The UK’s leading disability and lifestyle magazine
enablemagazine.co.uk
March / April 2022
AN ACCESSIBLE FUTURE Calling for inclusive and adaptable communities
SLEEP AND CHRONIC PAIN
The need for a holistic approach to treatment
YOUNG CARERS
Taking action to reduce isolation and increase support
Sophie
MORGAN Finding acceptance in her new memoir, Driving Forwards
Welcome Get ready to enjoy another engaging issue of Enable for March/April
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EDITOR’S PICKS... 22 MODEL BEHAVIOUR: ELLIE GOLDSTEIN From starring in Gucci campaigns to being named Gamechanging Model of the year by GLAMOUR, Ellie Goldstein is making history and has no plans of stopping. 44 HEALTHY LIVING JAMES Food blogger James Wythe discusses his journey with ME before sharing a recipe from his debut cookbook. 70 CLOSING THE INCLUSION GAP What needs to change to remove the current disability employment gap and the disability pay gap?
s we approach the beginning of spring it’s time to delve into a new issue of Enable Magazine. On page 10 presenter, artist and now Enable cover star Sophie Morgan gives us a unique insight into the process of writing her new memoir: Driving Forwards. Emotional, practical and financial support can be essential for unpaid carers’ health. On page 13 we learn how carers can find out about their rights before discussing Young Carers Action Day on page 16. When living with a progressive condition, it is important to consider your future care. Use our step-by-step guide on choosing the right care home on page 32. More than three decades since the movement that helped create many of the disabled civil rights we know today, a cast with lived experience of disability are bringing the story to the BBC. On page 40 actress Ruth Madeley discusses the show alongside writers Jack Thorne and Genevieve Barr. In 2022 there are still calls for greater awareness and acceptance of different conditions. On page 25 we highlight the need for autism acceptance; Cassidy Megan, founder of Purple Day, discusses global epilepsy awareness on page 28; and on page 48 a member of the HoME Coalition gives insight into the need for more accessible housing. Plus, mouth artist Henry Fraser talks about his work so far on page 82, we learn about the relationship between sleep and chronic pain on page 37, and a project bringing theatre into care homes takes us behind the scenes on Get in touch page 81. All of this and much more inside. editor@enablemagazine.co.uk facebook.com/enablemagazine
Emma Storr, Editor
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Behind the scenes
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PUBLISHER Denise Connelly denise@dcpublishing.co.uk EDITOR Emma Storr emma.storr@dcpublishing.co.uk EDITORIAL CONTRIBUTORS Tim Rushby-Smith Alisdair Suttie DESIGN AND PRODUCTION Lucy Baillie lucy.baillie@dcpublishing.co.uk SALES Marian Mathieson marian.mathieson@dcpublishing.co.uk ENABLE MAGAZINE www.enablemagazine.co.uk
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Over the next few months, Enable’s sales director Marian will be training to take on a 26.2-mile trek through Glen Coe, equivalent to a marathon.
ONLINE TIME TO GET READING
To mark World Book Day on 3 March, the team behind Enable launched their own office book club to tackle isolation and find new reads.
Visit the Enable website to ensure you never miss the latest news, interviews and information from the disability community.
©DC Publishing Ltd 2022. 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.
WIN
Enter our competition to win a Hotel Chocolat Velvetiser on page 54.
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What’s inside March / April 2022
Care
13 CAMPAIGNING FOR CARERS RIGHTS Where can unpaid carers turn to learn about their rights? 16 YOUNG CARERS: TAKING ACTION Marking Young Carers Action Day 32 CHOOSING YOUR FUTURE CARE Considering your needs to find the right care home
Interview
10 DRIVING FORWARDS Sophie Morgan takes us inside the creation of her new memoir
Voices
20 NAVIGATING NEURODIVERSITY How can diagnosis as an adult help your mental wellbeing? 30 ROLLING UP THE RED CARPET Columnist Tim Rushby-Smith shares a recent exchange with a holiday property 4
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82 BEHIND THE SCENES WITH HENRY FRASER The mouth artist discusses his progression
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Health
37 UNDERSTANDING SLEEP AND PAIN The need for a holistic approach
Life
18 MY MS STORY People living with MS share their experiences 25 AUTISM ACCEPTANCE Finding a sense of belonging 28 EPILEPSY AROUND THE WORLD Going purple for epilepsy 35 THE WOW FACTOR The local project tackling isolation with weekday activities 40 THEN BARBARA MET ALAN The BBC drama on the fight for disabled civil rights 43 GET INTO GARDENING Try a new hobby this spring
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WIN
44 IN THE KITCHEN WITH HEALTHY LIVING JAMES James Wythe discusses his journey with ME and shares a recipe 47 THE DIARY Virtual and in-person events for March and April 52 PRODUCT ROUNDUP Discover new products to help your everyday life 81 DEMENTIA AND THE ARTS The programme bringing theatre to care homes
Housing
48 PUTTING HOUSING ON THE AGENDA Campaigning for accessible housing and communities to become the standard
Finance
59 BENEFITS CHANGES EXPLAINED We break down the expected changes for the next financial year 60 BUILDING A BUDGET A step-by-step guide to reduce financial stress
A HOTEL CHOCOLAT VELVETISER ON PAGE 54
Employment
Education
70 CLOSING THE INCLUSION GAP What has to change to close the disability employment and pay gaps?
Motoring
67 A DUTY TO REPORT What effect could mandatory disability workforce reporting have?
73 DEVELOPING SUPPORT New training to improve access and increase employment rates 75 PROVIDING CANDIDATE RESOURCES Jane Hatton, founder of Evenbreak, highlights helpful resources 76 INCLUSION AT WORK Creating inclusive recruitment processes with PageGroup 78 THE VALUE OF EMPLOYEE INPUT Registers of Scotland discuss their commitment to colleagues
68 HIGHER EDUCATION: YOUR NEXT STEPS Preparing for your future
56 REVIEW: NISSAN QASHQAI Alisdair Suttie hits the road in this SUV
Sport
63 FINDING NEW ACTIVITIES Pick up a new sporting hobby 64 SPORT ON SCREEN What to watch this spring and summer
Spotlight
22 MODEL BEHAVIOUR Model Ellie Goldstein chats Gucci, going viral and changing perceptions
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News
PROPOSALS COULD MAKE AIR TRAVEL EASIER FOR DISABLED PASSENGERS NEW GOVERNMENT PROPOSALS COULD make it easier to secure compensation for wheelchairs that are lost or damaged during air travel. A consultation on reforming air passenger rights includes measures and proposals to improve the accessibility or air travel after threefifths of disabled air passengers said they find it difficult to access and use airports or air travel. Currently, wheelchairs and mobility scooters are
carried in the hold of aeroplanes and classified as baggage, this means that compensation for damage is extremely limited. The consultation, which closes on 27 March, asks whether all airports flying to or from the UK should have to sign up to an approved alternative dispute resolution (ADR) scheme. These schemes provide a way to escalate complaints, avoiding costly and timeconsuming court action.
Travel charity to expand the UK’s cycling and walking network ACTIVE TRAVEL CHARITY SUSTRANS has announced plans for a major expansion of the UK’s national cycling and walking network. The plans have been made in a bid to widen accessibility while improving opportunities for low carbon travel. The charity manages the National Cycle Network and hopes to provide travel links between every community of at least 10,000 people in the UK. The plans were published in Sustrans’ progress report which also detailed the need to achieve greater quality of access on the existing 12,786-mile network. The move to make this network more accessible will benefit not only pedestrians but businesses: it is estimated that in 2019 local businesses benefitted from £1.7bn from people using the network for leisure and tourism.
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Programme launched to improve contact with nature
MENTAL HEALTH CHARITY MIND has launched a new programme in Norfolk and Waveney, aiming to help adults to develop a deeper connection with nature. Nature Connect will run regular group activities in three urban locations to improve resilience and overall mental health. The project, which will take place in Norwich, King’s Lynn and Great Yarmouth, will include resilience workshops, sowing and growing groups, mindful walking and forest bathing, and Nature Connect workshops and groups.
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enable news
News New strategy for working with and for disabled people around the world THE UK GOVERNMENT FOREIGN, Commonwealth and Development Office (FCDO) has released the disability inclusion and rights strategy for 2022 to 2030. The strategy aims to uphold the UK’s ambitious approach to work with and for people with disabilities around the world, not just in the UK. Setting out the country’s approach on disability inclusion up until 2030, it builds on
previous targets, aims and achievements set out at the Global Disability Summit in 2018 and the Department for International Development’s disability inclusion strategy. With an emphasis on voice, choice and visibility, the strategy is key to increasing the rights and freedoms of disabled people around the world. Read the full strategy at www. gov.uk
GUIDELINES RELEASED ON PHYSICAL ACTIVITY FOR DISABLED CHILDREN THE UK’S CHIEF MEDICAL officers have published the first ever guidelines on physical activity for disabled children and young people. The guidelines support wider work by the UK Government to tackle health disparities across the UK, helping everyone to lead healthier, happier lives. The new guidance recommends 20 minutes of exercise per day and a strength and balance activity three times each week. This aims to support disabled children and young people to improve their physical and mental health throughout their lives. Underpinned by research from Durham University, University of Bristol and Disability Rights UK, an infographic accompanying the guidance was the first of its kind to be coproduced with disabled children, young people and their families.
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KICKSTART EMPLOYMENT SCHEME CLOSES JOBS AVAILABLE THROUGH THE Department for Work and Pensions’ Kickstart Scheme will close to candidates during March 2022 due to the employment scheme coming to an end. The programme, which was launched in September 2020, delivers funding for employers offering new job roles for 16 to 24-year-olds who are in receipt of Universal Credit. Applications closed to employers in December 2021, but candidates can still search and apply for jobs with the opportunity to start a role up until 31 March 2022.
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24/02/2022 14:10
Reflecting on her life before, during and after her accident and rehabilitation, Sophie Morgan’s memoir Driving Forwards is a raw and intimate look into her personal experiences
DRIVING FORWARDS
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hen 2020 began artist and presenter Sophie Morgan had plans to create a new travel documentary, but when the coronavirus pandemic arrived her goals had to change. After talks with her literary agent Sophie had a new idea: a memoir reflecting on her life experiences and the accident in 2003 which left her paralysed at just 18-years-old.
WORTHWHILE
“It was honestly the hardest thing I’ve ever done but the most worthwhile,” reveals Sophie. “I have spent most of my life looking forward not looking back, and trying to focus on the next thing.” The process of writing itself was new to Sophie but after speaking with experienced friends she opened her laptop and began.
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“I have always known when my story starts: whether it’s healthy or appropriate or not, everything in my life has revolved around that day when I had my injury,” admits Sophie. “I knew where to begin and luckily, I have always kept diaries throughout my life but particularly around the time when I had my accident in 2003.” As a painter and an artist, Sophie approached the task as another form of expression, allowing her to explore her experiences 18 years on from her injury. “The book is split into three parts and that in itself felt quite natural because there’s before my injury, during where I was doing rehabilitation and then the rest of my life, and it does feel like it’s very much compartmentalised like that,” shares Sophie. “I don’t think I could have done this at any other time of my life.”
“It has been half and half, 18 years before and 18 years since. I’m now very far down the line and I’m able to look back without it being so painful, I certainly know that I’m still a work in progress but there is so much that I’ve learned,” adds Sophie.
REFLECTING
This feeling reached its peak once Sophie had finished writing the book and went on to record the audiobook. “That was very heavy but I had the most wonderful man as the sound engineer who sat with me for three days,” remembers Sophie. “It was very moving because I haven’t really told my story out loud to anybody before. “After we were done I got in the car and just thought ‘I’ve done it’, but it wasn’t just about sharing it with
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interview someone else, it was more about telling myself what I’ve been through. It was very strange and surreal to be reading my life back to myself.” Creating the memoir meant reflecting on the ways the accident affected Sophie, her relationships and even her own perceptions of disability in the past. “It’s not just about recounting the story, it’s about remembering the impact it had,” states Sophie. “I realised quite early on that I wanted to take the reader on the journey of acquiring a disability, of waking up and coming to terms with what happened to me.”
CONNECTIONS
Throughout the book, Sophie’s raw account of her experiences explores how the relationships around her changed. “All of the connections and relationships in my life shifted, some for the better and some for the worse, but I created stronger ones and new ones,” shares Sophie. “At that time the things that mattered most to me were literally the people around me and that continues to be the same.” For Sophie, these relationships also helped her to remember who she was before her accident. “My family and friends understood who I was so they were able to give me back parts of myself which I might have lost otherwise,” recalls Sophie. “It can be quite hard trying to find your identity again so you need those people around you.” Like for many people who acquire a disability, Sophie’s injury didn’t just have an impact on her. “In my experience disability doesn’t just happen to the person that is living through it, it also happens to everyone around them,” reveals Sophie. “My family and I went through a learning curve and we didn’t know what we were doing. “We didn’t know where to turn and we made massive mistakes but we also learned that it’s ok to get it wrong, and you will get it wrong, but as long as you love each other and you can be honest
with each other then it will be ok.”
RECONSIDER
Behind the pages of Sophie’s story is another motive: getting readers to reexamine their definition of disability. “If I could make one person stop for a minute and reconsider what they thought about disability that would be a life goal fulfilled,” reveals Sophie. “The reason for that is I had ideas about what disability meant before my accident. “When I became disabled, I struggled a lot as a result because I had to analyse my own ableism. Now that I’ve spent 18 years as a disabled person I know that disability doesn’t fit into one group.” “This can lead to a lack of understanding or empathy, because each disability is so different,” adds Sophie. “Spinal injury has its own characteristics and I wanted to share those, but I’m not representative of everyone and I want to stress that quite hard: everyone’s
relationship with their disability is completely different.” To a reader, Sophie’s book is a story of strength, family and rediscovering her identity, for Sophie there is a dual meaning to the memoir. “This is the most honest I’ve ever been about my experience and I’m so proud of that, but it also marks the end of this chapter in my life because it’s 18 years before and 18 years after,” admits Sophie. “I’m at a point where I’m without a shadow of a doubt the most comfortable with who I am and with my disability, now I’m just open to whatever happens next.” FOR MORE INFORMATION
Sophie’s memoir, Driving Forwards, will be available from 17 March in hardback, e-book and audiobook.
PHOTOGRAPHY BY TOM D MORGAN
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’s r e ts r C a igh r
l a n o i t Emo rt s u pp o
S o c ia l c a re f u n ding
Campaigning for
CARERS RIGHTS For the UK’s estimated 13.6 million unpaid carers, an understanding of what practical, emotional and financial support is available is essential
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harities like Carers UK are working to support unpaid carers while advocating for their rights and campaigning for change, but there are increasing calls for more help from the UK Government. “Caring is often part and parcel of life, of family life in particular and it affects far more of us than people generally think,” reveals Emily Holzhausen OBE, director of policy and public affairs at the charity. “People take on average two years to identify themselves as carers and we have found that as a result they don’t always know what support they’re entitled to. If carers know about their rights and entitlements then they have the ability to make choices about their lives.” Current support doesn’t go far
enough and there has to be more done to increase help in all areas.
DIFFERENCE
“We work extremely closely with lots of disability organisations and age organisations and carers are very clear about what makes the biggest difference in their lives,” expresses Emily. “It’s quite often a better quality of support for the person that they care for, but carers need help in their own right, too.” Practical support like help for the person you care for from social care services is key, but so is emotional support. “There can be all sorts of complicated emotional issues for carers, sometimes people see their role change from wife or husband, partner, son or daughter, they might see that role reverse
completely,” explains Emily. “There are different challenges and emotional pressures around caring and people can get very tired without the right kind of help.” Carers UK have their own online forums where people can share their experiences and a directory of support in different local authorities alongside forums from disability-specific charities, but the charity also run online sessions offering emotional support. “Carers UK have Share and Learn sessions where people can join online along with our Care for a Cuppa sessions which are for tea and a chat,” reveals Emily. “If people need more intense support like counselling then you can get referrals through your GP.”
COST
At a time when the cost of living is
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JUGGLE
In order to increase support, a better understanding of carers’ needs is necessary. This has to filter into workplaces in order to make a real difference. “Employers are becoming more aware of their employees with caring responsibilities and we’ve seen that happen during the pandemic,” explains Emily. “People were having to juggle work and care during those really challenging times and a lot of care services have still not returned to their former pre-pandemic levels.” “Last summer we asked carers whether their employers were
r e t a e r G s s e n e r awa
“Caring is often part and parcel of life, of family life in particular
“
continually increasing, concerns have been raised about the financial support currently available for carers and the eligibility criteria that comes with it. “We have got clear evidence that carers who struggle to make ends meet financially have much poorer health and wellbeing outcomes: quality of life is lower, loneliness is higher,” shares Emily. “Carers say it’s an absolute scandal that Carer’s Allowance is the lowest benefit of its kind. We’ve been pressing for significant increases in carers’ benefits. “With the cost of living crisis, we’ve also been calling for the Warm Home Discount Scheme to be extended to carers. We don’t think the government support package goes far enough and it most definitely needs to be boosted for disabled people and carers.”
supportive, lots of them said they were, but there was a pretty large chunk who didn’t get certain types of support whether that’s flexibility, reduced hours or otherwise,” adds Emily. “They said they were at risk of having to give up work to care and that’s a huge cost to them personally, but of course it also costs the employers because you’ve got a loss of skills and you’ve got recruitment costs on top of that.” Better awareness of carers’ responsibilities is of benefit to everyone, not just carers themselves. To achieve this, carers’ opinions have to be valued, especially when creating or amending government policy.
INFORM
“Carers need to be at the heart of policy making, their experiences should always inform practice and outcomes,” states Emily. “We have three major campaigns
l a ic t t c or a Pr upp s
ongoing at the moment: one is around cost of living, one is around social care reform and the need to invest in care, and we are also campaigning to maintain carers’ rights which are being taken away in the Health and Care Bill. “The big challenge really is the funding in social care across all age groups. Although the government has said it will commit further funding to social care through the Health and Care Levy, that won’t come in for several years and its certainly not enough to tackle the shortage of care that we have right now.” Alongside these causes, Carers UK have tirelessly campaigned for change throughout the pandemic and this work is ongoing. “Throughout the pandemic we’ve been campaigning on a whole range of different areas that have been very much informed by carers and their concerns, the new Living With COVID plans are no different,” explains Emily. “Carers have a number of concerns about that and we are talking to government and asking them if they will consider carers for free tests going forward because they worry about keeping their relatives safe.” Work by organisations like Carers UK is making a difference for unpaid carers every day, but more has to be done at a government level to ensure the necessary support is available for people who need it.
I n c re a s e d C a re r ’s Al lo wa n c e
FOR MORE INFORMATION
Use the Carers UK website (www.carersuk.org) to find support, email advice@carersuk.org or call 0808 808 7777 14
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YOUNG CARERS
TAKING ACTION
In the wake of the coronavirus pandemic young carers are still fighting for support, this March they’re taking action ISOLATION
person, so it has had a massive impact on their mental health. “This year they told us that tackling “We want to see this as a priority for isolation was really important because governments across the UK, for them to it’s a huge issue for a lot of young monitor young carers and what support carers,” reveals Nicola. “They also told is there.” us about the importance of regular short breaks from their caring situation, ENGAGEMENT these can be extremely beneficial and In order to provide better support for give them that time to actually just be young carers and young adult young people.” carers, there also has to be more Armed with these calls information for education from young carers, the Young Carers providers and employers. charity is calling for greater “It’s crucial that staff in Action Day respite and mental health educational institutions support. takes place on have a solid understanding “We need more 16 March 2022 of who young carers and opportunities within the young adult carers actually community for young carers are so that if someone and better access to mental comes forward they can be fully health services because this supported,” shares Nicola. “The same group has been disproportionately is necessary for employers: young affected by the pandemic,” carers shouldn’t be further financially stresses Nicola. “They’ve disadvantaged just because they have had to balance their these responsibilities.” education, work and Carers Trust networks throughout the caring role as well as UK will help to spread this message on just being a young YCAD by running events and activities in their local area. “We also have huge social media engagement when it comes to the day and so young carers and anyone really can keep up with what’s going on,” enthuses Nicola. “For any young carers who aren’t connected to a service and haven’t identified themselves as young carers, we’re hopeful that off the back of this campaign and social media engagement we will be able to really support these young people to come forward and learn about the support that’s there for them.” Get involved and share the message this YCAD using #YoungCarersActionDay on social media and by sharing your experiences. FOR MORE INFORMATION
Access resources for YCAD from Carers Trust (www.carers.org).
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PIC: © CARERS TRUST. ILLUSTRATIONS BY ELEANOR BEER
O
n 16 March, young people, professionals and charities across the UK will unite to mark Young Carers Action Day (YCAD), an awareness event organised by Carers Trust to highlight the contribution young carers make to their families and local communities. “This day is all about raising public awareness of what these young people go through, not just for young carers but also for young adult carers,” highlights Nicola Bell, youth engagement officer at Carers Trust Scotland. “We look at the experiences of young carers with things like school, but also that vital transition into adulthood for young adult carers aged 16 to 25.” Each year the theme for the day is dictated by these young people and for 2022, YCAD is highlighting the theme ‘Taking Action on Isolation’.
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15/02/2022 16:56
My MS story Affecting an estimated 110,000 people in the UK, MS can impact everyone in a unique way
T
here are three main types of MS impacting people around the UK, but each type can affect everyone differently. Stewart is 75 and lives with progressive MS while Bayan is 26 and lives with relapsing remitting MS, but the two have had extremely different experiences in their diagnosis, symptoms and treatment.
A diagnosis doesn’t have to mean you need to stop in your tracks
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STEWART, 75 PROGRESSIVE MS Stewart received his MS diagnosis over a decade ago when he was 61-yearsold, but before this he already had base knowledge of the condition due to his sister previously being diagnosed. “Initially it didn’t really impact on my daily life too much except I couldn’t walk any long distance, then slowly over the years the distance that I can walk has decreased quite dramatically,” reveals Stewart. “I also developed rheumatoid arthritis about the same time which has complicated
matters considerably.” Stewart, who ran a woodworking business, continued working for nearly two years after his diagnosis before retiring early when he was unable to continue with physical work. His condition has progressed since, but he hasn’t let it stop him pursuing his hobbies. “I’m a beekeeper and as my problems got worse lifting things and my mobility are a problem, but it doesn’t mean you can’t do things,” explains Stewart. “I’m active there in the admin work, I do what I can physically and I am teaching beekeeping.” Stewart is the chairman of the Somerset Beekeepers, one of the largest associations in the UK, and would encourage people who recently received a diagnosis to find new ways to do the things they love. “A diagnosis doesn’t have to mean you need to stop in your tracks, you’re
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BAYAN, 26 RELAPSING REMITTING MS
not going to be able to do as much as you used to but you can still do an awful lot,” offers Stewart. “If you’ve got physical disabilities it will stop you doing certain things, but there’s still a lot of things you can do. “Don’t give up, it’s not the end of the line just because you have a diagnosis of MS, there are always alternative ways of pursuing those hobbies and pastimes.” While he has lived with the condition for many years, Stewart isn’t on any treatment and feels there needs to be greater understanding of what MS really is. “People just don’t realise this is a whole-body thing, it’s not just legs or arms, that’s just what people see,” explains Stewart. “This is the case but there’s also a lot of support out there from organisations like the MS Society if you go and look for it, but you do have to be proactive: it’s not going to come to you.”
Like Stewart, Bayan also experienced symptoms before his diagnosis, first noticing them when he visited an art gallery with a friend and his vision was affected. After having numbness in the left side of his body Bayan was advised to seek medical attention. “They did a scan and initially they thought it was a stroke and thought they found a blood clot in my brain, but after more scans they realised it was a lesion,” remembers Bayan. Bayan’s symptoms started in December 2019 with relapses happening in July 2020 and October 2020 before he finally received a diagnosis in November 2020. This timing meant that Bayan had to come to terms with his new condition while the coronavirus pandemic was at its peak. “I had no idea about MS before so when I was diagnosed it was a scary time, especially knowing that I had this condition pre-diagnosis,” shares Bayan. “I think the pandemic added to those unknowns because if I caught coronavirus I didn’t know how it would affect me. “I think just having the diagnosis officially confirmed helped quite a lot, I knew what I was dealing with and was able to look for potential solutions.” Although he felt relieved at getting a firm diagnosis, Bayan also felt isolated. “Initially I felt very alone but I think once you find other people who are going through the same thing then you’re suddenly not dealing with it by yourself,” shares Bayan. “I became part of this community of thousands of other people in the UK.” Bayan developed a relationship with the MS Society, now sitting on the charity’s board of trustees, and is an active member of the young person’s support group MS Together. “Previously having little understanding of the condition myself, I was quite keen to be as open as possible,” explains Bayan. “No two days are the same: sometimes you can be feeling great and enjoy yourself but other days you really wouldn’t be able to leave the house. When it comes to MS it doesn’t affect people equally, especially across different generations.”
“Being part of MS Together helped me to see that I could still have a life,” adds Bayan. After his diagnosis, Bayan quickly started treatment but found that common medications weren’t helping him. “Some people manage to kind of control their MS with disease modifying therapies but it wasn’t effective for me and so I was eligible for HSCT,” reveals Bayan. HSCT is a treatment involving drugs commonly used in chemotherapy and a stem cell transplant in the hopes of improving patients’ symptoms. “It has been a rollercoaster both physically and emotionally but it’s definitely been a positive experience for me, I’m so grateful to the team that worked on it,” expresses Bayan. “At the same time, I’m continually seeing that when it comes to treatments there’s regional inequalities. I have friends in Scotland who are approved for HSCT but they aren’t able to access it and I have found that incredibly upsetting.” As he continues his work with the MS Society and MS Together, Bayan would like to see equal access to treatments across the UK. FOR MORE INFORMATION
Find support from the MS Society at www.mssociety.org.uk or by calling the charity’s free helpline on 0808 800 8000 from 9am to 7pm, Monday to Friday. Connect with MS Together on Instagram @mstogetherofficial
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Navigating
NEURODIVERSITY
After receiving an ADHD diagnosis at 24-yearsold, Ellie Middleton is learning about herself while speaking out about neurodiversity
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efore Ellie Middleton received a diagnosis confirming she was neurodivergent, she had always struggled with her mental health, previously receiving support from adolescent mental health services for anxiety and depression. “It peaked when I was in sixth form and I dropped out of school, it felt like I just couldn’t function,” reveals Ellie. “I’d have five nights at a time where I was really happy and energetic and wanting to do things, then I would suddenly have these breakdowns because everything overwhelmed me and so I didn’t want to do anything.” Despite being told she had anxiety and depression, Ellie didn’t feel this was right, she says: “I felt like anxiety wasn’t the problem, it was the side effect of whatever else was happening because I’ve never been an anxious person.” A counsellor helped Ellie examine the way her mind works and she then started to research autism and ADHD. In October 2021, Ellie received an ADHD diagnosis and while she awaits her autism assessment she describes herself as selfdiagnosed autistic.
VALIDATION
I’m fully embracing who I actually am and I’m much happier
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Having a diagnosis of ADHD has helped Ellie to feel understood and validated, giving her a new perspective on how she thinks and why. “Getting that diagnosis was just like a massive sigh of relief,” enthuses Ellie. “I spent so much time trying to fit into this neurotypical box that right now I’m working out what’s really me and what parts of me I created to cover up or mask. “From an outsiders’ perspective, if they saw me now versus a year ago I’m almost ‘worse’: I’m more chaotic and I guess more emotional, but in the best way possible because I’m fully embracing who I actually am and I’m much happier.” While Ellie started to learn more about who she really is, she also started a position in a personal branding marketing team. “I discovered that it was the social media side that I really enjoyed and then
Ellie Middleton
just stumbled across personal branding,” remembers Ellie. Ellie was encouraged to utilise LinkedIn as a platform in the same way that her clients did but soon went viral for a post about what a professional looks like.
AUDIENCE
“I thought I could add value to the platform by bringing my different perspective on things and then my post just absolutely blew up,” explains Ellie. “I think it’s got around 3.5 million views now and things just keep on building.” Ellie now has more than 26,000 followers on the platform and is using her presence for good. “LinkedIn allows me to shout about the benefits of neurodiversity as well as the struggles,” offers Ellie. “Right now, I’m building this audience and I want to bring as much value as possible and just shout about neurodiversity. “Until my diagnosis I, like a lot of people, had this perception of ADHD being a naughty school boy. I definitely never saw anyone that was like me, so for me I want to bring that representation.” FOR MORE INFORMATION
Follow Ellie on LinkedIn at www.linkedin.com/in/elliemidds
ELLIE GOLDSTEIN
Model behaviour At just 20-years-old model Ellie Goldstein has already made history and has no plans of stopping
JOURNEY
Ellie’s passion for expressing herself in creative ways first manifested in a love of dance, then when she was just 15-yearsold her life changed. “My journey started when I was 15,” recalls Ellie. “I joined up with Zebedee Talent and got my first job with Superdrug, it was the Christmas advert on TV. I always wanted to be a famous model from a very young age. I have never faced any barriers when entering the industry. “I love dance and drama, reading and going out, so that keeps me focused when I’m not modelling.” Zebedee Talent (www. zebedeemanagement.co.uk) is a specialist agency which was formed to increase the representation of people who have previously been excluded in the media. The agency’s roster includes people with a disability, people with an alternative appearance, transgender people and non-binary people. Working with over 500 models and actors across Europe and the US, Zebedee and models like Ellie are helping to change the way society is reflected in media. In recent years there has been an increase in disability representation in the mainstream media with actress RoseAyling Ellis winning Strictly Come Dancing 2021 and press around the recent Tokyo 2020 Paralympic Games, but more needs to be done: according to the Geena Davis
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Never change who you are, never give up
PICS: © DAVID PD HYDE
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efore Ellie Goldstein entered the world of modelling in 2017, she already knew she would find her purpose in fame, but she didn’t realise how big an impact her photos would make around the world. Fast forward to 2022 and Ellie, who has Down’s syndrome, is a recognisable face in the fashion industry, having featured in campaigns for everyone from major designers to high street stores.
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spotlight Institute, only two per cent of people in 2019 advertisements had a disability. Ellie’s popularity within the fashion industry and with the public serves as proof that people’s perceptions are changing.
PERCEPTIONS
Ellie’s portfolio includes work with brands like Vodafone, Primark, Laura Mercier and Nike, but it was a recordbreaking Gucci Beauty and Vogue Italia collaboration that secured her title as the world’s first major model with Down’s syndrome. As part of the brands’ Unconventional Beauty campaign which supports emerging talents, Ellie featured on the Gucci Beauty Instagram feed. This soon became their most-liked post ever and has now amassed over 117,000 likes and 2,200 comments. “I think the Gucci Beauty campaign has stood out as this launched my modelling career,” enthuses Ellie. “After the Gucci campaign I then realised I had changed perceptions around the world and made the history books.” This campaign, paired with countless images from her other work, has helped to change mindsets around the world. Now with five years of modelling behind her, Ellie struggles to pick a favourite piece of work, she explains: “All the shoots and campaigns are incredible and I feel so lucky and honoured. I can’t really pick one.”
ROLE MODEL
While appearing in campaigns and on the covers of magazines, Ellie has become a role model for people with Down’s syndrome and the wider community. Last year, Ellie was recognised for breaking down barriers in fashion with the GLAMOUR Women of the Year Gamechanging Model award. “I was so overwhelmed and shocked that I received the GLAMOUR award, so proud of myself,” remembers Ellie. “It is important that the fashion industry uses different people of all shapes and sizes, disabilities and abilities for representation.” With more than 89,000 followers on Instagram, the comments sections on Ellie’s social media are filled with praise and thanks from people who feel she is paving the way in creating a more inclusive fashion industry. “Social media and my following are very important to me as I get to
show the world and other people with disabilities anything is possible if you work hard and follow your dreams,” explains Ellie.
EMPOWER
Aiming to empower people around the world to advocate for full inclusion in society for people with Down’s syndrome, World Down Syndrome Day (www.worlddownsyndromeday.org) is an event of great importance for Ellie, she says: “World Down Syndrome Day is a great day where we all get to show the world we are like everyone else, what we can do and what we have achieved in life.” The day, which takes place on 21 March each year, is a global awareness event which is officially observed by the United Nations. The date of the 21st day of the third month was specially selected to signify the uniqueness of
the triplication of the 21st chromosome which causes Down’s syndrome. For 2022, the organisers of the event, Down Syndrome International (www.ds-int.org), are asking: what does inclusion mean? People around the world have the unique opportunity to tell others what inclusion means to them using #InclusionMeans and #WorldDownSyndromeDay on social media. As she gets excited to start work on her upcoming projects, Ellie would urge aspiring models with a disability to pursue their passion, she advises: “Never change who you are, never give up, just follow your hopes and dreams.”
FOR MORE INFORMATION
Stay up to date with Ellie’s work on Instagram @elliejg16_zebedeemodel
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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
enable life
Autism acceptance Awareness is an essential part of ensuring autistic people get the support they need, but acceptance can hold greater importance, allowing people to feel like they belong in their communities
I
t is estimated that one ACCEPTANCE in 100 people are on “In April we do a lot of awareness the autism spectrum raising, teaching people about what with around 700,000 autism is and making sure that autistic autistic adults and children in the UK. people feel more accepted,” explains Most people around the country will Chloe Jones, a fundraising officer at recognise the word autism, but not Autism Together. The organisation many have a true understanding of extends celebrations and events for the what it means or how to support people week to a whole month, marking April on the spectrum. That’s why as Autism Acceptance Month. events like World Autism In earlier years, awareness has Acceptance Week and been the main focus of the World Autism Awareness World Autism events, but now organisations Day, taking place on 2 including Autism Together Acceptance Week April, are so important. and the National Autistic takes place from This comes down to Society are making a change 28 March to the very names given and asking for acceptance. 3 April 2022 to the day and a move “It’s all about listening away from talking about to autistic people and being raising awareness of autism. conscious of how we approach the subject,” insists Chloe. “We’ve been listening and training for years and what people want is acceptance. “We’ve tried to raise awareness and we have, now it’s about all being accepted into society, accepting people for who they are and not just having people be aware, we want more than that.” Autism is an extremely unique diagnosis: each individual has a different experience with the condition affecting
Chloe Jones and Michelle Walklett
Yvonne Smith
their daily life in various ways. This can also mean that it is difficult to get a diagnosis, especially for girls and women. “There’s a big difference now between acceptance and awareness,” expresses Yvonne Smith, part of the training team at Autism Together. “It’s so important because autistic people are everywhere, more and more people are getting diagnosed, especially later in life. “Unfortunately, through history there hasn’t been much progression in acceptance of autism and I hope we’re now in a place where we can move
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forward in a much more positive way.” Without acceptance, people can feel left out or different, sometimes having a long-term effect on confidence, selfesteem and mental health. “If you’re bullied for being who you are or you’re left out for being who you are, if you’re not supported in the way that you need it will strike badly on your mental health, so acceptance is crucial,” adds Yvonne.
We try to dispel some of the myths that still exist
GET INVOLVED
To increase acceptance in society, the organisation is putting on a series of interactive events not just during World Autism Acceptance Week, but throughout the full month of April. One of these projects will take place at the Trafford Centre in Manchester, the third largest shopping centre in the UK. “There will be pictures of people and you can scan the QR codes alongside them then that person will come to life on your phone and tell you how they are affected by this, you can get a closer look at difficulties they may face if they go into supermarkets and shopping centres,” reveals Chloe. Autism Together are also running a Get Active for Autism challenge throughout the month, encouraging people to sign up and walk, run, cycle or swim 54 miles during April to raise just £54. “The reason we’ve chosen 54 is
because that will be our charity’s birthday this year in November,” explains Chloe. “It’s something everyone can take part in just as spring is coming and you want to get outside, but you’re also ensuring acceptance, you’re doing this to fundraise and help improve services for autistic people.”
TRAINING
Increasing acceptance with the general public is essential, but this also has to extend into businesses and schools with bespoke training. Autism Together has worked to train staff in major retailers, banks, criminal prosecution services, emergency services and more on autism acceptance. “We cover a brief overview of autism but there’s always a disclaimer to
ensure that people understand that everyone is unique just like autism is, so we try and dispel some of the myths that still exist,” offers Yvonne. “We look at how people experience sensory things differently and the significance of this on their lives, how we can help each other to communicate.” This understanding is also important in schools, with many resources being developed especially for education settings for use during Autism Acceptance Month. “A lot of needs can be masked and so people don’t always get the support they need to really flourish,” explains Michelle Walklett who also works in the training team at the organisation. “Our resources for schools in April will include a free, pre-recorded assembly to try and get more acceptance at every level. “It’s going to help teachers to support people and to support children in their class who are on the spectrum or if they are waiting for a diagnosis.” With a push for greater training and education not just for businesses and schools but the wider public, events like this can help people in the autistic community feel accepted.
FOR MORE INFORMATION
Find resources around Autism Acceptance Week from Autism Together (www.autismtogether.co.uk) and the National Autistic Society (www.autism.org.uk).
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Technology Supporting Sight Loss is Evolving.
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The OXSIGHT Onyx, 2022
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EPILEPSY AROUND THE WORLD
Every year on 26 March, the world turns purple to raise awareness of epilepsy, but this year Purple Day is expanding its reach
Cassidy has built a community that is there for each other 365 days a year, not just on Purple Day. This year, the awareness event will be bigger than ever before with the usual schedule of in-person events around the world switching to a hybrid model to encompass online. “The great thing about this is that both ways hold the ability to bring the epilepsy community together in ways we couldn’t have before and in turn means we’re able to spread epilepsy awareness and education much more globally,” enthuses Cassidy. “The pandemic made the world stop but those of us living with health conditions like epilepsy didn’t, we couldn’t: epilepsy doesn’t take a holiday or shut down. “Purple Day’s main goal has not changed, if anything it is making me push harder for epilepsy awareness.”
RECOGNITION
Based in Canada, Purple Day 2022 is of special significance for Cassidy – it marks a decade since the country passed the Purple Day Act, recognising the awareness day by law.
“It is so cool that 2022 marks 10 years since the Purple Day Act has passed,” expresses Cassidy. “I am grateful and proud of my country for passing this act and so much has happened since that time. However, there is still so much more that needs to happen.” Canada remains the only country around the world to have passed an act of this kind. “Some parts of our world still have such a horrible stigma attached to epilepsy, it is still hidden and taboo to talk about in so many places so it is harder for them to pass policies,”
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Cassidy Megan
There is still so much more that needs to happen
explains Cassidy. “Wouldn’t that be amazing, for people living with epilepsy to know that their government sees them, recognises them and supports them?” Along with greater government support and the need for public awareness, Cassidy would also like to see more education around Sudden Unexpected Death in Epilepsy, often referred to as SUDEP. “There is not enough conversation about SUDEP and the fact that most, if not all of us, live with the knowledge that we could die from a seizure,” reveals Cassidy. “Even if it is a thought in the back of our minds, it is there.” Through events like Purple Day the world can achieve greater awareness of epilepsy and the effect it has not only on physical health, but mental health and daily life. FOR MORE INFORMATION
Find out how to take part in Purple Day at www.purpleday.org
PIC: ©MITCH VALCOURT; ISH AQUINO
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hen Cassidy Megan started Purple Day in 2008 at just eight-years-old, it was a way to find a community and raise awareness of epilepsy. Now, 14 years after the first Purple Day took place, the day has grown to be a worldwide awareness event. “I didn’t know anyone else who had epilepsy, I felt so alone and so scared of being made fun of, or losing friends,” remembers Cassidy. “I wanted to see if there were other people out there with epilepsy, but I also wanted to educate the public on how to correctly help if they see someone having a seizure.”
In those early days, Guide Dogs were really the only service who connected everything and allowed us to find our feet as a family. Angela, mum to Tom
The day your child is diagnosed with a vision impairment is not an easy one. But it’s also the day Guide Dogs’ support starts. And it never stops. Call us today to find out how we can help you and your child, or visit our website to explore a wide range of relevant resources.
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The Guide Dogs for the Blind Association is a company limited by guarantee and a registered charity in England and Wales (209617) and Scotland (SC038979). A101 1/22
A101_Enable Magazine_190x137_5.indd 1
24/02/2022 10:47
A range of wheelchair accessible and adaptable apartments for sale at three new build schemes in the London Borough of Waltham Forest. Shared ownership and outright sale apartments available.
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Tim Rushby-Smith
Rolling up the red carpet After enquiring about access to a holiday property, columnist Tim Rushby-Smith shares the response and calls for more understanding from hosts
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Ah, Danny. Dear, dear Danny, I thought. Dear Danny, A few thoughts, as requested. Firstly, I was alarmed to learn that your glass doors aren’t strongly supported. As a wheelchair user, I am unlikely to lean or even fall on them, but older people, young children or even a tired guest using the bathroom at night could come to serious harm. I would strongly recommend you rectify this safety issue as soon as possible. Secondly, I assume that you have a firm ‘no shoes’ policy to protect your floors. While my wheelchair tyres are
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“
virtually slicks, most shoes will have some kind of tread pattern and are thus far more likely to pick up granite particles and damage the floor. Unless you demand such an undertaking from every guest, your expectation that I provide assurance that ‘zero damage will occur’ comes across as discriminatory. I would, however, like to commend you on the step free access to the front door. I would love that welcome to be extended beyond the threshold. Having said all above, I can honestly say that while I don’t feel ‘disadvantaged’ by your obvious desire that we come nowhere near your place, I do think that you should seriously think about better educating yourself about disability. I have travelled extensively for both work and leisure, yet your response is certainly a fresh approach.
Having the option to screen for disabled access is progress
“
hile looking for somewhere to stay for a couple of nights recently, I sent an enquiry to a property listed on… let’s call it ‘Hair G and T’. Below is an excerpt from a reply I received when asking about door widths in a property listed: “I am a little concerned with bathroom having no disabled support holds. Glass doors are not strongly supported. Also concerned about any damage wheelchair may cause. Carpark is all yellow granite and wheelchair tyres will probably be embedded with granite particles. When moving internally, probable damage to polished wooden flooring may occur. Can you assure us zero damage with regard to wheelchair? There is a ramp all the way to front door - no step. Having said all above, we don’t wish to disadvantage your family, and would love to have you stay with us. Please let us know your thoughts given above so we can assess your booking. Cheers, Danny”
To paraphrase: ‘We don’t want you here… but we would love to have you stay with us.’ Regards, Etc. Having the option to screen for disabled access is progress. If it isn’t accompanied by a desire to understand or accommodate disability by the host, it is merely virtue signalling. Follow Tim on social media on Twitter @Trushbys, and on Instagram @trushbys.art
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22/02/2022 10:04
Choosing
future your
care
Making the move to a care home will drastically change your daily routine, but it can be a positive step if you require continuous or complex care. By considering your needs and what’s available, you can find the right fit
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hoosing a care home for yourself or assisting a loved one in this decision is a major change, affecting all aspects of your day-to-day life. This is why it’s important to ensure you are making the right choice. It can be helpful to seek advice from people who understand what to consider and what questions to ask along the way. When beginning your search for the right care home it is key to first think about your needs and the type of care home you or your loved one requires. This type of supported housing usually falls into one of three categories: sheltered accommodation; residential care homes; or nursing care homes. The type of home that is right for you depends on the care that you need. If you or your loved one has complex needs or requires medical staff to be on site 24 hours a day, a nursing care home is most likely to be the right fit.
Research
Doing thorough research can ensure you make a good decision about your future care, but there are processes to help you better understand what care you need. Applying for a Needs Assessment from your local council will give you an overview of your requirements and whether a care home is the right place for you. There could be alternative options that allow you to stay at home for longer. This type of assessment is carried
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out by social services and will give an overview of your healthcare, equipment and housing needs. The service is currently only available in England and Wales and your local NHS service (www.nhs.uk) or Citizens Advice Bureau (www.citizensadvice.org.uk, 0800 144 8848) can help you with your application. Once you have a better understanding of your requirements, you can look at different care homes local to you. At this stage it can help to check whether care homes in your area have vacancies, narrow down the location you would prefer the home to be in and to seek any advice from support organisations.
Cost
Conversations around money can be difficult, but it is essential to understand what you can afford and what funding you are eligible for. The average cost of a nursing care home in the UK is £888 a week, but there is a host of financial support available to cover these costs. The amount of support you could get depends on where you live, your savings, assets and income. People who have savings and assets under £23,350 in England are more likely to be eligible for council funding. If your savings and assets are more than this it is still important to check if you are eligible for any support: your local authority might still contribute some funding to your care in certain circumstances.
When looking at specific care homes, check for any additional costs or contract terms to consider. This includes things like short notice periods for fee increases, the requirement to pay fees when residents are away for an extended period of time like a hospital stay, and additional charges for the use of things like phones within the care home.
Facilities
Once you have created a shortlist of care homes that meet your care, location and financial requirements, think about whether they cater to your current likes and hobbies. Visiting different care homes can help you
enable care
Ask current residents about their experiences
to see what they’re really like, how you feel about the environment and whether you can picture yourself living there. It can also help to ask questions during these visits: have a list prepared before you arrive to ensure you don’t forget anything. This could include what recreational services the care home provides, whether there are days out or access to the community to use things like the post office, and importantly, what the rules are for visitors if this is important to you. Take this chance to ask current residents about their experiences and what the care home is like on a day-today basis, considering things like meals and the general atmosphere.
Useful links When you start your search for a care home, speaking to specialist organisations can make the process easier to navigate. Whether you are looking for guidance on funding, want to better understand your options, or you are a family member or carer helping in this process, there is support available. Age UK For: A guide on useful questions to ask during a care home visit. www.ageuk.org.uk 0800 678 1602
Money Helper For: Guidance on the financial support available and what you can afford. www.moneyhelper.org.uk 0800 138 7777 Care Home For: Care home reviews and advice for loved ones and carers helping to find a care home. www.carehome.co.uk 01488 684321 UK Care Guide For: Easy steps to finding the right care home for you. www.ukcareguide.co.uk
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THE WOW FACTOR W
ith a background in occupational therapy and a 19-year-long career working with people with physical, mental and sensory conditions for NHS Scotland, Pasna Sallis wanted to fill gaps in provision and help tackle social isolation. Inspired by her patients, Pasna formed Weekday Wow Factor in 2017. The organisation runs accessible, inclusive and affordable activities in Glasgow.
to suit people living with dementia and their carers. “I really believe that if you get it right for people with dementia, you get it right for everybody because dementia affects physical health and mental health,” explains Pasna. “We are attempting to awaken the inner child and to enhance physical, mental and social health, to reduce loneliness, isolation and tackle ageism all while using an occupational therapy approach.”
ENHANCE
GROWTH
“During my time in the NHS I discovered that there were real gaps in exciting activities,” recalls Pasna. “There was a gentleman I was working with who was in his early 70s and his family were concerned that he was really socially isolated. I asked him what he used to love doing and he said bowling.” After taking him bowling, Pasna realised how under-utilised the activity was during weekdays and started to form the idea for the organisation. From her professional experiences, Pasna knew that older people wanted more than a trip to the bingo hall and that many mainstream leisure activities could also be good for your health, she just had to make them more accessible. Her main focus was finding options
We are attempting to awaken the inner child and to enhance physical, mental and social health
After being inspired by the way a previous dementia patient connected with music, Pasna wanted to find a space that could provide a dancefloor, break out spaces and was accessible. “What we needed was a nightclub scene where you can have more freedom, so I approached my favourite nightclub from 20 years ago when I was a student in the west end of Glasgow,” reveals Pasna. Daytime Discos were born and soon became popular with dementia patients and their carers across the city. The events then extended to include people with a learning disability and Pasna soon realised that they needed more than a disco. “I know not everybody likes dancing so we started looking at other activities as well, we choose things that might take people back to their childhood, things they wouldn’t normally do anymore,” enthuses Pasna. In the last five years the organisation’s schedule has increased, including everything from speed boating and surfing to day trips and walking groups, and even went virtual when the pandemic arrived. Now, as activities return to normal, in-person discos are back on and activities are resuming with the help of the group’s mini bus.
Providing meaningful activities and a chance of friendship, one local project is tackling isolation and helping people reconnect with their inner child
FOR MORE INFORMATION
See what activities Weekday Wow Factor has to offer at www.weekdaywowfactor.com
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Understanding sleep and pain S
Disrupted sleep can have a negative effect on everyday life, but for people living with chronic pain it can play a bigger role in their condition
leep is an essential function, allowing our minds and bodies to recharge, develop and heal from illness. Despite its importance, as many as 16 million adults in the UK experience sleepless nights with nearly a quarter having no more than five hours of sleep each night. Dr Neil Stanley is a sleep expert with nearly four decades experience working in sleep research with
everyone from the RAF Institute of Aviation Medicine to the British Sleep Society and now Sleepstation, a sleep improvement programme backed by science. Throughout his career, Dr Neil has had an interest in the relationship between sleep and chronic pain. It is estimated that as many as 89 per cent of patients with chronic pain experience sleep disturbances. “If I tell you that pain causes poor sleep then that’s pretty obvious, but
what is perhaps not as obvious is that poor sleep directly affects your perception and your sensitivity to pain,” explains Dr Neil. “The vast majority of people living with chronic pain have sleep problems, usually different types of insomnia and the inability to fall asleep, they’re often waking up in pain in the middle of the night.” Finding out how to get better sleep can help your sensitivity to pain and emotional resilience when dealing with pain.
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“One of the things that poor sleep does is it can slow down healing, but it can also affect you from a sort of emotional point of view: if you have poor sleep you’re less able to cope,” reveals Dr Neil. “Poor sleep can affect any of us but it really adds to the situation for people with chronic pain. “A better night’s sleep won’t always improve pain, but it can help you deal with it better.” A lack of sleep or bad quality sleep has been linked to higher levels of stress, depression and anxiety - studies have shown more activity in the brain’s centre of fear and anxiety for people who are sleep deprived – but even short-term bad sleep can have an effect on your health. “Even one poor night’s sleep reduces your immune system leaving you four times more likely to catch a common cold the next day,” shares Dr Neil. “In the longer-term poor sleep has been related to things like obesity, diabetes and stroke, there’s a whole host of concerns.” The crux of this problem is often a lack of understanding about the role sleep plays in your health from healthcare professionals who don’t
“You need to be
relaxed in both body and mind
“
COPE
specialise in the area. With a strong connection between sleep and the body’s ability to cope with pain, more awareness and training is needed in this area for chronic pain patients.
HOLISTIC
“It’s not really good enough to look at only addressing the pain because you can reduce a pain score but if your sleep is still bad you aren’t going to be getting better,” offers Dr Neil. “You really need to target both the pain and the sleep disorder in order to allow you to cope.” In order to do this, healthcare professionals need to approach sleep and pain in a holistic way, paying attention to how they are linked and treating them simultaneously. “If you tell your doctor that you’re in pain and you can’t sleep then they will likely treat the pain, it’s what they
have been trained to do. We often have this compartmentalisation in western medicine,” explains Dr Neil. “I’m very much a fan of empowering the patient: if people with chronic pain are in this situation they need to go to their doctor and say I have a sleep problem and I want to use this session to talk about my sleep rather than just my pain. “Talk about how it affects your day, how it affects your performance, your mood, your ability to do activities in daily life: everything from driving your car to chopping a cucumber. Don’t just accept that because you’re disabled, because you live with chronic pain that you have to live with bad sleep.”
TREATMENT
Based on his experiences, Dr Neil would recommend cognitive behavioural therapy for insomnia (CBTI) as a course of treatment. “The first line of treatment for insomnia in adults of all ages should be CBTI, it’s about things like sleep hygiene but it’s also about addressing the thoughts, concerns and behaviours that come with poor sleep,” reveals Dr Neil. “If you go to bed thinking I’m in pain and therefore I will have a poor night’s sleep then you’re going to have a poor night’s sleep. “This type of anxiety is going to keep you awake so you need to be relaxed in both body and mind.” While your GP or a member of your healthcare team can refer you for CBTI, you can also implement some of its practises at home. “You could get up out of your bed and do something relaxing until you feel sleepy again or use a blocking method like subtracting seven from 1,000 repeatedly or naming an animal for each letter of the alphabet,” recommends Dr Neil. “You don’t necessarily have to do a full course of CBTI to feel the benefits of it.” By self-advocating and looking into treatment methods like CBTI, people living with chronic pain can take steps towards better sleep, but more training and awareness is needed in healthcare to make a real difference. FOR MORE INFORMATION
If you are struggling with your sleep, speak to your GP or healthcare team. Find out more about Dr Neil Stanely and Sleepstation at www.thesleepconsultancy.com and www.sleepstation.org.uk
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all side
THEN BARBARA MET ALAN This year a disabled cast and crew will take audiences behind the scenes of the disability rights movement that led to the passing of the Disability Discrimination Act in 1995
N
early three decades since the Disability Discrimination Act was written into law, a new drama will retell the love story that launched the movement for disabled civil rights in the UK. Then Barbara Met Alan will depict the true story of Barbara Lisicki and Alan Holdsworth, two disabled cabaret performers who met in 1989 and went on to become the driving force behind the Direct Action Network (DAN), which pushed the campaign for disabled civil rights into the spotlight. Made by the BBC and Dragonfly Film and TV Ltd, and written by acclaimed Bafta winner Jack Thorne and actor-turned-writer Genevieve
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Barr, the BBC series was created by a cast and crew with lived experience of disability with Ruth Madeley and newcomer Arthur Hughes taking the lead as Barbara and Alan. “Barbara and Alan inherited the flame,” states Jack. “What made them different than those that went before - and those that came after - is rather than just hold, they blew petrol on it and used it as a flamethrower. I don’t think anyone comes close to their punk spirit.”
HONOUR
When Jack first approached Ruth to take the lead, she knew it was an opportunity she couldn’t pass up, she recalls: “When he told me the whole
idea and who I would be playing it just felt so exciting. “It had all of the makings of a dream job and what an honour as an actor to play such a powerful character in such an important story.” For Genevieve it was also an easy yes to come on board to co-write her first feature-length drama. “When you’re working with real people’s lives and the things they’ve sweat and bled for, there’s a tremendous feeling of care to find the truth and soul of what they were trying to achieve,” reveals Genevieve. Ensuring Barbara and Alan’s story was told with care and respect was a priority for everyone involved in the series, made easier by the activists
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being involved in its creation. “I just wanted to make sure that I could do Barbara justice both as a character and as a person,” expresses Ruth. “When I met her, she was incredibly generous and said that I could ask anything I wanted, it really gave us the tools to be able to tell the story right.”
PICS: © BBC PICTURES
CHANGE
Using personal testimony and archive footage for reference, Barbara and Alan’s story came to life again, exploring their love, politics, their lived experience of disability and how they are intertwined. “Tonally, it felt right to be punk in spirit and that meant a lot of play with structure and shape which was as fun as watching all the footage of protests and buses,” reveals Genevieve. “What we wanted to do was focus on Barbara and Alan, their love story and the snowballing growth of their movement. But broadly speaking, there’s a real sense that a baton has been passed from disabled activist to activist and continues to do so today.” This feeling led to Jack and Genevieve setting up their own pressure group while they wrote the show: Underlying Health Condition. The group focusses on improving accessibility within the TV industry. “Then Barbara Met Alan was a production that tried to recruit as many disabled cast and crew as possible,” enthuses Genevieve. “It was
extraordinary to be part of and it felt like a moment where we went ‘we can do more and we should do more’.” It is hoped that the show will highlight the progress that still needs to happen to ensure equal opportunities for people living with a disability. “This whole story is such a huge part of disability history, of British history and of legislation but when people see this it might be the first time they’re even hearing about it which is heart breaking,” admits Ruth. “People should know that it wasn’t just a bunch of politicians who sat down and said we need to make legislation for disabled people - it came from the streets, it came from disabled people demanding it and a lot of what they were fighting for we’re still fighting for now. “In conversations about diversity, disability is still 20 years behind other forms of diversity and we are in such privileged position to be able to share important stories like this to mainstream audiences and raise awareness and create change while we do.”
REACTION
As the show gets closer to airing, Ruth is still in awe of the opportunity to be part of it. “I got to work with these incredible actors who could lead anything,” exclaims Ruth. “From a personal perspective, working on this show with complete powerhouses like Mat Fraser
This whole story is such a huge part of disability history, of British history and of legislation
and Liz Carr will stay with me forever. I always feel very nervous for something to come out but that is completely secondary to real excitement. “I’m so proud and this is genuinely the highlight of my career. I just feel very, very lucky to have been asked to lead such an important story and I cannot wait for the world to see it.” Ruth’s feelings are echoed by Jack and Genevieve who, while excited, are eager to see the public’s reaction. “I’m really scared. Excited but scared. It’s just been a very special thing to be a part of. I hope people enjoy it,” offers Genevieve. “It’s a highlight of my career too. But I agree with Gen, I’m scared what people will say and hope they get it was a show made with love,” adds Jack. “Television has enormous power just by being in people’s living rooms, properly harnessed it could be revolutionary for changing how disabled people are treated.” FOR MORE INFORMATION
Then Barbara Met Alan is coming soon to BBC Two and BBC iPlayer.
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THERA-Trainer tigo
Exercise Bikes and Equipment for Disabled People
IN MADE NY GERMA
tigo Exercising is possible from a chair or a wheel chair Exercising of legs and/or arms is possible Improves metabolism and vitality Active and passive movement (with or without motor support)
Encourages cardiovascular system Improves levels of stamina and flexibility Strengthens the muscles Increases mobility
Rental plan available: Regular exercise at a low price? With THERA-Trainer UK you can choose whether to rent or buy. Choose the right bike that suits both your needs and your budget - Contact us for a free and no-obligation demonstration at home or request a brochure. THERA-Trainer UK Ltd. T. 01908 564100 | info.uk@thera-trainer.com | www.thera-trainer.co.uk Please note our name change – Medicotech rebranded to THERA-Trainer UK on 1st January.
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Get into
GARDENING
Get ready to embrace a new hobby this spring
G
ardening is an easy way to introduce a new activity into your routine whether you have a large green space to work with or only have room to add a window box to your home. The hobby is also a good form of exercise, thought to relieve stress, improve heart health and can act as a form of sensory play.
CONNECTION
Along with being a form of exercise, a chance to improve your surroundings and to get some fresh air, gardening can be a social hobby. Community groups, gardening clubs and allotments are all tools to meet other people with similar interests. Clubs exist for complete beginners and for people with more experience. Your local council (www.gov.uk) should have a list of allotments in the area and the Royal Horticultural Society (www.rhs.org.uk) has a helpful search tool. Groups can also be online: the Gardeners Club (www.gardenersclub.co.uk) has more than 400,000 members sharing stories and advice.
COST
Starting a new hobby can come with costs, especially if this is your first time gardening or your current space isn’t accessible enough for you to start without some adaptations. The Gardening for the Disabled Trust (www.gardeningfordisabledtrust. org.uk) can provide grants to enable people to garden regardless of age, health condition or disability. This money can be used to fund adaptations to your outdoor space, cover the cost of tools and equipment, and the charity also provides advice and information on different aids and techniques to get you started. Applications are considered monthly but require a letter from your doctor or other healthcare professional confirming your disability or health condition. Alongside funding, different charities and organisations can provide information to help you get started in the garden. Carry On Gardening (www.carryongardening. org.uk), Thrive (www.thrive.org.uk) and the Royal Horticultural Society all offer advice.
PRODUCTS RATCHET PRUNER
Bulldog, £13.98 www.bulldogtools.co.uk, 01279 401 570
These heavy-duty, metal pruners have the added support of a finger loop making them easy to hold and protecting your fingers from scratches. Helpful for people with a weak grip or limited hand movement, they allow you to use both hands when cutting if you need to apply extra force.
OUTSUNNY RAISED WOODEN PLANTER
Robert Dyas, £61.99 www.robertdyas.co.uk, 0333 103 6677
Making planting easier for wheelchair users, people who struggle to bend or reach, or those with back and knee pain, this raised planter gives you full control. Built to withstand the weight of soil and with drainage holes to prevent water build up, this bed also contains an inner cloth bag lining so you can easily empty and clean the planter.
ROLLER-STOOL
Easylife, £29.99 www.easylife.co.uk, 0800 055 7766
Complete lowlevel tasks with ease and avoid kneeling or crouching with a roller stool. Built with a storage tray under the seat, this stool is a great tool for gardeners and can be used both indoors and outdoors, supporting up to 130kg.
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In the kitchen with
HEALTHY LIVING JAMES
Food blogger James Wythe discusses his journey with ME, how cooking helped his recovery and his new cookbook
Could you tell me a bit about your journey with ME? I had finished university in the summer of 2010 and around three months later I suddenly fell ill: I was 21 and became bed bound for two years. Six months after falling ill I received my diagnosis. Back then things like CFS were still not believed in a way so I was mostly left to my own devices. I was staying with my parents with my mum as my carer. She got a nutritionist to come and visit me who recommended I start taking a few supplements. Over time I slowly started to see an improvement in my energy levels. My recovery has continued to progress steadily, it’s been a long but powerful journey. When did cooking become important to your recovery? I moved in with Luise, who is now my wife, and she was working to try to
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keep us going so I was at home on my own. I would have a chair in the kitchen and would spend 10 minutes a few times a day teaching myself recipes. I would batch cook things so that I had meals ready for my worse days and I gradually kept improving. I started to build a passion for it and people would ask for my recipes so I decided to create a blog and set up Instagram. It just took off and I’ve turned up every day since. Cooking became my whole focus: it gave me a real sense of achievement. What was it like creating your debut cookbook? I’ve always dreamt about walking past a book shop and seeing my own cookbook in the window. I’m always quite a spontaneous person so the planning side was quite tough but I really got stuck in to the practical bits. It’s been so nice to see it all come together over the last year.
Cooking became my whole focus: it gave me a real sense of achievement
Why was it important for each recipe to include an FAQ section? Over the last two years I’ve been doing this FAQ section at the bottom of all my recipes, I just felt like it was like the best way to guide someone. I thought why not do that in a book? It just helps it be accessible for as many people as possible. That’s always what I’ve wanted from my recipes: there’s no judgement and I don’t want any barriers. Even though the recipes are gluten and dairy free I’ve made it so flexible that you can use normal flour or dairy milk if you want to. I’ve just tried to make it open to everyone no matter what.
Healthy Living James: Over 80 delicious gluten-free and dairyfree recipes ready in minutes by James Wythe (£20.00, Headline) is out now.
PICS: © LAURA BAILEY; CLARE WINFIELD
W
hen James Wythe started his blog and Instagram page Healthy Living James (www. healthylivingjames.co.uk) in 2016, he envisioned sharing his recipes with friends and family in an easy way. James discovered a love of cooking after receiving a diagnosis of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). Now, with more than 190,000 followers on Instagram, James has released his debut cookbook.
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RECIPE
Chickpea and avocado smash burgers Makes 4 PREP: 5 mins COOK: 20 mins COOL: 5 mins INGREDIENTS 2 × 400g tins chickpeas 1 tbsp smoked paprika 1 tbsp ground coriander ½ tsp garlic granules or powder 2 tbsp tomato purée juice of 2 limes 1 tbsp olive oil 1 avocado EXTRAS Your choice of buns Mayo or vegan mayo Lettuce
STEPS
1. Preheat the oven to 220°C/200°C fan/gas 7. 2. Drain and rinse the chickpeas, add to a large bowl and mash thoroughly with a potato masher or fork. 3. Add the spices, garlic granules, tomato purée, juice of 1 of the limes, olive oil and a generous pinch of salt and pepper and mix. 4. Shape into 4 patties, place on a baking tray lined with baking paper and bake for 20 minutes. 5. Meanwhile, peel the avocado and add to a bowl along with the juice of the other lime and
a generous pinch of salt and pepper. Mash together with a fork. 6. Remove the burgers from the oven and allow to cool for 5 minutes (this helps them to firm up). 7. Serve in buns (gluten-free if you want) with a spreading of vegan mayo, some lettuce and the avocado smash.
FAQ Any swap for the chickpeas? James recommends trying a white bean such as butter beans. Can I make it oil free? Yes, just add water instead of the olive oil. Can I freeze them? Sure, freeze once cooked and cooled.
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Afex Quarter Page_09.02.2021.indd 4
11/02/2021 10:13
Find out everything you need to know about the Motability Scheme, in fully-accessible venues. Join us at an event near you
Open 9am - 4pm
→ The Big Event, NEC, Birmingham - Friday 20 and Saturday 21 May 2022 → One Big Day, Westpoint, Exeter - Saturday 23 July 2022 → One Big Day, Yorkshire Event Centre, Harrogate - Saturday 13 August 2022 → One Big Day, Royal Highland Centre, Edinburgh - Saturday 17 September 2022
Find out more at motabilityonebigday.co.uk or call 0800 953 7000 Please quote MO1036I To test drive the cars you must bring your full UK driving licence and sign our test drive declaration on the day. Full Terms and Conditions can be found at motabilityonebigday.co.uk. One Big Day is organised and hosted by Motability Operations Limited, which is authorised and regulated by the Financial Conduct Authority.
thediary 10 MARCH AUTISM AND MENTAL HEALTH CONFERENCE 2022
Online www.autism.org.uk
Focussing on the crucial issues impacting the mental health of autistic people, this online conference will explore strategies for effective support and will help people working in the sector to increase their understanding of a key topic that affects many autistic adults and children. Areas that will be covered during the one-day event include autistic fatigue and burnout; autism, trauma and PTSD; and self-harm and suicidal behaviour.
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What’s on during March, April and May
MARCH 17 MARCH KIDZ TO ADULTZ MIDDLE
Ericsson Exhibition Hall, Coventry www.kidzexhibitions.co.uk Dedicated to young adults with disabilities and additional needs, this exhibition is perfect for parents, carers and professionals working to support these young people. More than 120 exhibitors will be at the event, offering advice and information on many areas including: funding; mobility; communication; legal matters; sensory and more. Alongside this, professionals can boost their CPD portfolio by attending the free, topical seminars at the event.
21 MARCH
APRIL
ROCK YOUR SOCKS FOR MENCAP
3 APRIL
Nationwide www.mencap.org.uk To mark the annual World Down Syndrome Day event on 21 March, Mencap are inviting you to rock your socks at school, work or with your family and friends. The charity is asking participants to take part in a challenge of their choice: you could run 2.1 miles wearing your craziest socks; do 21 reps of three different exercises; or design your own pair of socks and share them online.
MAY 20-21 MAY THE BIG EVENT
NEC Birmingham www.motabilityonebigday.co.uk The Motability Scheme’s face-to-face events are back for 2022 with the return of The Big Event and the regional One Big Days. These events offer the perfect chance for visitors to find out everything they need to know about the Scheme and see the latest range of products available, as well as having their questions answered by Scheme experts.
LONDON LANDMARKS HALF MARATHON
London www.autism.org.uk
Grab your running shoes and get ready to join Team Autism as the National Autistic Society set out to raise vital funds and awareness. Covering 13.1 miles, the distance of a half marathon, this running event will take you around the closed streets of London starting on Pall Mall and finishing by Downing Street. It is expected that 10,000 runners will take part to explore the capital.
20 APRIL REMOVING NEURODIVERSITY BARRIERS
Online www.abilitynet.org.uk
During this online training event, removing neurodiversity barriers – lived experience digital disability awareness training, people with lived experience will explain how technology can support those with cognitive differences. Perfect for HR directors and managers, the course will look at types of cognitive differences and the associated barriers, assistive technology, and how your working environment could exclude neurodivergent people.
If you have any events coming up in May or June 2022 email us at diary@enablemagazine.co.uk with the details for inclusion in next issue’s diary page. enablemagazine.co.uk
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With one in three adults affected by the current housing crisis, organisations are campaigning for accessible housing regulations to become the standard
Putting
housing
on the agenda
H
eadlines warning about the impact of the current housing crisis are nothing new and neither are the consequences it is has for the one in three adults impacted. The disability community is often disproportionately affected by a lack of suitable housing but is spoken about less when it is covered by the media. Currently, it is estimated that just nine per cent of homes in England have key accessibility features, and more than 400,000 wheelchair users
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are living in homes which are neither adapted nor accessible. “There’s this slice of people who are making do in homes that aren’t adapted or haven’t been designed specifically with their needs in mind,” highlights Christina McGill, interim director of strategy and external affairs at Habinteg Housing. The housing association is part of a group of organisations working to influence housing policy and regulations to better service disabled people and an ageing population.
A home that meets your needs is the foundation for every other aspect of life
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REGULATION
COALITION
The HoME Coalition is made up of 10 organisations with a common goal: to put accessible housing on the agenda. “We have tried to build relationships with people in parliament to put accessible housing on the agenda and keep it there, we do pieces of research and commission research to help to make the case for accessible homes,” reveals Christina. “By creating this new coalition where we could bring in other like-minded organisations, we have a stronger voice potentially with the government and local governments, but also with some of the other key industry bodies. “We’re looking at that space where disability organisations have a joint interest with organisations concerned with ageing, and then also organisations concerned with housing.”
The key focus of the coalition, which includes Habinteg alongside organisations like the Centre for Ageing Better, Disability Rights UK and the National Housing Federation, is around persuading government to raise the regulatory baseline for all new homes. “At the moment building regulations have got three standards in relation to the accessibility of new homes,” explains Christina. “We feel that the minimum standard doesn’t go far enough in terms of accessibility and so we want them to raise the bar. We would like to see the minimum standard be an accessible and adaptable one which is currently the middle of the three.” From September 2020 to December 2020, the UK Government ran a consultation asking for views on options to raise accessibility standards for new homes. The results and outcomes of this consultation are still to be published. “That consultation was about asking the public and the relevant sectors their views on the best way to create more accessible homes and examining the idea of potentially changing the building regulations,” recalls Christina. “There was a lot of support for the idea of raising the baseline locally, we even saw support from house builders themselves.” When the results are published, any action taken will only affect housing regulations in England and it is uncertain what next steps will be taken. Ideally, Habinteg would like to see the Lifetime Homes Standard become the norm across the UK. This standard is a series of sixteen design criteria intended to make homes more easily adaptable for lifetime use at minimal cost. This includes considerations for things like: on-site parking; entrances; internal doorways and hallways; WC and bathroom walls; glazing and window handle heights. This would see homes become adaptable for wheelchair users but also for people with a range of different disabilities. Without this standard some adaptations can seem simple but won’t work in practice: for example, you could add a grab rail to a bathroom wall, but the wall itself would have to be reinforced to hold an adult’s bodyweight in the event of a fall.
COMMUNITY
A lack of accessible housing isn’t just affecting people in their homes, it’s having a negative influence on wider society. Accessibility has to stretch further than the threshold to be impactful. “Having a home that meets your needs is the foundation for every other aspect of life,” stresses Christina. “If you are offered a job but you’re unable to take that job because you can’t find anywhere suitable to live in that area then that has huge ramifications not just for the individual, but also for society because we’re now missing out on that person’s skills. “That’s one end of it but it comes down to even simpler things: it’s about people’s independence, how they can access services and resources. If people have a suitable home where they can be more independent it then creates less of a strain on social care services.” As well as being important on a practical level, inaccessible communities contribute to restricting individuals’ social interactions and general enjoyment. “People want to go and have dinner, they want to have visitors and be able to visit other people’s homes,” offers Christina. “We think that accessible homes and communities play into all of these individual social and economic benefits that currently people are missing out on. “I think accessible communities are really critical because you can have a fantastic, accessible home but if you are a wheelchair user and you’re at the top of a very steep hill where there’s no bus stop at the top, that’s going to be a very limiting factor.” The importance of accessible and inclusive communities has been further brought to light as outdoor seating has increased during the coronavirus pandemic. “This has been a great example of taking an innovative step without considering the needs of disabled people, it’s really important that we plan accessibility into these things from the start,” concludes Christina.
FOR MORE INFORMATION
Learn more about the Lifetime Homes Standard, the HoME Coalition and how to get involved in campaigning at www.habinteg.org.uk
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Denis Duncan House
A fully accessible holiday home in Dirleton, East Lothian provided by national respite charity, Leuchie House. Three bedrooms including one accessible bedroom with twin profiling beds Overhead hoist from bedroom to en-suite bathroom Height adjustable wash basin and Clos-o-Mat toilet, hi-lo bath and full size wheel-in shower Height adjustable kitchen including hob and sink
Dirleton is situated on the Firth of Forth, between the Scottish capital of Edinburgh and the pretty coastal town of North Berwick. For booking & availability
www.denisduncanhouse.co.uk Leuchie is a charity registered in Scotland no SC042249
Disability Homelessness Young people Mental health
At Sanctuary Supported Living we provide supported housing, and CQC registered services, including residential care and nursing homes. Our personalised care and support helps people to build their skills and confidents to achive their goals and aspirations, for their pathway to independence.
0330 1233 247 www.sanctuary-supported-living.co.uk
“The support I’ve received from Sanctuary Supported Living especially my key workers, has helped me achieve more than I ever thought possible.”
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ach issue of Enable Magazine is bursting with relevant and exclusive content from real life stories and celebrity interviews to advice and spotlight features on the topics that really matter. Subscribe to Enable by 30 August 2022 to be in with a chance of winning a four-night, midweek break in a luxurious wheelchair accessible log cabin with Hoe Grange Holidays. Based on a farm in the stunning Peak District countryside, up to four guests can enjoy this prize with extra equipment included such as a mobile hoist, profile bed and shower chair. You could win this relaxing, peaceful break including one day’s free hire of a Boma 7 off-road wheelchair to explore the farm fields and local trails. For full terms and conditions see www.enablemagazine.co.uk/ hoegrange22
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March/April 2022
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Product Roundup Discover products to aid you in your day-to-day life
KIDS
SPORT
LARGE FIT CHAIR
BLIND SPORTS ACTIVITY KIT
Hope Education, £89.95 ex VAT
RNIB, £225 ex VAT shop.rnib.org.uk, 0303 123 9999
Containing essential items to get active and try out a new sport, this activity kit includes audible balls, polyester masks, running tethers, sport glasses, an inspiration folder, ball pump and a container to store the items. With the inclusion of masks, the kit can be used by people with sight loss alongside sighted people to play on equal footing.
HOME
www.hope-education.co.uk, 0345 120 2055 Designed for children with mobility and posture issues, the fit chair helps to improve posture and aids children in developing a sense of balance. Children and young people with mobility issues can work on their physical strength whilst seated. The high back rest also provides comfort whilst assisting blood circulation.
TOILET FLUSH BUTTON
Invisible Creations, £43.32 ex VAT www.completecareshop.co.uk, 03330 160 000
Specially designed to help make flushing the toilet easier, this raised flush button is discreet, compact and lightweight. Perfect for people with limited hand mobility or muscle weakness, it doesn’t require any excess strength or dexterity to use and is easy to install on your existing toilet.
HOME
KIDS
MERA CARE SHOWER TOILET
TOY MANIA FIDGET FUN BOX SET
Geberit, POA www.geberit-aquaclean.co.uk/care, 01926 516800
Smyths Toys, £9.99 www.smythstoys.com
This Toy Mania box is packed with eight fidget toys, perfect for keeping kids’ hands busy. Tactile sensory toys like these can help with focus, attention, calming and active listening as well as being fun. Including a push popper, marble poppets, puzzle snake, infinity cube, rainbow ball and more, this set is suitable for four years and over.
ACCESSORIES
WHEELCHAIR WHEEL COVERS
Izzy Wheels, £124.11 www.izzywheels.com
Update your wheelchair with this Disney x Izzy Wheels collaboration featuring Winnie The Pooh characters, 10 per cent of each Disney-themed sale will be donated to charity Whizz-Kidz. Coming in a set of two, Izzy Wheels products are lightweight, waterproof and scratchproof, as well as being easy to install.
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Specifically designed to put the user in control, the Mera Care Shower Toilet is smart, stylish and easy to use. Its advanced technology gives users increased bathroom independence. With adaptations available, the toilet will fit different individuals’ needs, leaving users feeling cleaner and fresher with a comfortable, convenient and hygienic bathroom experience.
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At Geberit it’s always been our goal to create a product that would make a difference to the way our customers live their daily life. The Geberit AquaClean Mera Care shower toilet offers unrivalled product features that play a vital role to ensure that people of all ages can regain their independence and dignity in the bathroom. That’s why the Geberit AquaClean Mera Care is made for you. geberit-aquaclean.co.uk/care
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WHEELCHAIR ACCESS PRODUCTS WHEELCHAIR SHOWER THRESHOLDS
A NEW INNOVATION IN DISABILITY SCOOTER DESIGN The real beauty of the Electrokart Ranger is the ease with which you can take it apart.
6.4MM FLAT THRESHOLDS
AT ZERO SEAL SYSTEMS WE OFFER A WIDE RANGE OF THRESHOLD PRODUCTS, DEVELOPED FOR WHEELCHAIR ACCESS. THESE INCLUDE A RANGE OF 6.4MM HIGH FLAT THRESHOLDS IN VARYING WIDTHS, A UNIQUE SHOWER THRESHOLD WHICH
MODULAR RAMPS
IS AVAILABLE IN TWO HEIGHTS AND A RANGE OF MODULAR RAMPS THAT CAN BE USED IN A VARIETY OF APPLICATIONS. ALL PRODUCTS ARE HELD IN STOCK AND AVAILABLE IMMEDIATELY. PLEASE CALL US FOR FURTHER INFORMATION OR VISIT OUR WEBSITE.
Zero Seal Systems Ltd Units 43 - 45 Ladford Covert, Seighford, Stafford, ST18 9QG, United Kingdom Tel : +44 (0)1785 282910 E-mail : sales@zeroplus.co.uk
WWW.ZEROPLUS.CO.UK
No other buggy folds away to be as neat and compact as the Ranger. It dismantles simply, in no time at all, to fit neatly into the boot of most saloons and all hatchbacks. This off road mobility scooter is rugged built quality, constructed from high quality steel tubing, phosphated and epoxy coated to give longer life and all weather protection. Adjustable steering column adjusts for comfort and easy, step-on access, with comfortable steel backed, foam filled and weatherproof bucket style seat as standard. With 2 x braked motors for safety.
RANGER with Lithium battery £3,225 HEAVY DUTY RANGER with a lithium battery £3,655 STABILITY GUARANTEED – EVEN ON THE TOUGHEST TERRAIN, YOU STAY STEADY AS A ROCK.
T: 01233 666 000 E: sales@electrokart.com www.electrokart.com
MADE IN ENGLAND
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WIN C
reate luxury hot chocolates from the comfort of your own home with our March/ April issue prize: a Hotel Chocolat Velvetiser. The British chocolate retailer has reimagined hot chocolate, allowing you to make smooth, whipped hot chocolate in your own kitchen. Whether you want a morning boost, a treat with your three o’clock snack or to curl up on the couch with an indulgent cup in the evening, the Velvetiser delivers in just two and a half minutes. To create your perfect hot chocolate simply choose your flavour and add flakes of real chocolate to the machine along with milk or water. Press the button on the front of the machine and watch as the Velvetiser combines the ingredients. Taking up the same amount of space as a kettle on your counter, the Velvetiser is compact, easy to store and attractive to look at, coming in three stylish and on-trend finishes: classic copper, charcoal and white. The Velvetiser’s long, horizontal handle makes the machine easy to carry and pour for people who have dexterity or strength problems. It also adjusts easily for a left or righthand pour. With convenience at its heart, the machine is easy to clean – simply pop out the whisk and rinse the non-stick coating with water after each use.
A HOTEL CHOCOLAT VELVETISER
We’re giving readers the chance to win a Hotel Chocolat Velvetiser
HOW TO ENTER To be in with the chance of winning this prize, simply send us your name, contact details and where you picked up your copy of Enable to competitions@dcpublishing.co.uk quoting Velvetiser. Or visit the Enable website and enter online at:
www.enablemagazine.co.uk/velvetiser
All entries must be received by Monday 25 April 2022. Good luck!
TERMS AND CONDITIONS: All entries must be received by Monday 25 April 2022. The prize is one Hotel Chocolat Velvetiser which will be sent to the winner. The contents of the prize may differ from the images and descriptions included here. The prize in non-transferable, non-refundable, there is no cash alternative and cannot be sold to another party. One entry per household. The publisher’s decision is final.
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Ever wanted to do a safari? Didn’t think it’d be possible for a disabled traveller?
Accessible Holiday Cottages
Best of Botswana Safari
W: brickhousecottages.co.uk E: info@brickhousecottages.co.uk
with onsite accessible facilities; hydrotherapy pool, sensory room, & bistro
15-23 June 2022
T: 01253 702 122
From £4,500*
Accessibility is at the heart of everything we do here at Brickhouse Farm Cottages. Based in Lancashire within 6 acres of countryside, our cottages are all custom built with internal hoist systems in place & in 9 out of 12 cottages hoist system over luxury hot tubs. All cottages overlook our private fishing lake and 5 are even dog friendly. Onsite we have a Hydrotherapy pool & interactive sensory room both to hire privately & with H-track hoist system. Our Lakeside Bistro serves home cooked meals all day everyday & houses our fully equipped Changing Place Toilet
£40 off code: Enable40 Jan to Mar ‘23
Inclusive Tourism in South Africa and Botswana Contact: www.endeavour-uk.co.uk becky@endeavour-uk.co.uk 01202 630075 *Exclusions apply
Accessible for all / Terms and conditions apply
Meadowsweet Bungalow Stay somewhere special
Wheelchair accessible Self-catering log cabins in the Peak District countryside
Mobile hoist Specialist equipment Roll in wetroom shower Off-road wheelchair hire www.hoegrangeholidays.co.uk tel: 01629 540262
Beautifully presented modern self-catering bungalow in Scotland with spectacular views. Fully accessible for wheelchair users, with specialist equipment. Sleeps 5. Meadowsweet is near Kilmartin Glen, in the Moine Mhor National Nature Reserve. Heating and linen is provided. Fibre broadband, BT TV and WiFi. • Level drive and ramp • Theraposture Profiling bed • Oxford Mini 140 hoist
• Freeway Tilting Shower Chair • Fully adapted wet room • Wide doors, spacious rooms
Ruth Bebb ruthbebb@btinternet.com
www.meadowsweetbungalow.co.uk
REVIEW
NISSAN QASHQAI Columnist Alisdair Suttie hits the road in the Nissan Qashqai to discover the pros and cons of this SUV
INSIDE Sitting in the driver’s seat, you will understand why you chose the Nissan Qashqai. The dash is perfectly laid out, all of the buttons and switches seem to be exactly where you want and need them, and the driving position is among the very best in this sector. There’s just enough of the raised SUV view coupled to easy entry and exit through a wide-opening door. Even so, the front doors are not too lengthy, so getting out in a tight car park space is easy. The infotainment system is one of the easiest to use that we’ve encountered, and the heating controls use simple rotary dials.
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This means no faffing to suss out changing the cabin temperature on the move. The wide centre console provides some storage for your phone or house keys, and the door pockets are a reasonable size. In the back, children will enjoy plenty of room and there’s sufficient space for two adults to travel in comfort. The rear seat back splits 40/60 and tilts forward to supplement the boot space. With the rear seats occupied, the boot is still big enough to hold a wheelchair, though you may find the load sill quite high. However, the boot floor can be placed in upper and lower positions to vary cargo space.
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The driving position is among the very best in this sector
The Nissan Qashqai is available through Motability with an Advance Payment from £1,499. Find out more at www.motability.co.uk
EQUIPMENT Through the Motability scheme, the base Visia and top level Tekna+ trims are not available, so you’ll be looking to the Acenta Premium as the starting point. It comes with 17-inch alloy wheels, height adjustable driver’s seat and electric lumbar movement. There’s an 8-inch infotainment display that works with Apple CarPlay and Android Auto, and you get climate control and a host of safety systems. The N-Connecta adds 18-inch wheels, keyless entry and a larger 9-inch infotainment screen, while the Tekna has 19-inch alloys head-up display, heated steering wheel, and synthetic leather upholstery.
DRIVING In town, the Qashqai can feel a little firm over smaller bumps, but only on the Tekna’s large 19-inch wheels. It’s still more supple than many in this class and the Nissan is very composed at higher speeds, though it’s also a little noisier than key rivals such as the Ford Kuga and Volkswagen Tiguan. However, the Qashqai’s seats are among the most supportive in this sector and all-round vision is good. The steering is also very light when parking, even if it feels lifeless on more twisty roads, yet the handling is good. The big disappointment with the Qashqai is its engine and transmission combination. Most buyers will want the automatic gearbox, which is a CVT (continuously variable transmission) unit.
It causes the engine to rev hard when you accelerate and the mild hybrid assistance offers little practical gain when you do this. As a result, the engine is louder than you’d like much of the time. There’s also very little shove from the 1.3-litre motor below 2000rpm, so it needs to be worked hard just to keep pace with traffic.
SUMMARY The comfy and practical cabin are undermined by the dull driving manners of the Qashqai’s engine and gearbox.
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enable finance
Benefits Benefi ts changes explained Benefits like Universal Credit, Disability Payments and the State Pension provide an essential source of income for the more than 22 million people claiming them in the UK. As the new financial year approaches, it is important to understand how some benefits are changing
PIP in Scotland
If you live in Scotland and receive Personal Independence Payment (PIP) from the Department for Work and Pensions (DWP), Social Security Scotland will take over from summer 2022. Before this change takes place you will receive a letter from the DWP to confirm the move and inform you exactly when it will happen. Once this happens, you will receive Adult Disability Payment but there will be no gaps in your payments during this transition.
Employment Support Allowance
At the beginning of the coronavirus pandemic the government adjusted the way many benefits were assessed or issued. During this time, people eligible for Employment Support Allowance were able to make a claim from the first day they were absent from work instead of the eighth day. While many of these temporary changes have now ended, like the £20 uplift to Universal Credit, this rule will remain in place until 24 March 2022.
Accounts
In April and November 2022, anyone getting certain benefits issued into a Post Office Account will no longer be able to get payments into these due to the
accounts closing. People in receipt of Child Benefit or Tax Credits are advised to change arrangements by April while people receiving Universal Credit and State Pension payments will have to make this change by November.
Rates
Beginning in April both the new and old State Pension weekly rates will increase, giving people in receipt of the benefit between £2.55 and £5.55 more per week depending on their category. This will provide some recipients with over £280 more from their pensions for the 2022/23 financial year. Other benefits including Jobseeker’s Allowance, Pension Credit, Universal Credit, Personal Independence Payment, Carer’s Allowance and more will also see a small rise in weekly rates.
Time frames
As the weekly rates for many benefits increase, some eligibility criteria will also advance. From April the definition of terminal illness for Employment and Support Allowance and Universal Credit will be changed. Currently, terminal illness is defined as a doctor reasonably expecting their patient might die within six months, this will be updated to 12 months under the new criteria. It is expected that this change will be made for other benefits over the next two years. FOR MORE INFORMATION
Keep up to date with changes to the benefits system through Disability Rights UK (www.disabilityrightsuk.org), Turn2Us (www.turn2us.org.uk) or directly at www.gov.uk
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Building a budget Use our step-by-step guide to create a helpful budget and reduce financial stress
I
t is estimated that more than half of people in the UK don’t feel comfortable opening up when they are worried about their financial situation, but around 48 per cent admit they regularly worry about money. Learning about money, how to handle your own finances and where to find help and support is important to your health and wellbeing, and can help you lead a happy, fulfilled life.
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What is a budget? Creating your own unique budget is a great way to understand your money, what your financial situation is and what your next steps might be. These could include setting goals, saving or reaching out for advice and support around your finances. A budget can be especially important if you have costs associated with regular care that is essential to your everyday life. A budget is a valuable tool to help you manage your money well: it
considers all of the money you have coming in and everything that you are paying for, along with any money you owe to an organisation or bank. This is often a first step to getting in control of your finances and is helpful whether you feel concerned about money, financially stable or you haven’t thought about it before. Setting up a budget means you’re less likely to end up in problem debt, you are more prepared for unexpected costs and can more easily set financial goals like saving for something you want.
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Outgoings How to start
Starting your budget can take some effort and focus: it can be helpful to set aside some time where you will be free from distractions as far as possible. To get started you will need to work out your income and outgoings: the money you have coming into your accounts vs the money you have going out each month.
Income
Your income encompasses any money you receive in a set time period, normally on a monthly basis. This could be earnings from employment, money from benefits and pensions, a personal care budget or any other money you receive regularly. Even if you are already in receipt of some benefits, doing a benefit check online (www. gov.uk) will ensure you are getting everything you are eligible for. The total this money comes to is what you can afford to spend and should form the basis of your budget.
Looking at your recent bills or the last few months of your account history is a great way to get an idea of your outgoings. This could include: household bills like your rent or mortgage and council tax; living costs like food, gas and electricity or the internet; travel costs if you commute to work or have to attend appointments; the cost of subscriptions; and care costs if you have these. Once you understand what you are spending and where, it is helpful to know when this money is coming out of your accounts or how regularly you are doing things like food shopping. This is a good point to identify any costs that you don’t need or subscriptions you could cancel to save money. To avoid getting into debt, your outgoings shouldn’t be more than your income. If this is the case, it could help to speak with an impartial advisor. You can do this for free by contacting organisations like Money Helper (www. moneyhelper.org.uk) or debt charity Step Change (www.stepchange.org).
Reflect
Knowing where your money is going will allow you to consider where you can save and how much you can afford to spend on things you want after paying for the things you need. You can also set limits on different areas of spending if you feel you are overpaying for something or spending too often. In this situation it is important to be realistic and fair. Your outgoings might change on a monthly basis: once you have formulated an initial budget it can be helpful to use this over the course of a month and ensure you have included all aspects of your spending and income. If your income or outgoings change, you now have a basis to work from and to understand how this will affect your finances. FOR MORE INFORMATION Get more advice and information on finances from Money Saving Expert (www.moneysavingexpert.com), the Money and Pensions Service (www. moneyandpensionsservice.org.uk, 0800 138 7777).
Your outgoings might change on a monthly basis
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Car insurance adapted for you If your vehicle has been adapted or modified to cater for your disability, or you’re a carer who needs bespoke cover, experienced insurance experts at Adrian Flux can talk you through our tailor made policies.
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As spring approaches it’s a great time to find a new activity you can enjoy by yourself or with friends and family
Finding
NEW ACTIVITIES Adapting activities
Active at home
Finding an exercise you want to try and learning about the ways it can be adapted is a great way to introduce more activity into your life. Most activities can be changed to meet different needs and organisations like Activity Alliance (www.activityalliance. org.uk) provide helpful information on how to do this. The organisation has a list of useful exercise advice, workouts, videos and guides along with a breakdown of the STEP tool which can be used to adapt activities. STEP is an effective way to use household items to be active, standing for Space, Task, Equipment and People. On their website, Activity Alliance provide guides on how disabled people can apply the tool to sports and activities. These guides are available in alternative formats including British Sign Language, audio and easy read.
You don’t always have to leave your house to fit more activity into your routine: joining a new club, gym or exercising outside can seem daunting at first. Working together Sport England and Disability Rights UK have created Get Yourself Active (www.getyourselfactive. org), a platform helping to improve the health and wellbeing of disabled people through social care, health and sports. As part of the ongoing project, the organisations created their Active@ Home guides, allowing you to find resources to try new activities without leaving your house. The videos and toolkits focus on different activities including seated cardio and a body weighted workout, alongside helpful charts which show exercises that are suitable for people with arthritis and other health conditions.
Accessible guides Picking up a new exercise or activity can seem daunting, especially if you have never done it before or you’re trying to encourage a loved one to take part. There are plenty of guides available to help you get started. Created by the NHS, the Better Health programme (www.nhs.uk) includes accessible activities to keep disabled children and young people moving. Online, the programme has information and ideas to keep kids active, information on how to make activities fun as a family and a being active guide, alongside a list of national disability sports organisations to help you find more opportunities. Adding exercise into your daily routine doesn’t have to be complicated: Mencap have created a series of short videos that show simple exercises and challenges to be completed at home. Search #MoveWithMencap on YouTube (www.youtube.com) to get started.
FOR MORE INFORMATION
Organisations like Sport England (www.sportengland.org), Parasport (www.parasport.org.uk) and disability-specific charities can provide more information on getting active.
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SPORT on screen As stadiums reopen, fans return to the stalls and athletes travel to competitions around the world, there’s plenty of sporting events to look forward to
T
hroughout this year, different sporting world championships and competitions are still playing catch up after delays due to the coronavirus pandemic, but this has created a packed schedule of sporting events with elite athletes competing around the world. There’s something for everyone to enjoy and even if you don’t have plans to attend any events, there’s plenty of ways you can tune in to sport throughout spring and summer.
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Beijing 2022 Paralympic Winter Games WHERE: Beijing, China WHEN: 4-13 March HOW TO WATCH: BBC One, BBC Two, Eurosport At the 2020 Summer Paralympics in Tokyo, Team GB brought home 124 medals including 41 golds, setting the bar high as the Beijing 2022 Paralympic Winter Games kick off in March. With wide-ranging coverage of the anticipated events being broadcast on the BBC, fans can tune in to footage of the Games to see athletes compete in sports like wheelchair curling, Nordic skiing, para ice hockey, bobsleigh and snowboarding. At this Games 78 different events will take place across 10 days, kicking off with the opening ceremony.
Invictus Games WHERE: The Hague, The Netherlands WHEN: 16-22 April Following two postponements, the fifth Invictus Games will take place in The Hague, The Netherlands in Spring 2022. Over 500 competitors from 20 nations will compete at the event which has a full programme of adaptive sports. The Invictus Games is a multinational sporting event for wounded, injured and sick servicemen and women which was created by Prince Harry after he was inspired by the US Warrior Games in 2013. Previous events have been held in London, Orlando Florida, Toronto and Sydney. It is expected that a documentary detailing the lead up to the games will be released on Netflix before they begin in April.
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Birmingham 2022 Commonwealth Games WHERE: Birmingham WHEN: 28 July to 8 August HOW TO WATCH: BBC, BBC iPlayer After a trip down under to Queensland, Australia for the 2018 Commonwealth Games, over 5,000 athletes from 72 nations will travel to Birmingham this summer to take part in the 2022 Commonwealth Games. This will be the UK’s largest sporting event since the London 2012 Olympic and Paralympic Games, but in this instance para-sport is included throughout the schedule rather than happening separately. The schedule features 286 sessions across 19 different sports including para athletics, para swimming, wheelchair basketball, para powerlifting and para triathlon. In the lead up to the Games 2,022 inspirational people from all over the UK will carry the Queen’s Baton around England for 25 days before this relay ends at the opening ceremony on 28 July. At the opening ceremony of the games, the final relay runner will hand the baton back to the Queen, or her representative, who will officially open the games.
Wimbledon 2022 WHERE: Wimbledon WHEN: 27 June to 10 July HOW TO WATCH: BBC One, BBC Two Excitement is already building for the world’s most well-known tennis championships, Wimbledon. This year will mark the 135th edition of the championships, with wheelchair tennis players including the UK’s Gordon Reid and Alfie Hewett expected to compete.
ParaChampionships From swimming to dressage and cycling, 2022 is packed with para-championships taking place everywhere from Italy to Canada. In June you can tune into the Women’s and Men’s Blind Football European Championships; the World Shooting Para Sport World Cup; the World Para-Swimming Championships. Then in August the Para-canoe World Championship; Para-dressage World Championships; Para-cycling Road World Championships; World Paraathletics Championships will take place.
PROMOTING DISABILITY SPORT
Disability Sport Conference 2022 29 June to 1 July Coventry www.coventry.ac.uk Focused on how to promote human rights, diversity and inclusion in disability sport, the Disability Sport Conference 2022 is aimed at people using sport as a tool for health, inclusion or development within the disability community. This year’s event will centre around four themes: disability sport, human rights and social inclusion; sport and health for people with disabilities; Paralympic and disability sport legacies; disability sport for peace and development. Key note speakers, including three-time Paralympic gold medallist for Japan Miki Matheson, will discuss the themes and how to increase participation.
FOR MORE INFORMATION
Keep up to date with the latest disability sport opportunities through Special Olympics GB (www.specialolympicsgb.org.uk) and Parasport (www.parasport.org.uk).
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A DUTY TO REPORT T
During March 2022, a Cabinet Office consultation on disability workforce reporting will close, leaving questions and concerns about the possible effect of mandatory reporting on disabled employees and job seekers
he release of the UK Government’s National Disability Strategy in July 2021 marked the starting line for multiple new policies and consultations to inform future decision making. The aims of the strategy highlighted the importance of enabling disabled people to obtain, retain and progress in work. As the government works towards their commitment to ensure inclusive workplaces, increased opportunities for disabled people and tackling the employment gap, considering disabled voices is essential.
CONSULTATION
Now, the government is exploring the possibility of mandatory disability
Currently, the UK has a voluntary reporting framework
workforce reporting to help meet these goals. The consultation, which was launched by the Disability Unit in the Cabinet Office, will remain open until 25 March 2022. It aims to gather the opinions and concerns of employers and their representative groups; disabled people; disabled people’s organisations (DPOs); disability staff networks; and researchers in the field. Once complete, the responses will build on an evidence base of current reporting practices and what works well, exploring the for and against of implementing mandatory reporting and any alternative approaches that could be taken. Currently, the UK has a voluntary reporting framework for companies with more than 250 employees.
NEXT STEPS
The evidence base of data and opinions will go on to inform the Disability Unit’s response and any changes they will make. This is expected to be published online by 17 June 2022. If a mandatory disability workforce reporting policy was implemented, it would affect large employers in England, Wales, Scotland and Northern Ireland with any country in Great Britain subject to employment and equality laws set out by the UK Government.
CONCERN
Giving time for people in the disability community to contribute to the consultation should ensure any future policies reflect their unique needs and opinions, but concerns remain about the impact mandatory reporting could have. Some DPOs have questioned whether a framework like this could see companies putting pressure on their employees to disclose a disability, even if doing so wouldn’t benefit their work. Organisations including Disability Rights UK (www.disabilityrightsuk.org) have also highlighted the need for more workplace support for employees with a disability if this type of equality reporting became law.
HAVE YOUR SAY
To ensure future policy reflects the needs and wants of the disability community, it is important that disabled voices are included within the consultation. You can take part by completing an online survey or sending your opinions via email or post: www.gov.uk dupublications@cabinetoffice.gov.uk Disability Workforce Reporting Consultation Disability Unit, 10 Victoria Street, London SW1H 0NB
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HIGHER EDUCATION:
YOUR NEXT STEPS
As exam season looms you might already be thinking about how to get ready for your move to higher education
M
aking the move from school to university can be a big step, being organised and prepared can help make this transition easier. Bethany Bale is a policy and campaigns officer at Disability Rights UK (www. disabilityrightsuk.org). The organisation provides information and advice on your rights and runs the Disabled Students Helpline in England. “I think the best thing you can do for yourself is get organised, don’t add any extra pressure or expectation and also take time to celebrate your wins,” advises Bethany.
CONTACT
When you are getting ready to sit your final school exams, looking into support at your chosen university might not be at the top of your to do list, but
even pencilling in a chat with their disabled students’ support team or the admissions office can help to make this transition easier. “Don’t feel like you can’t contact your university in advance,” stresses Bethany. “All of the support information is normally online so you can look at what they provide, but it can also be good to call and ask questions: What support is there? What will your department be like? How can they adapt to your needs? “Most will even be happy for you to come down to the university and find out. It can be nice to go and get a feel for the place you are going to live if you haven’t managed to visit yet.” It can also be helpful to contact the head of your course or department to discuss your unique needs and how they can assist your learning.
EXPECTATIONS
Be patient with yourself and just enjoy your time
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The move to higher education is a big adjustment and it’s ok if you are nervous as well as being excited. Bethany, who lives with a disability herself, went to university herself and understands that it’s important to not put too much pressure on yourself. “It was a huge adjustment before the pandemic but even more so now,”
advises Bethany. “Be patient with yourself and just enjoy your time, it can take some time to settle in so just do what’s right for yourself.”
PARENTS
This time can be just as daunting for parents and carers as it is for young people. Gaining knowledge about your child’s new area can help to put your mind at ease. “It can help to find out where the closest hospital is, where’s the GP and how can we register for the GP, all of those different things can be reassuring for parents as much as they are for students,” offers Bethany. “It is an intense time and I think that you need to trust your child to make choices because you want them to be able to have that independence. “Trust that child knowing that you have that communication and knowing that although you can’t control the situation, they have you and anyone else in their arsenal of support to help when they need it.” FOR MORE INFORMATION
Contact your university’s support office for further advice or information, or contact the Disabled Students Helpline on 0330 995 0414
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Closing the
inclusion gap
Until the disability employment gap and disability pay gap are fully removed, work has to be done by employers, the government and in policy to create meaningful change for the UK’s one in five disabled people
I
n workplaces around the UK the inclusion gap, considering the everyday experiences of people in protected groups, remains. More is being done to prioritise diversity, but additional work is needed. Stigma, bias and a lack of understanding of people’s abilities have also led to a 16.5 per cent disability pay gap. This is the amount non-disabled workers earn more per hour in comparison to disabled workers, equating to a loss of £3,500 annually for the average working person with a disability. In quarter two of 2021, the disability employment gap - the difference between the employment rates of
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disabled and non-disabled people - was 28.4 per cent, increasing to around 60 per cent for people with a learning disability. The gap is decreasing, but not fast enough: disabled workers still move out of work at nearly twice the rate of non-disabled workers.
GAP
James Holden, who works for support charity United Response, believes the inclusion gap still exists for the disability community due to preconceived ideas and a lack of communication. “I feel that a lot of people aren’t willing to challenge their perceptions in order to have open and honest interactions,” expresses James.
“
I feel that a lot of people aren’t willing to challenge their perceptions
enable employment like English and Math,” reveals James. “It’s helping them to gain more qualifications and get a better understanding of the workplace, in turn improving pathways into work. “It revolves around helping people be independent socially, professionally and psychologically.”
TRAINING
“Everyone has their own lived experience and therefore everyone can add value to these conversations, whether that’s in the workplace, volunteering or just in daily life. “It’s about communication and understanding how to build a foundation to move forward.” James would like to see more representation of disability in the media with people sharing their lived experiences, helping people rightly view disabled people as a part of mainstream society. “I think in terms of employment we also need to do more for candidates. At United Response we help people looking for work with core skills
Better opportunities for people with a disability is a key part of closing the disability employment gap, but in order to improve the disability pay gap and the overall inclusion gap, there has to be better support for employers who are unsure of what steps to take. “There’s this sense that employers might feel awkward reaching out or asking questions, as if they might offend,” offers James. “While this is the case, these are important conversations to have, they allow you to address concerns, get disabled people’s perspectives and builds a mutual respect at work. “These conversations should be had with people who are already employed as well as perspective candidates, it allows for a more open dialogue and I just feel that there’s then this sense that employers care and that of course builds trust.” A willingness to learn from employers paired with suitable training and support can create an environment where interviewers can ask the right questions, allowing candidates to communicate their skills, needs and any concerns effectively. “Exposure is a critical point and obviously unless you have been personally affected by disability or someone close to you has, then I understand that it can be difficult to empathise or relate,” explains James. “If you just see it as having another human experience that might be slightly different to your own then you can learn. It’s just about being conversational and honest, and accepting that knowledge can be of benefit to society.” In the three months ending in October 2021, the unemployment rate fell to 4.2 per cent, down from 4.3 per cent in the previous three months. The decrease of the disability employment gap paired with this data can serve as evidence that perceptions are changing and more inclusive opportunities are available, but the rate at which they are closing is too slow to make a real impact for current candidates.
SUPPORT WITH UNITED RESPONSE United Response provide a host of support to help people with learning disabilities and autism to get a job and once they’re in work, as well as offering help for employers. “People working within United Response are able to give their viewpoint and share their lived experiences which helps influence training,” explains James. By speaking to candidates about their skills and interests, the United Response team can help identify the type of work that might suit you. If required, they can help you develop your skills through training and tailored resources before matching you with jobs. They also support the employer with training, allowing them to understand the needs of disabled employees and how to benefit from the situation. This support can be ongoing for as long as necessary from the time someone applies for a position through to being on the job, helping all parties to feel comfortable, productive and happy. These services are available in York, Greater Manchester, Devon and Cornwall. On a national basis, the organisation is also looking to employ more people with disabilities for roles such as support workers, student supports and back-office functions.
FOR MORE INFORMATION
To contact United Response visit www.unitedresponse.org.uk or call 0208 016 5678. Find further employment advice from www.businessdisabilityforum.org.uk
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Where some see barriers, we see potential
United Response is a top national charity and we support people with learning disabilities and autism to get a job they love – and then thrive in it. We also value the skills and lived experience of people with disabilities and autism to provide great support work and check that it’s being done well.
If either of these sound like you, please get in touch: For support, visit www.unitedresponse.org.uk/employment For vacancies, visit www.unitedresponse.org.uk/jobs Registered charity no. 265249 Photo © iStock
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Developing
SUPPORT C
urrently the disability employment rate is 52.7 per cent, dropping even lower to an estimated 22 per cent for people who are autistic. These statistics become more concerning as the employment of disabled people 2021 report from the Department for Work and Pensions found that disabled workers move out of work at nearly twice the rate of non-disabled workers, and disabled people move into work at nearly one-third of the rate of non-disabled people.
IMPROVE
While some people are unable to work due to a disability or health condition, there is increasing efforts to improve support for people that can and want to work. Providing jobseekers with support to build their skills, develop CVs and find new jobs, work coaches have been helping members of the public into work since the role was introduced in 2013. Now, the coaches will be better equipped to help people in the disabled community find and stay in work. As part of the UK Government’s plans to build back fairer after the pandemic, a host of support was announced to develop training and frameworks to improve work coaches’ understanding of disabled people’s needs.
forward, it will be condensed to a one-hour learning product to be completed once by all work coaches and their managers and only covers this single area of accessibility.
FRAMEWORK
While this training appears to solely cover some basic accessibility tools, it is further backed by a new pilot to support more people in the autistic community into work. A new autism framework has been designed with the National Autistic Society (www.autism.org.uk) and is now being tested at 15 Jobcentre Plus sites located across England, Scotland and Wales. The test project, which began in October 2021, assesses the current knowledge and practices for working with autistic people in these settings and will create a new service delivery framework which focusses on offering the right support. Due to be completed by 31 March 2022, the results of the project will be evaluated and, if positive, the new framework could then be rolled out across the whole network of Jobcentres in the UK, improving paths to employment for autistic people.
Paths to employment are still inaccessible for some disabled people, but new training could help to make a difference
There is increasing efforts to improve support for people who can and want to work
FOR MORE INFORMATION
Find out more about work coaches and the support available at www.gov.uk
TRAINING
The training aims to support the government’s commitment to getting one million more disabled people into work by 2027, part of the National Disability Strategy that was revealed during 2021. Moving forward, more than 26,000 work coaches in Jobcentres around the UK will undergo specialist accessibility training. The training, called Accessibility Fundamentals and delivered in partnership with Microsoft, will teach work coaches to support disabled jobseekers with tools like immersive readers, automated captions and magnifiers. It is hoped that this will aid the completion of job applications and in interviews. Although this training is a good step
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Find your perfect place. As a leading recruitment outsourcing provider, Guidant Global can offer you direct and exclusive access to great jobs with some of the UK’s top employers. We’re also a Disability Confident Leader, and our award-winning approach to disability inclusion is building careers and changing lives.
criteria required for the job) and please don’t forget to tell us about any adjustments you might need during the recruitment process.
It goes without saying, we welcome applications from people with disabilities! In fact, if you have a disability, we’ll guarantee you an interview for any internal role (assuming you meet the minimum
If you would like to find out more about inclusive careers at Guidant Global, or search for roles with our amazing clients, please visit our website. jobs.guidantgroup.com
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Providing
CANDIDATE RESOURCES A year on from the launch of the Evenbreak Career Hive, founder Jane Hatton discusses why the resource is helpful for candidates Why did you launch the Evenbreak Career Hive? We had candidates coming to us and asking for career support, we would signpost them to other organisations but they would come back and say they weren’t eligible due to their disability, being on the wrong benefit or living in the wrong place. There was a gap in provision generally for disabled candidates and so we designed the Hive to fill those gaps. What have you learned since the Hive launched a year ago? We’ve found that a lot of the barriers candidates face are around confidence and people undervaluing their strengths, when they work with our career coaches they realise that they’re Jane Hatton
far more skilled than they thought. There’s a huge range of differences in how candidates want to be supported: an awful lot of people just want to find a resource online, maybe a template for a CV or some tips on interviews, others might attend events like meet the employer or workshops and find that useful, and then others really need some one-to-one support which might be about identifying transferable skills or confidence building or interview prep. Everybody’s barriers are different and everybody’s needs are different, I think what we’ve been able to do is develop a service that meets all of those different needs. Why should employers consider disabled candidates, premium candidates? There’s a perception that disabled people are unqualified and unskilled and that’s certainly not our experience at all. We talk about our candidates as premium candidates because disabled candidates will have the same diversity of skills and talents and qualities as every other candidate but we also have this experience of navigating around barriers every day of our lives and so we develop additional skills. What support is available to help employers become more inclusive? We offer an awful lot of support to employers so that they can become more inclusive and accessible, and understand the benefits of employing disabled people. We also want to help them understand what barriers they might be putting in place so that they can remove those. We have an online best practise portal for employers
We talk about our candidates as premium candidates
which is subscription-based but it’s full of resources like short videos or pages on things like how to interview someone who is autistic or how to use a BSL interpreter or how to write inclusive job descriptions. What we’re really trying to do is upskill employers so they become more inclusive and accessible and are able to give candidates the support they might need. How can meet the employer webinars help candidates and employers connect? Employers come along and talk about what kind of jobs they offer, what the recruitment process looks like, how candidates can ask for adjustments in that process and how to shine in the process. It’s really an opportunity for candidates to get to know a bit more about that employer, to see a human face and ask any questions.
FOR MORE INFORMATION
Find out more about the Evenbreak Career Hive at hive.evenbreak.co.uk
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enable employment
SUPPORTING
INCLUSION AT WORK
Striving to be the employer of choice for disabled talent, PageGroup is committed to creating inclusive workplaces and recruitment processes
P
ageGroup launched its Ability@Page strategy in 2016. While the strategy is dedicated to promoting equal opportunities and inclusion in the workplace, the specialist recruitment consultants have always been devoted to changing lives through creating opportunities for people to reach their potential. Since this strategy was devised six years ago, PageGroup has gone on to partner with disabled people’s organisations, become a Valuable 500 company and won multiple awards recognising its work. Most recently, the company was given the Recruitment Industry Disability Initiative (RIDI) award for Getting Started within the recruitment industry. Now a Disability Confident Leader, PageGroup is committed to promoting inclusion at work, both within the company and through clients and candidates.
LIVED EXPERIENCE
Spearheaded by chief executive and wheelchair user Steve Ingham, this commitment is exemplified by PageGroup’s teams: everyone working in diversity and inclusion brings their own lived experiences, and ideas or concerns brought forward by employee networks are listened to. Employees are also trained to support their health, and the health of candidates; they must complete Clear Company Inclusive Hiring modules and all have access to the Clear Talents platform to support them with workplace adjustments from day one.
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understands the importance of inclusive recruitment processes and the benefits of having a diverse workforce.
THRIVE
Ollie Thorn
We know how to support candidates in the best way possible Ollie Thorn, senior manager of the diversity and inclusion client solutions team at PageGroup, has witnessed the positive impact of the company’s work both personally and when working with clients. “There’s people out there that can bring so many skills to organisations, but they’re often ignored or excluded,” reveals Ollie. “What we’re doing as a team is quite different: we’re not about tokenism at all and this is very personal for me.” As a wheelchair user himself and surrounded by a team of colleagues from diverse backgrounds, Ollie
“We know how to support candidates in the best way possible, but equally, we work with our clients to ensure they are taking the best steps so that anyone is given the best opportunity to fulfil their full potential,” enthuses Ollie. As an employee of PageGroup, Ollie is given trust and understanding that helps him to perform at his best. “For me the most important thing is good communication with my line manager. There’s a real understanding and I think this comes from the PageGroup culture of leadership supporting employees as much as they can,” explains Ollie. “Diversity of thought and of individuals really brings so many benefits to businesses. We can all share our experiences and use them to help improve the playing field for everyone.” Striving to be the employer of choice for people from diverse backgrounds, the opportunities and support provided by PageGroup go further than a diversity and inclusion strategy. It is ingrained in the company’s culture, making it a great place to work and best placed to help find work for the disability community. FOR MORE INFORMATION
Find current vacancies at www.michaelpage.co.uk/recruitment-jobs
We’ve equality at our core. We’ve been named as a disability confident employer by Jobcentre Plus and have a positive attitude towards job applications from disabled people. As we progress, we’ll continue to improve the way that we support our staff, customers, and stakeholders, regardless of disability, gender, ethnicity, age, religion, or sexual orientation.
Maximise your potential We are an inclusive employer and want to give everyone the opportunity to thrive at work. Visit our careers website to learn more: www.michaelpage.co.uk/recruitment-jobs
#JoinPageGroup
Our Equality, Diversity, and Inclusion strategy is a priority at RoS. It’s not a one off or an event, it is an ongoing process, and we will work for our colleagues to feel safe, supported and included at work. We want to be an employer of choice, attracting and retaining the best and widest possible pool of talent.
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The value of
EMPLOYEE INPUT
The value of employee input shouldn’t be underestimated, helping organisations to build a more innovative workplace. Registers of Scotland are dedicated to creating a skilled and talented workforce, inclusive of everyone
R
esponsible for keeping public registers of land, property and other legal documents in Scotland, Registers of Scotland (RoS) offer a range of support to employees, helping them to thrive in the workplace. Sue Rees has worked across multiple departments of the Disability Confident employer that offers flexible working hours and continuous training and development opportunities. Sue is a carer for her son and also lives with a primary immune deficiency, meaning her immune system struggles to fight infection. Throughout her years at RoS, Sue has benefitted from the employer’s positive attitude towards support for disabled colleagues, but this became especially important when she had to prioritise her health during winter 2019. As flu season began Sue was given the opportunity to take on a temporary role with the human resources team that would allow her to work from home and protect her health. When the coronavirus pandemic made home working the norm, Sue’s years as an employee made her the perfect fit to join the colleague experience team, a position she has remained in ever since.
EMPLOYEE SUPPORT
“We are really focused on inclusion and diversity as an employer because we recognise that it actually makes us stronger,” explains Sue. “The more diverse your team is, the bigger wealth of experience you have. “If you include everybody in decision making then you have a stronger organisation
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and hopefully an organisation that is also attracting new skills from a diverse range of candidates.” As for everyone, multiple lockdowns and restrictions created obstacles for employers, but RoS has come out of the other side with an even greater focus on employee support. “I’m actually really proud of how the organisation developed during lockdown and COVID,” admits Sue. “We’ve implemented so many things that are an advantage for disabled people and carers.” One of these is the RoS coffee roulette group where employees can join and be matched up with a colleague from another department to tackle isolation. “It has been wonderful in combatting loneliness for everyone and it has proved very popular, it’s something I see us continuing long-term,” offers Sue.
COMMUNICATION
From the services RoS provides to the organisation’s offices, accessibility and meeting employee’s needs have always been a priority, but the creation of an employee forum and steering group has generated even more resources. “Our chief executive takes it very seriously and that makes all the difference: the people at the top of the organisation really care,” stresses Sue. “Your needs and ideas are taken seriously so you get the time and resources you need to implement things. “I know that with any new plans or policies one of the first steps will be to reach out to people with protected characteristics and ask for their input.”
The more diverse your team is, the bigger wealth of experience you have
FOR MORE INFORMATION
Find out about career opportunities with RoS at www.ros.gov.uk
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Dementia and the arts Making a positive impact on people living with dementia and care staff, one theatre is extending their dementia provision into care homes
I
t is estimated that around 850,000 people in the UK are living with dementia with numbers worldwide set to triple by 2050. With less than 300 Admiral Nurses – specialist nurses for dementia patients – across the country, different services and activities in the community can be vital. The Grand Theatre in Wolverhampton is known for its Victorian architecture and wide range of shows, but the venue also has a varied dementia provision that stretches further than specialist performances.
PIC: © JONATHAN HIPKISS
PROVISION
Vicky Price, associate director for audience and development at the Grand Theatre, was integral to the launch of the provision. “People living with dementia respond really well to things like music and theatre but we wanted to do more than the usual adapted performances, so in 2019 we started our memory café,” remembers Vicky. “Very quickly it went from one a month to two a month, then three a month. “We called it a memory café rather than an Alzheimer’s café so that it was open for anybody, but the main focus was always on people with dementia and their carers or partners.” The dedicated cafes give people living with dementia the chance to relive memories through music and to socialise, but importantly, they give carers or loved ones the chance to meet people who are in a similar situation to them. “This is an ever-evolving strand of work for us because it can be quite isolating when you’re living
“
with someone with dementia, this is something that we feel very strongly about continuing and expanding,” stresses Vicky.
PERFORM
When the pandemic started to affect services during Spring 2020, the theatre had to adapt their memory cafes, moving some online, but they felt something was missing. “During the summer we started connecting with people who normally couldn’t get to the theatre themselves,” explains Vicky. “When nursing homes were starting to let people in to visit again we asked if we could come and perform.” The plan initially spanned across a two-week period but soon grew with demand, running for seven weeks across summer and autumn in 2021 and visiting 66 locations in total. “It just grew and it was amazing, it was all fully funded and now we are lucky to be launching a new tour for 2022 thanks to sponsorship,” reveals Vicky. This new tour will build on the 2,000 people in care homes who have already benefitted from the shows.
This is an ever-evolving strand of work for us
IMPACT
Having witnessed the impact tours like this and a good dementia provision can have, Vicky would like to see more opportunities for people living with the condition to access music and the arts. “There are many people who are affected by dementia in some way whether it’s a parent or a grandparent, I think this is an amazing opportunity for all parties,” enthuses Vicky. “The art form is making a massive impact on people’s lives, we have proved that it’s a very good source of therapy for people and in my opinion more money and time should be invested in things like this.” FOR MORE INFORMATION
Find out more about the Grand Theatre’s dementia provision at www.grandtheatre.co.uk or by calling 01902 42 92 12
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enable voices
BEHIND THE SCENES WITH
Henry Fraser After Henry Fraser sustained a spinal cord injury that left him paralysed from the neck down, he started creating art using a mouth stick. Since then he has built a fan base including a-list names and released multiple books. Now, the artist is opening up about his experiences and how the pandemic changed his work
How has your art developed in the last seven years? When I first started painting I was very cautious about what I was doing in terms of my brush strokes and not straining my neck and shoulders. Now, I try to do different things and I’m always trying to introduce new colour combinations or different subjects. My life is defined by routine because it has to be, so this is a nice way to break away from that. I find inspiration from the environment around me, everything from images on social media to whatever I’m watching on TV, sometimes from
I felt like I was rekindling this love of art and painting that I had as a child
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landscapes or animals. I like to have a very clear plan when I start but this normally changes and evolves along the way. In what ways have your experiences and art helped you connect with other people? I’ve been extremely privileged that I’ve been allowed to share these personal, intimate moments with complete strangers, especially since I wrote my first book about my own experiences. Since then I have gotten tonnes and tonnes of emails and messages detailing people’s stories whether it’s divorce or the death of a loved one or a similar injury to my own, really deeply personal things that people feel comfortable sharing with me and I think that’s the biggest privilege I have in my life. How did your experiences help you through the pandemic? When I was in hospital after my accident
in 2009 and learned that I had a long 18 months ahead of me I thought ‘at least I have a time frame’, but when I spoke to my doctor he broke it down and suddenly my 18-month target was reduced down to five minutes of exercises the next day and ten minutes the following. It was this idea of not focussing on the end goal but reducing it down to miniscule increments. I’ve carried this through everything I do and that really helped me during the pandemic. I was stuck inside for six months and although it was difficult it was also really the first time where I was at home, focussed on my art and nothing else. Right at the beginning I ordered a load of new materials and it gave me this chance to try new things that I wouldn’t normally do. FOR MORE INFORMATION
PIC: © HENRY FRASER VIA INSTAGRAM
How did your love for and your career in art begin? In 2015 I was on bed rest because a sore on my back had opened up. I wanted to do something that wasn’t watching daytime TV or endlessly scrolling through social media: just like I would with a pen I knew I could tie a stylus for my iPad to my mouth stick so I downloaded an app and got started. My drawings were incredibly basic at first but like with anything, you get better at it the more you do. I felt like I was rekindling this love of art and painting that I had as a child. It all kind of evolved from this point and it’s been a whirlwind seven years now.
See Henry’s art and learn more about his story at www.henryfraserart.com
Employing your own care and support Employing your own personal assistant(s) can help you live independently, in a way that you choose. Our online toolkit will help you to recruit a personal assistant and explains what to do when they’re working for you.
21 3 4 Before your g anRdecru personal Managin iting ng pyo erur assistant sostarts a developi t assistanntal assista u al on o rs pe nt ting Sor lems b o pr
‘Employing personal assistants’ toolkit This toolkit guides you through the process of recruiting, managing and training a personal assistant. It’s available online via the Skills for Care website.
Contents
nts
Conte ents
Cont
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Individual employer funding You can apply for funding to pay for training to develop you as an employer and to develop the skills of your personal assistant(s). It can also cover the cost of travel and hiring replacement support.
www.skillsforcare.org.uk/individualemployers
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