it.

There is no denying the positive steps being taken in the media, but where would you like to see representation in the ne t five years I would like to see more disabled leadership; that requires going out and finding the talent and giving them the support they need so people are hired based on talent and anything else is secondary, because the system is in place to provide that. I would like to see more disabled writers and directors behind the camera, too, because they will create stories and leading stories for disabled talent.

The BBC had a big disability awareness campaign during the 25th celebrations of the Disability Discrimination Act with dramas, documentaries, discussions and news packages: what was the response from audiences?

I’ll tell you something that I am most proud of: from the disability programming we had late last year,

Read our full interview with June Sarpong by visiting the website, www.enablemagazine.co.uk

For disabled creatives, what advice do you have for them?

Develop your craft and become part of the community, because sometimes it is strength in numbers and it won’t seem as isolating. ind the first place to get your pro ect green lit if you are a writer, for directors there are now programmes in place to provide an entry route, find these because they do work! A lot of our disabled and BAME talent have come from an entry route, and they deliver results. We do have a long way to go before we get the results we want, but this is at least part of the solution.

FOR MORE INFORMATION

You can read the full BBC Creative Diversity report and how £100m will be spent commissioning diverse and inclusive content online (www.bbc.co.uk).

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TAKING ACTION for

young carers

In 2021 we mark a shift for young carers as they demand action to protect their futures. Ahead of Young Carers Action Day, we discover how we can all act to support young carers across the UK

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ach year, the responsibilities and needs of young carers are highlighted on Young Carers Awareness Day, but this year the day has a new name that carries a powerful message: Young Carers Action Day (YCAD), taking place on 16 March 2021.

With the theme of protecting young carers’ futures, the day is calling for measures to better support young carers and their ambitions, and now includes young adult carers, aged 18-25, along with young carers who are under 18.

Rachael, who is 18 and cares for her step dad who has motor neurone disease (MND), was part of a steering group that was integral to the name change and theme for 2021.

“The day is to allow young carers to share and express their opinions,

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enable care the issues facing them, how they feel support should be put in place and have a say in their future which is extremely important,” expresses Rachael.

young carers: we don’t just want to see awareness we want to see action.”

EDUCATION

As a young adult carer whose voice has helped influence this year s theme, Rachael’s main concerns lie around The name change is more than a word action in education and employment. swap, it shows that action is needed to “It’s important for schools, be put in place for young carers. employment, and to the general public “Awareness is good but it’s only as well. I feel like people don’t awareness, there needs to be understand what young carers go change with that; awareness through on a regular basis so can only do so much,” most support isn’t in place,” explains Rachael. “For Young Carers reveals Rachael. “People me, it’s not about one Action Day takes forget they are very strong, day of the year that independent individuals marks YCAD, I volunteer place on and have so many skills at throughout the year with 16 March 2021 a young age which should several different carers’ be recognised by schools and centres and organisations employment.” so I personally will be doing Carers Trust share concerns what I would currently be doing around education as research shows that every day.” young carers often achieve one grade Rachael’s thoughts and concerns are less at GCSE than non-caring young shared by Carer’s Trust who run the day. people, Laura says: “That can affect their “It is about raising awareness of young mental wellbeing, it’s not good to know carers across the UK and part of that is that you could have done better than you wanting to create meaningful change for did and it can affect your future if you are young carers,” offers Laura Bennett, head not able to get into college or university of policy at Carers Trust. “We want to or the job you wanted to get because of talk to decision makers who are deciding that.” things about young carers and we want The charity’s concerns also link to the young carers to speak to them so that attendance of young carers whose school they can tell their stories. life could be disrupted due to their caring “Many more people have an responsibilities or the health of the understanding of what a young carer is, person they care for. but we are not seeing a lasting trend for

DEMANDING ACTION

“In all parts of the UK, young carers have the right to their own assessment support but when it comes to support at school we are concerned,” admits Laura.

“Young carers need more so we would like to see schools do more, we would like schools to be monitoring what’s happening with young carers, to monitor attendance and attainment.”

BREAK If these concerns are not addressed and additional support isn’t given, it can lead to poor mental wellbeing for young carers.

“There’s a lack of support for young carers going into adulthood, especially for the transition from high school off to college or university,” emphasises Rachael. “It’s so important because if you’re moving away from home that can be very scary and daunting.

“The transition from high school to college was scary for me, I didn’t know what support was in place for college, I had no idea they even offered it and I wouldn’t have known if someone didn’t tell me.”

Concerns around education and mental health have been exacerbated during the pandemic and lockdowns where young carers may still have access to a school place but are unable to attend due to their caring responsibilities.

“Not all young carers live in poverty but many do and we have concerns about digital access, not everyone has a private space to work or a device to access the internet, so there are lots of concerns for young carers about the ability to manage education,” reveals Laura. “We also did a survey of young carers last summer about their experience of the pandemic and that showed the time they spend caring has massively gone up so it also means less time to spend on school work.

“School is not necessarily a break, but for many young carers that is the time they have outside the home where they can see their friends and they can get support like counselling: a lot of those services moved online for example but it can still be difficult if you don t have a private space.”

Young carers are preparing to share their experiences and demanding change.

You can help protect young carers’ futures using #YoungCarersActionDay on 16 March.

FOR MORE INFORMATION

Young Carers Action Day is run by Carers Trust, to get involved visit, www.carers.org

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FORD PUMA MILD HYBRID

PUMA ECOBOOST MILD HYBRID GET THE FREEDOM TO EXPLORE WITH THE FORD MOTABILITY SCHEME

Use your Mobility allowance to choose from a wide range of Ford vehicles at our network of participating Ford dealers across the UK. Dedicated specialists will listen to your needs and help you through every step of the process to find your perfect Ford vehicle. To find out more, visit ford.co.uk/motability or call 0345 60 40 019.

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Available on selected Dealer stock only. Please contact a participating Ford dealer for more information. Model shown is a Puma ST-Line, 5 Door, 1.0 EcoBoost 125PS mHEV, Manual, Petrol with optional ‘Desert Island Blue’ Exclusive Body Paint. Fuel economy mpg (l/100km) (Combined): 50.4 (5.6). CO2 emissions: 128g/km.

Figures shown are for comparability purposes; only compare fuel consumption and CO2 figures with other cars tested to the same technical procedures. These figures may not reflect real life driving results, which will depend upon a number of factors including the accessories fitted, variations in weather, driving styles and vehicle load. This programme is subject to the standard conditions of the Motability Scheme hire agreement. Full written details and quotations available on request from a Ford Authorised participating Dealer of Motability Operations Limited. Motability Scheme vehicles are leased to customers by Motability Operations. Motability Operations Limited is authorised and regulated by the Financial Conduct Authority under reference number 735390. To qualify, you must be in receipt of the Higher Rate Mobility Component of Disability Living Allowance (DLA), the Enhanced Rate Mobility Component of Personal Independence Payment (PIP), the War Pensioners’ Mobility Supplement (WPMS) or the Armed Forces Independence Payment (AFIP) and applications must be made with participating dealers between 1st January and 31st March 2021.

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Spotlight on

UNPAID CARERS Carers play an important role in the community, providing high level of care and support for a loved one. Despite this, many unpaid carers are not celebrated or recognised. It is time to shine a light on our carers

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cross the UK, in a single day, 6,000 people will become an unpaid carer – that equals over 2 million people each year. During the pandemic, many people will have faced further responsibilities with their care with little to no respite (see page 22), and some people will even realise that they are in fact carers or started providing care that wasn’t previously required.

Carers are providing a wonderful service behind closed doors. Ahead of this year’s Carers Week (taking place from 8 to 13 June 2021) and due to the ongoing pandemic, it is essential to celebrate and highlight the important work of all unpaid carers.

SAVING Dispensing medication, supporting a loved one’s mental health, personal hygiene to carrying out tasks such as cleaning, cooking and shopping: unpaid carers are a saving grace for the people they provide care for. Similarly, carers save the economy a significant of money with their caring responsibilities. n fact, figures released by ge revealed that over 80s save the UK Government £23 billion a year through the

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responsibilities unpaid carers have, care they give loved ones. Unpaid carers some of the devolved governments have also save the economy £132 billion per also launched additional funding. The year, an average of £19,336 per carer.

Scottish Government (www.gov.scot) has his figure is sure to rise as we, slowly, announced an additional £750,000 to be recover from the coronavirus pandemic. invested in local carer centres to As of June 2020, 4.5 million support unpaid carers of all people across the UK became ages. unpaid carers in a matter of 4.5 million The UK Government weeks in the initial stages of people across has also pledged a £269 the pandemic. his figure is million boost into the the UK became in addition to the 9.1 million health and social care unpaid carers that were unpaid carers from sector, however, it is not already completing caring June 2020 yet clear how this funding roles prior to the pandemic. will support unpaid carers.

Despite the uncertainty, HELPING HAND funding will be made available at Carers can come from all walks of life, a local council level and unpaid carers are can be any age, and have a range of encouraged to come forward. responsibilities. From caring for a loved Unpaid carers are the hidden heroes one with dementia, MS, a parent in a in our community, and through the wheelchair, after stroke: caring can, at challenges of the last year it is important times, feel isolating. to know you are not alone and you are Charities and organisations are appreciated. on hand if you have found yourself providing care to a loved one. Carers UK and Carers Trust have a plethora of information; Age UK and Alzheimer’s FOR MORE INFORMATION If you are a carer, support can be found Society (forum.alzheimers.org.uk) also at Carers UK (www.carersuk.org), Carers Trust have community groups where you can (carers.org), Age UK (www.ageuk.org.uk). connect with other carers.

In a bid to recognise the

Alan and his Nissan X-Trail Motoring Freedom with Lookers Motability ALAN WAS A SOLDIER FOR MANY YEARS BUT WAS FORCED TO GIVE UP HIS DUTIES DUE TO A LEG INJURY. HIS NISSAN X-TRAIL HAS GIVEN HIM MOTORING FREEDOM. The spacious boot is able to carry his scooter, seat, battery and basket and the cabin offers excellent driver comfort and accessibility. Alan has dealt with Martin, the same Lookers Motability Specialist, for several years and is always happy with the advice and recommendations he makes. Alan regularly goes out for a drive to unwind and he says his Nissan X-Trail has made him ‘fall in love with driving again.’

BENEFITS OF MOTABILITY • Customers can choose from a range of brands which can be adapted to suit their needs.

• Running costs including; servicing, maintenance, breakdown cover, tyre repair and replacement and windscreen repairs. All you need to do is add fuel and go.

What is Motability ?

The Motability scheme is a government funded scheme which allows motorists to lease a new car every three years. Cars can be adapted depending on the customers’ requirements and motorists can supplement the allowance towards a new car if they wish.

• It gives customers the accessibility and freedom to fully access day-today activities.

• Your vehicle can be insured for up to three named drivers (this doesn’t have to be you).

Trained Motability Specialists We have over 700 trained Motability Specialists Nationwide who will be happy to help you find the right car for your needs. Not all disabilities are visible and so we strive to tailor your experience to your specific needs. If you would like to call ahead, we can plan your visit together.

To find out more about Lookers Motability, including the locations, brands and models available, visit our website and get in touch to arrange a meeting to discuss your requirements further. We would love to meet you and help you find your ideal Motability car...

• Available in UK wide locations.

• Customers can select a new car every three years.

“

It’s a fantastic scheme, and one I would recommend to anybody.

” n MacNamara

Ala

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love THE GIFT OF Unconditional

Starting the journey as a parent is one of the most poignant and emotional moments in a person’s life. Raising a disabled child, each day is a learning curve, and the power of community cannot be ignored

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hildren are a wonderful addition to any family, watching your ‘mini me’ develop, flourish and grow into their own person. or families raising disabled children, there is no parenting boo and it can be, at times, an isolating experience but you are not alone.

DIAGNOSIS elebrating the birth of aara, ee Patel and her husband s rainbow baby after the loss of their first daughter maari, the couple were overjoyed to welcome a new baby girl into the family. t six months old, aara began to regress and forget how to roll and do other milestone movements for a child her age. efore long, aara was admitted to where doctors discovered she had a rare form of childhood epilepsy called infantile spasms, which comes with further complications. e were so worried and confused, so isolated and alone, so upset and angry that this was happening to us, says ee.

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hilst pregnant with triplets, harlotte aw ins went into early labour at wee s re uiring an emergency section. Shortly after delivery, harlotte s son heodore re uired resuscitation and experienced a brain bleed and brain damage. is brother, aphael also had a bleed on his brain. t was a bitter sweet moment because had my babies but didn t feel li e celebrating because they could be ta en away from me, explains harlotte. ou go into survival mode. oth boys now live with cerebral palsy, with heodore re uiring more support. or some families, however, a diagnosis can come later on in a child s

That little person is looking at you, they need to see you smile

life. arren Scott and his wife manda learned that their daughter Sophia has a progressive genetic disorder called Sanfilippo Syndrome, which is, unfortunately, a terminal condition causing behavioural issues, mobility issues and can be related to a childhood form of dementia. arren admits t has ta en absolute years for this to sin in and it has ust bro en us, we will never be the same again. t is hard, we do watch Sophia decline regularly. She has lost a lot of s ills over the last two years, and there are now some physical issues as well. t has been a massive mental challenge but we do try to be positive and give Sophia the best life we possibly can. n a time of oy, some families may experience heartache and feel isolated from other new parents.

COMMUNITY ou do feel uite alone, because they are babies friends and family don t really see the impact, explains harlotte. t s not until they actually

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festivals in Sophia’s name, black tie events, to marathons, Darren has found support and solace when fundraising for charities such as Glasgow Children’s Hospital and MPS Society, where Darren and his wife have managed to meet other families whose child lives with Sanfilippo and work to raise awareness of the condition.

ACHIEVE

I don’t think people understand how much reaching out can help a family like us start growing you see the impact of the disabilities, because when they’re babies you can’t really tell.”

After reaching out to SmallSteps, a charity working to provide disabled children group sessions with their parents or carers to build on physical skills, Dee and Charlotte reaped the rewards of not only seeing their children progress but meeting others in a similar situation.

“We feel indebted to Small Steps,” enthuses Dee. “You can be yourself there, surrounded by parents who are facing similar issues and problems.

You can talk, share experiences, and information that otherwise you may not have known.”

Charlotte agrees: “You have a support network of likeminded parents. As a parent you can be yourself. If you want to have a cry or have a moan or ask a question, you

don’t feel like you are being judged.”

Darren, who has now become an expert in the field of Sanfilippo attending medical conferences across the world, has felt the support has been minimal for this condition.

Even so, Darren continually works to raise money, and has discovered a community pushing him forward with Sophia’s journey shared online (Facebook @HundredsofPromises.

TeamSophia).

“It’s the support that means more to us than the money. We know it is physical to get out and do this, but mentally, it is nice to read that we’re not on our own.

“I don’t think people understand how much reaching out can help a family like us. People will never know just how much popping around for a coffee is appreciated.”

From running two Highland

Despite the hurdles that come with raising a disabled child, there is no denying the love and utter joy a child can bring. Darren enthuses: “It’s Sophia that keeps us going, we don’t keep her going. Sophia is an absolute bubble of love and energy; she has the biggest belly laugh and the brightest eyes. She is just full of love and affection.”

Charlotte agrees, watching Theodore learn to sign and use the bathroom, she enthuses: “He is so proud of his achievements. Sometimes it does make us sob because we just never thought it would happen.” And aphael is flourishing, too, as he is now keeping up in mainstream school, making friends and is reading and writing.

Through the highs and lows, if you are adapting to a new diagnosis, Dee advises: “Be kind to yourself as you are doing an amazing job. You are your child’s world so when things get tough, remember that.”

Don’t be afraid to ask for help, and most importantly, take time to look after yourself. Darren adds: “Take some time for yourself; you’ve got to try and have some balance. Ultimately, that little person is looking at you and they’re not looking at anyone else.

They need to see you smile.”

FOR MORE INFORMATION Further support and advice is available from Small Steps (smallsteps.org. uk), Scope (www.scope.org.uk), Glasgow Children’s Hospital (www. glasgowchildrenshospitalcharity.org) and MPS (www.mpssociety.org.uk).

Visit our website for extended interviews with the parents featured and additional experiences, www.enablemagazine.co.uk enablemagazine.co.uk

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END THE STIGMA WITH DR ALEX GEORGE

Frontline A&E doctor and Love Island star, Dr Alex George has been using his influence to advocate for better mental health care. Alex speaks to Enable about his newly appointed role as Youth Mental Health Ambassador

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fter the loss of his younger brother, Ll r, to suicide, Dr Alex George used his platform to campaign for change and in January of this year, Alex posted on Instagram calling for a meeting with Prime Minister Boris Johnson to discuss mental health support.

One month later, Alex was named as a mental health ambassador.

Within your new role as the UK Government’s Youth Mental Health Ambassador, how will you be using your professional and personal experiences with mental health to make a difference?

It gives me an insight into the different areas of mental health. I’m not here with a PhD, I’m not a consultant psychiatrist, I’m yet to meet a person who doesn’t have mental health. I have experience from my professional life and, obviously, what has happened in my personal life with losing my brother: that gives me a focus and some understanding of how important the issue is.

I think a lot of other things can be learned in terms of skill and knowledge, you can bring in specialists and experts in particular areas and combine those with my platform, hopefully I can do some good things.

In what way do you think we need to prepare for a mental health crisis due to the pandemic?

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PHOTO: JESSIE WHEALEY

FOR MORE INFORMATION

SAMARITANS www.samaritans.org 116 123 jo@samaritans.org MIND www.mind.org.uk 0300 123 3393

For everyone, we have experienced so much hardship over this year and it doesn’t matter who you are and where you are from It has been so hard on all of us, definitely, in the next few months and years particularly for frontline staff as well it is going to be very tough. My concern is: what will be that impact for people’s mental health? Do we have the support services to make sure we can do all we can?

PAPYRUS www.papyrus-uk.org 0800 068 41 41

What do you wish more people understood about mental health?

Firstly, we all have mental health just like we all have physical health, and the two are very intertwined.

Moving forward I would love to change the stigma around mental health, not only in terms of talking about when you are struggling, but how positive it is.

There is always hope for a better day

Finally, what advice do you have for our readers?

There is always hope for a better day, even as dark and hard as things can seem at the time. There is always that hope. he first and hardest thing that we often hear, but it is so true reaching out for help and spea ing.

I’ve never met anyone who had a ‘perfect’ life, we all have ups and downs, we all experience mental health there is no shame in that: we just need to help each other through it.

Respite services have been directly impacted by lockdown, leaving people without vital relief. We speak to Mencap and care provider Dimensions about what families are facing and changes required as restrictions ease

THE VALUE

Respite OF

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n November 2020 seven in 10 families who’s loved one with a learning disability usually received short breaks or respite, said that safe access to these services would have improved the quality of their loved one’s lives during the first loc down .

A year on, families continue to struggle with additional responsibilities they have taken on and the lack of respite available to them throughout the pandemic.

“From a position in which they were already under supported, we were seeing that things were getting even worse as a result of COVID,” explains James Robinson, social care policy lead at Mencap www.mencap.org.u . espite provides what some people call a lifeline: the value of short breaks is in helping keep families together to ensure they can manage their caring responsibilities.

In the same survey carried out by Mencap, 74 per cent of families said short breaks or respite that their loved one would usually receive had stopped since the pandemic started.

LIFELINE

*SOCIAL CARE CUTS FOR PEOPLE WITH A LEARNING DISABILITY LEAVES FAMILIES STUCK – MENCAP SURVEY (10 AUGUST 2020)

“We’re talking about long term reductions in care and additional caring responsibilities for carers, not being able to get out, many are having to shield with their loved one and that’s the absolute value and importance of respite care and short brea s, stresses ames.

Short breaks and respite provide a pause for carers, but they also offer an opportunity for the person they care for to meet others. his lac of access during the pandemic has had a detrimental effect on carers and the people they support.

“You can talk about things like behaviour becoming more challenging but actually there’s also things about people’s social skills and their ability to meet other people and the happiness that goes into that, worries ames. here socialisation isn t fulfilled with respite, disabled people have often been unable to connect with friends or loved ones during the pandemic, having a greater effect on their overall wellbeing.

“For an awful lot of people whether they have got a learning disability or not, this year has been challenging in terms of maintaining friendships,” emphasises uncan ell from imensions www. dimensions u .org , an organisation providing respite for adults with a learning disability.

ROADMAP hese problems existed before the pandemic but have been exacerbated by multiple lockdowns and now there are concerns that social care cuts will worsen the situation for many families across the .

“Even before the pandemic we had serious concerns about the level of support people with a learning disability and their families were receiving, there’s lots of worries about squeezing budgets, about reductions in social care support that has been happening,” reveals ames. hat we would really want to see as a matter of urgency is to ensure that families are supported out of the pandemic because once lockdown ends it doesn t mean it s the end of difficulties. here s a real fear that when it ends and people get back out again, they forget how difficult it was and is for

If you take away things like respite care and day centres, the people at the sharp edge of that are carers people with a learning disability the fact that this is happening on a regular basis. he prospect of social care cuts is more than a concern for families: it puts services themselves at ris of collapse. hat needs to be recognised and factored into any plans to come out of this pandemic and we need to see funding provided, resources provided, prioritisation of these services,” stresses ames.

Some services, like Dimensions, have been able to run services but at a limited capacity, limiting services that would normally support a small group to oneto one contact. here are things where we have had to restrict the amount of support on offer and the one in particular is the respite and day support,” explains uncan. ith respite all of our services remained open for crisis support and they have also had the ability for booked and planned stays but at a lower level.

STRUGGLES Increased caring responsibilities, concerns around cuts to social care and the uncertainty around the pandemic has led to great concern for the health of families who are caring for their loved one. n response to a survey conducted by Mencap in August 2020, 59 per cent of families who have had their short breaks or respite support cut do not agree that they have felt completely able to cope with supporting their loved one during the pandemic.

“We’re hearing their needs are escalating and they are finding things very challenging; it’s about finding that balance of supporting that individual and giving time to yourselves as a family and we know families are struggling,” expresses ames. Parents mental health is going to be in difficulty so these services need to be up and running as soon as its safe and possible. hese concerns are greater for families who’s loved one may have received support in a day centre or supported living previously, but made the decision to move them home on the assumption that this would be for a matter of weeks, not a year.

“We need to be clear that an awful lot of families had a tough time because of the level of service,” stresses uncan. here s no question that families have borne the brunt of a lot of challenges around COVID, those families that would normally see loved ones in a day centre setting or intermittently at short breaks have had their loved ones home .

Ensuring you take the time to care for yourself whether it is connecting with people in a similar situation online through carers groups and services, or getting outdoors for some exercise, can feel li e a form of respite in itself. f you are struggling without respite, it is important that you reach out – there is help available from a range of organisations.

FOR MORE INFORMATION

Mencap (www.mencap.org.uk), Contact a Family (www.contact.org. uk), Carers Trust (www.carers.org) and Dimensions (www.dimensions-uk.org) can provide guidance for those in need.

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3

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s we pass the year anniversary of the first nationwide lockdown, there is a greater strain on mental health that many people may have never experienced before. This means that seeking guidance and making time to care for your mental health is essential.

INCREASE

Caring for your mental health The toll on our mental health has reached new heights throughout the pandemic. As periods of isolation continue for some, we look at the tools and resources that can help if you are experiencing signs of mental illness

Mental health charities have experienced greater demand for their services since the start of lockdown and the pandemic, coinciding with growing concern from experts in the area.

“There’s an increasing number of people with suicidal thoughts, questions about self-harm, and also people having issues with self-isolation, and additional aspects like people having to care for somebody who has a mental health problem for the first time, explains Dominic Horton from the advice and information team at Rethink Mental Illness (www.rethink.org).

A wider range of people are experiencing wellbeing or mental health issues as a consequence of the pandemic, leaving organisations like Rethink and the Mental Health Foundation (www.mentalhealth.org. uk) to stress the importance of early intervention.

“Many things that can have an adverse effect on people’s mental health have been made worse by the pandemic, this has included financial and housing worries, job insecurity, food insecurity, disconnection from our usual support networ s, emphasises r avid Crepaz-Keay, head of applied learning at the Mental Health Foundation.

“For some people, there has been additional difficulties as a result of home schooling or additional caring responsibilities; people are spending more time together in their households and this may be putting additional strain on their relationships, adds avid.

In this situation it is important to remember that stress and anxiety are a natural response to perceived danger,

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FOR MORE INFORMATION

SAMARITANS www.samaritans.org 116 123 EVERY MIND MATTERS www.nhs.uk

often reminding us to wear a mask, wash our hands and social distance when we need to.

When these feelings start to take over daily life it is time to reach out to an organisation or the people around you and ask for support.

RELATIONSHIPS Relying on digital means to maintain the relationships you valued most before the pandemic can sometimes be stressful, but reaching out to someone you trust to talk about your situation will help take a weight off your shoulders.

“For some people it can help to set up regular calls because then you know at this time you are always going to speak to that person instead of not wanting to trouble them,” suggests Dominic. “It is important to stress that you can be in a social bubble if you live alone or someone you know is alone, and you can travel across counties or local authority areas to see the person you are in a bubble with.”

If you are worried about someone you know or the person you would usually care for, take time to check in with them and offer help if they need it.

“Give them a call or drop them a

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Remember to be kind to yourself as well as others

about the end of the pandemic, instead think ‘what do I need to get through today and this week,’ and try to just concentrate on the immediate term.”

Thinking about what hobbies you have enjoyed throughout the pandemic can help you to understand what makes you feel calm if feelings of anxiety arise.

“There are a few things you can do to support your own and other people’s mental health: develop a healthy routine and stick to it; continue to eat and exercise as well as circumstances allow; good sleep is important for your mental health and so is social contact,” reveals David. “Try not to be overwhelmed by the news or social media and limit your exposure to these if they increase your anxiety.”

In some cases, creating a routine is a key part of looking after your mental health and can help you to feel in control when there is uncertainty.

“For a lot of people routine can be really useful: if someone is experiencing low mood, sometimes it might be difficult to motivate themselves to get something done and that can then have a knock-on effect by making their mental health worse, if you have a routine every morning then it forces you to do it, but also after it will often improve your mood,” explains Dominic.

IMMEDIATE HELP note and remember to be kind to yourself as well as others,” advises David. “People with existing support networks should maintain contact with these.”

If you are in a situation where it is difficult to have a private conversation, there are other ways you can care for your mental health.

TOOLS t s trying to find what wor s for you in terms of relaxing and what works in terms of your wellbeing,” offers Dominic. “Looking at general self-help can often be useful so maybe using mindfulness, meditation or breathing exercises can help with anxiety and wellbeing.”

Dominic also advises not to look too far into the future and focus on getting through each day at a time, he says: “Don’t set longer term goals and think

f you find that these tools don t wor or you feel like you need greater support, know that you are not alone.

“Firstly, go and see the GP so you can not only get advice and help, they can offer medication choices and explain about lifestyle advice and getting talking therapy,” advises Dominic. “It’s important to understand the GP deals with mental health all the time.

“People think about GPs and going to see them for physical health problems, but over a third of GP appointments have to do with mental health on some level.”

Reaching out for support and making small changes to your daily life are great first steps to improving your mental health. If you are already with an NHS mental health team you can reach out to them for additional support, or you can call a helpline like the Samaritans at any time for free, immediate guidance.

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THE CALL FOR ACCESSIBLE HOUSING “The social model of disability says that people are disabled by barriers in society not by their impairment or difference.” Our columnist Ade Adepitan reflects on this statement for disabled people finding a home

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wish that statement could be put up on the walls across the UK. It may not have the immediacy of Black Lives Matter, carry the historical weight of Emmeline Pankhurst’s “Deeds, not words”, or even have the simplicity of Pride: but, it explains why so many disabled people have felt marginalized by society, and why nearly half of all people living in poverty are either disabled or live with someone who is.

One of the most egregious barriers to the wellbeing of people with physical impairments is housing. I grew up in Britain during the ’80s and ’90s, in a tiny two-bedroom council house in Plaistow, East London. At the time I didn’t think much about the standard of our accommodation.

I used to bump down the stairs on my backside and crawl up them on all fours.

As an eight-year-old, I thought it was fun.

In my head our stairs were an Olympic assault course; my sister would time my ascent and descent whilst I tried to break my own world records. I’m sure millions of disabled people around the UK could tell similar stories.

However, nearly forty years later I was once again frantically bumping down the stairs on my backside, this time in the house that my wife and I had bought in West London prior to my debut appearance on Children in Need.

An hour later I was live on air; it felt surreal as my co-host Graham Norton delivered his opening lines. I wondered if he, or any of the people up and down the country, had any idea what I and millions

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Finding an accessible home in the UK is almost impossible

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BLOCK

of other disabled people had to go through every day of our lives, just to get to work.

ACCESS f you have a physical disability, finding an accessible home in the UK is almost impossible. Research carried out by disability housing group Habinteg (www.habinteg.org.uk), investigated policies local planning authorities have in place for development in their area up to 2030. They found only one per cent of new homes across England were due to be built with wheelchair accessibility. This leaves over half a

Further accessible housing advice can be found by visiting Ade’s website, forever.casa enablemagazine.co.uk

million wheelchair users living in homes that are not accessible or having to buy a do-a-up-a and spend more money just to make it suitable.

I’ve heard people say that once we get past COVID it will be a chance for a new beginning, an opportunity to restructure, creating a fairer more caring society.

Sadly, I think this will only happen if we get a crop of leaders, on all sides of the political divide, who possess the will, the imagination and the desire to remove the everyday societal barriers that hold back over fourteen million registered disabled people in the UK.

Keep up to date with Ade by following his YouTube channel, Adepifam, www.youtube.com

PHOTO: © IAN WALLMAN

Ade Adepitan

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Sirus’ range now includes: Sirus Ford Drive X New for 2021 - Based on the Ford Tourneo Custom, this rear entry drive from wheelchair vehicle offers space for up to six, with flexible seating and storage options. The driver’s position is ergonomically designed to mirror the position intended by Ford giving you optimum comfort and vision. This brand new vehicle is the ideal choice for taller wheelchair users.

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The

new normal Lockdown has had a ripple effect on all our routines, but for autistic young people it can be even more challenging. Sticking to a routine as much as possible can have a positive impact on development and mental wellbeing in these strange times

LEARNING “This year has been quite crucial for both of them,” emphasises, Holly and Katie’s mother, Jo. “Holly, who is preparing for her GCSEs this year, is very ambitious and hardworking; she always has her head down in school.”

Lockdown has left Holly with a loss of routine that came with going to school, and the loss of interaction with teachers. Jo adds: “I think Holly feels a little bit let down in the sense she

is missing out on an opportunity she should be getting.”

For Katie, who is in her first year of GCSE education, lockdown has been, in some way, a positive. “Katie doesn’t like going into school, she is very quiet and has delayed processing,” explains Jo. Although incredibly academic and an enjoyment of learning, due to Katie’s delayed processing, she can find it challenging when a teacher asks a question on the spot, leading her to freeze and unable to respond in time.

“She just finds the school environment very overwhelming.

“

I think it will be difficult for Katie back in the school; she likes the anonymity

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losing into a year of working from home for prolonged periods of time, lockdown has changed routines and how we work. For some, working from home is something to easily adapt to, but for others it comes with new challenges.

Holly and Katie are two young women, working their way through critical years in their education, with varying attitudes towards home learning.

As autistic teenagers who struggle in social situations and have sensory issues, working from home has had its benefits. But the lack of structure and routine to the girls’ daily life was hard to adjust to.

“Katie doesn’t want to go back to the normal classroom environment because for her, that screen filters off what Katie doesn’t like about school,” Jo continues.

Katie and Holly are just two amongst thousands of children and young people who have been affected by the pandemic. Both are studious and enjoy school – albeit both in different formats – the changes in routine have been hard for autistic young people like Holly and Katie .

“With support harder to access and rules around coronavirus and lockdown constantly changing, it’s been incredibly hard for autistic young people to navigate their way through this pandemic,” explains Jolanta Lasota, chief executive of Ambitious about Autism.

“In education, for example, many autistic young people already struggled to access the right support in order to learn successfully before the pandemic.

This resulted in many missing large chunks of education.

“The pandemic will have only made this worse, and without the right support to transition back into school life before coronavirus, autistic young people are at very high risk of falling out of education altogether.”

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SOCIAL SKILLS

MENTAL HEALTH In a survey carried out by Ambitious about Autism, featuring 2000 autistic children and young people and their parents and carers, three quarters of respondents (75 per cent) said they felt more anxious since the pandemic and over half described feeling stressed (56 per cent) and overwhelmed (54 per cent) during the pandemic.

Jo explains that Katie and Holly have, thankfully, not experienced adverse mental health implications due to the pandemic, but boredom has certainly

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“

played a part. Even so, it is important to support young people as we transition back into the school environment, easing of restrictions, and, ultimately, further change in routine.

“Uncertainty and sudden change can immediately increase anxiety and stress for autistic young people,” emphasises Jolanta. “This can trigger or exacerbate other problems.”

But support is available from organisations including the National Autistic Society and Ambitious about Autism; both of whom have services and materials online to help with learning from home, supporting a young person’s mental health and adapting to life postpandemic.

“Take the time to get to know your kids a bit more, enjoy your children,” advises Jo. “Get them involved with home life, get out and get some fresh air, Katie and Holly like reading, art, and piano; even reducing screen time can all be beneficial for wellbeing.

Together, we can support young autistic people as we transition into a ‘new normal’ routine.

Uncertainty and sudden change can immediately increase anxiety and stress for autistic young people

“

Fortunately, Holly and Katie, who attend a mainstream school, enjoy learning and have adapted to learning at home. However, as both are not very social with their peers, lockdown may have had an impact on this core set of skills.

“I’ve got to be honest, neither of them is great when it comes to social skills,” explains Jo. “They have tried making friends, and they do speak to other children, but neither are good at forming close friendships. They can’t do chit chat unfortunately; they don’t have that connection with other children.

“The school has helped the girls to be more sociable. When they go back it will be harder, because they have lost even more and are now more out of touch with people they were already out of touch with, in a sense.”

Jolanta adds: “The fall-out from this pandemic will be long-lasting and will affect many areas of young people’s lives, from health and wellbeing to education and employment.”

However, Holly is preparing to move into Sixth Form focusing on subjects she is passionate about: maths and science, with ambitions to one day become an astronaut. Holly is excited about moving to Sixth Form and spending time with others who have the same interests as her. For Katie, it may be more challenging, Jo adds: “I think it will be difficult for Katie to go back to the school environment; she likes the anonymity.”

From change in routine to adaptations in learning, all young people are different and there is no denying the pandemic has had an impact on the mental health of young autistic people.

FOR MORE INFORMATION

National Autistic Society (www.autism.org.uk) and Ambitious about Autism (www.ambitiousaboutautism.org.uk) have advice available.

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Advertise with The Care Umbrella and enjoy your first three months of advertising completely FREE. What’s more, we’ll also follow this up with a three-month 25% advertiser’s discount.

With no tie-in contract or cancellation notice required, there’s nothing to lose! Take advantage of these huge savings today.

Visit www.thecareumbrella.co.uk to learn more, or send an email to sarah@thecareumbrella.co.uk

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CONNECTED FINANCE WITH STARLING BANK Toby Mildon

Starling, the UK’s leading digital bank, is paving the way for accessible banking, ensuring the disabled community are able to safely and securely control their spending while sheltering, thanks to the Connected card

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ommitted to ensuring help. t has made a big difference, says oby, who has hour support and has customers are financially relied on his support wor ers whilst safe and covered during he shields due to loc down. efore the pandemic, and beyond, the onnected card would have been Starling an offers a free second debit brea ing ban ing rules by giving my card – the Connected card – which can debit card and P to my carers. be given to people you trust to buy he onnected card removes essential items for you. a lot of the ris because e it a neighbour, carer instead of giving someone or S professional, this Starling personal your debit card, where card is simple to use, they have access to giving the account account customers everything in your holder spending can apply for a ban account, with control in their free Connected the Connected card Starling app. ni ue you can ust put a small features include bloc s card on their amount of money to one on spending online, Starling Bank app side so you now that you M withdrawals and are secure. gambling transactions.

With a designated Space Spending is capped at £200 where you can manage the amount and can be set lower. of money put onto the card, you simply have to order your free onnected card SECURITY to spend securely. aunched in pril , three wee s oby adds verybody wants into the initial loc down, the onnected financial security, but the difference card has been a huge success with over is if you re disabled and relying on , people using the card to aid somebody to go shopping on your their spending. behalf and pay on your behalf, that oby Mildon, a diversity and inclusion introduces an element of ris . his is expert who lives with spinal muscular removing some of that ris . atrophy has found the card to be a huge

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USER FRIENDLY s an app based fully regulated ban , Starling has many features that mean their ban ing has ease of use at the core for disabled customers. ith hour customer service over the phone or via text on the app, ideal for people who are deaf o or have speech difficulties, and voice control Starling is a smarter more human alternative to ban s of the past. ccessibility was one of the reasons started an account with Starling, says oby. Previously a member of a ban that re uired physical to ens in order to ma e and accept transactions it did not meet his ban ing needs. oby emphasises ccessibility is a ey selling point for a ban , it boils down to ma ing life easy. he fact it removes the ris when giving your card to people, then it is definitely worth loo ing into you might as well ust give it a go.

FOR MORE INFORMATION To learn more about the Connected card, and to sign up, visit Starling Bank, www.starlingbank.com

BEST BRITISH BANK

WINNER 2018, 2019 & 2020

PHOTO: BBC PICTURES

Independence and autonomy are integral, but for young people with a learning disability transitioning into independent living can be daunting. Katie Price and CEO of Mencap, Edel Harris speak to Enable about the all-important transition year

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arly this year, Katie Price gave the public a private and raw insight into her relationship with eldest son, Harvey during a BBC documentary.

The one-off documentary revealed the adoration and unbreakable bond both Katie and Harvey have, but it also put a spotlight on the challenges many parents like Katie face when preparing to support their child into adulthood.

Following Katie and Harvey as they look for a residential college that meets Harvey’s needs, alongside his interests, the documentary revealed the barriers many families experience when supporting their young person into independent living.

MOVING OUT “The decision to move out of the family home and into independent living is a big one, and not one that people with a learning disability and their families take lightly,” emphasises learning disability charity, Mencap’s CEO, Edel Harris. “But it is important to remember that you do not have to make the leap alone, there is support out there to help you.”

Harvey, who is autistic and has Prader-Willi syndrome and is partially blind, attends residential school from Monday to Friday, but he is preparing to leave this school in June as he has turned 18, meaning it is now time for Harvey to move onto college to gain further independence.

“I am looking for a college for him to go to full-time,” explains Katie. “But Harvey won’t be there all the time; he has the choice to come home. The next transition from 18 to 25 is to learn important independent skills.

“At weekends, Harvey and the new friends he makes at college may want to go to the cinema or go to a disco, so Harvey might not come home that

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Getting ind If there are particular areas you’re worried about, discuss these to see what arrangements could be made

weekend – this is so he has an option and independence. He can be an adult and have a choice.”

The positives that come with independent living are key: allowing people with a learning disability to discover themselves and move out of the family home and learn new life skills, like their peers will have the chance to make at the same age. It is about allowing people to have the similar lived experiences all young people desire.

Edel continues: “Getting the right specialist support can make a huge difference to the lives of people with a learning disability. It can help people learn vital life skills, make life-long friends and support them to achieve their dreams – whether that’s getting a job or pursuing a passion. [Independent living] can empower people to lead healthy and happy lives.”

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what arrangements could be made.” rom finding a flat without care to residential care, where a person will have their own flat alongside others with a learning disability and twenty four hour care, there is a solution to meet everyone s needs.

AMBASSADOR

ndependent OBSTACLES nfortunately, families can face obstacles when finding the right route to independent living, all the way down to support available. s a een artist, arvey thrives in the art department, but despite having a first choice of college, it is ultimately up to atie s local authority to approve arvey s application for funding. here is so much you have to do that didn t realise, still haven t found a college for arvey, yet, because of . t is certainly hard, atie stresses. verything changes now he is he s a man, he has a decision, but do ma e decisions with him. veryone has the right to live independently in their local community, and despite obstacles and barriers people may face, there is support

available. Mencap runs a earning isability otline alongside their online community, which has a plethora of information loo ing at supported living services to learning disability specific supported housing landlords, including olden ane ousing. del adds ecisions about care and accommodation can sometimes be difficult to ma e. hen loo ing into options, it s important to as providers how they oversee the care and support for people living with them, and how they include the views of the individual and their loved ones in this. f there are particular areas you re worried about, for example, care at night time or with specific tas s such as eating, then discuss these to see

Since the release of the documentary, Mencap has announced arvey as a new ambassador for the charity. arvey will be wor ing to raise awareness of learning disability and to help tac le bullying towards someone because of their learning disability. he ey roles arvey will underta e are yet to be revealed, but it is evident especially after the challenges people with a learning disability have experienced over the last months that unity is paramount. fter loc down, what we really want to see is people with a learning disability being empowered to ta e an active role in their local community and decide what changes they want to see to help them lead happy and healthy lives, enthuses Edel. ur new strategy, which we will be launching later this year, has this community led approach at the heart of it. loo forward to seeing what changes people with a learning disability want to deliver to tac le the barriers and discrimination they have faced and help ma e the world a better place. here is no denying people with a learning disability have faced hardship prior to and during the ongoing pandemic. ut, with improved awareness ranging from documentaries created by recognisable faces such as atie, to the tireless campaigning of charities, and people with learning disabilities, too, the tides could be changing to allow everyone a healthy, independent life.

FOR MORE INFORMATION

If you need support, you can contact Mencap’s Freephone Learning Disability Helpline on 0808 808 1111 or visit www.mencap.org.uk

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Are you living with sight loss?

Or do you know someone who is?

Our sighted guiding training offers practical tips and techniques to help you guide or be guided with confidence. Watch our videos online, or sign up for a virtual training session.

Find out more at guidedogs.org.uk/guiding A charity registered in England and Wales (209617) and Scotland (SC038979).

GD0375 02/21

amp fy

A Limbless Association Young Ambassador Project with Ella Dove and Special Guests

Freephone Helpdesk: 0800 644 0185 enquiries@limbless-association.org limbless-association.org @limblessassoc /limblessassociation @limblessassociation

The Limbless Association supports amputees throughout the UK to ensure no amputee need cope alone.

Our new AmpLAfy podcast is a series of honest conversations between amputees and professionals working in the limb loss community, hosted by journalist and writer Ella Dove.

The six episodes cover a range of topics that affect amputees in their recovery, rehabilitation and life beyond. This includes mental health, body confidence, phantom limb pain and the impact on family and friends as well as how to set goals and adapt to the future.

Listen now on all major podcast streaming platforms.

Charity No. England and Wales: 803533. Charity No. Scotland: SC042256

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On your bike with

FREE WHEEL NORTH The cycling boom has seen many discover a love of bikes, but for some disabled people cycling may not seem a viable option. One Glasgow charity is making cycling accessible to all Free Wheel North works to get everyone cycling

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stablished in 2008 by Norman Armstrong, Free Wheel North was launched to address social and environmental injustices in Glasgow, where the charity is based. Over a decade later, Free Wheel North is known to welcome over 40,000 people a year to their Cycle Centre at Glasgow Green – prior to the ongoing pandemic.

The ethos for Free Wheel North is that everyone should have access to cycling and be immersed in the mental and physical benefits.

INVOLVED “We have had a lot of new users with all different abilities, so I hope more people will be aware that they can come and cycle and get involved with cycling,” enthuses Free Wheel North’s project coordinator, Carol Thompson.

With over 30 different kinds of bikes, ranging from two-wheel bikes, fixed wheel tri es, two person bi es to wheelchair adapted bikes, to name a few, Free Wheel North is paving the way to ensure everyone in the community has a chance to ride with confidence.

Participants with multiple sclerosis, Down’s syndrome, wheelchair users, and other hidden and visible disabilities, regularly attend the Glasgow Green Cycle Centre, which sees them getting onto the track with support from staff and volunteers.

Carol continues: “People are just surprised at what they can do. Since we have different bikes, people often come down and say that they can’t do certain things, they think they won’t be able to ride a bike.

“Everyone just really enjoys it and has fun. I think it is fun that people don’t expect to have, they may be stressed about getting on the bike, but once people are on the bike it’s just a lot of fun and they forget everything else.”

THE RIDE Providing a range of adapted bikes, events and led rides, the charity is on hand to help

Norman Armstrong

build stamina, confidence, and to tac le isolation. Their led rides see people get involved in cycles of varying lengths.

“Free Wheel North is not a cycling club, you don’t even have to have your own bike,” expresses Carol. “Even if you do have a bike if you go out to ride alone sometimes it can be lonely. With the led rides we take people around the city to get to know the cycle paths, and people get chatting with other cyclists, which again helps people to prevent social isolation.”

Currently closed due to lockdown restrictions, when the track does re-open, it’s time to get on a bike. “Get in touch, and we’ll get you down to the track to try you out on different bikes and see what you can do and what suits you,” adds Carol.

“We have a range of bikes, and there might be a bike you’ve never seen before and it is just a case of trying it out.”

Are you ready to join the cycling revolution?

FOR MORE INFORMATION

Due to ongoing restrictions, the Cycle Centre track is currently closed, but visit Free Wheel North (www.freewheelnorth.org.uk) to find out more and when to book in.

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Strong, empowered, resilient: these are just some of the words that come to mind for Kelly Knox when she thinks about what it means to be a woman. In the lead up to International Women’s Day, we speak to the model, mother and activist

Celebrating women

Kelly Knox and her children

Kelly Knox with

OVERCOME The day is about celebrating the social, economic, cultural and political achievements of women, but it also marks a call for action in diminishing the barriers that currently exist. e face ine uality anyway, but as a disabled woman that marginalisation, inequality and under representation is all heightened, we have so many more barriers and have to work that much harder to prove ourselves, emphasises Kelly.

“I feel sometimes you get that label of disabled, and people ust thin of the negative words that associate with it,

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“ face You will

barriers, but you just have to keep pushing forward

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his International Women’s Day (IWD) the world will challenge the inequality and barriers that women face on a day-to-day basis. It is a key date in the fight for a gender e ual world, but for model and activist elly nox, March also marks a day of appreciation.

“I think it’s a celebration of all the amazing things women do on a day-today basis, explains elly. feel li e it s every woman’s birth right to have selflove and self belief, and to be empowered by themselves.

“We have it all inside ourselves and there should be no barriers to what we can achieve.

they don t see the things we can do.

This labelling is a factor contributing to the lack of representation of disabled women in mainstream media, something that became even more prevalent to Kelly when she was pregnant with her children, Jenson and Elsie.

MOTHERHOOD “On a whole disabled people are amongst one of the most invisible in society and as a mother there are no images, elly emphasises. “I thought why am I not represented as a mother Parenting has only furthered the skills elly has from living with a limb difference, most notably enhancing her problemsolving abilities. Since having lsie, Kelly has modelled with her for multiple campaigns, helping to combat the lac of representation she felt.

#CHOOSETOCHALLENGE The theme for IWD 2021 is hoose o hallenge, ac nowledging the need for each individual to choose to challenge and call out gender bias and ine uality, and to see out and celebrate women’s achievements. s her daughter grows up, elly hopes to teach her the value of celebrating achievements, she says “I think for a long time in history for women there was that comparison and there wasn’t very much togetherness, want the world to be different as she becomes a woman.

Kelly’s message to other women in the lead up to is clear if you feel empowered then there is no limit to what you can achieve. ou will face barriers, but you ust have to keep pushing forward and do not dim your light for the benefit of others. on t ma e yourself small, encourages Kelly. n March you can mar by celebrating your achievements and other’s on social media using #ChooseToChallenge FOR MORE INFORMATION You can follow Kelly Knox on Instagram @itskellyknox For inspiration ahead of IWD visit www.internationalwomensday.com

We all welcome a little extra assistance now and again, particularly when travelling alone. Thistle Assistance is an initiative to help you feel safer and more comfortable when using public transport.

thistleassistance.com

Connecting with

A

Enter spring, this is the perfect time to get your hands dirty in the garden, or in the home, by bringing nature into your surroundings. Wheelchair user and gardener Mark Lane speaks to Emma Storr about the importance of plants and his top tips

s the nation went into lockdown during March 2020, many people entered spring with a new passion: gardening. Utilising the smallest spaces, this new hobby added colour to everyday life.

Now, a year later, it is time to have your seeds at the ready as we enter spring.

GREENERY The connection we feel to nature from our houseplants to green areas near us goes back hundreds of years, Mark explains: “We have an innate need to be surrounded by greenery and it goes back to being hunters and gatherers

and living on the land and we still need that connection to nature.

“We’ve had a period of time where we weren’t able to connect with each other, so being able to connect with nature and plants is a great way of dealing with that.”

Spending time outdoors, or bringing the outdoors inside, is beneficial for both physical and mental wellbeing.

“I think people always underestimate the importance of garden and outdoor space,” admits Mark. “With all of us being locked down and not being able to meet with other people, the ability to go out, and in some cases just being able to look out onto greenery or to care for or have plants on a patio or balcony is so

Gardener, Mark Lane

“

Gardening, for me, was a life saver after my accident

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are able to do and look at those abilities you do have and transfer that into gardening,” summarises Mark.

RESEARCH

beneficial, and you don t need a huge space, it can be done in the smallest of spaces.

“We all like the idea of being outside surrounded by nature but at the same time if you can’t get out then why not bring nature into the house?”

Whether it’s a spare shelf, a windowsill or just an empty corner in your home, anywhere can be turned into a green space that fits your area and taste. If you started gardening last spring, or you haven’t done it before, it is the ideal time to start this hobby again.

“I hope that everyone continues with it because gardening, for me, was a life saver after my accident; gardening was really the thing that made me see the light at the end of the tunnel and I think the more you can do it the more you are learning because gardening always changes,” reveals Mark.

CAN NOT CAN’T Anyone can garden and you shouldn’t be restricted due to mobility or other issues. Finding what works for you is key. he first thing would always say to people is to look at yourself in a sense of what it is you can do on a day-to-day basis within the home,” advises Mark. “If you can reach for a tap or you can twist your arm or torso

f you fancy getting green fingers this spring, you don’t have to do it alone.

There are a host of organisations with advice and information on what to grow, when to grow it and how to adapt your green space to make it accessible, no matter if you live in a flat or have a garden.

“There’s a lot of information on the internet so I would always say look at about two to three pages and read over the descriptions and what it says in each one, make sure they all follow just make a mental note of that the same lines and if something doesn’t then if you can’t do that, then sound right ust find another one, what can you do? suggests Mark.

“It’s focussing on what The Royal Horticultural you can achieve then you Go to page 50 Society (www.rhs.org. find an analogy outside in and enter our uk) is the world’s leading the garden by carefully gardening charity, competition to looking at what you can enriching people’s lives win an accessible and can’t do, you can then through plants and making put it into gardening.” garden bundle the world a greener place.

Adapted tools and The organisation has easy to equipment can be helpful follow gardening guides, runs when considering what you can courses and workshops and has do in the garden, and one of Mark’s gardens you can visit across the UK. favourite hacks is using a raised bed or disability specific gardening instead of a traditional planter or bed. advice, the Gardening for Disabled “If you can’t kneel down or lean Trust is a great resource. Helping forward then think about raising the people to get into gardening despite garden to your height,” offers Mark. “If disability, the Trust issues grants to you can’t twist your torso but you like help individuals make their gardens the idea of lifting the garden up then accessible, offers ideas and inspiration just use a table because a raised bed for your garden, and has helpful tips to make small changes to increase the with a flat edge won t help if you won t accessibility of gardening. be able to twist to get full function of If you think that someone you care the bed. for or support would benefit from “If using raised beds: don’t make it gardening, Thrive (www.thrive.org.uk) too deep in width, see how far you can run social and therapeutic horticulture stretch your arm and only make it as programmes in England for disabled deep as that, there’s no point having people or people with ill health. raised beds that are two metres deep if you can’t get to the other side.”

Finding out what works for you in FOR MORE INFORMATION the garden might take some careful Mark is running a Zoom gardening session thinking and time, but the more you try, on 14 March, visit www.leonardcheshire.org the more you will learn. to t t n fin t o “It’s about assessing what your www.gardeningfordisabledtrust.org.uk physical limitations are and what you

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enable health

one of your Changing your diet can be a daunting prospect for many people, but it doesn’t have to be. Small changes can have a significant impact, leaving you feeling healthier, stronger, and full of life

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imple changes to your diet can help you feel healthier, energised, and lose weight.

However, for some people living with a learning disability, or caring for a person with a learning disability, weight management may seem like a big mountain to climb. But, there is no reason that a learning disability or physical and hidden disability should hold you back from living a healthy and stable life.

Introducing healthy habits into your lifestyle is easier than you may think.

EATING CONDITIONS Some conditions including Down’s syndrome or Prader-Willi syndrome (PWS) can be a cause for increasing body weight. For people living with PWS, a common characteristic is over eating and lower muscle tone, so it is important to try and be mindful of consumption.

a day Despite your best efforts, some eating disorders or symptoms can impact your diet.

If you care for a loved one that needs to actively gain weight, try providing small but frequent meals. In some cases, special calorie-enriched food or drink will be required, so ensure you contact your local GP, visit the NHS website or Beat.

that! But too much junk food can have a damaging effect on your health.

That doesn’t mean you have to cut out your favourite sweet completely, from substitutions to taking a smaller portion, you can get healthy and still enjoy a treat – believe us, you’ll savour it even more.

Want to get more fruit and vegetables? Try to Remember, eat a rainbow – yes, healthy eating is PLAN AHEAD that s right fill your One key way of managing better than plate with the wonderful your daily calorie intake is colours of the rainbow ‘quick fi x’ diets to plan ahead. Plan what you in a fruit and veg format. want to eat for the week ahead Each colour will represent before you go to the supermarket one of your five a day, and or order online, this means you will it will become a natural part of only purchase ingredients and items you your daily food plan to include more need. Or, you can prepare food in advance fruit and veg in your meals. and keep food in the freezer, ready to No matter if you’re looking to work defrost when you are ready. on your own healthy eating or the Remember, healthy eating is better than person you care for, small, positive uic fix diets. changes will make the biggest impact in With good dietary management and the long term. being mindful of what you are eating, weight can be kept at normal, healthy levels. Only you know your body, and you FOR MORE INFORMATION know what your body craves – eating Healthy eating educational tools and tips healthier doesn’t mean all fun treats are can be found at Beat (www.beateatingdisorders.org.uk), off the menu.

SNACK SWAP Treats like cake, chocolate or sugary drinks are wonderful, there’s no denying

Down’s Syndrome Association (www.downs-syndrome.org.uk), F.E.A.S.T. (www.feast-ed.org), and from the NHS (www.nhs.uk).

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easy read: The Hairy Bikers’ stuffed pasta shells The Hairy Bikers have shared an easy-read version of their vegetarian stuffed pasta shells recipe, so that everyone can get cooking at home

YOU WILL NEED 200g large pasta shells 1 portion of tomato sauce 4 tablespoons olive oil onion, finely chopped 1 small courgette, grated garlic cloves, finely chopped 1 garlic clove, cut in half rosemary sprigs, finely chopped g almonds, finely chopped 75g breadcrumbs Zest and juice of 1 lemon 300g spinach, wilted Handful of basil, shredded Salt and black pepper

The Hairy Bikers’ Veggie Feasts

by Si King and Dave Myers is published

by Seven Dials in hardback at £22 PHOTOGRAPHY BY ANDREW HAYES-WATKINS

STEPS 1.

Chop and grate all ingredients.

2.

Heat 2 tablespoons of olive oil in a frying pan. Add onion and cook until soft.

3.

Add the courgette and cook until wilted, add finely chopped garlic and rosemary. Cook for 2 minutes.

4.

Remove mixture from heat and put into a bowl until cool.

5.

Add more olive oil to the pan and add the almonds and 25g of the breadcrumbs. Toast on a medium heat until lightly toasted then remove from heat and leave to cool.

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6.

Mix with the onion and courgette mixture, then add the lemon zest, juice, spinach and some basil. Season with salt and pepper and mix.

lightly toasted then season, remove from heat and add the basil.

9.

Preheat the oven to 200°C/Fan 180°C /Gas 6.

7.

Cook pasta in salted water until it is just slightly hard. Drain and rinse under cold water until it is cool enough to touch.

10. Lightly grease a large oven dish with oil. Stuff each shell with a heaped teaspoon of the courgette mixture and place them in the oven dish.

8.

In your frying pan heat the rest of your olive oil and add the half garlic clove. Fry for two minutes and remove the garlic before it colours.

Add the rest of your breadcrumbs and almonds. Stir and cook until

11. Pour the tomato sauce over the pasta and sprinkle the remaining breadcrumbs on top.

12. Bake for 30 minutes until the top is crispy and the pasta is piping hot.

The Motability Scheme enables disabled people to lease a new car, scooter or powered wheelchair without the worry of owning and running one. Parents and carers can drive on behalf of the customer.

The vehicle should be used by, or for the benefit of, the disabled person.

Making life easier for disabled people

“We went on our first family camping trip.

Something we couldn’t have done without the new car.”

Sam, Elisabeth’s mum

Who can join the Motability Scheme?

You may be able to join the Scheme if you receive one of the following: • Higher Rate Mobility Component of Disability Living Allowance (DLA).

• Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP).

• War Pensioners’ Mobility Supplement (WPMS).

• Armed Forces Independence Payment (AFIP).

What’s included on the Motability Scheme?

Insurance Breakdown assistance Servicing and repairs

How Motability, the Charity can help We can provide charitable grants for: • Car adaptations to help make travelling as comfortable as possible.

• Vehicle Advance Payments for larger, more expensive vehicles.

• Up to 40 hours of driving lessons, to ensure disabled people have access to driving tuition in specially adapted cars as necessary.

To find out more visit motability.org.uk or call 0800 500 3186

Tyres and battery replacement

To find out more about the Motability Scheme visit motability.co.uk or call 0800 093 1000

11782_Motability_Sen_Advert_UPDATE_V1.indd 1

Motability is a Registered Charity in England and Wales (No.299745) and in Scotland (No.SC050642). Motability is authorised and regulated by the Financial Conduct Authority (Reference No.736309). All cars, scooters and powered wheelchairs provided under the Motability Scheme are leased to customers by Motability Operations Ltd, who operate the Scheme on a contract basis for Motability. Motability Operations Ltd is authorised and regulated by the Financial Conduct Authority (Reference No.735390).

19/01/2021 11:29

Under 30:

Life with MS

Multiple sclerosis (MS) affects more than 130,000 people, but many don’t realise that people can experience symptoms, and even receive a diagnosis of MS, early in life. We speak to three women under 30 to discover what more people need to know about life with MS

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any chronic conditions or disabilities come shrouded in myth and misinformation, if there is any knowledge at all.

Despite 130,000 people across the UK living with MS, some still have no understanding of the life-long illness.

A neurological condition, MS affects a person’s nerves as the coating that protects the nerves, known as myelin, is damaged.

Beyond the science, many people believe that MS is a condition that affects people when they are older.

DIAGNOSIS “I had no idea it could affect anyone my age or younger,” explains Panida Staplehurst, who was diagnosed with MS as the UK entered the very first lockdown in March 2020. “I was in complete denial.

Perhaps due to my ignorance on the subject and lack of knowledge; I’d only ever known elderly people with MS and thought it came with age.” Initially brushing off the first mention of MS, Panida received her

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Panida

I would like more awareness of disability in general and how it affects young people

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diagnosis of MS over the phone at the age of 25.

For Evie Meldrum, days after receiving her exam results, Evie was diagnosed with MS. uring her fifth year of high school, after recovering from a viral chest infection, Evie began to experience numbness down the left side of her body.

From her initial doctors’ appointment, MRI scan to seeing specialists to receive a diagnosis, Evie’s experience was incredibly quick – and came as a surprise.

Evie explains: “I didn’t know how I was feeling or how to process it because it was all so quick. It was a period of elation Evie when I got my exam results and then everything just seemed to crash around me. I didn’t even know how to respond or struggled to walk, my face dropped and how to feel.” it affected my smile, then [the diagnosis] Panida and Evie were both left with an really hit me,” remembers Panida.

MS diagnosis having to learn more about It is important to know, if you are the condition. However, Lucy Wood, who coming to terms with a new diagnosis or was diagnosed with MS aged five, has going through a bad relapse, you are not grown up learning and understanding alone. uring her first relapse, Panida what MS is and how it will affect her as arranged one-to-one counselling through her father also lives with the condition. the MS Society, she says: “To be honest, “I would say my dad already having there wasn’t just one thing about MS was a blessing in disguise that phone call that made me in a way,” emphasises Lucy. feel more positive about the “I learnt how MS works One in five diagnosis but it led to so much.” and what you can do people diagnosed Panida is now a member despite of it, and what with MS in the UK of a 400-strong Facebook you might need to community and has received adjust to suit the needs is under the age answers to many of her of an individual living of 30 questions. with MS.” Evie agrees that focusing on Panida, Evie and Lucy all your mental health and wellbeing have one important thing in is imperative. “Focus on your mental common: they were all diagnosed health, I think that is important and it is with MS under the age of 30. In fact, one something I didn’t do after I was recently in five people diagnosed with MS in the diagnosed,” Evie admits. “I’m only just UK is under the age of 30. Regardless realising now how important that was. of age, coming to terms with an MS If you’re in a good mental state the rest diagnosis is a process in itself. will follow; you do need to build a bit of resilience.”

OVERCOME MS does not define you. t will not “I did have one image in my head as to defeat you, and you can get through this what I thought MS was – someone with as there is help out there for you,” Lucy severe physical disability,” recalls Evie. adds. “It may seem like it is a battle that “I thought that happened to everyone seems difficult to overcome but trust me and it happened quickly. That was from my experiences you will be able to the only image of MS I had and the get through it.” only knowledge – what I thought was Now, Evie, Lucy and Panida are working knowledge.” to raise awareness of MS and disability As Panida adjusted to her diagnosis, for the wider community. as she wasn’t experiencing mobility issues at that moment she felt that life with MS wouldn’t be too hard. However, KNOWLEDGE one week later, Panida experienced a Annually, 7,000 people are diagnosed significant relapse. uring this time, with MS with 130 people receiving an

MS diagnosis each week. Even so, the myths and misunderstanding is still prevalent.

“There needs to be more understanding that MS does affect younger people and having more awareness of the extent of how MS can impact a person, it is not just physical,” emphasises Evie. “I would like more awareness of disability in general and how it affects young people.”

Lucy is also working to raise awareness of MS in young people for a college project. Lucy adds: “Many people do not realise how young I was when I was diagnosed and are shocked when I tell them about my MS; I want to break the stigma of MS being an older generation disability.”

If you live with MS or are newly diagnosed, you are not alone. There is a large community, mental health support and information available to ensure you are able to continue living life to the full. Panida concludes: “Don’t be afraid to reach out and learn.”

Lucy

FOR MORE INFORMATION

Get help and support from the MS Society (www.mssociety.org.uk) and get your questions answered on their helpline, 0808 800 8000. MS Trust (mstrust.org.uk) and MSUK (www.ms-uk.org) can also provide advice.

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AN ACCESSIBLE GARDENING BUNDLE As the weather gets better and there’s more opportunities to get outside, we’re giving one lucky reader the chance to win an accessible gardening bundle

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ith temperatures rising there’s more reason to go outside, and gardening is the perfect hobby to try. You can garden in any space, small or large, or you could even bring the outdoors inside by growing your own house plants or using window boxes. Celebrate the great outdoors and transform your green space with the help of this accessible gardening bundle.

These adaptable gardening tools will help you complete more work with less effort, transforming any size of space into a haven for plants and wildlife, and an area where you can unwind.

Including a set of four Easi-Grip Garden Tools, an Easi-Grip Arm Support Cuff and a pack of two EasiGrip Add-on Handles, this is the perfect set of adaptable tools for beginners who are new to gardening, or people with seasoned green fingers who are looking to update their garden tools.

Made from high quality stainless steel, the set of four Garden Tools have a specially angled handle, making them

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more comfortable and easier to hold.

By keeping your hand and wrist at a natural angle, they reduce strains and blisters that can happen when using conventional garden tools.

The two Easi-Grip Add-on Handles are the perfect pairing for your existing garden tools, allowing you to adapt your favourite hand tools to make them more comfortable to use.

The two handles can be used at right angles to each other on items like rakes so you can carry out your task without twisting or bending.

Both the Add-on Handles and the Garden Tools can be used with the Arm Support Cuff to reduce the need for bending or reaching. The simple cuff has an aluminium rod that plugs into the back of the cuff and tools, allowing the gardener to use the strength of their forearm while reducing stress on the hand and wrist.

This accessible gardening bundle can help transform your gardening experience and help you pick up a new hobby this spring.

HOW TO ENTER To be in with the chance of winning this accessible gardening bundle as we enter spring, simply send us your name, contact details and where you picked up your copy of Enable to competitions@dcpublishing. co.uk quoting Gardening Bundle. Or visit the Enable website and enter online at www.enablemagazine.co.uk/gardenbundle All entries must be received by Monday 26 April 2021. Good luck!

TERMS AND CONDITIONS: All entries must be received by Monday 26 April 2021. The prize is an accessible gardening bundle, the value of £80, which will be posted out to the recipient. The contents of the prize may differ from the images and descriptions included here. The prize is non-transferable, non-refundable, there is no cash alternative and cannot be sold to another party. One entry per ou o d u d on fin

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Challenging ON WORLD DOWN SYNDROME DAY Annually, World Down Syndrome Day is marked by people around the world. The day is going digital this year, but with a longer celebration and more ways to get involved than ever before, it should be the day’s biggest year yet n 21 March, people around the world will connect with each other to celebrate World Down Syndrome Day (WDSD): a global awareness day advocating for the rights of people with Down’s syndrome.

This year, WDSD falls on a Sunday, so celebrations will take place all week, from Monday 15 March right through to Sunday 21 March.

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INCLUSION “People who have Down’s syndrome should be included in all aspects of society every single day, but WDSD provides a markable day for us all to step back and make sure it is happening,” stresses Kate Potter from the Down’s Syndrome Association (www.downssyndrome.org.uk).

Since the day was first observed by the United Nations in 2012, it has grown, meaning more people now understand the vital role people who have the condition play in our lives and communities.

“By educating people across the world about Down’s syndrome, we can help to make sure more and more people advocate for the rights and inclusion of people who have Down’s syndrome,” stresses Kate.

To help spread the word each year, organisations like the Down’s Syndrome Association (DSA) encourage those taking part to don odd socks, Kate explains: “The reason we wear mismatched socks is because chromosomes look like socks,

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and people who have Down’s syndrome have an extra copy of chromosome 21.”

CONNECT Anyone taking part can share their socks on social media using #LotsOfSocks This form of sharing ties in to the WDSD theme for 2021: connect.

In light of the pandemic and isolation many people have faced over the last 12 months, the theme celebrates the different ways we have learnt to connect.

“Maybe we have learnt the wonders of video calls, or reached out to people we have not spoken to in a long time,” offers Kate. “It could be that we have learnt to say ‘hello’ to our neighbours, or discovered the power of a simple smile.”

In homage to the theme, the DSA are asking people to send in their home videos, talking about how they have connected over the last year and how it has made them feel.

Along with wearing odd socks and acknowledging these meaningful connections, there’s plenty of ways to mark WDSD. “A fun way to count down to WDSD could be a sponsored activity such as a 21-hour silence, 21 press-ups a day, or it could be 21 days without your favourite things,” suggests Kate. “Or maybe it could be something you can do for others, such as 21 days of kindness or 21 days of new things.”

No matter how you choose to mark WDSD, remember to share it on social media with #LotsOfSocks to connect with others.

FOR MORE INFORMATION Discover how to take part, or to download a d t und n t t o fi website, www.worlddownsyndromeday.org

NAVIGATING

Brain injury Brain injury can affect anyone at any age, but an acquired injury can be life-altering and finding the right support is key to help each family cope with the changes that come with an acquired brain injury

SEARCH “We had a little boy who slept with us in bed then, when he went to his own bed after a week or so, he was very clingy, he was getting up during the night, couldn t go to the bathroom alone because he was always with me, remembers regg s mum ndrea. here was no support, we ept contacting the GP and we didn’t get a consultant appointment until ebruary the following year. his lac of guidance meant ndrea and her husband David had to search for advice and information while caring for regg and his older sibling ewis. t the same time, the family was coming to terms with the effects of regg s in ury. fter months of research ndrea found Brain Injury Matters: a charity supporting children, young people and adults affected by acquired brain injury . n is an in ury experienced after birth, such as a fall, tumour or stro e a traumatic brain in ury is experienced after there is trauma to the head.

Andrea self-referred to the charity and started receiving support in April , ust a month after the coronavirus

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prompted loc downs across the country.

Andrea was connected with Meg from rain n ury Matters M who helped the family find appropriate strategies and interventions to support regg and the challenges the family were facing. he telephone calls would have been anything up to an hour or over and she gave us ideas of fun things to do or things to look at online, and other organisations to have a loo at, reveals ndrea. his support was pivotal in Gregg’s journey and gave Andrea the necessary tools to cope with his new behavioural issues.

“BIM really helped us in getting through the hard bits because we didn’t know how to deal with his anger, his attention span, things to calm him down, ac nowledges ndrea.

UNIQUE ue to her own family s experiences, Andrea now highlights the need for

“

Stay strong as a family and support one another

“

I

n October 2019 Gregg, who is now 10, contracted Encephalitis, a rare condition which causes inflammation in the brain. his led to an acquired brain injury which left his family desperate for support and guidance.

After spending six days in the hospital, Gregg was discharged, with the family feeling they had no information on the next steps.

better support for families, she says “Every face to face, every letter, every call I have said please give parents support when they come out of hospital.

Brain injury affects every individual uniquely, a factor which ma es the right support vital. veryone s brain in ury impacts them differently and a lot of our wor is helping the family to understand specifically what it s li e for their young person and why they may act or behave in the way they do, and to then provide strategies to support that, explains ridget Smyth, head of children and youth services at M. onsidering the whole family, rather than only the person who has acquired the brain injury, will aid their recovery and development.

FAMILY Stay strong as a family and support one another, it is really difficult the changes in your child that just happen in a flash, sympathises ndrea. he aftermath of an ac uired brain injury can take its toll on every family member, staying united is an essential part of this ourney.

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The Brain Charity centre and cafe

SERVICES

“BIM were supporting the whole family, asking how our other son was coping with it and ideas for him, and for my husband and I and ideas and how we can cope, it was really inclusive, not just focussing on Gregg but the whole family unit,” stresses Andrea.

The challenges families can face can be immense, including, but not limited to, an increase in family tension, conflict between family members, social isolation and difficulty with ad usting.

The person who has acquired a brain injury might look the same on the outside, but be a totally different person on the inside whether they are a child, young person or adult.

Tui Benjamin from The Brain Charity explains: “The thing with brain injury is it can change your personality so much and that can be very hard for a family member to adapt to.

“If you are someone who has been married for 30 years you might feel like you don’t know your spouse anymore, they seem different and the way they are acting is different, people do really need a lot of emotional support to come to terms with that.”

Families could be struggling with this change, new caring responsibilities, financial issues or their own mental health in the aftermath.

In person services prior to the pandemic

These issues have been exacerbated during the coronavirus pandemic when many support services had to make the shift to online or could no longer run at all.

“People come to us who have a new diagnosis or a recent brain injury, having been discharged from hospital during the pandemic and not been feeling like there’s much support out there,” stresses Tui. “Their life almost feels like it’s been put on hold but they’re grappling with something potentially quite traumatic that has happened to them.”

In 2020, referrals to The Brain Charity went up by more than 50 per cent in comparison to 2019, leaving the organisation with concerns around mental health, long COVID and unemployment.

The need for online learning in education and the delivery of support via telephone and video calls have also created challenges in the sector, with some vital services missing out.

As the pandemic continues and further into the future, the support provided for families after acquired brain injury has to be increased or the responsibility will continually fall on charities who have limited resources.

FOR MORE INFORMATION If you are looking for family support after an acquired brain injury visit www.thebraincharity.org.uk or www.braininjurymatters.org.uk

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GOING PURPLE FOR EPILEPSY Turn the world purple and help raise awareness of life with epilepsy this Purple Day. We speak with one woman about the importance of the day to save lives

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orldwide, on 26 March bac negative. ne final test, a Sleep annually, Purple Day Deprived EEG, which meant Amy had encourages conversations to stay awake for over 24 hours, led to around epilepsy to help diagnosis, she explains: “Thankfully this raise awareness of the condition and to test led us to a diagnosis of epilepsy and fundraise. as of February 2021, I am seven months Established in 2008 after Cassidy seizure free.”

Megan, based in Canada, experienced SAVING LIVES struggles and isolation after being Purple Day is important for Amy as she diagnosed with epilepsy, Cassidy knows that information on epilepsy can launched Purple Day in order to dispel save lives. “It has saved mine more times myths on everything from seizures to than I can count,” continues Amy. living with a hidden disability.

“When you have a seizure Over a decade later, Purple in public, you’re putting Day is a staple event in the your life in the hands of calendar for thousands of Purple Day will strangers. I always tell people. take place on people to imagine they Friday 26 AWARE are the person having For many diagnosed a seizure in public and March 2021 with epilepsy, it can be an nobody was there to help.” isolating time. However, in That is why events such the UK alone, 600,000 people as Purple Day are so poignant: have epilepsy meaning they can to help shine a spotlight on life with experience seizures at any time. Starting epilepsy. “It’s really hard. It’s scary,” at any age, epileptic seizures happen admits Amy. “There are times when when there is a sudden burst of electrical you’re scared to leave your bed because energy in the brain, causing temporary if you have a seizure then you’re safe in disruption to how the brain works. bed. It’s not just epilepsy that affects us; Amy Southwell is just one person who it’s anxiety, depression and occasionally, will be raising awareness of epilepsy and it consumes you.” sharing information on epilepsy first aid TOGETHER this Purple Day. Alongside awareness, it is critical for the The route to diagnosis can be daunting community to know they are not isolated and, unfortunately for Amy it was in their experiences. “There will be times incredibly stressful. After six months when you feel helpless, but everything of experiencing seizures, tests carried will be okay,” emphasises Amy. “Don’t out by doctors continued to come

Amy Southwell

bottle up how you’re feeling, talk to someone and research sei ure first aid, too. Try to keep calm – you are not alone.”

Purple Day may look different this year, but that doesn’t mean you can’t still celebrate, raise awareness, and go purple. rom sharing first aid information, spread information on the different forms of seizures, to connecting with others who may be feeling isolated, even virtually Purple Day will still be a success.

FOR MORE INFORMATION

Further epilepsy advice can be found at Epilepsy Action (www.epilepsy.org.uk/purple) and Epilepsy Society (epilepsysociety.org. uk). Celebrate Purple Day by visiting, www.purpleday.org

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January 2021 saw the UK leave the EU; this move will soon mean families will no longer have access to medicinal cannabis to support children with chronic epilepsy. Lorne Gillies investigates the impact of Brexit and continued stigma around a vital medicine

MEDICINAL CANNABIS: The power of plants

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rexit has had a significant impact on all our lives, and the rollout is affecting people, families, businesses and more in different ways. or several families with children who have refractory epilepsy, which causes hundreds of daily sei ures, rexit is set to be an additional hurdle to obtaining vital medicinal cannabis. new struggle in a long fight, the obstacles faced to obtain a prescription for medicinal cannabis may now be even more prevalent. utside the bubble, many of us re oiced in when we learned that medicinal cannabis edrolite is an example of a medical cannabis product was prescribed on the S to six year old lfie ingley, who lives with refractory epilepsy causing up to

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spotlight

THE NETHERLANDS “This is a legal medicine, why should I have an S prescription but nobody else t is not fair, expresses lfie s mother, Hannah Deacon, who is actively campaigning for medicinal cannabis to be available on the S. hese families have proven it helps their children but their doctors who wor for the S say they are not allowed to prescribe it. longside the challenges to obtain prescriptions for families across the , due to rexit, the overnment gave ust two wee s notice that access to edrolite available from he Netherlands – would end.

Hannah continues: “There has been a complete lac of empathy or understanding around what it could be like to be a parent or carer with someone with refractory epilepsy, which is very, very hard on a daily basis.

“What we have to remember is that this should be regarded as a specialist medication li e any other, but don t thin it is, continues annah. thin there is still a huge amount of stigma around the fact that it is cannabis. ut, for children li e lfie it is a life changer.

BOTANICAL Prior to receiving lfie s prescription in , the family relocated to he etherlands for five months and the impact medicinal cannabis had on lfie s progression was evident. From being restrained and injected with medication, finding simple tas s hard to follow, to learning how to ride a bi e in a couple of days and living for long periods of time sei ure free.

“I would never, ever say that this is a cure we accept that he has a very rare, non-inherited genetic condition which nine boys that we now of are diagnosed with worldwide. e now we face a future that will be very difficult for him, explains annah.

“What we have done with medicinal cannabis is given him a uality of life.

When the seizure activity calmed down his brain started to wor properly.

espite the evident benefits, there is still a taboo around cannabis. Charities welcomed the move for medicinal cannabis in 2018, however, the National nstitute for ealth and are xcellence were against the move due to the psychoactive ingredient found in cannabis, delta tetrahydrocannabinol .

Hannah, and many private medical professionals, argue that medicinal cannabis, such as Bedrolite – which uses almost an entire cannabis plant for production – is a botanical and better than pharmaceutical products in many instances when treating epilepsy.

Pharmaceuticals are brilliant for some things, but they are not great for other conditions and epilepsy, which is very severe. Pharmaceuticals alone don t wor for lfie, explains annah.

What we have done with medicinal cannabis is given him a quality of life don t believe the attitude comes from a position of care or safety believe the attitude comes from a position of fear and stigma. hildren who have refractory epilepsy and have hundreds of sei ures a day, if was a slight ris , isn t it worth taking that risk over multiple seizures a day bsolutely.

Medicinal cannabis comes from the mari uana plant, which features multiple compounds such as CBD and THC. For children with severe epilepsy, they re uire both and small doses of but not enough that would illicit feelings of being high.

Hannah emphasises: “The only way that this medicine is going to become accepted is through education.

FORWARD here are many challenges for parents raising a child with severe epilepsy, plus people living with chronic conditions such as multiple sclerosis. longside the initial obstacles in place to receive a medicinal cannabis prescription on the S, the barriers are leading people to turn to private practice – spending thousands of pounds every month on critical

PHOTO: CLAIRE CARROLL

150 seizures a week. However, despite the law change in November 2018, which means clinicians on the specialist register could legally prescribe, many are still fighting for a prescription on the S, or spending £2,500 a month on private medication.

Hannah and Alfie

medication – or purchasing cannabis on the street, unsure of dosages and strength. he news that rexit could impact lfie and other children s supply is heartbreaking. hen as ed for comment, a epartment of ealth and Social Care spokesperson said: “We have agreed a way forward with the utch overnment on the supply of edrocan oil to patients, which will bring relief to the families who depend on these medicines. e are grateful to the utch overnment for wor ing with us closely and quickly on this solution, which will last until uly. e are exploring more permanent solutions to ensure people who need these treatments can continue to access them.

While the interim measure is a move in the right direction and welcomed by annah and other families, more wor still needs to be done to ensure the safety of children li e lfie, and people who would see the benefits from a medicinal cannabis prescription. But, the tides are changing.

Hannah says positively: “Things are going to change, and patients will drive this. I have positivity that even though there are people trying to stop this, it is going to happen.

FOR MORE INFORMATION

Education and advocacy tools can be found at MedCan (medcansupport.co.uk) and on Facebook (@medcan). More advice is available from The Centre for Medicinal Cannabis (thecmcuk.org), NHS (www.nhs.uk), and Medical Cannabis Clinicians Society (www.ukmccs.org).

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PARKINSON’S: Making steps towards a cure

As we mark World Parkinson’s Day on 11 April, organisations around the world will raise awareness of the disease and the need for research and funding to find a cure

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ne in every 37 people alive today will be diagnosed with Parkinson’s in their lifetime states charity Parkinson’s UK. However, there is no cure for the progressive neurological condition.

Through the right research, we are one step closer to a cure, and that is why awareness of Parkinson’s is critical.

From 5 April to 10 April, charities, researchers, people with Parkinson’s and their families around the world will mark Parkinson’s Awareness Week, all leading up to World Parkinson’s Day on 11 April.

GROWING With notable celebrities like Sir Billy Connolly, Ozzy Osbourne and Michael J. Fox speaking out about their Parkinson’s diagnoses, there is greater awareness of the degenerative condition, but more work can be done.

Signs of Parkinson’s start to appear when the brain can’t make enough dopamine, the chemical that controls movement, this leads to three main symptoms: tremor, slowness of movement and rigidity.

There are many different treatments, therapies and forms of support available to help manage the symptoms of Parkinson’s but without a cure, the

fastest growing neurological condition in the world will continue to affect an additional 18,000 people in the UK annually.

EXPERIENCES

As an opportunity to raise vital awareness of Parkinson’s as a condition, and the need for funded research to find a cure, people with experience VITAL STEP of Parkinson’s and those who are just With continued research around learning about the condition are treatments for Parkinson’s, encouraged to take part on 11 scientists are continually April. getting closer to In coming together One in every discovering a cure: during and telling their story of 37 people alive February 2021, scientists Parkinson’s, scientists, today will be made a vital step towards fundraisers, families, finding a cure for the diagnosed with carers and clinicians can disease. help people to better Parkinson’s The group at Cambridge understand the condition.

University have broken new By sharing your own and ground in understanding the listening to stories from other role of a key protein which is present people living with the disease, you can in the brain. Alpha-synuclein plays a help to raise awareness of different number of roles, but most notably is in experiences of Parkinson’s, and how it small gaps between neurones, or nerve can affect each individual differently. cells, allowing them to communicate People living with Parkinson’s can effectively with each other. also sign up to take part in research When this protein behaves with The Cure Parkinson’s Trust (www. abnormally and forms clumps inside curepar insons.org.u to help find new neurons, it causes Parkinson’s. By treatments and, one day, a cure. starting to establish the normal function of this protein through their FOR MORE INFORMATION research, the team at Cambridge Parkinson’s UK (www.parkinsons.org.uk) University are a step closer to their can provide information, advice and support goal of finding a cure and helping the for people living with Parkinson’s along with million people worldwide living with the ideas for how to mark World Parkinson’s Day. disease.

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REVIEW

FORD PUMA Ford enters the fiercely contested crossover market with its Puma. Does it have the claws to win? Alisdair Suttie finds out

INSIDE The Puma is based on the Ford Fiesta and anyone familiar with the supermini will feel instantly at home in this crossover. There are the same clear main dials, though the small digital display takes some getting used to when toggling through its functions. However, Ford’s SYNC infotainment screen in the upper centre dash is a pleasure to use and easy to pair with a smartphone.

It’s easy to get in and out of the Puma, and Ford offers ample space for the driver and provides

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seat height adjustment in higher grade trims. Coupled with two-way movement for the steering wheel, getting comfortable is a breeze. You also have a Quickclear windscreen for frosty mornings.

Rear seat space is on a par with the Skoda Kamiq, while the Ford’s boot is more than generous and able to cope with a wheelchair. It also has a surprise in the form of the Megabox, which is an additional 80-litre storage space under the floor that s ideal for muddy boots. It even has a plug so it can be rinsed and drained.

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The Ford Puma is simply a brilliant car to drive

The Ford Puma is available for the total cost of your Mobility allowance on weekly rental and £545 advance payment.

Find out more, www.motability.co.uk

EQUIPMENT The Puma starts with the Titanium trim, which provides 17-inch alloy wheels, automatic wipers and headlights, rear parking sensors, Quickclear windscreen, 8-inch SYNC 3 screen, and cruise control. You also get a host of safety kit including Lane Keeping Aid, collision-avoiding emergency braking, and Pedestrian and Cyclist Detection. Move to the ST-Line and you get a sporty body it, firmer sports suspension, larger 12.3-inch infotainment screen, air conditioning. Our favourite ST-Line X adds 18-inch wheels, driver’s seat height adjustment, rear privacy glass, climate control, and wireless phone charging. Choose the Vignale for a touch of chrome on the outside and leather upholstery inside. The hot hatch ST version is not available through Motability.

DRIVING With every other car in this small crossover sector, there is always the caveat that they drive well ‘for a crossover’. Not with the Ford Puma. It is simply a brilliant car to drive, whether you’re after comfort, motorway cruising, or ease of parking. The Puma makes all of its rivals feel very ordinary and not even the firmer suspension of the higher trim versions undermines its supple talents or refinement.

The only demerit for the Puma is the smooth seven-speed automatic gearbox is not available with hybrid petrol-electric power. Instead, you get the auto with the 125hp 1.0-litre petrol engine, which is still a very fine choice. t s peppy and delivers up to a very achievable 46.3mpg

combined economy. If you are happy with the six-speed manual gearbox, the Puma hybrid gives an average official consumption of 50.4mpg.

There is no four-wheel drive, but there is four drive modes, comprising Normal, Eco, Sport, and Slippery and rial, for added confidence in different conditions.

SUMMARY Great to look at and great to drive, the Ford Puma goes straight in as leader of the small crossover class.

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WHEELCHAIR PONCHOS

BundleBean, from £25 www.bundlebean.com, 020 3795 7225

BundleBean now offers top to toe protection with their new wheelchair ponchos. In two designs – classic elephants and brand new seagulls – these ponchos are super lightweight but fully waterproof. With a peaked cap to protect faces, and easy to use poppers to secure it under arms and chin, these ponchos are carefully designed to help get you out and about in all weathers.

HOME

With eight compartments and eight daily alarms, the pill reminder is ideal for people with multiple medications to take throughout the day. Easy to programme, the dispenser remembers alarms for each day. With magnetic openings, the reminder is perfect for people with weak mobility.

MOBILITY

BEARHUGZZZ BED

Kinderkey Healthcare Ltd, POA www.kinderkey.co.uk, 01978820714

Bearhugzzz Bed is suitable for vulnerable children and adults. Providing a calm environment, it can help to improve poor sleep patterns and ensure safety for those who wake during the night. ma or benefit is the bed s ability to withstand vigorous behaviour, thanks to its soft padded sides which protect the user against injury.

DEMENTIA 2-IN-1 CLOCK

ATTENDS PULL-ONS

Attends, from £18 www.attendslifestyles.co.uk, 0845 6013272

Attends Pull-Ons are a range of disposable underwear designed to manage light to severe urinary and/ or bowel incontinence. Designed with an elasticated, flexible shape for a close fit and with odour protection. New Attends PullOns 10 introduce absorbency level 10 to the popular range of incontinence pants.

PERSONAL

GPS LOCATION TRACKER

Dementia Care Products, £61.79 exc VAT www.dementiacareproducts.co.uk, 0800 999 6659 The 2-in-1 clock comes complete with a digital display, clearly showing the day, date, and time. For people with memory loss or dementia, the clock also has a built in feature to verbally remind users the specific time and day in a range of languages.

The clock also auto detects and adjusts display brightness throughout the day.

HEALTH

MedPage, £74.99 exc VAT www.carealarms.co.uk, 020 7501 1106

STYLE

SOFTSHELL JEANS

Rollitex, from £97 www.rollitex.co.uk, +49 3077909152

The German online store provides stylish and easy to wear fashion specifically for wheelchair users. Jeans come in a range of sizes and fabrics, and the softshell jeans are designed for the winter months, featuring a fleece inside and highly breathable coating that doesn’t allow moisture to penetrate.

Accurate within 15 metres, the MedPage Micro is a compact GPS location tracker with integrated fall sensor and wander detection alarm to detect when the user leaves the house.

Additionally, five emergency contact numbers can be stored.

Ideal trackers for people who may easily get lost but still want to maintain a sense of independence.

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nable Magazine is the UK’s leading disability and lifestyle title, bringing readers the latest, news, interviews, discussions and more happening in the disabled community.

From exclusive interviews with disability advocates, discussions with young carers to unpaid carers, and parents of disabled children: there is no topic left untouched in Enable Magazine.

And the March/April issue is no different.

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N

ow, more than ever before, it is important to be aware of the advice and support available if you are in debt or have worries about your finances. s unemployment rises and the furlough scheme comes to an end, many people will experience financial difficulties for the first time.

“Now more than ever we are seeing some of the things that ring alarm bells for us around people needing debt advice more,” highlights Craig Simmons, head of debt advice policy and strategy at the Money and Pensions Service www.moneyadviceservice.org.u . efore the pandemic more than five million people registered as missing bill payments, now we expect that to grow more than 50 per cent in the next year to months.

IMPORTANCE There are many factors that can contribute to problem debt, but without see ing advice this can go on to affect all aspects of daily life.

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ou find with people in debt that they don t concentrate at wor as much as other people, there’s an impact on their home life, ta ing that step not ust helps your finances but your broader life as well,” stresses raig.

Reduction in income, job loss and increased costs due to spending more time caring for loved ones are all contributing factors which can lead to overwhelming worries about money. ndy Shaw is a debt advice co ordinator at Step hange www. stepchange.org , the s leading debt charity, he says: “Many people have experienced a reduction in incomes and the results are increasing numbers of people in problem debt.

“People were able to defer payments on mortgages and credit cards and so on and not worry about it for a few months, but of course, once that support started to lessen later in the year that’s when we started to see an increase in demand.

EARLY INTERVENTION If you have concerns around your finances, it is helpful to remember that you are not alone, but see ing support early is ey.

“Being in debt and worrying about finances can be a lonely feeling, stresses Dennis Hussey, a money adviser at ational ebtline www. nationaldebtline.org . nowing that there is help out there and you are not on your own can ma e a huge difference.

“You won’t be the only person in this boat. hether you re already in debt or perhaps just concerned about the prospect of debt, it is always worthwhile see ing advice. hen you reach out for support, a debt adviser will loo at your finances, income, expenses and debts before tal ing to you about building a sustainable way forward. ou don t have to be in debt to see this support if you are concerned about your finances, ob loss or are unable to wor you can spea to an adviser to voice your concerns.

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Seeking Debt Advice

Getting advice is an essential step in understanding and controlling debt, and can put your mind at ease.

Three experts highlight the importance of early intervention and how to take the first steps to a better financial situation

BUDGET Often, the first step when you seek support is creating a budget and deciding what amount you can afford to pay to your creditors.

“I can’t stress the importance of making a budget enough because it can be difficult to see where to start when hitting hard times and actually having a list of your income expenditure and what your debt is can be helpful to get a sense of where you are and what your next steps might be,” offers Craig.

Starting a budget might feel overwhelming, but you don’t have to do it alone. If you can’t or don’t want to speak to someone over the phone, you can access tools online like the Money Advice Service’s Money Navigator Tool.

This personalised online tool will take your unique circumstances into account before giving recommendations on how to budget.

As the furlough scheme ends at the end of April, a new scheme will be launched in May to help people deal with problem debt. Breathing Space gives people 60 days to work with a

debt adviser and create a plan while creditors cannot add interest or other charges to existing debt.

NEXT STEPS Taking the first steps to seeking debt advice can be scary and speaking to someone close to you can be reassuring.

The organisations you owe money to, along with those helping you with debt advice, have to make reasonable adjustments if you disclose your disability.

“When it comes to things like putting a budget together, it includes being mindful of things like extra costs,” explains Andy. “It is also the case that the organisation that you owe money to will have its own policy and procedures and specific additional steps they can take to help people in that situation.

“The overriding advice is to be up front and let people know and they do have obligations to try and help you with that.”

Debt advice organisations will also try to be as accessible as possible during this process and can liaise with a third

party if you are more comfortable with this, Craig says: “You can normally see an adviser, you can call, we can do text, webchat: there’s a huge range of options for us to get debt advice to people, you don’t just have to do it on the phone or in person.

“Many times, people get advice and confirm they are happy for a friend or family member or carer to speak on their behalf, once confirmed with the debt adviser they will be happy to confer with a third party and offer advice.”

Regardless of the financial situation you find yourself in, it is important to know there is free and impartial support available when you need it. Remember you are not alone in this journey and seeking advice early will put your mind at ease.

FOR MORE INFORMATION If you are seeking financial advice visit www.moneyadviceservice.org.uk, www. stepchange.org or call the National Debtline on 0808 808 4000.

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Your right to

INFORMATION As guidance around the coronavirus pandemic continually changes, concerns have been flagged about the availability of information in accessible formats

n the government guidance (www.gov.uk) on accessible communication formats, it is recommended that departments liaise with disabled people to develop and review their strategies in this area. This creates an environment where disabled people’s needs are met in an effective and helpful way.

Throughout the coronavirus pandemic there have been calls for more inclusive information formats as rules, regulations and guidance are continually updated and disabled people are often left behind or stripped of their independence.

I

ADAPTED The use of braille, easy read formats, British Sign Language interpreting and large print are just a few examples of accessible formats that should be available when a disability or impairment affects the way someone can receive information.

Failure to provide these formats could be classed as discrimination, but throughout the coronavirus pandemic, accessible communication formats haven’t always been readily available.

These discrepancies go further than leaving disabled people uninformed: it is putting their health and wellbeing

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at risk if they are unable to access information on shielding, changes to benefits assessments, rules around travel and more.

Without information in the correct format for each individual, disabled people are forced to rely on family members and carers to stay updated, taking away a sense of independence and putting people who live alone in a difficult position.

LEGAL BATTLE One woman is set to challenge the government in the high court after not receiving shielding information in an accessible format.

Sarah Leadbetter, who is blind and also clinically extremely vulnerable to COVID-19, has claimed that the government breached equality and human rights laws by failing to provide accessible information throughout the pandemic.

In remission from cancer and living with a genetic condition that affects her immune system, Sarah only found out she was on the shielding list because her mother was able to read her a letter she was sent.

A judge ruled that it was arguable that health secretary Matt Hancock’s failure to provide accessible correspondence breached his

department’s duties under the Equality Act 2010, failed to comply with NHS England’s Accessible Information Standard, and discriminated against Sarah under the Human Rights Act. Now, Sarah has won permission for a judicial review of the government’s failure with the case set to be heard by the high court.

RESPONSIBILITY Sarah’s case is just one instance of someone speaking out and highlights the lack of information in accessible formats, not just in relation to the coronavirus but out with the pandemic.

These complications have left charities and disability organisations to pick up the pieces and provide members with accessible, up to date information.

With the government’s legal duty to provide information in accessible formats, changes are necessary to protect disabled people’s health and increase their independence.

FOR MORE INFORMATION If you think you have been discriminated against due to a lack of accessible information, speak to a solicitor or contact Disability Rights UK (www.disabilityrightsuk.org) for information on your rights.

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Tim Rushby-Smith

WE GOT GAME Entering the world of gaming, our columnist Tim Rushby-Smith looks to the virtual world for a form of escapism

I

ESCAPISM I was always a keen cyclist, especially mountain biking. But my paraplegia rather put paid to that. I know there are options for hand cycling but the time and expense mean that I haven’t yet managed to get onto any downhill tracks. Not that I would ever have tried something this dangerous.

Instead, I am enjoying the experience of riding from the comfort of my own sofa. Like many people in lockdown, I rediscovered the joy of computer gaming. It’s something I have indulged in off and on, as I am not very good at self-regulating and it can swallow time like no other activity.

But there are rewards to be had.

Gaming is a world I can escape into for the sheer joy of unrestricted movement.

I can run and jump, or ride mountain tracks. More than that, I’m not even restricted by petty things like gravity.

Choose the right game and I can even fly. t s not ust about the movement.

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“

The immersive experience is one of the few things that offer me respite when my neuropathic pain gets really bad.

POWER OF TECH The lockdown has changed the way most of us use technology.

For many people with a disability, the online world allows us to gather and share our experiences. To offer the kind of advice and support that comes from those with shared experience.

But gaming also provides an important outlet. It can create a level playing field, or a chance to design your own fantasy house, or go on a quest. For some it even provides a potential career as in the case of the Quad Gods team, all of whom have a disability, and who compete in e-sports, where the prize money on offer can be substantial.

I don’t play for the competition.

Just escapism? Perhaps. But we all like to escape sometimes. And I’m not necessarily trying to escape from my disability. Sometimes I’m just trying to avoid the washing up.

Gaming is a world I can escape into for the sheer joy of unrestricted movement

“

can hear the wind rustling the leaves in the trees around me.

Looking down from this peak, the rough track drops sharply away before a jump onto the rock shelf ahead. I set off, pedalling hard to make sure I have good speed for the take-off, but my front wheel clips a rock I hadn’t spotted and by the time I launch, my balance is off. I miss the landing, bounce awkwardly, careen over the cliff edge and plummet onto the rocks far below.

Oops.

I can hear the wind rustling the leaves in the trees around me. Looking down from this peak, the rough track drops sharply away…

Beyond The Break, by Darren Longbottom and Tim Rushby-Smith is published

by Ebury Press in Australia and is available internationally as an eBook

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The

VIRTUAL STUDENT Distance learning has become the new normal, but beyond the positives disabled students have also experienced new hurdles.

One student shares his experience of going from the campus to behind the screen

R

hys Brown is in his second and final year of his M Masters of aw at niversity ollege ondon . nitially learning on campus in October 2019, Rhys, who has epilepsy, has experienced both aspects of learning virtually and on campus.

However, it was the draw to on campus learning that hys was most loo ing forward to. fter being diagnosed with epilepsy, hys left secondary education without S s or evels. ventually hys obtained ualifications from he pen niversity, experts in distance learning, and at the age of , hys was ready for on campus learning.

CHANGE oc down has changed learning, expresses hys. t has certainly been harder to connect with tutors and build a rapport due to loc down. hys has also felt the impact at home learning has had on fellow disabled students in his role as the isabled Students fficer for ir bec nion.

My role has changed with people coming to me struggling with ill health and mental health there have been a plethora of different scenarios, explains hys. oth disabled and non disabled students have been impacted by the pandemic.

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or ing with fellow disabled students and the university, Rhys has been calling for the removal of evidence for mitigating circumstances, more accessible lectures and calls for exams and assessments to be reassessed.

EXPERIMENT hys adds here have been specific is sues for disabled students and distance learning. rom pre recorded lectures that are too quiet or not accompanied by transcriptions, some disabled students have felt left behind missing out on a significant amount learning. his year has felt li e we are experimental guinea pigs, it is not acceptable, emphasises hys. hen we leave university and move into a professional capacity, we will still want to have nowledge ust as good as if we had completed university in an ordinary year. call my year the ohort, hope we don t come with too many negative connotations.

TEACHING espite the stumbling bloc s, hys enthuses that are already loo ing

at ways to change their teaching methods moving to a hybrid method.

Studying remotely or in person will always benefit disabled students, explains hys. his will allow disabled students to get the type of education that suits them. here is no denying learning has changed, regardless what stage of higher education you are in. rom first year students to those in their final year, it is important to now there is help on hand if you are struggling.

Rhys advises: “Be open about what struggles you are facing tal about it and as for help. f you get isabled Student s llowance S and reasonable ad ustments, plus the support from your university and Student s ssociation you will be in a very good position to achieve your potential.

FOR MORE INFORMATION Further advice is available from UCAS (www.ucas.com), The Open University (www.open.ac.uk), and Leonard Cheshire (www.leonardcheshire.org).

Queen Alexandra College

WHEELCHAIR BASKETBALL ACADEMY

new and exciting fo!r 2021/22

Photograph by David Dunbar Purple Swan Photography

Queen Alexandra College (QAC) are working in collaboration with University of Worcester and The Albion Foundation to deliver a unique and ground breaking elite Wheelchair Basketball sport performance programme.

The programme is specifically designed for ambitious young sports people aged 16-24 years who use a manual wheelchair and are eligible under the International Wheelchair Basketball Association (IWBF) classification criteria.

For more details please contact: 0121 428 5050 or info@qac.ac.uk

www.qac.ac.uk

QAC: Registered Charity No. 1065794 Registered in England No. 3387540

Let us help you reach your

potential

United Response is an award-winning charity with over 40 years experience supporting people with disabilities and mental health needs.

We’ve been cheering at the sidelines as they’ve celebrated passing exams, first jobs and moving into their own homes. We’ve even donned a hat for the odd wedding or two.

We’ve witnessed the heart-stopping moment when someone who’s been voiceless for a decade is finally given the means to communicate and say ‘yes’ - or just as empowering, ‘no’.

Find out how we could help you: 0800 0884 377 get.support@unitedresponse.org.uk www.unitedresponse.org.uk

Registered charity no. 265249

enable employment

Revel in the confidence of working alongside an employer that prioritises inclusion in the workplace with Accenture

Making a difference with Accenture T

he Accenture Accent on Enablement Network is a vibrant and diverse community with over 1,000 members representing a wide spectrum of both visible and invisible disabilities.

Within the network, there are three core missions: to support all persons with disabilities to perform at their personal best to influence the culture at Accenture to be more accepting of disability; and to ensure Accenture hires and retains the best talent, regardless of disability.

Liaising closely with Accenture recruitment teams, the network works to ensure all recruitment policies reflect best practice for persons with disabilities. Accenture is dedicated to simplifying the reasonable adjustments process for employees to improve accessibility within ccenture offices.

CHAMPIONS Accenture’s global Persons with Disabilities (PWD) Champions programme was created to bring people, supporters and friends together for networking, collaboration and mentoring.

The programmes disability champions are active supporters of global Accent on Enablement initiatives and programmes at Accenture.

Together, champions work to help

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foster an inclusive workplace for everyone.

As a global business of over 500,000 people, the reach for inclusion goes far beyond the UK. So much so, that Accenture currently has over 35,000 disability champions worldwide and over 1,600 members in the UK.

ALLIES Alongside PWD Champions, Accenture has a group of trained and trusted people working as mental health allies. Allies are dedicated to providing guidance for people seeking support or information for themselves or a colleague.

Mental health allies can help normalise and destigmatise conversations around mental health, promoting a culture of openness.

Currently, there are 2,400 Mental Health Allies in the UK, and almost 7,000 globally, who work to promote a healthy workplace environment.

EQUAL As Accenture is an equal opportunities employer, they welcome applications from all people and do not discriminate on grounds of race, religion or belief, ethnic or national origin, disability, age, citizenship, marital, domestic or civil partnership status, sexual orientation, or gender identity or any other basis as

protected by applicable law.

The organisation is committed to accelerating equality, supporting Accenture’s disabled people or customers. Research published by Accenture proves that companies with more disabled people are more successful and profitable, thus prioritising the hiring of disabled people and supporting colleagues is a business imperative, as well as the right thing to do.

INNOVATIVE To support their people, Accenture are in the process of launching an enablement passport.

The Enablement Passport is a new tool designed to help conversations between people who require reasonable adjustments and their line managers, ensuring clear and effective communication about the benefits and challenges of their condition or situation.

The tool is completely voluntary but makes it much easier for people to get the support they need and for line managers to understand their role in offering the support.

FOR MORE INFORMATION Discover a career with Accenture by visiting, accenture.com/gb-en/careers

Accelerating Disability Inclusion Empowering workplace equality for all

Visit accenture.com/careers

NHS Lothian Opportunities Over 100 career paths – one employer We recognise the value that everyone brings to our organisation.

Through our ‘Job Interview Guarantee’ we will consider you on your abilities and guarantee an interview where you meet the essential criteria for the post. We have a wide range of jobs at entry and qualified level and offer great opportunities such as DFN Project SEARCH a business led work preparation programme for young people with disabilities – and much more.

Further information on NHS Lothian initiatives; www.careers.nhslothian.scot.nhs.uk email: careersforall@nhslothian.scot.nhs.uk vacancies: https://apply.jobs.scot.nhs.uk @NHS_Lothian @yourNHSLfuture

Earn

Learn

Progress

SKILLS

AMBITION

You can build on the skills you are good at

You can match your skills to those we need

STRENGTH

INTEREST

You can support your career goals

You can develop your interests into a career

Awards Aware awardsnetwork.org

The call for FAIR ASSESSME As exam results are replaced by grades based on teacher assessments, leading charities for people who are D/deaf/HoH, blind or visually impaired are calling for assurances that 300,000 pupils aren’t treated unfairly

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E

arly in 2021, it was confirmed that exam results would be replaced with grades based on teacher assessments for the second year running. The measure has been put in place to ensure the safety of teachers and students due to the pandemic, but it has raised concerns around accessibility and inclusion.

The National Deaf Children’s Society (NDCS), Royal National Institute of the Blind (RNIB), the Professional Association of the Vision Impairment Education Workforce (VIEW) and the British Association of Teachers of the Deaf (BATOD) are now demanding assurances and actions to ensure a group of pupils isn’t left behind.

“Deaf students have had to work harder to make progress in education compared with their peers and now risk being let down at the final hurdle,” stresses Martin McLean, education policy advisor at NDCS. “I am Deaf too and know first-hand some of the barriers Deaf young people face in accessing their education.”

The four organisations want specialist teachers and other education professionals involved in the gathering of evidence to ensure pupils’ abilities are reflected in grades.

“Deaf candidates and vision impaired candidates are quite a small group, so it’s very important to remember that just because they’re a small group they shouldn’t be overlooked,” emphasises Paul Simpson, national executive at BATOD.

EVIDENCE Grades will be based on teachers’ knowledge, using mock tests and class assessments to back them up.

“There is some nervousness when you don’t know which evidence teachers will be using to grade a student,” admits Martin. “Exams are very formal situations for which there is a lot of preparation and you can make sure it is as accessible as possible for a student.

When using marks from classwork or informal tests then you might not have had the same discussions around accessibility.

enable education

There is a bigger issue here about the quality of access to education for deaf children and young people in general

ENTS “Deaf children and young people have been hit with reduced access to the support they are used to, such as from Teachers of the Deaf, who visit schools and colleges to support them with accessing classes and learning materials.”

Some D/deaf/HoH, blind or visually impaired students are given access arrangements to ensure they are treated equally to other young people in education settings and during test situations. Over the last year when home learning has taken precedent, these haven’t always been in place for everyday learning, let alone testing.

The most common access arrangement is 25 per cent extra time in testing, giving young people more time to process what questions are asking of them, but others include British Sign Language interpretation of questions, computer readers and scribes.

The assurance that specialists would be consulted in gathering evidence would ensure it is noted if these access arrangements were in place during mocks and class tests.

“We would like that to be compulsory that the advice of a specialist is sought and the accessibility arrangements that were in place for any piece of evidence used is documented,” explains Caireen Sutherland, principal education officer at and a member of the executive committee at VIEW. “Where accessibility wasn’t in place that it was really clearly documented as why that evidence is still having to be used, we want a more robust system that clearly outlines specialists were involved.”

Involvement of education professionals who are aware of these pupils’ abilities and requirements will ensure a fairer system.

“The specialist teacher involved knows the student and the implications of the deafness in this case and they can be involved, so the main thing we are asking for is that centres should involve those teachers pro-actively,” adds Paul. “We want that to be enshrined and the Department of Education to indicate in the strongest possible terms that a centre should involve these professionals in that judgement.”

In line with these changes, the four organisations also want to see an appeals system that reflects the mode in which grades are being formulated.

DISRUPTION ithout confirmation of these measures for 2021 summer assessments, around 300,000 pupils could experience disruption to their future plans.

“If young people are disadvantaged through unfair grading, combined with lost learning through the pandemic, then it becomes more difficult for them to achieve their ambitions,” worries Martin. “Imagine how demoralising it would be to have teachers award your exam results based on a test that you struggled with on the day because you couldn’t fully understand the instructions or you ran out of time to give your answers.

“There is a bigger issue here about the quality of access to education for deaf children and young people in general.”

Access to college, university and the job market could all be affected along with the level at which young people can progress through school.

“We would really worry about them not getting the grades they deserve and are academically able of getting and it then impacts on their next tier of choices, potentially it has a huge impact on the next stage of their education and we would really hate to see them disadvantaged in that way,” stresses Caireen. “We would really hope that a decision is made sooner rather than later so everyone knows what the system is and that enables people to start gathering the evidence.”

As these organisations, specialist teachers, schools and pupils across the country await clarification from the exam board, it is hoped that these pupils won’t be left behind during an already difficult period of time for children and young people.

FOR MORE INFORMATION

Learn more about the concerns around exam grades: RNIB www.rnib.org.uk BATOD www.batod.org.uk VIEW www.viewweb.org.uk NDCS www.ndcs.org.uk

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Have pride

YOU’VE GOT THE SKILLS.

Build connections

WE’VE GOT THE OPPORTUNITIES. ALL WE NEED IS YOU.

Improve Well-being

Increase Self-esteem

VOLUNTEER WITH YOUR LOCAL SSAFA TEAM We need your skills at SSAFA to continue making a lasting difference to the lives of serving personnel, veterans and their families.

Find out more about a volunteering role that will value your talents visit: ssafa.org.uk/volunteer Registered as a charity in England and Wales Number 210760 in Scotland Number SC038056 and in Republic of Ireland Number 20202001. Est. 1885. S604.1220

enable support

THE POWER OF MUSIC FOR

DEMENTIA There are more than 900,000 people living with dementia in the UK, with this number expected to rise to over a million by 2024. As families progressively lose time with their loved ones, nurturing connection is possible through music edicated to maintaining connections for people living with dementia and forming new ones, the Music for Dementia (www. musicfordementia.org.uk) campaign was established in 2018.

“Our founders Neil and Nicky had seen such great work happening in the music and dementia space, but it was very fragmented, disconnected, and there wasn’t the parity with people with dementia,” explains Grace Meadows, programme director for Music for Dementia (MfD). “We had [looked at becoming] united in this, how do we galvanise everyone to get behind something we believe strongly in: the power of music for people with dementia.”

D

UNITED By forming a united voice of researchers, practitioners, academics and people living with dementia, the organisation hopes to bring this power to the forefront of the sector so that it can have a positive impact both behaviourally and systematically.

“There is no cure for dementia, and therefore the onus really does sit

with trying to help people living with dementia, and ensuring those caring for them, importantly, have access to a tool that is readily available but not necessarily known about,” stresses Grace.

“This needs to be part of really good dementia care, we’re not saying it would be nice to have, it’s essential and we have the science and real-world data to back that up.”

STORIES Sharing the stories of people living with dementia is key to the campaign.

In 2020 father and son, Nick and Paul Harvey, touched the hearts of people around the world when Paul, a former music teacher who has dementia, improvised a song on the piano after being given just four notes. The song has gone on to be released as a charity single and inspired a £1million donation to the Alzheimer’s Society (www. alzheimers.org.uk) and MfD by Sir Tom Hunter.

“Dementia takes those relationships away from us because you’re not connected, but music brings that connection right back to the fore,” emphasises Grace.

The organisation wants to make music integral to the dementia care model, but adding music into care on a daily basis can easily be done on a small scale.

CONNECTION “[It works] as an aid to make those everyday tasks more pleasurable, more enjoyable, more impactful, more meaningful,” stresses Grace.

Weaving music into dementia care can be as simple as playing something this person likes on a device, or simply humming or singing part of a song.

“It sets up a connection,” adds Grace. “[There may not be] language skills, but you might find that it triggers eye contact and suddenly you have a connection established between the carer and individual.”

By continuing to share stories from people living with dementia benefitting from the power of music, MfD hopes to engage at the highest level and insight change in dementia care.

FOR MORE INFORMATION o on ou no ou d n fit o t www.musicfordementia.org.uk

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FUNDRAISING IS FLYING HIGH Using art as an emotional outlet during lockdown, one young boy from Sunderland has turned his passion for art and aviation into a successful book; all whilst raising money for Armed Forces charities

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he height of lockdown in 2020 was an emotionally draining time, and 13-yearold Jack Berry turned to drawing as a form of therapy to help release his emotions. Spurred on by his favourite aircraft the Lancaster, part of the Battle of Britain Memorial Flight (BBMF), and the pilots that participated in WWII, Jack started to draw.

EMOTIONS “I have always loved aircraft and started painting them to help me express myself,” says Jack. “Drawing has helped me to process my emotions. It has also enhanced my communication through my own creative expressions, my imagination is improved, and I have a greater abstract of thinking about things that are of great importance to me.”

For Jack, who is severely autistic and has depression, anxiety and is selectively mute, drawing has been a significant outlet.

“Creative art and painting has provided Jack with some emotional stability and a healthier way for him to express how he is feeling,” explains Jack’s mum, Sara.

After Sara posted some of Jack’s paintings online, the drawings were celebrated by many in the Armed Forces community, even racing all the way to pole position with Formula 1 favourites.

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Jack’s artwork featured in the book

STAR QUALITY Now Jack’s drawings have been put into print in his book, Flying High in the Sunset Silence. Cementing Jack’s adoration for aviation, the title of the book is inspired by a poem originally written by a Spitfire pilot.

Flying High in the Sunset Silence features Jack’s drawings alongside copy written by pilots about their experiences of flying, plus the history of each plane and helicopter. Contributors to the book also include F1 driver Lando Norris, former driver David Coulthard, and Red Arrows squadron leader Adam Collins.

Jack enthuses: “I really like to see my drawings beside what the pilots have written, I have been able to use

my drawings with the pilots as an alternative to verbal communication.

“When my favourite pilot, Flight Lieutenant Seb Davey, said he was proud of me I felt happy because I am doing something good. When Lando Norris, wrote his part for my book, I was so excited.”

Jack is raising money for a range of charities, including SSAFA, the Armed Force’s Charity’s Forces Additional Needs and Disability Forum through sales of the book, which will provide the chosen charities with vital funding.

Jack’s efforts have also seen him receive a Point of Light award from the Prime Minister, given to outstanding volunteers.

“I would like to see the monies raised help others that have been affected by the virus,” Jack adds. Sara also hopes the book and fundraising will help to raise awareness of the autistic spectrum, and how drawing has helped ac to find a way to communicate.

FOR MORE INFORMATION

You can get Flying High in the Sunset Silence on Amazon (www.amazon.co.uk). Learn more about SSAFA’s Forces Additional Needs and Disability Forum at, www.ssafa.org.uk