The UK’s leading disability and lifestyle magazine
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August / September 2020
OVER TO YOU Looking at the impact of life in and out of lockdown on members of the disabled community
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Fuel economy and CO₂ results for the Mitsubishi Range (excluding Outlander PHEV) / MPG (l/100km) (combined): 32.5 – 56.5 (8.7 – 5.0) / CO₂ emissions: 196 - 113 g/km. Fuel economy and CO₂ results for the Mitsubishi Outlander PHEV / MPG (l/100km) (weighted combined): 139.7 (2.0) / Electric energy consumption (weighted combined): 3.68 miles/kWh / CO₂ emissions (weighted): 46 g/km / Equivalent all-electric range: 28 miles. The Motability Contract Hire Scheme is administered by Motability Operations PLC (Registered Company No. 1373876), City Gate House, 22 Southwark Bridge Road, London, SE1 9HB. To qualify you must be in receipt of the Higher Rate Mobility Component of the Disability Living Allowance, the Enhanced Rate of the Mobility Component of the Personal Independence Payment, War Pensioners’ Mobility Supplement or the Armed Forces Independence Payment which will be taken in lieu of the four weekly rental. No advance payment on Mirage range and ASX Dynamic. Terms and Conditions apply. Please ask the dealer for full details. Rentals valid for applications placed between 1st July and 30th September 2020. Figures shown are for comparability purposes; only compare fuel consumption and CO₂ figures with other cars tested to the same technical procedures. These figures may not reflect real life driving results, which will depend upon a number of factors including the accessories fitted (post-registration), variations in weather, driving styles and vehicle load. Outlander PHEV figures were obtained using a combination of battery power and fuel. The Mitsubishi Outlander PHEV is a plug-in hybrid vehicle requiring mains electricity for charging.
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Welcome As we enter our new normal, I hope you enjoy the return of Enable Magazine…
The UK’s leading disability and lifestyle magazine
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EDITOR’S PICKS... 14 RECOGNISING INVISIBLE CARERS Carers have been a rock for many during lockdown and it’s time their hard work celebrated. A group of carers reveal what changes they want going forward to be better supported. 22 THE IMPORTANCE OF KINDNESS In the new normal we must discuss our mental health and be kind to ourselves and others. 51 POWER OF LOVE Families with disabled children have been tested recently as lifelines were put on pause. Three families share their experiences.
t feels good to be writing to you after what has been a tough couple of months. Lockdown was different for everyone; speaking with members of the disabled community throughout this issue there is no denying the hardships people have faced. From misinformation, fear, and isolation we have all lived through a testing period. I want to take this time to say a heartfelt thank you to all the carers, frontline workers and beyond for the incredible job you have done and your commitment and dedication. Some of our cover stars are people making a difference in the world of disability over the last couple of months, and their work needs to be celebrated. Yes, it has been disheartening to see members of the disabled community being left behind, but it has been wonderful to see the kindness and support people have shown towards one another. One woman ensuring nothing holds her back is Caroline Coster (page 32). After battling coronavirus, Caroline was diagnosed with sepsis resulting in her becoming a quadruple amputee. Despite the obstacles, Caroline has a positive attitude towards her future. I hope you enjoy this issue, please don’t hesitate to contact me using the details below if there are topics you want us to cover. Make sure to head to page 67, too, where we’re running a special offer on subscriptions for you Get in touch and a friend. Take care. editor@enablemagazine.co.uk facebook.com/enablemagazine twitter.com/enablemagazine
Lorne Gillies, Editor
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PUBLISHER Denise Connelly denise@dcpublishing.co.uk EDITOR Lorne Gillies lorne.gillies@dcpublishing.co.uk STAFF WRITER Emma Storr emma.storr@dcpublishing.co.uk EDITORIAL CONTRIBUTORS Gail Porter Tim Rushby-Smith Alisdair Suttie DESIGN AND PRODUCTION Lucy Baillie lucy.baillie@dcpublishing.co.uk SALES Marian Mathieson marian.mathieson@dcpublishing.co.uk
Behind the scenes
ENABLE MAGAZINE www.enablemagazine.co.uk
LOCKDOWN FITNESS
At Enable we’ve been keeping active, and some of the team are taking part in the 2.6 challenge to raise some funds for charities across the UK.
DC Publishing Ltd, 198 Bath Street, Glasgow, G2 4HG Tel: 0844 249 9007
#ENABLECOMMUNITY
It’s been great connecting with our readers over the last few months, and you can still get involved with the #EnableCommunity to share your experiences online or in the magazine.
ONLINE
As always, our website is continually updated with the latest news, interviews and reviews. Our top read: Made Possible: One book, eight voices, an enriching journey of success for the learning disabled community.
©DC Publishing Ltd 2020. All rights reserved. No part of this publication may be reproduced or used in any way without prior written permission from the publisher. The views expressed in this magazine are not necessarily those of DC Publishing Ltd. The publisher takes no responsibility for claims made by advertisers within the publication. Every effort has been made to ensure that information is accurate; while dates and prices are correct at time of going to print, DC Publishing Ltd takes no responsibility for omissions and errors.
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What’s inside August / September 2020
Voices
10 LOCKDOWN DIARIES Two people share their experiences of a life on hold. 20 A WORLD UPSIDE DOWN Our columnist takes a look at a world turned on its head. 24 LIFE IN LOCKDOWN Gail Porter gives thanks to carers and charities.
Spotlight
18 COMING OUT OF LOCKDOWN With face masks and distancing, what does the ‘new normal’ mean for the disabled community? 35 THE NEED FOR REFUGE Calls to domestic abuse charities increased in lockdown. If you’re disabled, where do you turn for help? 48 CHALLENGING THE NEW NORMAL With routines continually changing, we look at the best way to help autistic people. 4
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Care
14 RECOGNISING INVISIBLE CARERS Carers share their experience of hidden care.
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32 A JOURNEY OF RECOVERY Quadruple amputee Caroline Coster discusses becoming newly disabled. 38 DEMENTIA CARE ON PAUSE How has lockdown affected dementia symptoms? 51 POWER OF FAMILY Services and appointments have been stalled, but the power of family can help everyone progress. 81 A HELPING HAND You’re never alone, there are a plethora of support groups waiting for you to reach out.
Health
22 THE IMPORTANCE OF KINDNESS With concerns of an upcoming mental health crisis it’s time to be kind and open up.
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26 TIME FOR IMPROVED HEALTHCARE ACCESS A look at the processes in place to provide greater healthcare for people with a learning disability. 29 OVER THE HURDLE TO CERVICAL SCREENING Cervical screening is a critical test, how could COVID-19 break down barriers for disabled women? 43 UNDERSTANDING BRAIN INJURY IN CHILDREN Concussion can be a hidden issue for young children, one charity is on hand to help.
Life
41 PODCASTS TUNING IN The top podcasts to dive into when it’s time to unwind. 46 VIRTUAL DAYS OUT Staying in is the new going out, even your favourite tourist spots are going online.
68 PRODUCT ROUNDUP Our pick of adapted products. 82 APPRECIATING TECHNOLOGY Lockdown has highlighted the importance of technology to keep us connected.
Finance
61 REVIEWING BENEFITS The benefits system has changed in recent months, we discover the new process of applying.
Employment
70 IN CONTROL OF YOUR CARE Discover how you can get ahead when hiring a PA.
Housing
64 INDEPENDENCE AT HOME How can we campaign for inclusion on the housing market?
Education
79 ADVANCING ONLINE Take your learning online with our top courses to enjoy at your leisure.
Motoring
72 CLOCKING IN, AT HOME The highs and lows of working from home.
57 CHANGES TO CAR DEALERSHIPS Motability share the safety changes to expect when shopping for an adapted car.
75 THE FIGHT FOR A DIVERSE WORKFORCE Could this be the start of disability inclusion in the workplace?
58 REVIEW: SUZUKI SWIFT Alisdair Suttie gets behind the wheel to test drive the Suzuki Swift for your accessibility needs.
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enable news
News BUSINESSES SUPPORT INITIATIVE FOR CLEAR FACE COVERINGS RESEARCH REVEALS BUSINESSES SUPPORT calls for clear panel face coverings for employees, customers and clients. Face coverings are now mandatory, but the D/deaf and hard of hearing community are facing challenges communicating with the masks. Findings from Business Disability Forum suggest that 90 per cent of businesses and organisations would
recommend the use of clear panel face coverings. Business Disability Forum are asking the UK Government to update face mask guidance for businesses and the general public to reflect the benefits for lip readers of the use of clear panel face coverings. And, to approve the use of clear panel face coverings for both PPE and non-PPE use.
Transition plans required to help autistic children return to school
Calls for increased recognition of social care workers THE UK GOVERNMENT REVEALED a pay rise for many frontline workers at the centre of keeping the UK running during COVID-19, however, charities are calling on social care workers to be recognised. Edel Harris, Chief Executive of the learning disability charity Mencap, said: “It’s an insult to support workers that the Government claims to value their work yet thinks minimum wage is fair pay. “The Government shouldn’t suggest that there is little they can do about it when it is their responsibility to set national policy and funding levels.” Support workers have been imperative in providing care during lockdown and have faced challenges when accessing PPE or conducting duties safely.
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THE NATIONAL AUTISTIC SOCIETY SCOTLAND is calling on schools to provide all autistic children with a personalised transition place when returning to school in August. Figures show there is an estimated 6,500 autistic children across Scotland, with many children experiencing distress due to lockdown and change in routine. Nick Ward, director of the National Autistic Society Scotland said: “Many autistic children will have been out of school for over four months by the time the new term begins. “Some have coped very well. Others however, have struggled under the strict restrictions and huge change to routine and we’ve heard from families under severe pressure with profound impacts on mental health and wellbeing.” For more information and guidance, visit the National Autistic Society (www.autism.org.uk).
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Official fuel consumption WLTP for the ŠKODA KAMIQ range in mpg (litres/100km): Combined 56.5 (5.0) to 41.5 (6.8). NEDC equivalent CO2 combined emissions for the ŠKODA KAMIQ range are 129 to 154 g/km. Figures shown are for comparability purposes; only compare fuel consumption and CO2 figures with other vehicles tested to the same technical procedures. These figures may not reflect real life driving results, which will depend upon a number of factors including the accessories fitted (post-registration), variations in weather, driving styles and vehicle load. Data correct at July 2020. Figures quoted are for a range of configurations and are subject to change due to ongoing approvals/changes. Please consult your retailer for further information.
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31/07/2020 11:43
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News Guide dog training hindered by lockdown GUIDE DOGS HAS APPEALED to the public not to approach guide dogs in training with more dogs in training on the street due to coronavirus restrictions. The charity, Guide Dogs has revealed that due to limitations on the use of training centres, guide dogs in training have been distracted by passers-by communicating with the dogs and interrupting concentration.
Alongside distractions, trainers are finding the empty city streets a challenge meaning dogs are missing out on vital training manoeuvring busy streets. Trainers are also unable to go into cafes, shops and on public transport in the same way as before. Social distancing rules have also been an issue when training future guide dogs.
ADHD SERVICES SEE FIVE YEAR WAITING TIMES
QATAR HAS ANNOUNCED ITS interest in being the host nation for the 2032 Olympic and Paralympic Games. The Gulf state is already preparing to host the 2022 World Cup, and expressed interest in hosting the Olympic and Paralympic Games in both 2016 and 2020. “Never before has an Olympic Games been held in the Middle East,” said Qatar Olympic Committee president Sheikh Joaan bin Hamad bin Khalifa Al-Thani. The 2020 Tokyo Olympic and Paralympic Games have been postponed due to coronavirus. The Games have been rearranged to 2021 and will still be entitled the 2020 Tokyo Olympic and Paralympic Games.
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PIC: ©TOKYO 2020
QATAR EXPRESSES INTEREST IN HOSTING 2032 OLYMPIC AND PARALYMPIC GAMES
FREEDOM OF INFORMATION REQUESTS to NHS Trusts has revealed extended waiting times for adults waiting on attention deficit hyperactivity disorder (ADHD) diagnoses. The data was obtained by the BBC prior to lockdown, but patients have since been told to expect even further delays due to the pandemic. Increased waiting times are a concern for people waiting to receive diagnosis for a learning disability or additional educational needs. Working on the story, the BBC discovered that the average waiting time for diagnosis is one year.
LOCKDOWN
Diaries
Regardless of age, lockdown left people faced with fears, worries and concerns about self-isolating and care. Two people share their experiences of life in lockdown, and what they are planning for the future
NATASHA Her decision to keep shielding
N
atasha Coates is an elite disability gymnast with 22 British titles to her name. Prior to lockdown Natasha (www. natashacoates.co.uk) was training and living life as normal – as we all were. However, diagnosed with a life-threatening condition called mast cell activation syndrome Natasha made the difficult decision of shielding the week before lockdown was officially announced due to the increasing cases of COVID-19. “This was hard because events were still happening that week, and I felt disappointed that I had to miss out. However, I knew it wasn’t worth the risk,” emphasises Natasha. “Like everyone, lockdown has had its highs and lows. I have spent a lot of time working on myself and doing things I didn’t have time to do before. It has been
My friends are able to meet up with each other whereas I am still isolated
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rather lonely though, it wasn’t too bad at the start as we were all in it together, but it’s definitely been harder over the past few weeks. “As the lockdown is slowly lifting my friends are able to meet up with each other whereas I am still isolated; it wasn’t so bad when we were all in the same situation,” Natasha adds. Facing feelings of loneliness during lockdown, Natasha, who is also autistic, has experienced heightened levels of anxiety and depression. “Anxiety thrives on uncertainty and depression thrives on isolation,” explains Natasha. “Nothing brings more uncertainty and isolation than lockdown during a global pandemic. I’ve struggled with anxiety mostly; a lot of my friends are key workers and I worry about their safety.” Whilst in lockdown, Natasha has expressed that the change in routine has affected her autism, too. Natasha says: “When I have a meltdown, I tend to go into flight mode which doesn’t work well when you can’t leave the house. I would usually go for a walk which hasn’t been possible. “I have also seen an increase in meltdowns, I think mainly because all of my socialising now is online either via text or video chat. I find video chat hard work as I can’t read people as well and can
easily misinterpret what is being said. I’m very blessed to have amazing friends who understand me and take the time to help me understand.” As the world begins to reopen Natasha has made the decision to continue shielding. Having followed the science of the virus across the UK rather than concentrating on media coverage, Natasha is committed to ensuring she makes the choices that will be beneficial for her health going forward. “My biggest piece of advice would be to go at your own pace,” adds Natasha. “I started off very slowly leaving the house, my first step was to just stand outside the front door, then followed by walking to the end of my drive. “I know others who have gone straight out into shops and cafés and that is fine too. It’s all about doing what you feel comfortable doing and being kind to yourself.” Moving out of lockdown, although still shielding, Natasha has enjoyed a slower pace of life taking the time to craft, read, and taking the opportunity to say no. Going forward, Natasha is committed to ensuring she has more time to continue doing the activities and hobbies she enjoys – an attitude we can all take forward in future.
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#OverToYou
Share your lockdown diary with the Enable Community by emailing, editor@dcpublishing. co.uk
DAVID Concerns for the future of care
L
iving alone in sheltered accommodation, David, who is in his mid-80s, has a range of disabilities including a rare, neurological condition. Since the start of lockdown, David has been in his bedsit for 156 days and counting. “It’s been very, very worrying,” reveals David about life in lockdown. “The social services immediately told me that they could only do the basics and I couldn’t get any extras.” Whilst in lockdown, David faced restrictions from the level of care he could receive due to safety concerns, which has had a detrimental impact. David continues: “Lockdown has made me restless and has placed a considerable amount of stress on me unnecessarily. More money needs to be put into social care. I never thought, after living 88-years in this country, that we would ever stoop this low. People don’t want to know about elderly and disabled people, it’s as simple
People don’t want to know about elderly and disabled people as that. It’s very sad that it has come to this.” Whilst in lockdown it was revealed that David’s level of care has been threatened due to funding cuts by the local authority because of the pandemic. For David, and many other elderly members or disabled members of society, the fear whilst in lockdown has trickled out into the new normal. Even so, David is optimistic he will soon be able to go outside. “I don’t mind wearing a face mask, but there are certain stores and organisations and businesses who have decided to adopt their own rules or interpretations
of the guidelines making going outside more and more difficult for disabled people,” emphasises David. In fact, one store in David’s town has announced they will not be able to accommodate wheelchair users because it will be challenging to adhere to social distancing. In David’s experience of lockdown, it has resulted in reduced accessibility and inclusion for the disabled community. “We must come to terms with reality and be realistic about the fact we are getting older,” concludes David. Thankfully, David has found support from Age UK (www.ageuk. org.uk) during lockdown with ongoing calls, and the charity are committed to ensuring nobody is forgotten as lockdown lifts. No matter your experience in lockdown, it is evident this year has shone a spotlight on the differences and inequalities in society. We can only hope those who continue to shield for their health or people facing reduced levels of care are not left behind.
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Recognising
invisible carers
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enable care
In the UK one in every eight adults is a carer, with an additional 700,000 young people taking on caring responsibilities. Three carers discuss the need for recognition, more support and what changes they want to see after the pandemic
NEW EXPERIENCES
Lilyrose, 12, cares for her little brother who is autistic, she explains: “I help care for him, especially when he gets stressed: I try and help him but still stay out of his way.” With support from young carers charity MyTime Young Carers (www. mytimecharity.co.uk) Lilyrose is usually able to attend days out, allowing her respite and time to meet new people, something she is unable to do normally due to her responsibilities. “Whenever I want to go out we ask William and if he says no then we can’t because we can’t leave him alone, really,” explains Lilyrose. “When I go to the young carers group it’s really good because then I can go somewhere I haven’t been before, I like meeting new people.” Getting to do activities like bowling with the group means Lilyrose can talk to other young carers who understand her situation more than her school friends do, she says: “I don’t think they’d be very interested to be honest, it’s nice to have this at home then I can think about other stuff at school.” Going to school is a form of escapism for Lilyrose, but as lockdown came into place she often felt lonely. Now, Lilyrose takes part in video calls with other young carers through MyTime
Young Carers. “Before we did the Zoom calls I was getting a bit stressed because you can’t talk to anyone or see people,” remembers Lilyrose. “We did those calls and I was really happy after. I think I’d be very stressed and very sad without them because there’s nothing to do otherwise.” As the UK eases out of lockdown, Lilyrose would like to see the calls continue, but she also wants more opportunities for her brother to be involved with in the future: “It would be good if William could do something like the days out, sometimes when I go out he’s a bit annoyed that I get to go out and he doesn’t because he is autistic.”
EDUCATION
Unlike Lilyrose, Mike, who cares for his wife who has MS, has been able to get out of the house thanks to their location, he reveals: “Generally speaking we haven’t been as badly affected as many, we’re in a rural location which has enabled us to still go out on walks in the area.” While their ability to leave the house hasn’t been impacted, the support Mike’s wife usually receives for her condition was put on hold. “My wife relies on physiotherapy classes and oxygen therapy classes both of which have stopped,” explains Mike. “That has affected her both physically and mentally.” Mike has arthritis but isn’t registered as disabled meaning the support from
“
Support has been withdrawn temporarily and we’ve had to cope without it
“
W
hile cities across the UK went into lockdown, unpaid carers faced another challenge: Caring for their loved ones with no support or respite. Along with support for carers themselves being unavailable at this time, vital assistance for the people they care for was put on pause, leaving a bigger gap in care provision to be filled and no help in sight. The pandemic has brought a unique set of challenges for unpaid carers, from additional financial concerns to shielding for loved ones’ health and being unable to buy basic necessities due to panic buying and a lack of online delivery slots. Without time at school, young carers have had no break from their caring situation, something Lilyrose has experienced over the last few months.
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the therapy classes was not continued throughout lockdown in order to keep frontline staff safe, Mike explains: “I understand the reason but the fact is that support has been withdrawn temporarily and we’ve had to cope without it.” Throughout the pandemic Mike has been frustrated with the lack of recognition unpaid carers have received, while being unable to take a break from his caring role. Mike believes education on what carers do is essential to creating change and increasing support, as carers themselves are unable to fight harder than they already do. “It’s education, the public are not educated that there are all these people out there,” stresses Mike. “They haven’t got the time, or the energy, or in a lot of cases the education to be able to protest effectively so something will be done, and without that there will be no advance in the care of family carers themselves. “We’re millions of individuals, we cannot all put the people we care for and love on the steps of parliament square and go marching though London.” Now, Mike is calling for more backing to enable carers to reach their full potential, he says: “I’d like to be able to do something worthwhile while I’m a carer but the limits on what I can earn and the hours I can do are so rigid that it gives me no opportunity.” Mike also has concerns for young carers whose friends might not understand their caring situation and often miss out on opportunities themselves.
ISOLATION
Lee and his younger sister Katie care for their mum, but Lee feels that he can’t talk to his friends about his home life. “I don’t really feel the need to talk to my friends about it and I just hide it from them,” explains Lee. “A lot of the time it’s hard to speak to friends about it because they don’t understand.” Attending young carers’ meet ups organised by MyTime Young Carers is
Support has been withdrawn temporarily and we’ve had to cope something Lee looks forward to and feels they help his mental health, he says: “People find it hard to understand my position so having someone in the same position means they’re more understanding. “It shows we’re not alone and other young people are in our situation, it’s supportive mentally.” Throughout lockdown Lee has felt more isolated without this respite, but like Lilyrose he has been able to take part in video calls. The charity has also supported his family through the food provision programme, providing easier access to food for young carers and minimising the need to rely on online shopping. “It can be difficult for us to get food cheap and regularly, the shops are on the opposite side of town,” reveals Lee. “It would definitely be more stressful having to worry about food and always getting a delivery.” Despite his appreciation for this support, Lee wants to see more assistance for young carers in isolated places, especially from a governmental level. “I don’t think there’s much more help we could get personally, but people in more isolated places should be prioritised,” stresses Lee. “Someone on a government level should be making sure they’re getting things like food and are well supported.” At present, the majority of support for carers and their families is still provided by charities and local organisations. Carers UK estimates that around another 6,000 people take on caring responsibilities every day, without better provision of guidance carers will continue to miss out on the recognition and support they deserve.
FOR MORE INFORMATION
To get information on support for carers contact Carers UK (www.carersuk.org), Carers Trust (www.carers.org) or speak to your local authority about respite (www.gov.uk).
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Coming out of
Lockdown
With lockdown restrictions easing it’s time to adapt to a life of social distancing and wearing face coverings in enclosed spaces. Three people share the challenges they face following the guidelines when living with a disability
World upside down Social distancing can be hard to adhere to at all times regardless of ability, but when living with blindness or visual impairment, social distancing can be nearly impossible. Maureen Goodall has retinitis pigmentosa, Adie-Pupil syndrome and Charles Bonnet syndrome, which leaves her with limited tunnel vision; for Maureen, a white cane user, following social distancing has been problematic. “I can’t see where people are,” explains Maureen. “I was forced onto the road at one point because they wouldn’t move out of my way.” This experience has left Maureen feeling anxious about leaving home, meaning a loss of independence. The Royal National Institute of Blind People (RNIB) created the World Upside Down campaign, calling on society to consider the challenges blind or partially sighted people may face. At present we
are navigating in a world that is becoming increasingly inaccessible for the disabled community. Maureen continues: “I’ve got neck pain now too. When I walk out of somewhere or I’m in a busy place I move my head around a lot so that I’m safe, other people are safe, and I’m keeping two metres away from people – it has just been very difficult. Now as we open up, a lot of shops have put out street furniture so you’ve got tables and chairs that I now have to negotiate and they’re a lot further apart than they used to be. “I hope that people can understand that we need to go outside too, we need to have our independence,” adds Maureen. “The biggest issue is maintaining distance. I really struggle to keep a track of where people are, especially now as it is starting to get busier. It is just so very difficult.”
I hope that people can understand that we need to go outside too, we need to have our independence
New rules Regular hand washing, social distancing, staying indoors, it can be hard to understand what you can and cannot do. For people with a learning disability the rules can be hard to adapt to, no matter how much you want to comply. Jack Marshall has a learning disability and has found it testing at times to understand what he should or should not be doing. “People often don’t understand what things are for, or what the reason is,” Jack explains. “We need people to sit down with us and explain. Things are changing very
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everyone is as safe as possible and to fast. The rules are changing very fast.” avoid any questioning on following the With businesses re-opening and guidelines, exemption products have being able to see friends and family, been introduced, but Jack admits that Jack hopes that people can take more this could be detrimental. time getting to understand the needs “Lanyards are a good idea if you of others and appreciate that some are comfortable about sharing your people may require additional help. disability, but it’s like wearing a label “We need to help people understand and people shouldn’t have so we aren’t seen as to do this if they don’t hostile or rule breakers, HAVE want to,” says Jack. “Why but just scared,” adds Jack. YOUR should disabled people “Just talk to us – we are SAY have to walk round with a human beings at the end How have you adapted to label stuck on them just so of the day.” easing lockdown people believe us?” In order to ensure rules? Share your experience with the #EnableCommunity @EnableMagazine
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spotlight
Behind the mask Masks have been a hot topic in recent weeks. We all understand the importance of face coverings, however, this is leaving almost 70,000 people in the UK living with hearing loss unable to communicate. “The feedback we have received from people who are hard of hearing is that they are lost because they can’t lip read,” explains Heidi Jobling, manager for Deaflink, a charity providing opportunities for D/deaf people to meet and learn. “Lip reading supplements your hearing aid. Then with BSL, your facial gestures are so important. I have tried to sign with people who are wearing masks and it is not easy. Facial expressions are a really big part of sign language.” In a bid to make face coverings more accessible, volunteers for Deaflink began creating masks that featured a clear panel over the mouth for people who rely on lip reading or BSL. Even so, communication barriers will persist. Heidi explains: “The windowless face masks are only going to work if we all wear the same coverings.” Heidi continues: “I’ve been having weekly video calls with one of our members who will ask me what she can and cannot do. We’re picking up a massive fear from people, they don’t want to go outside.”
I am exempt There are now exemption cards and products available to show you require additional help, patience or have a legitimate reason for not wearing a face covering. At the time of writing, face coverings or masks were mandatory in Scotland and England when in an enclosed environment such as public transport, shops, or takeaway shops when not sitting in for service. The UK Government (www.gov.uk) has since released PDF badges or cards that can be downloaded at home to show that you are exempt from wearing a face covering. The badges and cards can be used at your own discretion, it is a personal choice to use exemption cards and not necessary by law. If you are exempt from wearing a face covering note that you should not be routinely asked why you are not wearing a covering. FOR MORE INFORMATION The new rules are important, RNIB but there is no denying they can www.rnib.org.uk be problematic to follow for some Helpline: 0303 123 9999 members of our society. Now, more than ever before, it is imperative we Deaflink are kind and patient towards each www.deaflink.org.uk other and lend a helping hand when Learning Disability England we can.
www.learningdisabilityengland.org.uk Helpline: 0300 111 0444
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enable voices
Tim Rushby-Smith
A world upside down Emerging from lockdown people across the world have mastered their own coping strategies. Tim Rushby-Smith revels in the importance of mindfulness in a world turned on its head
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hen we eventually emerge squinting into the light of a new day, what will our isolation reflections be? When future generations ask ‘What did you do in the Great Lockdown, Daddy?’, will the answer be, ‘I sat around in my pants eating ice-cream from the tub and binge-watching zombie apocalypse shows.’? If I’m honest, I thought the end of days was going to be a bit more spectacular and, well, Biblical. Not that I was ever a fan. For starters, the four horsemen of the apocalypse, I mean, couldn’t one of them at least be in a wheelchair? And don’t get me started on the whole ‘stairway’ to heaven thing. What’s wrong with a ramp?
COPING
OVERCOME
At first, much of the frustration came
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from having to overcome a feeling that I should be able to do this stuff without effort, but once I accepted that I was back at the beginning in many ways, I was better able to start the process of re-programming. As we live in a world ill-suited to many of our needs, those of us with a disability often have to devote more conscious effort to the kinds of daily task that other people do without thought. There are times when I find this really frustrating, but not right now. As I rattle around my house and garden with my family, I am finding that a reminder of this level of mindfulness applied to the mundane activities of life can offer a welcome break from the anxieties of the world turned upside down.
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Mindfulness applied to the mundane activities of life can offer a welcome break
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I offer this by way of an insight into my current coping strategy. The isolation means an unending stream of bleak news delivered with the sort of shrieking urgency that creates a near-constant feeling of dread. One of the ways I deal with this is through gallows humour; a well-worn technique where we laugh at bad stuff in the hope that it will go away. But in recent days, I have become aware that I have adopted another (probably more useful) means of coping. I find myself concentrating on the little activities of daily life. Being mindful of these things is a familiar feeling; when I experienced a spinal cord injury I was suddenly thrown into a world where I had to re-learn everything, from sitting up to bladder and bowel function, skills that I had originally mastered so long ago that I had no memory of learning them.
Beyond The Break, by Darren Longbottom and Tim Rushby-Smith is published by Ebury Press in Australia and is available internationally as an eBook
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The importance of
kindness
Our mental health has been tested in ways it has never experienced before. With fears a mental health crisis is on the horizon it’s time we spoke about the elephant in the room and took some time to be kind to our mental wellbeing
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improved mental wellbeing.
BE KIND
“In the face of coronavirus, it felt important to remind ourselves what a difference we can all make to each other with acts of kindness,” explains the team at Mental Health Foundation, a charity working to support people to thrive by understanding, protecting and sustaining mental health. This year’s Mental Health Awareness Week, which took place virtually from 18 to 24 May, celebrated the simple acts of kindness that we can make in the community during the ongoing uncertainty that we all found ourselves in.
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Be kind to yourself and seek help when you need it
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s we manoeuvre throughout our lives there may be times we find challenging and without direction. The scale of those challenges and how it impacts people is individual, but the most recent coronavirus outbreak has had a knockon effect on our mental health, with concerns being raised on the impact lockdown will have on our mental health going forward. Easing out of lockdown has left many feeling exhilarated and others feeling overwhelmed, helpless and anxious. Being kind to yourself and your local community is imperative for
enable health members of the community, simple acts of kindness can have a significant impact on our own mental wellbeing. And now, more than ever before, we need to use this kindness to start talking about how our mental health may have been impacted by the pandemic.
YOUR MENTAL HEALTH
“It’s hard to generalise because everyone’s experience of the lockdown is different – some are finding it intolerable and others don’t want it to end. Furthermore, people’s experiences under lockdown have changed over time,” explains the Mental Health Foundation team. “It seems inevitable that for some people, the many stresses and isolation of lockdown, will have led to difficult mental health experiences, or exacerbated existing problems.” The mental toll of lockdown and the anxiety or fears surrounding illness, bereavement, isolation and beyond can be a significant step back for people with lived experience of mental health conditions. Plus, this additional time alone may have intensified underlying mental illness. Liz Whiteley is a psychotherapist and counsellor who specialises in disability counselling (lizwhiteleycounselling.com). During lockdown Liz was shielding and running online counselling sessions. “A lot of clients explain they feel their depression and anxiety from years ago have resurfaced, because there are no distractions,” Liz says. “Simply sitting with yourself can sometimes be the hardest thing to do, especially if you struggle with who you are.” Another factor that may cause issues around your mental health can be a sense of losing your identity or sense of self. “We wanted to start a conversation about the sort of society we want to see emerge from the pandemic – and what the government should do to support kindness,” the team continues. “That conversation seems all the more urgent, following the murder of George Floyd in the United States, and the pain, fury, fear and sadness it has sparked across the world.” Kindness can come in many different forms. Getting items from the local shops for a neighbour who is shielding to taking the time to be aware that the rules and guidelines may be challenging for some
IDENTITY
“When we went into lockdown our identity and sense of who we are revolves around what we do,” emphasises Liz. “Our jobs, our hobbies, our social networking: It really is impacted when you are removed from this structure, we lose who we are.” For some in the disabled community their identity may have flourished by spending more time with friends or family, or even the recognition from society of the challenges disabled people face on a daily basis when housebound. However, as we transition and reintegrate into society, there are
increasing concerns about a mental health crisis. Liz continues: “The understanding of each other has been built on the same needs and requirements. The fact that this is going to change again will leave a lot of people isolated and lonely, it’s going to cause a lot of anxiety for those people.” Going forward it is imperative that we are kind to ourselves and don’t feel pressured or guilty for challenging when we feel uncomfortable, overwhelmed or in need of support.
HONEST
“Everyone has been through it; everyone has struggled with mental health in their own way; if we’re not open and honest about how we’re feeling coming out of lockdown and how you were in lockdown it’s going to create more of a divide than there was before,” Liz explains. Being kind to others can come more naturally than being kind to ourselves. Lockdown may have knocked your confidence, reignited feelings of depression or anxiety, but in our ‘new’ world it’s imperative we speak openly about our mental health. The team at the Mental Health Foundation adds: “It can also be helpful to remind ourselves that we are as important and worthy of care and kindness as every other person.” Positive and negative, we have entered a new world, in this new world we need to take the chance to celebrate who we are. Liz fervently advises: “Be kind to yourself and seek help when you need it. Look at what you want to achieve now. We are in a new normal, here we can create the normal we want; we don’t have to fall into the categories that people expect of us.” By taking the time to be kind to ourselves, as well as being more patient with others, we can take this opportunity to reassess our thinking around mental health and how we want to be treated as we entre and adapt to the new normal.
FOR MORE INFORMATION
Guidance on managing your mental health is available from Mental Health Foundation (www.mentalhealth.org.uk), Mind (www.mind.org.uk), and CALM (www.thecalmzone.net). Samaritans (www.samaritans.org) can help during a crisis, call 116 123.
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enable voices
Gail Porter
Life in lockdown The last four months have certainly had highs and lows. Our new columnist, TV presenter, campaigner and mental health advocate, Gail Porter writes about her life in lockdown
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ell, this has been an odd year hasn’t it? I’m not entirely sure what year it actually is. I put the news on in the morning just to check the date. My father passed away in Spain one week before lockdown. It was unexpected and very sudden. Dad never did things by half. It knocked me for six, and is taking a long time to process. Mind you, I have told him a lot of naughty things I did as a teenager. Feels odd chatting to his box, but he can’t tell me off (!) and I really feel he is here with me. Anyway, that was the beginning of my lockdown.
CARE
I have spent so much time thinking of people who have been in lockdown on their own. People who are unable to get out for a walk. People who are
lonely. People who may be ashamed to ask for help, and of course all the wonderful carers out there that put other people before themselves. They are true heroes. I have worn a mask since I returned from Spain. I have stayed in, apart from buying essentials. But a lot of people can’t even do that due to disabilities, anxiety or general fear of this pandemic – no-one seems to tell us exactly what is really going on.
OPEN UP
However, I think we can all take something positive from this experience. We can appreciate all our fabulous friends; the services from the NHS, Mind, to the Samaritans. I have actually been asked to become a UK Ambassador for the Samaritans – an absolute honour, which I accepted instantly. The Samaritans helped me in
so many ways. I remember being alone, struggling with debt, lonely and cutting out all my friends due to embarrassment. I picked up the phone so many times and hung up just as much. There was one day that I couldn’t see the end to my struggles, pain, anxiety, debt, fear of leaving my flat. That was the day I called and didn’t hang up. Just to talk to a stranger that asks no questions, doesn’t ask your name, just listens: It really meant so much. I’ve been homeless, bald, broke, sectioned with mental health problems, but I’m still here. Remember, however low you feel, there is always someone to talk to. This is a very tough time for everyone. Even so, lockdown has been tough, but a good time to reflect. We are all in this together and we will get through this. And thank you to all the carers, NHS staff, Samaritans volunteers, or any other stranger that listens. Never be lonely; never worry that you are bothering anyone by sharing your worries. You would be amazed how many people want to talk and help. Sending love to all.
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Lockdown has been tough, but a good time to reflect
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Read Gail’s extended column available on the website, www.enablemagazine.co.uk
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21/01/2019 12:07:12
Time for
improved
Healthcare Throughout the coronavirus pandemic, a lack in provision of care for people with a learning disability has brought attention to the need for reform in the healthcare system. It is evident change needs to happen
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etween 10 April and 15 May 2020, the number of people with a learning disability who died and were receiving care from support services in England increased by 134 per cent compared to 2019, according to the Care Quality Commission. Of these 386 deaths, 206 were as a result of suspected or confirmed COVID-19. This is just one figure that has highlighted inequalities in care over the first half of the year, leading to greater calls for equal access and change.
EQUAL ACCESS
“People with a learning disability have a right to equal access to healthcare. However, what we’re seeing during the COVID-19 crisis is far from it,” reveals Dan Scorer, head of policy at Mencap. “Some people have reported an excellent standard of care and engagement from their GP, while others have experienced serious issues – including instances of very concerning practices from some GPs.” Mencap have worked tirelessly throughout the pandemic to provide support to people with a learning disability, their families and carers, alongside continuing to campaign for better practices in healthcare. Some people’s experiences have caused high levels of concern, Dan explains: “We have seen letters discouraging people with a learning disability from going to hospital if they fell ill because they were unlikely to be prioritised for medical treatment,
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access
and in extreme circumstances unlawful Do Not Resuscitate notices have been placed on people’s files. “Despite NHS England decrying blanket decision making, more needs to be done to ensure disabled people can be confident that they will be able to access equal care to everyone else.” Brendan, who has cerebral palsy, has worked with Harrow Mencap and Mencap for more than two years, campaigning for changes in the healthcare system, he says: “I think it’s so important to speak up for other people who don’t have the opportunity to speak up at all, and it’s important to hear what other people are saying because at the end of the day not a lot of people would ask if you are OK.” Throughout the coronavirus pandemic, Brendan has felt people with a learning disability haven’t been represented or highlighted enough. “The government have not highlighted the health of people who have a learning disability, they have highlighted people who are vulnerable,” emphasises Brendan. “Not everyone who has got a learning disability is vulnerable, so why don’t they find a way to protect everyone.”
COMMUNICATION
Often, the way information about coronavirus has been presented has created a barrier for people with a learning disability when accessing services like their GP, but this has translated into physical barriers, too. Robert*, who is supported by
More needs to be done to ensure disabled people can be confident that they will be able to access equal care Bexley Mencap and uses a wheelchair, regularly attends his GP for leg ulcers to be dressed, but due to measures in place to prevent the spread of coronavirus, he had to be moved to a different leg clinic. “The doctors have been good with telephone support; however, it has been more challenging if I needed to go and see them due to the oneway system they have in place, which wheelchairs can’t access,” explains Robert. “This is why my appointment for my legs was moved to another clinic.” When Robert’s car broke, he couldn’t get out of his flat to attend his appointments. This meant the district nurse had to arrange home visits until repairs were complete, meaning Robert was seeing someone new for the second time during the pandemic, he says: “It’s important for me to see familiar people who I know, I find this a lot easier and that has been hard for me seeing different people all the time.”
enable health
While remote consultations and at-home appointments can be helpful, they can also put people at higher risk of the virus and can sometimes cause barriers to care. “While we’ve heard about some innovative use of remote consultations for people with a learning disability, clear guidance is needed to adjust or avoid these methods where they become a barrier to accessing care,” emphasises Dan.
*NAMES HAVE BEEN CHANGED TO PROTECT IDENTITIES
INCREASED PROVISION
Clear guidance is one thing Brendan would like to see throughout all healthcare settings. “The communication with my GP is good for me,” reveals Brendan. “I go to the GP on a regular basis and they give me a chance to say how I move, to ask if I’m OK, but then because I have my own support worker it’s easier.” For himself and other people with a learning disability, Brendan wants to see an increase in clear communication from GPs and other healthcare providers. “I would like to see more support in a sense of more communication, the way you give information to someone,” explains Brendan. “I think more learning disability nurses and more easy read information would help because it’s difficult to read the regular information to decide what is wrong.”
More easy read information and training for GPs on caring for people with a learning disability is necessary to improve care provision. “We are calling on NHS England to issue guidance to GPs on how to recognise and support patients who may have had an unlawful DNR placed on them during the pandemic as well as guidance on other emerging issues: Including a need for support for those managing long term health conditions, such as epilepsy, who may have missed out on routine care,” says Dan. “We have heard about examples where a GP has missed that somebody was unwell because they put the person’s symptoms down to the person’s learning disability,” he adds. “This is not a new problem, but we believe it has been exacerbated by remote consultations.” As more routine care is resumed, an increase in the quality of healthcare provided for people with a learning disability is more important than ever.
FOR MORE INFORMATION
If you have a learning disability, or provide support to someone who does, and need information and advice, contact the Mencap (www.mencap.org.uk) helpline on 0808 808 1111.
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enable health
Over the hurdle to
Cervical screening Cervical screening is an important test that shouldn’t go ignored. However, people living with a disability are still facing barriers to testing. With continued awareness and campaigning, now is the time to reclaim your cervical screening
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any women living with physical or learning disabilities are struggling to access a cervical screening. The free test from the NHS is critical in helping to prevent Jo Moss cervical cancer, checking for the high-risk human papillomavirus (HPV) – yet many fail to attend their test, or, in some instances, are turned away. From limited equipment to outdated information or advice on who should have access to a cervical screening, unnecessary blocks are still in place.
BARRIERS
“I was just abandoned and it was assumed I did not need a test because I wasn’t ‘high risk’,” explains Jo Moss who went eight years between receiving a cervical screening. Living
with chronic pain and bedbound due to her illness, Jo faced years of campaigning and continued contact with her GP before being able to access a test. Jo continues: “For years my needs weren’t even considered, let alone met. And sadly, even after I was successful in getting my test done at home, I was advised this was a one off due to my exceptional circumstances.” Obstacles to testing are unique to each case, but can be a significant factor in people not receiving a vital, free test that last no more than two minutes. “There are specific barriers to accessing a screening that someone with a disability might face, and then there are barriers that occur for everyone; so, it can really be a double whammy for people,” adds Imogen Pinnell, health information manager for Jo’s Cervical Cancer Trust.
DISMISSED
“For people with a learning disability there is a real chance they may be dismissed as not needing the test,” Imogen continues. “Often what might be cited is that they won’t need the test because they are not sexually active, which isn’t really a thing anyway. Whether or not you have a cervical screening shouldn’t be based on if you’re sexually active.” Improved education and awareness of simple adjustments are imperative to ensure people are not left behind. This is what Jo’s Cervical Cancer Trust are campaigning for. After campaigning to receive her cervical screening it was clear only minor adjustments were necessary to provide Jo with the test. As Jo has a hospital bed in her home the only changes necessary included raising Jo’s bed slightly and the nurse wearing a head torch. There should
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be no limitations to people receiving a lifesaving test. “Cervical screening is a choice and it should be a choice that is open to everyone,” emphasises Imogen. “This is not a decision that should be provided for you and decided if it is accessible to you.”
AT HOME
Continually campaigning and advocating for change, Jo’s Cervical Cancer Trust works closely with MPs to ensure people are not left behind. As we adapt to an ever-changing world, it is hoped that the current coronavirus pandemic will push forward the potential for at home cervical screenings to be made available. Imogen explains: “We’re really strong advocates for self-sampling, so taking a sample at home. We really think this could be a huge game changer for people who face any barriers towards screening, and it could also be a game changer for people with a learning disability.” Coronavirus has highlighted the efficiency that our health system is capable of and Jo’s Cervical Cancer Trust hope to use this moment to push through home cervical testing. This change could break down barriers and ensure those who should get tested, can get tested. Imogen adds: “If anyone is shielding we understand that this situation may be a little bit different. If you are shielding, or you have been shielding and you are particularly worried about your risk, it’s a good idea to speak to either a healthcare professional or with your nurse or GP. This is just to assess any risks and make you feel completely comfortable.”
“Cervical screening is a choice and it should be a choice that is open to everyone
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BOOK A TEST
If your cervical screening was cancelled due to COVID-19, you can now call your GP practice to arrange or re-book your test
WHAT CAN I EXPECT? When you’re due to receive cervical screening, a letter will be sent to your home inviting you to make an appointment at your local GP surgery or sexual health clinic.
THE TEST
“You will be called into a private room with your nurse or sample taker, you will then be asked if you would like the door locked or unlocked during the test,” explains Imogen. “You will have a private space to undress – or you could wear a skirt or dress for extra coverage as you wouldn’t need to take this off.” A speculum is the main tool used during your cervical screening. During the test, it will be gently inserted into your vagina and gently opened, to allow your nurse to have a clear view of your cervix. A soft brush will then be used to take a
FOR MORE INFORMATION
quick sample of cells, this may feel a bit strange, but should not be painful. Imogen continues: “Remember this is your test and you’re in control. At any point, if you find anything uncomfortable it is really important to tell your sample taker so they can stop. This part usually takes less than a minute, then your sample will be sent off to the lab for testing.”
RESULTS
Your results will be sent to your home, and if there are any concerns you may be asked to contact your GP. Keep in mind: Intervals and age range for people being called for their cervical screening varies between Scotland, Wales and England, but if at any stage you are concerned contact Jo’s Cervical Cancer Trust or visit the NHS (www.nhs.uk) for information.
Advice and information on accessing a cervical screening is available from Jo’s Cervical Cancer Trust (www.jostrust.org.uk) on their helpline, 0808 802 8000.
Reconnecting with people Here at Fittleworth we want you to know that you’re not alone. We talk to over 2,000 clients every day and understand how challenging it can be to manage a long-term medical condition.
Our new podcast series is all about overcoming loneliness. These open, honest and informal conversations are hosted by BAFTA award-winning broadcaster, vocal coach and Crohn’s & Colitis UK ambassador, Carrie Grant. For this new series, we join forces with older people’s charity, Independent Age, to address the common issue of isolation, and how to overcome it by reconnecting with people.
Episode 1 explores what loneliness is and how we can find ourselves isolated for many different reasons. Episode 2 speaks to Brian and Rachel about their experiences of loneliness and ways that they have worked through these feelings. Episode 3 offers practical advice about how you can reconnect with others and take those first steps to feeling less isolated, with Julie Bennett, Senior National Wellbeing Manager at Independent Age.
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ople
On a
journey recovery of
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s coronavirus dominated headlines around the world in March, Caroline Coster and her husband, Will, decided to quarantine after they both experienced symptoms. After a few weeks Will started to get better, but Caroline’s symptoms worsened. Caroline was diagnosed with a chest infection, but after no improvement on antibiotics her long-time GP advised Caroline to get to the emergency room.
JOURNEY
Caroline arrived at the hospital unaware of how her life was about to change, she remembers: “I had an emotional farewell with my husband in the waiting room and was taken through to a treatment area, I literally can’t remember anything more than that.” Caroline was rushed to critical care where she remained for a month in and out of a coma. When she awoke, Caroline had little memory of what had happened in the last four weeks. “I was completely shocked by this and still am that I had missed a whole month,” explains Caroline. “At one point I looked down at my hands and they were completely black, they looked like an Egyptian mummy’s. “That’s when I found out they would have to amputate my hands and my feet because in the coma I developed sepsis.” In order to keep vital organs alive, Caroline’s blood had been diverted away from her extremities. As a result, her hands and feet had to be amputated and the tip of her tongue died and fell off.
Caroline in hospital
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really upset by it, but I can honestly say I wasn’t, and I can only put that down to the support I’ve had,” admits Caroline. While Caroline has continually tried to find positives in her new situation, she has also had tough days, she explains: “Obviously I have my down times. I’ve had my days of crying, usually through frustration that I can’t do things for myself, but actually overall, I’m completely at peace with it. “My family came to say goodbye to me twice in the coma so I just know how lucky I am to be alive – I’m just determined to make the most of all that I have ahead of me.” Caroline’s amputations were lifesaving, allowing her to continue to spend time with her two daughters, husband and dog, but she has managed to find other positives, too. “There’s some slightly silly ones; I was due to have an operation on my wrist because I had terrible wrist arthritis, it’s no longer a problem,” laughs Caroline.
RECOVERY
POSITIVITY
Once she found out about the amputations Caroline made peace with the idea, but credits the support from hospital staff and family for her positive reaction. “Everyone expected me to be
When life changes suddenly it can be difficult to adapt, but a positive mindset can help the journey of recovery. We speak to quadruple amputee and sepsis survivor Caroline Coster about the power of community after acquiring a disability
With dog, Duke
A teacher by trade, Caroline has received thousands of messages of support from current pupils and those she taught over 20 years ago. As Will struggled to keep everyone updated, Caroline and her family decided to start a Facebook page to document her experience: A Journey of Recovery. “I’ve always been someone who’s shied away from attention so I’ve found that quite hard; and people saying how wonderful and inspirational I am,” reveals Caroline. “I don’t feel inspirational, I just feel blessed.” At the beginning of her journey Caroline was admitted to Bedford Hospital where she learnt to roll over, sit up, pick things up with her stumps and transfer from bed to chair. Now, Caroline has been transferred to
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During leave from hospital
Once I get home I’m hoping to live the best life I can like everyone does: I want to be independent In rehab
Roehampton at Queen Mary’s Hospital for rehabilitation where she will remain until she goes home. “The real thing I’m looking forward to is being able to stand up and walk,” says Caroline. “Once I get home I’m hoping to live the best life I can like everyone does: I want to be independent; I’ve got plans to register our dog Duke as a Pets as Therapy dog; I’ve already said to the hospital that I’ll be going back there to volunteer.” Before contracting coronavirus, volunteering and charity work were Caroline before with her daughters
a big part of Caroline’s life. She has previously raised around £40,000 to help women in Kenya set up their own businesses and also upcycles old jeans into bags and other creations for charity sales.
CHANGING PERCEPTIONS Caroline plans to continue with her charity work and has been reassured that she will be able to sew again, an important part of her life. In order to make the most of her recovery Caroline is taking early
retirement, but will fill her time trying to change perceptions of wheelchair users and amputees. She will also be visiting the school she worked in to teach pupils about diversity. “Most of them already know me as Mrs Coster, so it’ll help them to see people in wheelchairs are normal people, too” explains Caroline. “I’m intending almost to advertise my amputations,” she continues. “I want my stumps and my metal hands to draw attention to me so I can have those conversations about what happened and about who I am.” Caroline’s mission to raise awareness will also work to teach people about the dangers of sepsis, an infection that kills more than 36,000 people in the UK every year. “If I had been more aware of sepsis myself and known the dangers of it I would have shouted more and probably went into hospital quicker,” says Caroline. “To be aware of the dangers of sepsis is so important for the general public, and to be aware of the dangers of COVID, too.” Caroline’s journey of recovery is far from over, but with a positive mindset and a wealth of support she hopes to rebuild her life and help others with her story.
FOR MORE INFORMATION
Learn all about sepsis and get support from The UK Sepsis Trust (sepsistrust.org).
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ADVANCED TECHNOLOGY TO KEEP YOU ON THE MOVE
THERA-Trainer EXERCISE BIKES ACTIVE / PASSIVE
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The need for
REFUGE
D
omestic abuse is a largely hidden crime, occurring primarily at home and affecting millions of people in the UK every year, but people with a disability can be at an increased risk. Understanding the signs of domestic abuse is key to identifying a dangerous situation. Abuse isn’t always physical, it is a pattern of controlling, threatening and coercive behaviour that can also be emotional, economic, psychological or sexual. Isolation is already a tool used by many perpetrators to control sufferers of domestic abuse, but this has been intensified by lockdown as people are forced to stay inside with their abusers for prolonged periods of time. Andrew* is partially sighted and is a survivor of domestic abuse. In his previous marriage he was subject to
spotlight Domestic abuse victims are at the forefront of conversations on those who need support during the coronavirus pandemic, but for disabled people it can be harder to access support. Emma Storr investigates
verbal, emotional and physical abuse, you, and those restrictions are eased for often targeted at his disability. This the public, you may still not be able to including withholding visual aids and get out and away from them because information to ensure he was reliant on the world is a different and more hostile his abuser. environment to you,” stresses “There’s a certain Andrew. amount of control they’re Andrew’s concerns are withholding,” recalls echoed by Mark Brooks, To use the Silent Andrew. “It was almost chairman of ManKind Solutions process like part of the abuse Initiative (www.mankind. for help in an was trying to keep me org.uk), a charity helping emergency dial 999 dependent so that she men escape domestic then press 55 could tell everybody what abuse. a martyr she was.” “There’s no respite from As a survivor of domestic being locked in with the person abuse, Andrew is now concerned who’s committing the domestic about the isolation disabled victims abuse against you,” worries Mark. “Our have faced during lockdown. concern is not just the level of violence that they will be enduring, but also the intensification of the psychological and LOCKED IN emotional abuse that they will be going “If you have been self-isolating or through.” shielding with somebody who is abusing
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spotlight While being urged to stay at home, victims of domestic abuse are stuck with their perpetrator and unable to access help in their local community. This has been exacerbated for disabled people who are completely cut off from their normal network of friends, loved ones and carers. Saliha, who is blind, is a survivor of honour-based domestic abuse where every aspect of her day-to-day life was controlled by her community. “They are more isolated because they are not able to go out and get relief away from their perpetrators,” expresses Saliha. “It’s not just a physical entrapment, it’s also an emotional entrapment because as we know for a lot of women including women with disabilities, they are physiologically tormented and there are taunts around their disability.”
EQUAL ACCESS
Over the last few months there has been an increased focus on domestic abuse, including domestic abuse towards disabled people, but in order to provide adequate support there has to be equal access to services and refuges. Saliha left her perpetrators three times, but returned on her first two attempts due to this lack of support. “On my first attempt I went to a woman’s refuge when I was 16 and I ended up returning home because
TRAINING
We need more education about how anybody can be a victim of domestic abuse I found that there wasn’t support available for disabled survivors,” remembers Saliha. “There was a lack of awareness around honour-based abuse and disability, then the second time around I also left and returned because of the lack of support.” Without a change in the way support services are offered, disabled people will continue to have no escape from abusive situations. “Whatever we do now it must be embedded in from the start when we’re making changes to services,” stresses Andrew. “We must think about how we make this accessible to disabled people, and we need to build it in from the outset.” A key conversation throughout the pandemic has followed the need for diversity and equality in all sectors, and this should include domestic abuse.
“We need that to apply to domestic abuse, as much as any other area,” explains Mark. “It’s always really important that we take a 360-degree view of this. “We need more education about how anybody can be a victim of domestic abuse, and that there are no boundaries with regards to race, age, sexuality or gender.” In order to remove these barriers, domestic abuse campaigns need to highlight people from all backgrounds and minorities, but the public’s perception of domestic abuse and disability also needs to change. “Discussions I’ve heard around the domestic abuse bill so far take too narrow a view of what can happen to disabled people and how they get abused,” explains Andrew. “Yes, it can happen in terms of the caring role, but it is more than that.” Education and disability awareness training for domestic abuse support services as we move forward is vital in order to save lives and provide a safe haven for survivors.
FINDING SUPPORT
For people who are currently experiencing domestic abuse or want to help a loved one, there is support available in an emergency and more generally. “Even though it might not seem like it at the moment, there is a light at the end of the tunnel,” reassures Saliha. The police, national helplines and local support organisations are there to offer help to victims of domestic abuse. If you don’t currently have access to a phone or internet device, ask a trusted friend to contact a helpline for you. FOR SUPPORT CONTACT:
ManKind Initiative 01823 3342 44 www.mankind.org.uk Refuge www.refuge.org.uk Women’s Aid www.womensaid.org.uk
The long-read version of this feature is available online, www.enablemagazine.co.uk 36 enablemagazine.co.uk
*NAMES CHANGED TO PROTECT IDENTITIES
The National Domestic Abuse Helpline 0800 2000 247 www.nationaldahelpline.org.uk
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Dementia care ON PAUSE
Living with dementia at any time presents everyday challenges for that person and those around them, but coronavirus is making daily life harder for people with dementia
T
hroughout the coronavirus pandemic not being able to leave home, the temporary shutdown of support groups, and family members being unable to visit loved ones in care homes has led to a wealth of concerns for people living with dementia. George was diagnosed with mixed dementia six years ago and co-chairs the Dementia UK’s Lived Experience Advisory Panel, he explains: “In the last five to six years I have been doing a lot of travelling around the country, giving talks, attending meetings, basically being an activist to try and improve the support for people living with dementia. “I have bad days here and there where I just get confused, I get what we call dementia fog.”
CUT OFF
For George, lockdown has provided the opportunity to slow down and take a break, but it has also left him feeling cut off from other people. “It’s actually been a welcome, refreshing experience,” explains George. “Having said that, I do feel isolated. There are plenty of people around the country who have found it more difficult and who have found it very isolating.” Many dementia services have been restricted or reduced during COVID-19, this has led to an increase in calls to Dementia UK’s Admiral Nurse Dementia Helpline which provides support and advice for people living with dementia and their loved ones. “It could be people enquiring about anything from a little thing like not
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knowing about Admiral Nurses, or what the services are in their area, to much more complex emotional, psychological, or physical symptom control issues,” explains Dr Sarah Russell, a professional and practice development facilitator at Dementia UK. “I think because [the Dementia UK helpline] is manned by Admiral Nurses, what that means is that while they’re having that conversation, they are assessing and thinking what can we do next to help the caller.”
INCREASED HELP
Sarah’s main concerns surround people being unable to leave the home and how this will affect both physical and mental health. “Physical exercise is a really good way to distract and divert people and keep them occupied; by staying confined to the house, we’re actually putting people and their families at risk,” emphasises Sarah. “It’s causing people harm by not being able to have their usual physical activity as well as that interaction with the world around them.” “To enable the emotional, mental and physical well-being of a person living with dementia has been really tricky in our society anyway, but I think COVID-19 has highlighted that further,” she adds. The pandemic has seen day centres and memory clinics stop as the government tries to balance the public health agenda with the potential negative effects of social isolation and physical distancing. A dramatic decline in some people’s
conditions has highlighted the need for a more consistent support system throughout the country. This includes an increased number of Admiral Nurses: Currently there are less than 300 Admiral Nurses across the UK. “I don’t need a great deal of support, but it would be nice to have some available on the occasions when I do feel it,” admits George. “Everybody is different, but we all need a standard system of support. “That standard model of care should include dementia navigators for everybody, when and where you need them, and a consistent provision of Admiral Nurses everywhere.”
FAMILY
Throughout lockdown, concerns have arisen around the increased physical and emotional deterioration of people with dementia living in care homes. This has, in part, been due to family members
enable care
Everybody is different, but we all need a standard system of support
being unable to visit. “People with dementia are already at risk of dying from COVID-19 and if you’re not having your normal interaction with others, your cognitive and physical function can decline further,” reveals Sarah. Family visitors are essential to preventing this decline, she says: “Family members are not just social visitors, they are an essential part of care.” “They bring particular nuances and understanding of people living with dementia, their everyday routines and their everyday behaviours. They bring intimate knowledge of what somebody is like, what they’re like when things are going wrong and what makes them happier as well.”
TECHNOLOGY
Balancing the importance of public health with the wellbeing of dementia patients has been one of the biggest
challenges in care homes during the pandemic. This has led to an explosion of people using technology like video calls to help families stay connected. “One of the things that’s been going through my mind is: What do we need to return to doing, which was stopped during COVID-19? What do we need to carry on doing, that we were doing during COVID-19? And what do we need to do differently after COVID-19?” asks Sarah. “One of the things is to carry on harnessing technology.” For both Sarah and George, the increased use of technology has been a silver lining to the coronavirus pandemic and lockdown, with George able to connect with people and develop stronger friendships via weekly video meetings with his network. Along with keeping friends and family in touch, technology has meant that assessments and consultations have advanced in some areas.
“With technology you can coordinate talking to health and social care colleagues to see what do we need to do for different people and how we can help them,” explains Sarah. “We can talk on the phone or via a video consultation, so that we can harness our collective brain power if you like.” It is hoped that the positive use of technology will continue after the pandemic, but digital exclusion should also be considered; not everyone can or likes to use technology. The challenges that come with living with dementia have been brought to light, but it is evident more still needs to happen to ensure people are supported.
FOR MORE INFORMATION
Find dementia-specific guidance on coronavirus from Dementia UK (www.dementiauk.org) and Alzheimer’s Society (www.alzheimers.org.uk).
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PODCASTS
Tuning in Podcasts have grown in popularity in recent years, and with shows featuring disabled hosts, disability specific themes, all the way to some good oldfashioned comedy there’s sure to be a podcast for your every mood
Reality THE MOTH
themoth.org We all have a story to tell, and The Moth lets people share their story. Recorded at The Moth live events participants have the opportunity to go on stage to tell a true story in their life that connects with the night’s theme. Funny and heartwarming, The Moth shows the power of human connection through the art of storytelling.
YOU’RE WRONG ABOUT
Rewrite the wrongs in history you’ve always thought were true with hosts Michael Hobbs and Sarah Marshall. Informative, engaging and sure to make you say, ‘no way’ several times an episode, You’re Wrong About decodes the most newsworthy events over the decades. The truth behind the O.J. Simpson trial to the misconceptions of Yoko Ono and John Lennon – it’s time to reimagine reality.
THIS PODCAST WILL KILL YOU
thispodcastwillkillyou.com There’s no denying we’ve had an overload of coronavirus information and even fearmongering. Need more? Looking for the facts? This Podcast Will Kill You is the educational take on medical epidemics you never knew you needed. Hosts Erin Welsh and Erin Allman Updyke are both disease ecologists (so you’re guaranteed medical facts with no added fiction) and their Anatomy of a Pandemic covers everything from mental health to finding a vaccine, and explains just what coronavirus is. Plus, each episode comes complete with its own quaran-tini recipe.
Disabled voices BBC OUCH
www.bbc.co.uk/sounds Celebrity interviews to candid discussions on life with a disability or the experiences of people across the UK getting candid about life with a disability, BBC Ouch prides itself on being the place where the real disability talk happens. The Cabin Fever Podcast is a must listen if you’re interested in knowing how others adapted to life in, and out, of lockdown.
DISABILITY AFTER DARK
www.andrewgurza.com/podcast Bringing the hidden disability topics into the bright, bright light, host Andrew Gurza discusses disability, sexuality, and everything in between – no topic is off limits. With 257 episodes, Andrew and his guests are sure to become your closest friends in no time.
THE DISABILITY DOWNLOAD the-disability-download.simplecast.com Brought to you by the team at Leonard Cheshire, The Disability Download is working to open up the conversation on disability. Covering hidden disabilities in the media to taking a deep dive into disability hate crime, it’s time to download the latest disability discussions.
Equality THE ACAS PODCAST
Manoeuvring the workplace can be daunting, especially if you identify in a minority group. Information is power and this is where The Acas Podcast comes in. Brought to you directly from the workplace experts, this podcast is targeted towards employers and employees. Episodes cover the critical Black Lives Matter movement to juggling caring responsibilities and work, so you’re clued up on your employment rights.
EQUALS
It’s time to fight inequality. EQUALS has guest appearances from activists, campaigners, politicians and more working to create a fairer and more inclusive society. Each episode is guaranteed to leave you feeling invigorated and with a sense of hope on how we can all help change the world.
Most podcasts are available for free on Spotify, Apple Podcasts, Stitcher, or Google Play. enablemagazine.co.uk
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UNDERSTANDING
Brain injury IN CHILDREN
Acquiring a brain injury can affect people in many different ways. Natalie Martlew and Katy Rodgers from The Children’s Trust talk about concussion and the short and longterm impact it can have on children and families
E
ach year, 1.4 million people attend emergency departments (ED) in England and Wales with a recent head injury; between 33 per cent and 50 per cent of these are children aged 15 years or younger (NICE guidelines 2014). Of the large number of head injury presentations to ED, 90 per cent of injuries are considered to be mild.
AWARENESS
Concussions, or a mild traumatic brain injury (mTBI), can be the result of a blow to the head, or an instant that causes the brain to move back and forth in different directions too quickly.
Regular causes are falls, sports injuries and road traffic collisions. Evidence suggests that children and in particular teenagers are more likely to experience a concussion than adults. Younger children are at an increased risk of concussion because their heads are disproportionately larger compared to the rest of their bodies, making them prone to falling. There is no common term currently being used to describe such injuries and the terms concussion and mTBI are used interchangeably. The term concussion may be used because it is less alarming; with the intent of implying that the injury has no significant long-term health
consequences. This is true for the majority of those who sustain a concussion, however, a minority of individuals (up to a third) report symptoms persisting beyond six months.
INDICATORS
Symptoms of concussion include headaches, difficulty with concentration and memory and ‘brain tiredness’ – commonly referred to as cognitive fatigue. Sometimes there are no immediate signs of concussion. However, symptoms can occasionally appear a few hours or days after the injury. Therefore it is important to ensure
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RECOVERY
Carefully planning a child’s return to school and activity is essential to optimise brain recovery. Reintegration into activities, both academically and socially, before the brain has had time to recover can increase the risk of sustaining another concussion and delay fully recovering from the original injury. Whilst the majority of children and young people recover within six weeks, some go on to develop what is often referred to as post-concussion syndrome (PCS). PCS can cause difficulties to persist for much longer. This has the potential to cause a significant impact for the child and their family, and although symptoms do eventually resolve, on-going symptoms can affect mood, behaviour and family dynamics. Persistent fatigue or headaches can also make it harder for children to
“
The potential effects of concussion are often poorly understood and commonly referred to as an invisible injury
“
that all adults caring for a child who may have obtained a head injury are aware of recent accidents; and to look out for any warning signs in the days following the accident.
transition back to full-time education. This could then have financial implications if families are unable to go to work alongside having an effect on the child’s academic achievement and social integration.
IMPACT
The potential effects of concussion are often poorly understood and commonly referred to as an invisible injury. This is due to symptoms being difficult to spot; often leading to support not being implemented thus resulting in reduced
participation at home, school and in the community. Furthermore, families are often not given adequate information regarding the possible severity of concussion and are then not prepared – or able – to manage the severity of symptoms that could occur. Failing to address symptoms early may have a knock on effect on a child’s social and emotional wellbeing, in turn causing an increased risk of social isolation, depression and poor academic achievement. It is often thought that this lack of understanding becomes a major contributing factor to the length of time it takes to recover, therefore it is imperative early intervention and support is in place to aide in fast, effective recovery. Further information and guidance about concussion can be downloaded from The Children’s Trust’s Brain Injury Hub (www.braininjuryhub.co.uk), where you can find vital tools, including their ‘Concussion in children and young people: a guide for families, teachers and sports coaches’ guide.
The Children’s Trust Brain Injury Community Service (BICS) The Children’s Trust Brain Injury Community Service (BICS) provides specialist goal-orientated neurorehabilitation delivered in the child’s environment, at home, in school, or a combination of both. With teams based in four of the UK’s major hospitals, and a dedicated multidisciplinary team based at their national specialist centre in Surrey, the service supports children from right across the UK. How does The Children’s Trust Brain Injury Community Service work? A child can be referred at any point following their injury or illness. For some children, this may be some years after the initial event. The following stages of the service are offered free of charge: 1. CLINICAL SCREENING A member of the BICS clinical team will make contact with the child/family to
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complete a detailed phone interview to identify unmet and unrecognised needs 2. VISITS AND TELEPHONE CALLS Following the initial screening, the clinical specialist may visit the child and their family, either at home or in school. BICS will liaise with the child’s professional network including education. 3. ONWARD REFERRAL If the child has needs that require additional support, the clinical specialist will make the necessary onward referral into the child’s local community services, or to the specialist multidisciplinary team at The Children’s Trust. 4. LONG TERM REGISTER A member of the BICS clinical team will make contact with the child and family at key educational transition points to
support with emerging needs If the child is referred into the specialist multidisciplinary team, there are a number of community-based neurorehabilitation skills packages available (subject to funding). For more information about the skills packages offered or to find out more about the service in general, please get in touch with the team by calling 01737 365 864 or visit www.thechildrenstrust.org.uk/bics
Do you know a child who has had a concussion, head injury or other type of acquired brain injury? If yes, we’re on hand to provide the support they may need. Children with acquired brain injury can face difficulties with: • learning new information • concentration and memory • understanding and using language effectively • developing independence skills appropriate to their age • making and keeping friends • staying safe • controlling emotions and impulses • managing fatigue • getting enough sleep. We provide a pathway for children who may be experiencing these difficulties. This includes an initial clinical screening, visits and telephone calls in the child’s home or school environment and then onward referral into local community services or to our specialist multidisciplinary team.
Looking for support for a child with acquired brain injury? For more information or to refer a child into our services: Visit www.thechildrenstrust.org.uk/BICS Call us on 01737 365 864 Email us at bics@thechildrenstrust.org.uk
The Children’s Trust, Tadworth Court, Tadworth, Surrey, KT20 5RU TCT_776. Apr 2020. V1. Registered charity number 288018.
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VIRTUAL
DAYS OUT From holiday destinations to classic theatre shows, planning a virtual day out is the perfect activity to do from the comfort of home
HOLIDAYS An exotic getaway might not be an option this year, but that shouldn’t stop you from visiting destinations on your bucket list. Explore places like New York, Vietnam or Croatia, seeing historic sites and beautiful scenery. The best part is it won’t cost you a penny. Virtual tour site YouVisit (www.youvisit.com/tour) is normally used for virtual university tours, but has branched out to include popular cities and experiences around the world. Simply filter your search down to travel and decide where you want to go on holiday in a matter of minutes. Featuring virtual tours for 24 countries around the world, Virtual Tour (www.virtualtours.city) is also a great option to see the best tourist spots around the world. These are great tools to help plan future holidays, too.
THEATRE Like us, you might be missing trips to the theatre at the moment. Grab your favourite snacks and head to the National Theatre (www.nationaltheatre.org.uk) website to find a collection of their world-class productions to stream at home. With an extended free trial period, you can choose from 30 productions to watch or take part in their theatre quiz which can be completed at any time. If you love the classics, visit the Shakespeare’s Globe (www.shakespearesglobe.com) YouTube channel to watch full length shows for free. These change every fortnight, giving you something to look forward to every two weeks.
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STAYCATIONS
If you can’t visit your favourite places around the UK, let them come to you
If you can’t visit your favourite places around the UK, let them come to you. Zoos and safari parks, museums and historical sites around the country have gone online. Chester Zoo (www.chesterzoo.org) is now open to the public but will be keeping their virtual tours live so that everyone can experience the exotic animals. With six virtual zoo days to choose from you can walk around the zoo with keepers, learning facts about the animals and how they are cared for. The shift to virtual days out also means you might get to see inside historic locations you normally couldn’t. Take a room-by-room tour of Buckingham Palace (www.royal.uk/virtual-tours) to see how the royals live, visiting the Grand Staircase, Throne Room and more. Travel across the sea to Northern Ireland in minutes and visit the Giant’s Causeway with a National Trust panorama tour (www.nationaltrust.org. uk). View the site from different angles or at different times of day to see it when the sun is out or at dusk.
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Challenging the
new normal
Constant change to routines and government rules have created a challenging environment for autistic people both in and out of the home. Emma Storr discovers what adaptations have to be made to create a better space for autistic people
T
he constant changes due to the coronavirus pandemic throughout the first half of 2020 have created a confusing and distressing landscape for many autistic people. New rules and guidelines around staying at home, wearing face coverings and shopping, it can be difficult for people to process. “In lots of ways I think our concerns have changed as we’re going along, but I think the constant change and disruption is difficult for people to process,” explains Tom Purser, head of campaigns at the National Autistic Society. “We know that different changes have been much harder for some people than others.”
CONCERN
The continued update of rules is something that has affected Jane*, a mother of three. Her second son is autistic, with ADHD and a range of neuro-diverse conditions. “My autistic son is frightened of going out in case he catches COVID,” explains Jane. “He won’t go in the shops, it’s hard for him to go out usually so when we go back to normality it’s going to be even harder because it won’t be the same normality. “We’re just a normal family really struggling to cope with a child with all these conditions and fighting for support,” emphasises Jane. One of the main changes that Tom feels has affected autistic people is the requirement to wear a face covering in enclosed spaces.
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“Some people are worried they can’t wear masks because of sensory elements or their children won’t wear masks, for others they’re worried about what happens when other people aren’t following the rules,” reveals Tom. “We’re trying to make sure the government is reflecting the needs of autistic people in rules around face coverings.” Alongside the government’s face covering exemption cards (www.gov. uk), the National Autistic Society had developed exemption cards unique to autistic people. But Jane, like many others, wants people to know that no one should be required to show a card. “They’re going to find it difficult to communicate that with the person in the shop,” explains Jane. “To go to someone with the card is making them look different and they don’t want to look different. “A lot of teenagers want to blend in and fit in; to look different is a big thing for them.” Instead, Jane wants to see better support and advice available for autistic people about what to expect when leaving home, she says: “They need to a have session where they can have a short course to say this is what you’re going to see in the shops; this is what you’re going to have to deal with; show them what two metres apart is, because they won’t understand it.”
HOME SCHOOL
Along with leaving home to go to shops, Jane’s son has experienced difficulties accessing education during this time.
“He cannot cope with doing work at home and never has,” emphasises Jane. “From the start of lockdown, the school said ‘don’t worry we’ll get all of it complete’, and that’s not been the case. Zoom isn’t the mode for children with his difficulties because he can’t learn that way.” Jane was left in a position where she had to put pressure on her son to complete work that he couldn’t cope with. “I sort of pressured him one day and tried to get him to go on and he ended up having a meltdown and being violent,” recalls Jane. “He was smashing a Pringles tub against the wardrobe and split the lid and cut his hand open then had a seizure. “That’s when I said I’m not doing this anymore.”
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spotlight
*NAMES CHANGED TO PROTECT IDENTITIES
I think it’s so important that lessons are learned from what has happened
The mainstream school Jane’s son attends reopened so he could attend, but the family found that this did help in terms of productivity, but downsides saw him have more meltdowns at home due to his needs not being understood. Before and during lockdown Jane has been campaigning to have her son moved to a SEND school where his needs would be met. “The school he’s at don’t understand and shout at him for not completing work and it’s a vicious circle,” reveals Jane. “If it was a special needs school they would understand and he wouldn’t get punished.” Without access to the social aspects of school and the youth club that he attends, Jane’s son has had to rely on social media to upkeep friendships. This
isolation is something that has affected the whole family’s mental health, Jane says: “He’s had nowhere to go so they’re stuck with social media and he doesn’t cope with social media because of his social difficulties. “Even for my youngest who doesn’t have neuro difficulties, he’s having to have counselling because of lockdown and being in the situation we’re in,” explains Jane. “It’s not knowing how his brother is going to be from day to day.” As we move though the lockdown phases, it is hoped that lessons will be learned from this difficult period of time. “I hope the governments of all nations will continue to factor autistic people in their planning,” admits Tom. “We need to see guidance for changes
coming out as early as possible so people can be prepared for them. “I think it’s so important that we don’t see future waves and that lessons are learned from what has happened and people’s experience so far.” Upcoming changes to rules will continue to prove difficult for people on the autism spectrum, but with more support this transition could be easier. Easy-read information and autismspecific guidance will be necessary to making that happen. FOR MORE INFORMATION
The National Autistic Society’s coronavirus hub (www.autism.org.uk) provides autism-specific guidance on rules and guidance from the government.
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POWER OF FAMILY Families caring for a disabled child the last few months have seen bonds strengthen and positive steps in development, but, as lockdown lifts there are fears young disabled people will be left behind
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51
F
or many families living with a child with a disability – and other members of the disabled community shielding – lockdown came earlier than March. With the cancellation or limitations of services to an upheaval in routine, lockdown has had a significant and long-lasting effect for many.
As carers though, lockdown has made us realise how forgotten in society we all are
SHIELDING
“Lockdown was a bit daunting at first especially when the whole of the UK went into lockdown too,” explains Amanda, who cares for her daughter Meghan, who has cerebral palsy with a severe developmental delay. After returning from half term, Amanda and her husband, Michael, thought it best to take Meghan out of school in February meaning their lockdown started earlier, and they continue to shield. For Lynsey and her children William, Matthew and George, the experience of lockdown has been incredibly difficult, with no opportunity to go anywhere due to shielding. Similarly, Lisa and Mark have been shielding with daughter Rosaleigh. The fear of lockdown has been palpable. “In the beginning it was very scary,” says Lisa. “Due to Rosaleigh’s medication she was put in a clinically
vulnerable group.” Alongside shielding, many families have seen services and groups that were relied upon cancelled or paused.
PAUSED
Never having respite from caring duties, Amanda and Michael always felt school was respite enough. Prior to lockdown the family were looking for additional support and were referred to the Donna Louise Hospice. Amanda explains: “We could spend time there as a family and Meghan’s needs would be taken care of by nurses and I could be a mum rather than a carer and Meghan’s nurse. Unfortunately, they had already gone into lockdown at the hospice so we didn’t even get a chance to have a look around; we haven’t heard anything yet as to when the hospice will reopen.” Rosaleigh – who has a rare auto inflammatory condition called chronic, recurrent multifocal osteomyelitis
(CRMO), which causes inflammation and pain in the bones – has had all her vital physiotherapy rheumatology and metabolic bone appointments cancelled. “Telephone appointments have been had, but it’s just not the same as seeing the consultant or therapist in person,” says Lisa. “Miscommunication between hospitals meant Rosaleigh almost missed out on an important infusion, luckily, the team who look after her were happy to have her come into hospital.” With such important services paused the lockdown is certainly making a significant impact on the health and wellbeing of young people with a disability. The challenges faced have been unforeseen, but one charity is helping to ensure families on low income receive continued support and life-changing products.
FUNDING
Family Fund provides a vital service for families, and during lockdown they were granted an emergency £10 million in funding. This funding is just one small, yet significant, move to ensure people are not left behind. “The funding will have an immediate impact. In general, there has been a lack of support, with 76 per cent of families revealing they have lost formal support,” explains Rachel Perrin, partnership development manager for Family Fund. At the start of lockdown, the team conducted a survey on the impact lockdown has had on children with additional needs or disabilities. It found that 94 per cent of respondents noticed a decrease in the health and wellbeing of their child. Impacting emotions and behaviour, lockdown certainly has had a ripple effect on the disabled community, but Family Fund has continued to provide grants for families in need. Rosaleigh, Meghan, and William, alongside his brothers, are just three children that have benefited from a grant.
PROGRESSION Rosaleigh’s vital services have been paused
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“I felt guilty applying for something which a lot of people deem to be a luxury item, but its something we would never be able to afford ourselves,” says Lisa. Family Fund helped Lisa and her family get an
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inflatable spa for Rosaleigh who has reaped the benefits from the spa. Lisa adds: “It’s good for her muscles too, and we’ve looked up exercises to do in a hot tub which we’ve been doing to help her keep moving. Sometimes I can hear her singing away and I realise she’s just in the tub on her own.” Similarly, Lisa has enjoyed having the family all together during the last couple of months. “To be altogether constantly gave us back the time we’ve missed together over the past few years,” Lisa enthuses. For George, William and Matthew – who are all on the autistic spectrum – being out of school has impacted their routine. William, who also lives with hypermobility and a sensory processing disorder, has struggled to use items such as flashcards in his learning. With concerns around education and staying active, ensuring progression and development is not hindered is imperative. During lockdown William received a trampoline from Family Fund, which has been incredibly positive for his progression. Lynsey enthuses: “William absolutely loves his trampoline and is on it every day. He is doing amazing with his rebound therapy and his legs are getting stronger each day. It also helps with William’s constant stimming
Meghan
and supports George as he also has hypermobility.” Meghan has excelled in her development during this time, too. “Before lockdown Meghan could not put one foot in front of the other,” explains Amanda. “I have put her in her walker everyday and now she charges up and down the driveway using reciprocal steps rather than just pushing the walker along with both feet together.” Meghan’s improvement also saw her awarded physio pupil of the term after a visit from the school physiotherapist. Families are hoping that we are considerate about the needs of others in society going forward.
William and his family
AHEAD
Lisa emphasises: “I fear that now people wrongly see the pandemic as being over they don’t have to worry anymore. I don’t think there has been enough coverage of people George and Matthew with chronic conditions or disabilities, even the government guidance hasn’t always included them.” With shops and restaurants reopening, plus plans for schools to start a new term we need to ensure people are not left behind. “As a carer of a disabled child I watch the UK come out of lockdown and that’s all we can do: watch,” adds Amanda. “Meghan’s world is very small and thankfully she’s had no problems adapting to this new way of living; as carers though, [lockdown] has made As a parent it is imperative you us realise how forgotten in society know you are not alone – help and we all are. There are thousands support is readily available. From vital upon thousands of families like us grants provided by charities such as waiting for clarity. We can’t make that Family Fund, to the positive stories decision alone, we cannot put our shared on their Facebook Groups, loved one’s lives at risk. So, we just working together we can all ensure wait.” the power of family means young Hoping that changes will be made people have the space to flourish. to the benefits system, increasing carers allowance and the process around being accepted for PIP, FOR MORE INFORMATION attitudes around disability need to be If you require support with essential items Family changed, too. Lynsey adds: “Noticing Fund can help. Visit www.familyfund.org.uk that just because you have a child with or call 01904 550055 for more information on disabilities does not mean that you grants available. have to be excluded from everything.”
76% of families have revealed they have lost formal support
Read the extended feature over on our website, www.enablemagazine.co.uk enablemagazine.co.uk
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WIN
A GOOGLE HOME Get independent with our exciting giveaway. One lucky reader has the chance to win a Google Home
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egain your independence with the help of a Google Home, the top hands-free assistant on the market. Accessible technology is the future, and the Google Home is the leading product on the market providing vital assistance to people living with a disability. And we’re giving one lucky winner their very own Google Home! Take control of your day with your Google Assistant, the smarts behind the Google Home. With a simple, “OK Google, what does my day look like?” appointment reminders to the weather will be relayed to you. From news bulletins to playing your favourite music, and medication reminders – the Google Home has it all. As we begin to see friends and family again, your Google Assistant will ensure you know your plans ahead of schedule. The Google Home is the perfect product for people living with a disability as it provides an excellent source of support, ideal for your independence. Plus, with a simple voice command, you can enjoy entertainment such as radio, podcasts, music streaming and more. The world of entertainment has never been more accessible thanks to the Google Home. Daily chores and tasks are no longer a hardship as the Google Home allows users to get help from the Google Assistant by setting alarms to providing recipes, updates on travel – perfect for making sure your journey is as seamless as possible. With your permission, Google gets to know what matters to you. Curating daily information specific to your needs, Google Home can share your diary in seconds, meaning all of your appointments can be stored in one handy place, with reminders of when to leave for them! All this plus the stylish, sleek, and innovative design of the Google Home means it is a product that will put ease back into your daily life, whilst looking good. It’s time to meet your Google Assistant.
SUBSCRIBE
Order your subscription for Enable Magazine today (page 67) and you’ll automatically be entered* into this competition!
HOW TO ENTER
To be in with the chance of winning a state-of-the-art Google Home, simply send us your name, contact details and where you picked up your copy of Enable to competitions@dcpublishing.co.uk quoting Google Home. Or visit the Enable website and enter online at www.enablemagazine.co.uk/googlehome2020 All entries must be received by Monday 21 September 2020. Good luck!
TERMS AND CONDITIONS: All entries must be received by Monday 21 September 2020. The prize is one Google Home only, which will be posted out to the recipient. *You will be automatically entered into this competition if you subscribe before the closing date. The prize is 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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enable motoring
Changes to
car dealerships Many car dealerships are now open, or in the process of reopening, but strict social distancing measures will be in place. We look at what you can expect when you visit your local dealership APPOINTMENTS
You’re advised to make an appointment – after weeks of closures dealerships will be busier than usual, and they will need to limit the number of people in their showrooms at any one time. Contact your dealer in advance of going to a dealership, if you turn up unannounced they may be unable to accommodate you.
PARKING
Some dealerships are employing parking attendants to direct customers to parking spaces, ensuring cars are parked at safe distances. Parking spaces may be allocated in advance, so remember to book an appointment before visiting a dealership.
PERSONAL PROTECTIVE EQUIPMENT (PPE) AND SANITISATION While all dealerships will be adhering to government guidelines and practicing social distancing, some dealerships are adopting different sanitisation measures. You may find staff wearing PPE, like gloves and facemasks, as a means of protection. In some cases, staff may offer you PPE and hand sanitiser. Other dealerships may have protective screens up; some of the bigger dealer groups are even insisting on temperature checks for customers and staff alike.
SIGNS
Chances are one of the first things you’ll notice when visiting a dealership will be new signage. Many dealers are using signs, such as floor markings or posters, to outline their social distancing measures. Keep an eye out for these, they’ve been introduced to help people stay safe.
CLEANING
All dealerships have introduced strict rules on cleaning and disinfecting vehicles; this includes wiping down the car’s key touchpoints, such as the driver’s door handle, steering wheel, gear stick and controls to ensure that there’s minimal risk of infection.
About the Motability Scheme The Motability Scheme enables you to exchange all or part of your higher rate mobility allowance to lease a car, Wheelchair Accessible Vehicle, mobility scooter or powered wheelchair. Every lease is all-inclusive, so insurance for up to three named drivers (this doesn’t have to be you), servicing, maintenance, breakdown cover and tyre and windscreen repair and replacement is all included. All you need to do is add fuel and go. If you think the Scheme could be right for you, and would like to find out more, you can visit the Motability Scheme website at www.motability.co.uk or you can call one of their friendly advisors on 0800 093 1000. There are around 4,500 Motability Scheme dealerships across the UK, each with specialists on hand to give you expert help and advice. You can find details of your local Motability Scheme dealers along with their opening hours at www.motability. co.uk/findadealer With current social distancing measures in place, before visiting the dealership you must contact them to make an appointment to see their Scheme specialist. This will also mean they will be able to enablemagazine.co.uk dedicate enough time to help you find the right car.
57
REVIEW
SUZUKI SWIFT Get behind the wheel of the Suzuki Swift as our columnist Alisdair Suttie takes it on the road for a test drive, ensuring you know exactly how this car can meet your needs
INSIDE Getting in and out of the Suzuki Swift is simple thanks to its more upright styling than many other superminis. The front door swings open wide and the driver’s seat is at a good height to slide into from a wheelchair. The driver’s seat height can also be altered to help with movement, and finding the right driving position. It’s a shame Suzuki only offers depth adjustment for the Swift’s steering wheel on the top spec SZ5 models, as it can make getting comfortable behind the wheel trickier in lower trim models. The controls are
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arranged where you would expect to find them, but one exception to this is the volume control for the stereo on the infotainment screen, which can be fiddly to use. In the back, space is reasonable, though not as generous as a Volkswagen Polo. Two adults can fit in here, while kids will be happy. The boot is decent but not class leading for space. Also, the seat backs flip down and are divided 60/40, though there is a large step in the floor when they are toppled forwards.
“On the road,
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the Swift is nimble in town and stable on the motorway
“
The Suzuki Swift comes with no advance payments and weekly rental starts from £61.65. Find out more about the Motability Scheme at, www.motability.co.uk
EQUIPMENT The good news is that whichever Suzuki Swift you choose, they all come with a generous amount of standard equipment compared to most of their supermini rivals. The entry-point SZ3 rides on 15-inch steel wheels, but has electric front windows, automatic headlights and air conditioning. You also get a DAB digital radio and Bluetooth connection to pair a smartphone to the car. Move up to the SZ-T and 16-inch alloy wheels become standard, along with front fog-lights and a reversing camera that makes parking much easier. The seven-inch touchscreen for the infotainment is an added bonus, and it has Apple CarPlay and Android Auto so it can be linked to your phone and its apps. Then there’s the SZ5 that gains keyless ignition, lane departure warning, sat-nav, and LED front and rear lights. You also have electrically folding door mirrors, electric rear windows, adaptive cruise control, and autonomous emergency breaking that applies the full force of the brakes if the driver fails to react to a possible hazard in the road ahead.
DRIVING The Swift in SZ3 uses the 1.2-litre Dualjet, which is easy on emissions and fuel, but a bit sluggish. Fine around town, it feels out of its depth on faster roads, which steers us towards the turbocharged 1.0-litre Boosterjet in the SZ-T and SZ5 trims. It has more low-end pull and revs keenly to feel brisker than its on-paper figures suggest. It’s also the only Swift engine offered with an automatic gearbox in SZ5 specification. Both the 1.0- and 1.2-litre engines can be had in mild hybrid forms that use a second battery used to power functions like air conditioning and starting the engine. This takes the strain off the engine to improve efficiency. There’s also a fourwheel drive Swift with the 1.2-litre engine but no hybrid power.
On the road, the Swift is nimble in town and stable on the motorway. It doesn’t ride with same supreme comfort as a Skoda Fabia, but doesn’t leave you all shook up. There’s more road and wind noise than the supermini class leaders, but the automatic gearbox is smooth and responds well to changes from the steering wheel paddle shifters.
SUMMARY Good value and perky engines are the Swift’s major attractions. It’s great about town, but only middling for cabin quality.
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Car insurance adapted for you Back in 1973, Adrian Flux’s passion for motoring wasn’t held back by the fact he had a disability, but that he couldn’t find an insurer that would cover his needs. So, knowing that he couldn’t be alone in his search for equality, he formed his own brokerage with the aim of insuring the “uninsurable”.
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The way you apply and are assessed for different benefits has been adapted over the last few months in order to support more people. Here’s what you need to be aware of going forward
REVIEWING BENEFITS
APPLICATIONS
Changes to the way in which the Department for Work and Pensions (DWP) is operating and an increased demand for financial support has led to benefits applications changing during this time. At the beginning of the pandemic
“You hope that
ministers will be looking at those parts that work and those that are not working
“
W
ith rising levels of redundancy and unemployment, the benefits and welfare system has undergone changes to adapt to increasing demands for support during the ongoing pandemic. Ian Greaves from Disability Rights UK (www.disabilityrightsuk.org) has been following the changes to the benefits system throughout the pandemic, he says: “No two benefits are affected in the same way, and some less than others. “Some of it is just a degree of tinkering to make the claim process a little bit easier during the outbreak.”
face-to-face assessments were halted to protect public health and people were encouraged to apply for benefits online rather than over the phone. “I think the main things with Universal Credit and key disability benefits like Disability Living Allowance (DLA), Personal Independence Payments (PIP) and Attendance Allowance was actually in the process for assessments,” explains Ian. Due to the pandemic, face-to-face assessments were removed because of the high-risk factors involved.
“Now that has changed back to the kind of old systems, so they are introducing reassessments once more,” he adds. “But for the foreseeable future, they’re not going to be those face-toface assessments.” It is expected that reassessments and assessments for new applications will take place over the phone or be paperbased to continue to protect vulnerable groups from COVID-19. This can be helpful for some people, but may slow down the process if you have to provide medical evidence during your assessments, Ian says: “For instance, if you’ve got a damaged spine they may want to do a physical assessment of you to get an idea of the support you need. “If you don’t have any medical evidence to provide them beyond your consultant’s or doctor’s letter that you might have retained, then they would normally do this brief medical examination, those won’t be taking place for the foreseeable future.”
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KEEPING RECORDS
In order to provide accurate information during these remote assessments, both medically and otherwise, Ian recommends keeping a daily diary to present to your assessor. “Be very patient and record as many things as you can,” advises Ian. “It makes it easy when a doctor talks to you over the phone to get an idea of what you are feeling like on a particular day. “If you’ve got a variable condition it is more difficult to assess that based on one day, so if you’ve got a diary saying how your mobility has changed from day to day or how your symptoms have changed, it will give you a better idea of how to answer questions.” Keeping note of the changes to your health condition is important while making claims for any benefit as it allows you to fill out applications easily and accurately, especially when applying in different circumstances than usual. Use this diary to provide a broader, more holistic view of your needs over time, considering both good and bad days.
MONEY NAVIGATOR If you are struggling financially as a result of the coronavirus pandemic or changes to the benefits system, the Money Advice Service’s Money Navigator Tool can help. The tool gives you personalised guidance after asking a short series of questions about your financial situation. Nick Hill, money expert at the Money and Pensions Service, explains: “It will highlight areas where you should consider taking action most urgently to avoid money problems later on. “The tool is designed to help people who have seen their finances impacted by COVID-19, such as people facing redundancy or job loss, self-employed people whose work has dried up, and people who have had a temporary income drop who need help to get back on track.” To use the tool and get free, impartial financial guidance, visit www.moneyadviceservice.org.uk
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It is also helpful to note down your work situation, if you will be looking for new work in the future, changes in circumstances and any childminding responsibilities. Along with the application process and changes to the way assessments are carried out, there has also been fundamental changes to some benefits, in particular with Universal Credit.
UNIVERSAL CREDIT
During the coronavirus pandemic the number of people applying for universal credit has increased due to job losses, but this need for extra support has meant an increase in the benefit for this tax year. “One of the consequences of the outbreak is that Universal Credit was raised by roughly £20 a week, so that was a positive,” emphasises Ian. “Putting that into perspective, it went some way towards offsetting the cuts that we’ve seen over the previous years.” While this increase will help people financially this year, the extra funding is temporary and it is likely this will end
next April. It has been estimated by the Office of Budget Responsibility that this will mean almost seven million people will lose £1,000 a year. As different aspects of healthcare are reflected on, Ian hopes to see the same for the benefits system, he says: “This time has given us all a chance to consider what our priorities are and you hope that ministers will be doing something similar with the benefits system, looking at those parts that work and those that are not working.” The ways in which the benefits system continues to adapt will be revealed in the following months alongside how it may impact what you are entitled to, but it is hoped that some of the positive changes made can remain permanently.
FOR MORE INFORMATION
For further information on the changes to the benefits system visit Disability Rights UK (www.disabilityrightsuk.org.uk) or contact Citizen’s Advice (www.citizensadvice.org.uk).
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INDEPENDENCE
at home A
decision that has not warranted such thought and concern since wartime Britain, on Monday 23 March people across the UK were told to exclusively stay at home. Morning commutes were swapped for working at home, exercise was limited to one hour per day and the message of personal safety, and safety of others, was paramount. For the two million people across the UK shielding it has been, and continues to be, a significant change to adapt to. From alternating routines to concerns over PPE for carers and PAs, the disabled community have faced the dangers of the virus head on. Another hidden aspect of shielding for some was the loss of independence.
Samantha’s decision of putting her safety first resulted in limitations to her independence. Regardless of ability or the state of the world, our independence is critical in ensuring we thrive and live fulfilling lives. Samantha emphasises: “Independence means I’m not conforming to stereotypes or labels I’ve been given. I was always told you can’t and I would say, ‘watch me’. As I’ve gotten older it’s not about anyone else, it’s about my own sense of worth and even challenging myself.” Adapting to the family home meant Samantha, who is a wheelchair user, has new challenges to overcome from steps around the home, cobbles, and asking her mother for support doing basic tasks.
SAFETY
BURDEN
Shielding has seen many people weighing up the best options for their needs, and in some cases, returning back to the family home has been the right decision. However, returning home does come with its own issues. “There were a few reasons to going back home,” explains disability rights campaigner and actor, Samantha Renke. Living in a flat, Samantha was aware that not all tenants were adhering to social distancing guidelines, and it was important to take into consideration the help Samantha receives from her PA. “I have a PA 15-hours a week and she also cares for someone with Alzheimer’s and that person has outside care – suddenly you have this big melting pot of people. It all became a lot of, in my eyes, unnecessary organising and putting myself or others at risk.” Returning to a rural cottage from an adapted flat in London,
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“I can definitely feel like I’m getting to a point where I’m thinking if I’m being a burden,” reveals Samantha. “If you ask for something like a cup of tea and a biscuit, but the biscuit gets forgotten about, I can’t just go get the biscuit – so, do you then ask for it again? You don’t want to be that person – it sounds basic, but when you don’t have the luxury of doing something for yourself it is an aspect that can chip away at you a little bit.” Lockdown has meant putting our lives and goals on hold. Adding into this strange and uncertain time pressing pause on our independence can come with further confusion and irritation. However, Samantha is now using this time to continue with her successful career in campaigning for the rights and needs of others – especially when it comes to adapted housing and accessibility.
Samantha Renke
PIC: © NICKY JOHNSTON
The term home sweet home has had a different connotation for many during our time in lockdown. For some in the disabled community, staying safe and shielding has resulted in a loss of autonomy and more needs to be done for the future at home
I feel like the economy has been prioritised over health and that terrifies me
Samantha emphasises: “For a very long time I felt that asking for help was a negative thing. I know that our needs are very different within the community, and I would never want anyone to feel ashamed if they needed additional assistance, so I’m not here to say shame on you. For me, for my mental wellbeing, I like that I can do things on my own.”
ACCESS THE FUTURE
Samantha’s adapted flat has been integral to her autonomy and success in London over the last eight years. However, spending time in her family home, Samantha is reconsidering where she calls home due to accessibility issues and the changing world around us.
*www.gov.uk press release Government announces ambitious plan to build the homes Britain needs, 7 February 2017
enable housing
“We are the fastest growing minority and I’m struggling at the moment because I don’t know if I still see my life in London anymore, just because of the way London is shaping,” explains Samantha. “It is not considering the needs of the disabled community.” From bustling cities to the quaint countryside there is a lot still left to do to ensure inclusive, affordable housing is the norm. Last year saw the number of new homes registered to be built in the UK reach a 13-year high, and more are set to be built to reach the government’s target of building 225,000* new homes across England alone. This is an exciting figure and prospect of new housing, but moving forward from lockdown it is
imperative that investments are made in accessible housing. Samantha continues: “I feel very threatened as a person with a disability by what has happened. I feel like the economy has been prioritised over health and that terrifies me. I get so much hostility when I voice the needs of people with a disability in London, there is a real anger out there. “But, if I had to live in London with reduced care, seeing my PA only for the bare minimum, and my home wasn’t accessible I don’t even want to imagine what that would be like, and I know that there are people who are in that position,” Samantha emphasises. “This is why we need to readdress homes.” At present there are some disability
specialised housing agents including Accessible Property Register (www. accessible-property.org.uk), but it is evident more still needs to be done to reach equality across the housing market. With an ageing population and various needs and requirements for the disabled community, as we adapt to the new normal it is evident housing should be reconsidered to maintain, or regain, independence. FOR MORE INFORMATION
Follow Samantha on social media @samantharenke. Housing and accessibility advice is available from Scope (www.scope.org.uk), Disability Rights UK (www.disabilityrightsuk.org) and Shelter (www.shelter.org.uk).
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A NEW INNOVATION IN DISABILITY SCOOTER DESIGN The real beauty of the Electrokart Ranger is the ease with which you can take it apart. 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 £2,600 HEAVY DUTY RANGER with a lithium battery £2,995
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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illed with the latest news, interviews and discussions important in the world of disability, Enable Magazine is a trusted and respected title for many. And we want to make sure you never forgo an issue! At Enable we’re committed to ensuring everyone can get a copy of the magazine. That’s why, if you subscribe today for one or two years you can gift a one-year subscription to a friend at no additional cost. Simply tick the box on the cutout form and include the details of your nominee and we’ll take it from there. This means you and your friend will receive a subscription to the UK’s leading disability and lifestyle title straight to your door! So, what are you waiting for?
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August / September 2020
enable life
Product Roundup
Our pick of the must-have products on the market for improved health, mobility and accessible style HEALTH
MOBILITY
AUTOMATIC PILL DISPENSER
DMO SHOULDER STABILITY ORTHOSIS
Pivotell, £102.00 exc VAT www.pivotell.co.uk, 01799 550979
DM Orthotics, £230 exc VAT www.dmorthotics.com/shop, 01209 219205
The DMO Essentials shoulder stability orthosis provides similar benefits to the DMO made-to-measure shoulder stability orthosis, but in a range of predetermined sizes. Designed to manage shoulder impairments, its unique design pulls shoulders back, supports the shoulder blades and stabilises the shoulder joints, providing greater comfort, improved posture and range of movement.
HOME
During these uncertain times we all want our loved ones to remain safely at home. Trusted by the NHS and Social Services, Pivotell Dispensers assist users with their medication management with up to 24 alarms per day. Their use has been proved to promote independence and a better quality of life.
BEARHUGZZZ BED
Kinderkey Healthcare Ltd, POA www.kinderkey.co.uk, 01978 820714
Bearhugzzz Bed is suitable for vulnerable children and adults. It can help to improve poor sleep patterns and provide safety for those who wake during the night. A major benefit is the bed’s ability to withstand vigorous behaviour, thanks to its soft padded sides which protect the user against injury.
STYLE
MOBILITY
WHEELCHAIR COSIES
RANGER MOBILITY SCOOTER
BundleBean, from £29.99 www.bundlebean.com, 020 3795 7225
BundleBean Wheelchair Cosies are warm and waterproof with their own stuff-sac. Easy to fit, non-restrictive and comforting, with a pouch pocket for cosy hands. They are fully universal fitting all brands of wheelchair and special needs buggy, in both adult and child sizes, in a range of stunning fashion led designs.
Electrokart, POA www.electrokart.com, 01233 666000
HEALTH
WEAREVER WASHABLES
iMEDicare, from £10.24 mypelvichealth.co.uk, 01923 237795
Urinary incontinence can impact up to one in four women at some point in life. Discrete, durable, and attractively priced, Wearever Washable incontinence underwear are resistant between 200 and 250 washes protecting against light, moderate, and heavy leakage (up to 650 ml). Choose confidence, not leaks with iMEDicare’s Wearever Washables.
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The new off-road mobility scooter offers users the ultimate combination of power, performance and stability; all in a superbly engineered machine that quickly dismantles to stow away in the boot of your car. The Ranger has slim line dimensions, is compatible for rough terrain and features a swivel seat for easy access.
Automatic Pill Dispensers and Medication Reminders Our products are widely used by Health and Social Care professionals for vulnerable older people and those with learning difficulties who need to be reminded of essential daily tasks such as taking their medication. Find out more today:
pivotell.co.uk
enable employment
In control of your care
Hiring a personal assistant can help you manage your own care and support. We look at the benefits of hiring a PA and what you should know before making the move
A
personal assistant (PA) is someone you employ directly to support you in day to day life. Usually, you will be funded by your local authority through direct payments to employ workers yourself. Hiring a PA is not always the same as having a carer, it is about independent living and having the unique support you or your loved one requires.
CONTROL
One of the most appealing aspects of hiring your own PA is being at the centre of managing your support. “There are more choices and control over how your care and support needs are met, they can support you in a way that you want,” explains Carol Reeves, project manager at Skills for Care. When hiring a PA, you get to decide what kind of person you want and what support you need. This could be someone with similar interests to you or with specific qualifications in social care that suit your needs. Tess has employed a team of PAs for her son, Richard, for more than 12 years, she would advise people to hire a PA when they don’t initially need much support, Tess says: “Try and get a personal budget when you only need a few hours because you can learn to be an employer without that much pressure.” Becoming an employer is a learning curve and it is important to know about the hiring process and employee’s rights before advertising a role.
PROCESS
The first step in the process is deciding what type of support you require, Carol explains: “People need to consider the type of person that they want, what support they need to live their way and sometimes it’s important to think about the things you don’t want.” When considering these factors write up a short job description about what
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Training sessions
you are looking for before recruiting. Once you have chosen a PA it is important to have a training or probation period for people to learn how to properly support you or your loved one, Tess advises: “When they start we do the best part of the month of shadowing so that they really know how to support Richard. “We also do a monthly staff meeting and a monthly training session.” If you are considering hiring a PA, speaking to your local authority, a support organisation or someone who already employs PAs can be helpful, Carol explains: “Find out as much as you possibly can, I think it’s really worth talking to some people who already employ a PA as well about what they do and how they manage things.” Hiring your own PA and becoming an employer can be scary, but the benefits are worth it. Whatever support you need, having a PA can put you in control of your own care.
Connecting in lockdown
There are more choices and control over how your care and support needs are met FOR MORE INFORMATION
If you are thinking about hiring a PA, Skills for Care (www.skillsforcare.org.uk) and Scope (www.scope.org.uk) can offer advice and support.
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Clocking in,
at home
Regardless if working from home is a new experience or a regular aspect of your career, there are clear benefits and pitfalls to working at home – especially as a disabled employee
O
vernight more than half of the UK workforce started working from home. In the last four to five months, employees have continued working where possible showcasing that home working is not impossible or a benefit that should be used as a reward. With businesses preparing to open their doors and others deciding to continue home working for the foreseeable future, there is an overriding agreement that working from home is the future for some.
POSITIVES
Having experienced working from home prior to lockdown, Jenny Clarkson was a specialist speech
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therapist for the NHS for 18-years before making the decision to leave the NHS due to multiple sclerosis (MS) last year. “It was just getting so hard in terms of leaving the house, getting up so early, and having to be on the ball all day,” explains Jenny. Being at home, Jenny has seen an improvement with her symptoms. Noor works as a therapist for the NHS and also has MS. For Noor, working from home amplified and exacerbated anxieties caused by the pandemic, however, after working from home Noor is beginning to reap the rewards. Noor says: “I’ve found that stress and fatigue are not as bad, because I can work at my own pace, I can get that drink when I need it; I haven’t got any added factors from the office. As
You shouldn’t have to choose between your health or employment
enable employment
to adapt how she carries out speech the TUC have heard first-hand the sessions and the best methods to positives of home working. Quinn provide teaching sessions. Roache, policy officer for disability and “It has been weird working from LGBT+ equality at TUC, emphasises: home,” says Jenny. “At first it was “Disabled members all comment useful, but when COVID hit everything on the fact that barriers that have went up in the air because I usually been put in place for years that have work one-to-one with clients and you stopped them working from home can’t do that anymore. It has been quite have been completely pushed aside challenging considering how I work by the pandemic. Suddenly, they’re with social distancing.” able to work from home and have Isolation and loneliness are another been more productive and happier as factor of working life that people a result.” miss. From reconnecting At times, Noor over coffee, having a short experienced neck flare The Office of break to share ideas ups and blurred visuals with colleagues, or with stress, which has National Statistics chatting together – reduced from time revealed 86% working from home working from home. of workers have can take away this “Take a break; that worked at home due social interaction. is your sign that you However, as we need to take a break,” to the coronavirus become more reliant on advises Noor. “Flare pandemic technology the benefits ups only happen when of staying connected are we’ve gone that bit too far becoming apparent. Noor and and now it’s time to slow down her colleagues have two lunch-time and have a really frank conversation.” meetings and host after work social “Employers really need to listen events online for those who can join. to the person who has the problem, Similarly, Jenny has found solace difficulty, or disability because we are in groups for independent speech the people who know what we need therapists. Jenny enthuses: “It has made to be doing,” adds Jenny. “We want a difference to my mental health that to work so it’s being open to different I’m not stuck trying to work through all ways of working – we all need to work this by myself.” together.”
CHALLENGES
Of course, with any role comes challenges and this is no different when working from home. One main stumbling block is access to adapted technology. “For many a therapist, I can hear others on the disabled workers the biggest challenge phone around me and I didn’t realise has been getting the reasonable how much that was exacerbating adjustments put in place for home my symptoms. There is a massive working,” explains Quinn. “At the best difference to be at home and not deal of times our disabled trade unionists with as much of that.” say they have difficulties getting their For many disabled people who have reasonable adjustments put in place an energy limiting impairment that – this is during normal circumstances leads to fatigue, such as MS, working not during a pandemic.” from home has been incredibly At work, Noor was provided with a beneficial for its management. More standing desk and surgio ergonomic importantly, working from home chair in the office. At home, the NHS means barriers faced in the workplace has supplied Noor with many are no longer in place. adaptations at home such TUC is an organisation as a keyboard, however, as dedicated to ensure the HAVE YOUR the world is on pause, Noor working world is a better SAY has had to make a makeshift place for everyone. With Share your standing desk in her home its 48 affiliated unions thoughts on until her provided desk can representing around one working from be delivered. Jenny has had million disabled members home over on Twitter, @EnableMagazine
NEXT STEPS
There’s no denying working from home is another factor in the ‘new normal’. Love it or loathe it, the conversation is well and truly in place for the benefits of working from home. Noor says: “Maybe people will feel more able to bring it up now that we’ve almost had the time to prove ourselves.” Quinn agrees: “We have proven we can work from home successfully and be productive and be trusted to do so… Some people can’t return to work because it risks their life. You shouldn’t have to choose between your health or employment.” FOR MORE INFORMATION
Understand your employment rights with TUC (www.tuc.org.uk), and get information on adapted technology from AbilityNet (abilitynet.org.uk). Advice and support on multiple sclerosis can be found through the MS Society (www.mssociety.org.uk) on 0808 800 8000.
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The fight for a
DIVERSE WORKFORCE
As we move through 2020 equality is at the forefront of conversations between friends, family and colleagues, but the dialogue has to transfer into the workplace in order to create real change enablemagazine.co.uk
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enable employment
I
n May 2020 the murder of Black American George Floyd led to a surge of calls for equality around the world with thousands of people peacefully protesting in cities internationally. Now, the spotlight on minority groups is brighter than ever. In order to create real change, education is key, but employers have a large role to play to ensure all minorities, including people with disabilities, are represented in the workforce.
OBSTRUCTED
Throughout history disabled people have faced barriers to employment ranging from discrimination to inaccessible interview processes, workplaces and a lack of flexibility from employers. But, this year the unprecedented shift from office working to working from home has scratched the surface of what can be possible. Organisations like Evenbreak (www. evenbreak.co.uk), Remploy (www. remploy.co.uk) and the Equality and Human Rights Commission (www. equalityhumanrights.com) have long been advocates and campaigners for these obstructions to be removed. Now, there should be nothing preventing disabled people from reaching their potential in the workplace. “It is ironic that disabled people have been saying forever, why can’t we do this work at home and have been told time after time it’s not possible, then all of a sudden, we have a pandemic and we discover not only is it possible, it’s desirable and it works well,” explains Jane Hatton, director of Evenbreak. Employment barriers mean disabled people have developed further skills like problem solving and project management, but perceptions of disability have to change to eradicate hurdles. “I think there’s still a narrative around disabled people being seen as objects of pity, benefits scroungers, or as super humans,” emphasises Jane. “I think we need the narrative to change to disabled people being just like everyone else, except we often face more barriers. “It’s about actually viewing disabled people as a valuable source of talent.” Jane’s thoughts are echoed by Rebecca Thomas, head of employment policy at the Equality and Human Rights
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You can’t talk about diversity and inclusion without talking about disability as well Commission (EHRC): “Encouraging honest discussions about disability and race, and the experiences of minorities within the workplace, is important to make sure everyone can realise their right to work and a working environment that allows them to achieve their full potential.” The way people talk and the language used needs to change, not just policies, in order to create inclusive workplaces.
OPENING DOORS
It is hoped that the increase of home working will prove that flexibility should be the norm in the workplace, something Kathryn Wood, disability training and consultancy specialist at Remploy, feels strongly about. “I think the pandemic has opened people’s eyes to the possibilities of home working,” explains Kathryn. “Employers may have realised that productivity has not been adversely affected and they can potentially reduce the space they operate from.” If flexible working becomes more commonplace it will open the doors for more disabled people to pursue their chosen career or employment in general. “The optimistic side of me says that if the new world of work requires people to be more flexible, to work in different ways, to work remotely, then the very best people to do that are disabled people,” admits Jane. “We’re really good at finding new and innovative ways of doing things.” In order to see these changes, the discussion and debate about diversity and equality has to continue and grow stronger.
POSSIBILITY
“This is the time to use this opportunity to do all of the things we wanted to do over the years, which is to have a more diverse workforce,” expresses Jane. “My concern is that diversity and inclusion is seen as something that is only interesting when there isn’t a crisis.”
As more people face redundancy and unemployment due to the economic downturn caused by the coronavirus pandemic, there is a surplus of applicants for every new job role. “There are likely to be so many more people out of work that each vacancy will have far more applications than they would have had immediately prior to COVID,” stresses Jane. “We need to work hard to make sure that now there is an opportunity for change and a different way of working, and that we push disability right to the top of the agenda. “You can’t talk about diversity and inclusion without talking about disability as well.” For Kathryn, the wave of discussions on equality and diversity have seen employers change their policies and practices. “Some sectors have started to recognise the particular skills and perspectives disabled people can bring to their organisation,” reveals Kathryn. “Regardless of the employer’s motivation, these factors will provide increased opportunities for applicants from all backgrounds and perhaps change a few mindsets.” Disabled people being part of the conversation on how to make each workplace a diverse and accepting place is key to continual change. “More diversity means a wider range of views and experiences can be shared and built upon, leading to better, more informed decision making,” explains Rebecca. “I would hope that disabled employees are more confident in being able to ask their employers for the reasonable adjustments they need to do their job, and for flexible and home working options to be considered as an adjustment.” The way in which we work is constantly changing, but there is a long way to go to ensure minority voices are heard and disabled people are given a fair chance in the workplace. While the hardship the coronavirus pandemic has caused cannot be erased, the proof that flexible working can build a more diverse and dynamic workforce can’t be ignored either.
FOR MORE INFORMATION
The Equality and Human Rights Commission (www.equalityhumanrights.com) provide information on your rights as an employee.
Committed to equal opportunity We’re Scotland’s public sector auditor. We give independent assurance to the people of Scotland that public money is spent properly, efficiently and effectively. We are committed to equal opportunity and to a culture that respects difference. We welcome applications from all sectors of the community. We offer an interview to all disabled candidates who meet the essential criteria. As an employer, and in our audit role, we play a leading part in the promotion and application of diversity and equality.
Place your creative SEND students with us • We work with many local authorities to provide creative SEND students with the vocational qualifications they need to progress on to University and creative careers. • We also offer most popular academic GCSE and A Level courses • We can be added to EHC plans
www.audit-scotland.gov.uk/careers
Students can start anytime Call FREE 0800 612 0439
NHS Lothian Opportunities Over 100 career paths – one employer We recognise the value that everyone brings to our organisation. Through our ‘Job Interview Guarantee’ we will consider you on your abilities and guarantee an interview where you meet the essential criteria for the post. We have a wide range of jobs at entry and qualified level and offer great opportunities such as DFN Project SEARCH a business led work preparation programme for young people with disabilities – and much more.
Earn
Learn
Progress
SKILLS
AMBITION
You can build on the skills you are good at
You can match your skills to those we need
STRENGTH
INTEREST
You can support your career goals
You can develop your interests into a career
Further information on the initiatives NHS Lothian are involved in can be found at: www.careers.nhslothian.scot.nhs.uk or email: workplacements@nhslothian.scot.nhs.uk All our vacancies are advertised on: www.jobs.scot.nhs.uk @NHS_Lothian @yourNHSLfuture
Awards Aware awardsnetwork.org
enable education
ADVANCING
F
Online
lexibility, support and opportunities are all provided through online courses, giving you the chance to further your knowledge from the comfort of your own home.
OPPORTUNITY
Throughout this year we have experienced a shift to working and communicating virtually. The uptake of online courses has been no exception: Between March and June online course site FutureLearn saw more than one million Brits sign up to its platform. If commuting, building accessibility or course formats have previously felt like a barrier to learning, this is no longer the case. Moving forward in 2020, the majority of university and college courses will be taught online.
LEARNING IN PRACTICE
Online courses can take place over a few
Throughout this year we have experienced a shift to working and communicating virtually
The first half of 2020 was dominated by technology, showing how the internet can be utilised to work, learn and upskill from home. So, what exactly are the benefits of online learning?
hours to several months, and range from a quick refresher to gaining a whole new degree. Deciding why an online course would benefit you is key: You could even make a career change after a period of uncertainty at work. With course content formulated by experts in the field, online courses are as valuable as physical classes and are recognised by employers. Increasing your knowledge and skills not only helps your career, it builds selfconfidence and can help tackle feelings of isolation.
PERFECT FIT
New online courses are constantly being developed and there is a number of course providers, each with their own benefits. If you are looking for shorter, free online courses, FutureLearn (www. futurelearn.com) and Coursera (www. coursera.org) provide thousands of chances to master new topics. The Open University (www.open.ac.uk) is the go-to destination if you are looking to complete a full degree from your living room. The University can help you reach your potential with a range of onlinebased learning alongside a dedicated disability support team. Reed (www.reed.co.uk) is commonly used as a job search engine, but the company is also a base to search for
online courses. You can filter this down by industry, cost or experience level to find options that suit you. Whether you are new to online learning or have previous experience, online courses can open doors to new ideas and paths that potentially weren’t possible before.
COURSES Everyday Essential British Sign Language (L1) www.reed.co.uk Perfect for learning the basics of British Sign Language (BSL), the course covers essentials from the alphabet to building sentences in BSL. This course lets you work at your own pace with all content available for 12 months after purchase. Learning How to Learn www.coursera.org A great starting point if you haven’t experienced online learning before, or haven’t participated in education for some time. Covering how the brain learns, it teaches you study techniques to help you master any online course and take your learning further.
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enable care
A helping hand Disability can leave you feeling isolated at times, however, there are a plethora of charities, online communities, and groups for a range of disabilities on hand to show you are not in this alone
ONLINE SCOPE ONLINE COMMUNITY community.scope.org.uk Free to join, the Scope online community is a group connected by disability. Hosted by leading disability equality charity, Scope, their online community has a wide variety of discussion groups covering topics ranging from benefits to specific conditions. The Coffee Lounge is a great interactive chat where you can post your own queries or respond to others in the community.
for a loved one with the condition, the Alzheimer’s Society’s online forum is a safe, informative space to discuss your experiences.
SUPPORT GROUPS MENCAP www.mencap.org.uk Improving the lives of people with a learning disability, Mencap works with over 400 local groups to reach people across England, Wales and Northern Ireland; and partnered with Enable Scotland for support in Scotland (www. enable.org.uk). Campaigning to ensure people with a learning disability receive the right medical treatment all the way to running sporting events to get more people with a learning disability included in sport.
ELEFRIENDS www.mind.org.uk Mental health can be hard to discuss with loved ones, this is where Elefriends comes in. Mind, the mental health charity, runs the supportive online community dedicated to ensuring you LEONARD CHESHIRE have a safe space to talk about your www.leonardcheshire.org mental health and connect with others Everyone has the right to work and live who understand what you are independently and Leonard Cheshire experiencing. Open 24/7 are helping to fulfil this goal. Elefriends is a space to Providing opportunities for 10 listen, share and be heard. to 35 year olds with their Can Reaching out Do skillset development can feel daunting, DEMENTIA programme, providing but it’s important to TALKING POINT accessible holidays all the forum.alzheimers.org.uk way to supported living know you are not Regardless if you have centres, Leonard Cheshire alone been diagnosed with can be a lifeline to your dementia or you are caring autonomy.
FINDING YOUR FEET findingyourfeet.net For those new to amputation, Finding Your Feet supports families and people affected by amputation or limb absence. Initiatives include sporting activities and social inclusion projects to provide a positive outlook on your physical and mental health – plus, their FYF Limbless Lockdown Facebook groups has a range of virtual events taking place. SIBS www.sibs.org.uk Having a sibling with a disability can be enriching and challenging. Charity Sibs supports people, both young and old, who are or have grown up with a disabled brother or sister. Sibs is currently running several online workshops for parents and counsellors, with an e-book entitled Self-Care for Siblings.
YOUR RIGHTS DISABILITY RIGHTS UK www.disabilityrightsuk.org Leading the way for change, Disability Rights UK provides a host of free, independent, up-to-date information to represent the rights of people living with a disability. Ranging from Access to Work benefits, getting into employment or education, advice on independent living to the work being done to influence public attitudes: this website will make sure you know your rights.
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enable life
APPRECIATING
technology
Technology has been a lifeline for many throughout the coronavirus pandemic, for Gig Buddies Laura and Saskia it has made their friendship stronger. Laura speaks to Enable about their relationship and how it has adapted
W
hen Laura made the move from London to Brighton five years ago she could count the people she knew there on one hand. After joining her local LGBT+ football team Laura learned about Gig Buddies (www.gigbuddies.org. uk), a charity matching volunteers and people with learning disabilities based on shared interests.
other both on and off the pitch. Since Saskia joined the team, her progress has amazed Laura. “Saskia’s actually a fully integrated part of the club and it’s awesome because there’s 30 people looking after her and keeping in touch constantly,” Laura continues. “Her confidence has increased dramatically and it’s lovely to see how much Saskia’s grown.”
FRIENDSHIP
CONNECTED
“I moved and wanted to do something positive,” explains volunteer Laura. “I’ve been Saskia’s gig buddy for three and a half years now and our relationship is great.” Fuelled by their joint love of football, Saskia and Laura quickly became close friends and team mates, supporting each
Saskia would be lost without tech in life in general, let alone in lockdown
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Like many people, Saskia and Laura have utilised technology to keep in touch throughout the coronavirus pandemic. “[Saskia] would be lost without tech in life in general, let alone in lockdown,” emphasises Laura. “As a team we WhatsApp and video chat all the time, we talk everyday about anything and everything.” Lockdown meant many of us were unable to meet up with friends, but thanks to modern technology and social media people can stay connected with their loved ones. “It’s made a massive difference for us,” says Laura. “Saskia and I see each other every week at football. Without WhatsApp or video calling Saskia’s world would be very isolated.”
Laura and Saskia
GROWTH
Tackling isolation is the main aim of the buddy scheme, but for Saskia it has meant so much more, Laura explains: “I feel so lucky, it’s really nice to see Saskia setting new goals, achieving them and learning new social skills: she’s come on leaps and bounds.” Gig Buddies has made a positive difference in Saskia’s life, but Laura believes it has been more beneficial for her. Over the last three years Laura has learnt what it can be like to live with a learning disability, she explains: “I didn’t realise what a big gap that could form and it gets super lonely. “I have a deeper understanding of what daily life is like, it shouldn’t be different but unfortunately it is for some people.” Now, Laura would urge more people to utilise the scheme: “To see someone that you are friends with and have brought through all these experiences achieve so much, it’s one of the best things I’ve ever done.” FOR MORE INFORMATION
Discover more about Gig Buddies and how volunteering could benefit you at www.gigbuddies.org.uk
All-New
Renault CAPTUR Your choice, your CAPTUR
To find out more about our award winning All-New CAPTUR range visit renault.co.uk/CAPTUR The official combined fuel consumption figures in mpg (l/100km) for the All-New CAPTUR range are: 42.8 (6.6) – 58.9 (4.8). The official CO2 emissions are 148 –124g/km. WLTP figures shown are for comparability purposes. Actual real-world driving results may vary depending on various factors including any accessories fitted after registration. Renault UK Limited is a credit broker (not a lender) in relation to financial promotions. To qualify for the Motability Scheme you must be in receipt of a Higher Rate Mobility Component of Disability Living Allowance (DLA) the Enhanced Rate Mobility Component of Personal Independence Payment (PIP), the War Pensioner’s Mobility Supplement (WPMS) or the Armed Forces Independence Payment (AFIP). The Motability Contract Hire Scheme is administered by Motability Operations Limited (Registered Company No.1373876), City Gate House, 22 Southwark Bridge Road, London SE1 9HB. Full written details, including terms and conditions, of the Motability Scheme are available on request from Motability. For details visit renault.co.uk/motability
17907_REN_CapturFleet_297x210mm_Enable_1.0.indd 1
14/07/2020 16:13