ISSUE 4 2019 • www.novadisability.co.uk
D I S A B I L I T Y
The POWER of LOVE Understanding the importance of companionship during recovery
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WELCOME
Hello, and welcome to the latest issue of NOVA Disability!
PUBLISHER Denise Connelly denise@dcpublishing.co.uk EDITOR Lorne Gillies lorne.gillies@dcpublishing.co.uk STAFF WRITERS Emma Storr emma.storr@dcpublishing.co.uk Saskia Harper saskia.harper@dcpublishing.co.uk DESIGN AND PRODUCTION Lucy Baillie lucy.baillie@dcpublishing.co.uk PRODUCTION ASSISTANT Lisa McCabe lisa.mccabe@dcpublishing.co.uk SALES Danny McGonigle danny.mcgonigle@dcpublishing.co.uk
Preparing for rehabilitation sessions in the hospital, or settling back into home comforts: adapting to disability is not linear. From the moment of your accident, or diagnosis, a flurry of emotions will be consuming you and your loved ones. There can be dark times, but there is guidance available no matter what stage of recovery you are in. Disability is unique for each person, and, it might surprise you to know, that only 17 per cent of people are born disabled. That means, of the 13.9 million people living with a disability, only a small group don’t know life any differently. That’s where NOVA comes in. NOVA is specifically tailored for people who have recently acquired a disability, or for those caring for a loved one with a disability for the first time – we answer all the burning questions you might have. How will I adapt without the insight of medical professionals? Is your home suitable for your new needs? In what way will your relationships change? Are you entitled to benefits? It can be overwhelming trying to drink in all the emotions, thoughts, and worries that come with an acquired disability. In this issue, we’re answering all those questions and much more. From adapting to prosthetics, getting back on the road, or preparing to return to work, this issue is bursting with content to help get you back on track. Make sure to check out our sister title, Enable Magazine (www.enablemagazine.co.uk) for even more advice, reallife stories, and interviews on all thing’s disability. Until next time,
Lorne Gillies, Editor
For more advice on adjustments and rehabilitation methods, follow us @EnableMagazine
ENABLE MAGAZINE www.enablemagazine.co.uk
DC Publishing Ltd, 198 Bath Street, Glasgow, G2 4HG Tel: 0844 249 9007
©DC Publishing Ltd 2019. 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.
EDITOR’S PICKS 10 PREPARING FOR DISCHARGE
Getting discharged is a mixture of emotions: what now? We discover everything you need to know when it is time to leave the hospital.
15 “NO EMOTION IS OUT OF BOUNDS”
Love is a many splendored thing, but sometimes managing love and disability can be difficult. A relationship counsellor explains why relationships are important.
30 A CONSCIOUS DECISION
Approaching his first anniversary of becoming disabled, hairdresser Andrew discusses why he chose to have his lower leg amputated.
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CONTENTS
What’s INSIDE SUPPORT
9 ADAPTING TO PROSTHETICS
15
A vital aid in an amputee’s recovery, we learn how to become acquainted with your new prosthesis.
18 TAKING CARE OF YOUR MENTAL HEALTH
There might be dark days during your recovery and that’s allowed. Taking care of your mental health is also integral for your recovery.
22 KNOWING YOUR RIGHTS
From benefits to the Equality Act, it can be hard to know where to start on the legal spectrum. We keep you right.
WORK
25 THE RETRAINING KNOWHOW
Your old job might not be right for your new needs, but there are plenty of organisations on hand to help you retrain.
27 GETTING BACK TO WORK
It can be challenging returning to work after a period of time off. One woman shares her experiences.
30
MOTORING
20 THE KEYS TO ACCESSIBLE DRIVING
6
Learning how to drive or simply getting back on the road, there are specialist instructors on call.
LIFE
10 PREPARING FOR DISCHARGE
The time has come to go home. What now? From discharge to home adaptations, find out about support on offer.
15 “NO EMOTION IS OUT OF BOUNDS”
Relationships change, especially after acquiring a disability. A relationship counsellor shares her advice on accepting your feelings.
22
REAL LIFE
6 A MORNING OF REDISCOVERY Personal trainer James Sutliff speaks about his journey of adapting to life with dystonia.
30 A CONSCIOUS DECISION
After an elective below the knee amputation, one man shares how his decision has improved his life a year on. 4 NOVA ISSUE 4
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REAL LIFE Waking up after a regular night out, James Sutliff ’s life had changed completely. Experiencing the initial symptoms of dystonia, James’ journey to diagnosis and adapting to disability began. Now, James is working to promote disability education
A morning of
REDISCOVERY
DIAGNOSIS
“Dystonia has changed my life completely in so many ways. From one day being a young, fit, rugby player with a good career, to having none of that was a pretty big shock to the system,” remembers James. After a normal night out, when James woke the next morning he put his symptoms down to a virus that would go away. As the weeks and months continued with no relief in James’ symptoms, it was clear there was something wrong. After four years living with the hardship of not knowing what was wrong with his body, James was finally diagnosed with dystonia. James adds: “It took me a while to accept this, and I went through a lot of difficult times.” Symptoms of dystonia include: uncontrolled muscle spasms or cramps, parts of the body twisting into unusual positions, uncontrolled blinking and difficulty speaking. Finding it challenging to speak, and the gradual loss of power in his hands, James had to make changes in his professional and personal life.
TRANSFORM
“I think the most difficult time was at the very beginning,” says James.
James uses his passion for the gym to help other disabled people get fit
PICS: ©INSTAGRAM/JAMES_SUTLIFF; DAN COLLINS
D
ystonia: a word that you might never have heard before. It was a word, and condition, that James had no knowledge of pre-diagnosis. Dystonia is a rare neurological movement disorder resulting in uncontrolled, and at times painful, spasms or muscle movements. Affecting one part of your body to your entire body, dystonia can start at any age. For James he was a healthy, active young man and in one morning, James began experiencing the first symptoms of dystonia.
“Getting used to not being able to CONFIDENCE communicate as I once could, was As an avid gym goer and former very challenging. My confidence rugby player, James understands definitely took a beating and it’s the importance of staying healthy taken a lot of years to rebuild and active. James enthuses: “The my confidence, but I am so gym has been my medicine, my much better now and have saviour and it’s something that You can follow adapted ways to help my not only occupied my mind, James’ journey speech to be clearer.” it also gave me confidence. on Instagram “My hands probably Yes, I have to make some @james_sutliff cause me the most issues, adaptations to my exercises as I find it difficult to do but when there’s a will there’s general day to day tasks such always a way. as writing, and getting dressed,” “Now, I just love to support others continues James. “But, again I have that are going through adversity, adapted and it is amazing what you as I have the first-hand experience can do when you’re put to the test.” on how much the gym and exercise Adjustments are integral to as a whole can help. Exercise not regaining your independence only helps from a physical aspect, and sense of self after acquiring a but, in my opinion, from a mental disability, or receiving a diagnosis. aspet, too. This is the most important For James, he has regular injections aspect, especially when working with of botulinum toxin, alongside individuals who are dealing with hand therapy to help alleviate the physical challenges daily.” symptoms of dystonia. Relieving Taking inspiration from his passion for sport, partnered with his own some pain, stiffness, and improving experience of disability, James now his movement: James is now working works to inspire and educate others to help others living with a disability in the gym to aid them with their by getting active. 6 NOVA ISSUE 4
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“I think there can be a lot of ignorance surrounding disability and I believe this is because of a lack of education” rehabilitation. “I am more than a coach or personal trainer; I am a friend, a support system, somebody that can help navigate people through the difficult times when they just want to give up,” explains James. “One thing I have learned in this whole process is that we are all capable of anything we put our minds to. It’s not easy by any means, but if you keep pushing forward there’s always a light at the end of the tunnel.”
EDUCATION
For James, acquiring a disability has made him reassess his life prior to diagnosis and he is now striving for improved understanding of disability, alongside acceptance. “I think there can be a lot of ignorance surrounding disability and I believe this is because of a lack of education. I think education around adversity and disability needs to start in primary school,” emphasises James. “I’ve been there myself. I’ve judged and I’ve turned a blind eye to disability and once had a very closeminded approach,” he continues. “I think the first-hand experience speaks volumes and this is what changed my perspective and gave me more understanding.” Working as a personal trainer to physically support people with disabilities, and as a disability advocate, James is taking his diagnosis and disability into the world to empower others. Attitudes in society and accessibility in the wider community is what makes a person disabled, not their disability. Education and understanding is imperative, and that’s why James is calling for change. “So, with that said: I think education goes a long way and it needs to start in school, there needs to be more integration not separation in the classroom. I believe this would pave the way for more acceptance and understanding where disabilities are concerned,” concludes James powerfully.
Discover more about dystonia by visiting The Dystonia Society (www.dystonia.org.uk) or the NHS (www.nhs.uk) can provide invaluable support. 7 NOVA ISSUE 4
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SUPPORT
Prosthetics are an essential aid to returning to normality, but the process requires time and patience. We speak to one amputee about his experience
Adapting to
Prosthetics F
rom the humble, yet sophisticated, ideas in the ancient pyramids of Egypt to World War I: prosthetics have been helping people for generations. And Paul is no different – left with constant pain in his knee after an injury while serving in the Armed Forces; after almost 15 years, Paul opted to have an above the knee amputation.
“It’s strange, you think you know all the questions before, then once you’ve had it done things seem quite different,” remembers Paul.
have a second socket, but it didn’t fit unfortunately.” Now, he is able to walk on his second socket.
PATIENCE
ADAPTING
After his operation in December 2017, Paul was given exercises to reduce the size of his stump before being fitted for his first prosthetic in May 2018. It was around six weeks until he could take the limb home, Paul adds: “It was a case of learning UNDERSTANDING to walk on it, doing steps Before his amputation, and bars until they thought Paul underwent Each body is I was stable to walk on multiple operations including a hip different and adapts crutches.” Adapting to a replacement. differently, you’ve prosthetic requires After the pain didn’t got to walk before patience from both the cease he turned to patient and prosthetist as veterans’ charity you can run your body adjusts. “After Blesma (www.blesma. surgery there’s a lot of org) for support. swelling that has to go down “They helped me before they can measure you up. find someone who would “With me they put liners in my understand the process that I’ve been first socket to pad it out as I started through and what I was dealing with,” shrinking down, rather than making a he explains. new socket every time.” Paul had the chance to speak with The journey to get his second other amputee veterans about their prosthetic limb has been bumpy, Paul experiences, leaving him feeling explains: “It got to around December prepared to become an amputee; but last year and I was supposed to the experience is always unique.
Paul would advise people in a similar situation to speak up if something doesn’t feel right. “It’s your body and only you know what’s going on,” he urges. “The prosthetists are great at their jobs, but its dependant on how much you can tell them.” More than a year after his operation, Paul isn’t at the end of his journey. “I’m taking each day as it comes, and it’s going to take a while longer,” adds Paul. “Each body is different and adapts differently, you’ve got to walk before you can run.” Adapting to a prosthetic can take time and is individual. For Paul, the process has been worth the wait.
Information and support with adapting to prosthetics is available from your prosthetist or a host of charities. n Limbless Association
www.limbless-association.org
n Finding Your Feet
www.findingyourfeet.net
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PREPARING FOR
DISCHARGE Getting ready to leave hospital after an extended period of time can be overwhelming. Especially when figuring out how to adapt to your new life. However, there is help in place to ensure you are supported every step of the way
L
eaving hospital can be a daunting process, but you should not be discharged until you are fully recovered, any additional support is in place, and services are ready to commence.
BASICS
Daily tasks, such as dressing, showering, driving or moving around the house can become more challenging after acquiring a disability: it’s important to manage your expectations, and accept that it might take some time to relearn how to do these tasks. Trying to do too much too soon, or repressing your new needs can lead to readmission, so it’s important to be upfront with yourself, hospital staff and family about the best way to move forward. Joanna Bresi-Ando has been an occupational therapist (OT) for over 12 years, and has experience helping patients move back home. “Some of the biggest challenges come from adapting to being back home,” explains Joanna. “Even if you really wanted to go home during your time in hospital, it can be hard to adapt to the fact that there aren’t doctors or nurses around anymore to reassure you. You receive so much emotional support in hospital, and suddenly you go home and none of that’s there anymore. That can be quite hard psychologically.”
ASSISTANCE
The hospital will assist with certain aspects of the move back home. For example, before you leave hospital, a member of staff should liaise with you, a family member or carer to ensure
“Even if you’ve really wanted to go home during your time in hospital, it can be hard to adapt”
you have enough money for short-term needs, you understand how to take any new medications and you have a large enough supply to take home. You should also be made aware of how to use any new equipment you will need, and your GP should be informed of your discharge. On the return home, a care plan will also be made available to outline what help you will be receiving, and contact details for care after your discharge. This plan should be reviewed at least once annually. “Even if you don’t accept any help upon discharge because you don’t think you’ll need it, write it down, because you’re not going to remember what people said to you in hospital,” urges Joanna. “Even if it’s just the names of websites, have it written down,
so that later on you can refer back to something you were given while still in hospital.” If you’re not happy with your hospital discharge, you are within your rights to complain to the NHS. For example, if you think you’re being discharged too early, or the best arrangements have not yet been made for your return home, you can let the hospital staff know and this should be taken into consideration. You can seek advice from the Patient Advice and Liaison Service (www.nhs. uk), or your local Independent Health Complaints Advocacy (www.seap.org. uk) service. It is important to know that there are a lot of people working to ensure your transition back home is as smooth as possible.
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LIFE
CARE
One of the most important things to consider before moving back home is whether you need any additional support. If so, this could mean you may need to look into hiring a carer or personal assistant (known as a PA). Again, this is something the hospital will help you with. Staff will assess your overall health, abilities, as well as your social life. You will be assessed separately to decide whether you’re eligible for financial support to employ a carer. “Having a carer often means people – who at first are strangers – coming in and out of your house, maybe up to four times a day,” explains Joanna. “Accommodating that and having to open up your house can be difficult
as it can feel like it’s not your house anymore.” Hiring a carer, you could feel a lack of control over the situation, or it may empower you to live independently again. Despite the challenges, carers provide a vital service, and there is no shame in admitting you need a bit more support. This move might be difficult to accept at first, but it is guaranteed to be beneficial in the long run.
ENCOURAGEMENT
The most important thing is that you’re happy, safe and comfortable in your own home after a period in hospital. And sometimes, it really is the little things that make this possible. “Make a list of what it is you want to be able to do when you go back home,”
advises Joanna. “This is especially helpful if you have been referred on to community rehabilitation services. There may be small things that are important to you and would make your transition easier. Think about the little things that will bring you comfort if you’re able to do them again when you’re home.” Leaving hospital can mark the start of a new beginning, and with plenty of support along the way, you’re bound to make a success of it.
Discover how Joanna can support your transition back home by visiting, www.steppingstonesneuroot.co.uk Or email, jo@steppingstonesneuroot.co.uk
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LIFE
HOME SWEET HOME
So, we’ve covered everything you need to know about leaving the hospital, but what happens when you get back home? And what if your home isn’t accessible to your new needs?
H
ome adaptations are a routine part of leaving the hospital, and there are plenty of resources out there that can help you identify the adaptations necessary for you to live comfortably.
AT HOME
One of the first things that will happen, before you’ve even left the hospital, is that an OT will carry out a home visit. Based on your new needs, they will recommend changes to ensure you can live comfortably with ease in your home. Most importantly, adaptations are key to regaining or maintaining your independence. Angela Gordon is an OT, and has over 20 years of experience, helping people move back home after an illness or injury. “When there is a need for home adaptations, an OT is one of the best people to talk to about options and equipment available,” explains Angela. “Understanding a client’s routine and daily pattern of activity in their environment is vital, so we can advise
Disabled Facilities Grant. The grant is means-tested, so will consider any income or savings that you or your partner have. Again, the amount you can be awarded depends on When there is a where you live in the need for home UK.
on the most efficient and effective way for a person with a disability to function in their home.”
FUNDING
Depending on the types of changes that need to be made to your house, you could be adaptations, an OT eligible for funding to OT SUPPORT is one of the best assist with the costs. “For major adaptations people to talk to Depending on where an occupational you live in the UK, your therapist will liaise with about options local authority may help architects and surveyors you make minor changes, representing the needs of such as new handrails, door the client and recommending handles or visual fire alarms. adaptations which are appropriate Councils in England will provide to meet the patient’s needs,” advises minor adaptations costing less than Angela. £1,000; this increases to £1,500 if The thought of leaving hospital can living in Scotland. In Wales, you could either be thrilling or nerve-racking. be asked to pay towards your minor But, one thing’s for sure: you won’t be adaptations, but the amount varies, alone in the process, and you can do it. depending on your personal and financial circumstances. For more major changes, such For more information on home adaptations to help as widening doorways, installing a you live independently visit, www.irs-rehab.co.uk, or downstairs bathroom and lowering contact Angela Gordon on, worktops, you can apply to the angela@irs-rehab.co.uk 12 NOVA ISSUE 4
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LIFE
“No emotion is out of bounds” Surrounding ourselves with loved ones is integral to a fulfilled life. However, at times, relationships can be difficult when accepting a new disability. Discussing our emotions is crucial, as relationship counsellor Rachel Davis explains
‘N
ormalising that no feeling is a bad feeling, but noticing that there are a very broad range of emotions is important,” is the key advice from Rachel, who works with relationship charity, Relate. “No emotion is out of bounds.” During the days, weeks, months, and years after acquiring a disability, it becomes even more important to keep loved ones close. But, sometimes it can
be challenging to let people in when you are internally trying to adapt to a new way of life whilst processing the wave of emotions that come with this.
DRAWBRIDGE
Rachel continues: “I’ve met people and sometimes they are withdrawing in a way of protecting their friend, partner, or the person they care about. It can be a coping strategy for both people, but they almost pull up the drawbridge in
not wanting to get hurt themselves and also in not wanting to hurt the other person. Sometimes, in a way, it is a sign of love to actually withdraw.” Across the UK, only 17 per cent of disabled people were born with their disability. With an estimated 13.9 million disabled people living with sensory, physical, hidden, learning disabilities or mental health conditions, there is an entire community on a similar journey to yourself or a loved one.
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LIFE However, despite a stronghold of experiences in the disabled community, acquiring a disability can be an incredibly isolating time. For the disabled person and their loved one. “For the person feeling left out, the person who didn’t want the withdrawal to happen, it can actually really help by addressing it,” encourages Rachel. “Instead of letting it go on and on, and feeling that the person is becoming more distant: try and have a conversation. Of course, this is not an easy conversation to have, but it’s better to try and name the elephant in the room.”
COMMUNICATION
The success of any relationship, be that platonic, parental, or romantic, is communication. After acquiring a disability, it is easy to fall into a cycle of continually discussing disability and how life has changed. However, increasingly talking about a new diagnosis or disability can become all-consuming, creating tensions. “With a friendship, it is looking at disability in a way that you want to be helpful and support this new thing that has happened to your friend. When it is your partner, I think it can feel more like something that is going to define your life as well,” continues Rachel. “The main thing I would say to the friend is to be able to show that you are able to talk about difficult subjects – it is important to show that it is not off limits. When it is your partner, I think it is quite different. You have your own needs to consider as well, it is important that you are able to talk about what impact this is going to have on us as a couple and on you personally.” Discussing disability or maintaining your usual routine, having a strong support network and reaching out can help both parties in the long run. From counselling as a couple or individual, continuing to participate in hobbies or encouraging your non-disabled partner to maintain their daily activities, to discussing highs and lows in a forum: there is guidance available for each person adapting to disability and love.
DISABILITY DATING Regardless if you’re currently happily when it comes to dating or adapting single or in a loving relationship, a current romantic pairing. Rachel dating or maintaining intimacy in adds: “If you’re feeling really low your relationships will soon cross about yourself and you’ve just been your mind. This is perfectly normal, recently diagnosed or readjusting, and just because you are now living then you might not be ready to start life with a disability doesn’t dating yet. Friends and family mean the exciting world can really help.” of dating and romance In any relationship, is locked off. loving yourself is There is a lot to be “In terms of the top priority. said about trying to dating: there is Relationships are focus on your own no right or wrong there to build on answer, it is all an already strong strength and your personal choice. You foundation that you personal qualities need to consider what have with yourself. It works best for you might take time to start personally,” emphasises dating again, but know Rachel. that if one relationship fails it “One of the anxieties is when to is not to do with your disability. tell people. That is going to depend “You might assume a relationship a lot on whether the disability is is not working out due to your visible or hidden. If you are talking to disability, but, many early someone online and you know that relationships don’t work for all sorts the first time you meet them you will of reasons it is being able to see the be turning up in a wheelchair, then broader picture and that relates to it’s more of a pressing issue. If a how you see yourself. disability is hidden, people could date “There is a lot to be said about you for a while before they know trying to focus on your own strength about it and you might want to keep and your personal qualities,” it to yourself.” concludes Rachel. Taking strength from present For more romantic advice visit relationships in your life is crucial www.enhancetheuk.org
Get relationship advice from Relate by visiting, www.relate.org.uk or email relate.enquiries@relate.org.uk 16 NOVA ISSUE 4
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SUPPORT
Taking care of your
Looking after your mental health is important no matter your circumstances. However, when adapting to your new life you may experience a wave of new emotions. This is to be expected, and you’re not alone
F
rom denial and mourning, to anger and shock – getting used to all the changes in your life after acquiring a disability can be overwhelming, and it is vital to consider how these changes affect your mental health.
ADVICE
Finding something that is achievable and enjoyable for you is important
“We all have mental health, just as we all have physical health, and problems with either can happen to anybody,” explains Stephen Buckley, head of information at mental health charity, Mind. “Our mental and physical health go hand in hand, so it’s not surprising that a high proportion of people with physical health problems, particularly chronic ones, will also experience poor mental health.”
down on caffeine, sugary drinks and alcohol can also make a big difference. “Exercise can be effective, and finding something that is achievable and enjoyable for you is important. Taking time out to relax, practicing breathing exercises and trying to get enough sleep are also helpful.”
SELF-CARE
SUPPORT
During this time, self-care is very important. It can be helpful to continue to do things that make you happy, as well as continuing to do the things you enjoyed before your acquired disability, wherever possible. “There are lots of things we can do to help improve our mental health and wellbeing. Regular meals are less likely to lead to mood changes associated with changing sugar levels,” advises Stephen. “Cutting
Of course, self-care isn’t just about bubble baths and face masks: it’s about taking care of yourself and recognising what is best for you. If you’re struggling to cope with your acquired disability, the best thing to do is reach out to people who can provide the support you need to get you back on the road to physical and emotional recovery. Dedicated disability charities such as Scope have their helpline (0808 800 3333) which can be called
between 9am-5pm on weekdays, for free, independent support, or even additional information about disability. If you’ve been involved in an accident or a traumatic incident you may be experiencing symptoms of post-traumatic stress disorder (PTSD). This can include flashbacks and nightmares, as well as emotional outbursts and a struggle to control your temper. If you think you might be experiencing symptoms of PTSD, you can contact ASSIST Trauma Care (01788 560800) for advice and guidance. Self-care might be the last thing on your mind while recuperating from an injury or illness, but it’s an important part of recovery, and sometimes, it’s the little things that can have the biggest impact. Mind www.mind.org.uk
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28/02/2019 16:14
MOTORING
The keys to ACCESSIBLE
DRIVING
Being able to drive is a large part of remaining independent. Getting behind the wheel after acquiring a disability is easier than you think, one adaptive driving instructor tells us why
J
ohn is an adaptive driving instructor (ADI) with the Regional Driving Assessment Centre (www.rdac.co.uk) and Driving Mobility (www.drivingmobility.org.uk). Both help disabled people to maintain or regain independent mobility through adaptations and driving lessons.
ASSESSMENT
The first step to getting back on the road is assessing your needs, John explains: “Myself and an occupational therapist sit down with the client. We discuss their medical needs and try to work out a method of allowing them to drive.” Next involves testing out different adaptations in a car. “We can work out alternative methods of learning to drive, like using hand controls instead of foot controls,” says John. “If someone is paralysed on one side of their body we can use different accelerators.” Support continues after any adaptations are in place. “We’re interested on how they get on too, because we want them to have as much independence as possible,” stresses John. Lessons are available with ADIs, like John, for new drivers or drivers who need to learn to drive with new adaptations.
CONFIDENCE
Being confident in yourself is one of the most important parts of driving and remaining independent, John says: “First thing I would say is relax: there are ways and methods to get behind
Living Allowance (DLA) or Personal Independence Payment (PIP). You can We want them claim this online and at your local Post Office to have as much (www.postoffice.co.uk). independence as The Blue Badge Scheme allows badge holders to possible park for free on the street. The badge can only be used for your benefit, but is valid if you are the driver or passenger. You can apply for a Blue Badge online (www.gov.uk) or through your local SPECIALIST authority. Having the right support could be the Utilising the support on offer means difference between being back on the road or never driving again. It is you’ll be back on the road before you vital that you consult an expert before know it. making any decisions, John advises: “One thing I would say to avoid would John with one of his students be going out and buying a car or getting it adapted without seeing a specialist first, that’s spending money on things you don’t need.” Financial help is available alongside lessons and adaptations. The Motability Scheme (www.motability.co.uk) provides grants to disabled people who cannot afford the vehicle or adaptations they need alongside the option to lease cars and other mobility equipment. Vehicle tax discounts or exemption are available if you receive Disability
the wheel again.” Learning to feel comfortable driving again is different for everyone. “It depends on each situation; some people get adaptations quickly, but for other people it might take them longer,” explains John. “It’s a confidence thing, someone might need more lessons than someone else.”
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Specialists in Spinal Cord Injury Claims We assist people with all levels of spinal cord injury. We help people all over England and Wales wherever they are based. We are a dedicated and specialist team, committed to making the process as straightforward as possible. We are know nationally for our experience and expertise in spinal cord injury claims and for our compassionate professionalism.
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To talk to us about your injury and how we can help, contact us on: Tel: 01788 557617 Email: jonrees@brethertons.co.uk (SI02)
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KNOWING YOUR
RIGHTS
There is a lot of support on offer after acquiring a disability, but it can also feel like information overload; even so, knowing your rights is important. We break down your rights and the legal support you are entitled to
Human Rights Human rights apply to everyone regardless of disability. In Britain your human rights are protected by the European Convention on Human Rights (ECHR) and the Human Rights Act (HRA). The ECHR is a human rights agreement by countries which belong to the Council of Europe. Not to be confused with the European Union, the Council of Europe and the ECHR are not affected by Brexit and these rights will still apply in Britain. The HRA influences the way public services are delivered to disabled people and makes sure that human rights are not breached. Human rights are based on the principles of fairness, equality, dignity and respect. They are about how public authorities, like the government, local authorities and hospitals, must treat you. Although all human rights apply to people with a disability, there are key points that are especially useful: the right to freedom from discrimination; the right not to be treated in an inhuman or degrading way; the right to life; the right to respect for private and family life, home and correspondence. Your right to respect for family life can be relevant if you are in danger of being separated from your partner, children or other family members. This can include public authorities providing care at home so that you can remain with your family rather than being cared for in a residential home.
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SUPPORT
PIP Personal Independence Payments (PIP) replaced what was previously known as the Disability Living Allowance (DLA). The benefit helps with the extra costs associated with a long-term illness or disability if you need support with daily living or mobility. Unlike other benefits, PIP is not means tested. That means it does not take in to account your earnings and only looks at how a condition affects you. You can apply for PIP if you are over 16 and have not reached state pension age.
UNIVERSAL CREDIT Knowing what benefits and funding you are entitled to can lift a weight off your shoulders
Equality Act The Equality Act (EA), previously known as the Disability Discrimination Act (DDA), was introduced by the government with the purpose of ensuring that minority groups are valued and treated as equal citizens. The act covers disability along with age, race, sex, sexual orientation, religion and belief, pregnancy and maternity, marriage and civil partnership, and gender reassignment. It places a duty on public authorities to promote disability equality. Effectively, the Equality Act sets out that disabled people are entitled to the enjoyment of all human rights, without discrimination.
The EA requires education establishments, employers and service providers to make reasonable adjustments so disabled people can take part in education, use services, and work. This includes your right to reasonable adjustments in the workplace, and incorporates assistive technology and flexible working hours, plus, more adaptations that will allow you to do your job efficiently. If you are discriminated against in education, by your employer or by service providers, and it cannot be resolved internally, contact the Equality Advisory and Support Service (www. equalityadvisoryservice.com) or your local authority (www.gov.uk).
CARER’S ALLOWANCE If you care for someone at least 35 hours a week and they get certain benefits, you could qualify for Carer’s Allowance. This is normally paid weekly at £64.60 per week. You do not have to be related, or live with, the person you care for to receive this. It is important to be aware that Carer’s Allowance can affect the other benefits you or the person you care for gets. If you are over 65 and have a disability that requires you to have help or supervision you could be eligible for Attendance Allowance (AA). This helps with the extra costs of someone looking after you. AA could cover the cost of a carer, personal assistant or loved one.
Universal Credit (UC) is payment to help with your living costs and will replace some current benefits like income support, housing benefit and working tax credit. This payment will come once a month. Eligibility factors include location, if you work, your age and if you have children. The amount you receive depends on your situation, but starts at £251.77 per month. UC is being introduced in stages across the UK. If you think you could be eligible for UC check with your local authority (www.gov.uk) for availability.
Benefits and funding If you have newly acquired a disability, knowing what benefits and funding you are entitled to can lift a weight off your shoulders. If you need to make changes to your home as a result of your disability, you could receive a Disabled Facilities Grant (DFG). A DFG is funding from your local council to make home adaptations. Adaptations could include widening doors, installing ramps or improving access to rooms and facilities. Improving access could mean installing a stairlift or a downstairs bathroom. This grant won’t affect any benefits you receive. If you are unable to work as a direct result of your disability, or need help to work as a direct result of your disability, you can claim an Employment and Support Allowance (ESA). In order to receive ESA a Work Capability Assessment will be completed. After this you will be given support including regular interviews with an adviser to help with job skills, or the opportunity to attend a support group. Other more common benefits include Personal Independence Payment (PIP), Universal Credit and Carer’s Allowance.
For more information and impartial advice visit Disability Rights UK (www.disabilityrightsuk.org) and Money Advice Service (www.moneyadviceservice.org.uk)
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WORK
The retraining KNOWHOW After acquiring a disability, it might not be possible to return to your current job. Changing your career path doesn’t have to be negative, or daunting, it is an opportunity to try something new that will better suit you and your health
R
etraining can mean changing your career path to something you have always wanted to do. Before you jump into a new job, it is important to consider what will suit your needs and what support is available.
PLANNING
Taking time to consider your next steps is essential when making a career change. Some career options are not practical, or require years of training, before landing your first job. There are a number of factors to take into consideration before retraining: your current skills and experience; what jobs are suitable for your health; what skills you need in order to get the job you want. Employability and skills assessments are a great way to narrow down your job search. They ask questions about your skills and interests, then identify what jobs and careers these can be applied to. Your local Job Centre Plus (www.gov. uk) can arrange a skills assessment or you can complete an assessment online with the National Careers Service (nationalcareersservice.direct.gov.uk).
TRAINING
Once you have identified the job you want, it’s time to get training. This is the exciting part. There are different types of training, but each individual course will vary in length and difficulty. Most college and universities provide short courses from administrative skills to cooking. The National Careers Service website allows you to search for courses based on subject, provider or location. Online learning is perfect if you want to learn new skills at your own pace. FutureLearn (www.futurelearn.
com) and the Open University Scope also run their Work With (www.openuniversity.edu) Me campaign, a call to action provide short and longfor business to help get term courses in almost more disabled people into Retraining can anything you can employment. mean changing think of. Some online Remploy (www. courses are even free remploy.co.uk) your career path to to complete. provides support and something you have Natspec (www. advice for disabled natspec.org.uk) is people looking to always wanted a service allowing get into work – read to do disabled people to search more about the support for specialist colleges Remploy provide on page 27. throughout England. Similarly, specialist job search When retraining it is important to sites like Disability Jobsite (www. consider your budget, whether you can disabilityjobsite.co.uk) are a great tool afford a specific course and whether it to search for jobs suited to your needs will be worth the money. from employers dedicated to employing and retraining disabled people. Disability doesn’t need to hold you SUPPORT back from pursuing your career goals. There are specialist sites and initiatives Retraining is the first step on a positive available to get and keep disabled people in employment. ladder of career development. The Support to Work scheme (my. scope.org.uk/supporttowork), run by charity Scope, is a digital employment For more information and impartial advice service providing disabled people with visit Disability Rights UK support on employability skills, writing (www.disabilityrightsuk.org) and Money Advice a CV, interview techniques and more. Service (www.moneyadviceservice.org.uk) 25 NOVA ISSUE 4
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WORK
Getting back to
WORK
During rehabilitation you might begin considering returning to work. This can seem stressful, especially after a significant period away, but with the right support from your employer, the transition should be as seamless as possible
I
f you’ve spent time in hospital recovering from an illness or injury, returning to work can be the last thing on your mind. Or, perhaps you’re raring to return to work, and back to a sense of normalcy.
JOURNEY
“The return to work is a very personal journey,” explains Kath Wood, disability training and consultancy specialist at disability employment and skills specialist, Remploy. “For some people the return to work can be a step towards normal life for them, which is significant and something to aim for. For others it can be difficult and cause some anxiety – particularly if there has been a prolonged absence.” No matter how you feel about getting back to work, it is essential that your employer provides you with the support you need to continue to do your role to the best of your ability. Gill Marriott was diagnosed with stress induced epilepsy when she was
37 years old, after having a seizure at work. Though her seizures are infrequent, Gill had another seizure in 2017. At the time, she was working as a nurse. The diagnosis meant that Gill would no longer be able to drive; something that her job heavily relied on. “I applied for support under a scheme called Access to Work,” explains Gill. “This meant that my employer had to contribute the same amount to my travel expenses as they would be paying me in mileage allowance, if I were driving. It also meant that The Department of Work and Pensions would top this up to cover the full cost of my transport.”
REASONABLE ADJUSTMENTS
Gill’s employer made what are known as reasonable adjustments. When you return to work after acquiring a disability, under the Equality Act 2010, your employer is legally required
to make reasonable adjustments, to enable you to continue to do your job to the best of your ability. “It may be necessary to change the duties expected of you – either on a temporary or permanent basis,” advises Kath. “This can be done by looking at whether parts of the role can be removed or re-allocated, but also by looking to maximise the existing or highlighted strengths of the individual – this has the added bonus of building confidence and motivation for work.” Changes may be physical, such as installing a visual fire alarm, or ramps and handrails; alternatively, there may be changes to your working day, including later starts, additional breaks or the option to work from home a few days a week. In Gill’s case, it meant funding her travel costs, to ensure she could continue to make home visits to patients. Adjustments are also available during the recruitment process: to ensure applicants have an equal
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WORK
“My personal experience is that employers are willing to meet their legal obligations” chance at receiving a job offer. For example, conducting a video call instead of a face-to-face interview, or meeting somewhere closer to the candidate’s house are all adjustments that can be made available. Through the Access to Work scheme, you should not have to pay for any of these adjustments to be made: your employer can apply for funding through the scheme and may also have to make contributions if the grant doesn’t cover the full cost of the adaptations. “My personal experience is that employers are willing to meet their legal obligations,” continues Gill. “However, the emotional and psychological support could be substantially improved.”
HELP
If you feel you’re not getting enough support after returning to work, the best thing to do is make your employer aware of this, and let them know exactly what you need to enable you to do your job. You can even ask a
colleague or supervisor to sit in on the meeting and advocate on your behalf, if you don’t feel comfortable doing it alone. You can also get professional, impartial advice from the Citizens Advice Bureau. Most employers are keen to go above and beyond to ensure their employees are happy at work, but it’s probable that they may need some advice themselves. Putting your employer in touch with your occupational therapist is a great way for them to understand exactly what your requirements are.
ADVICE
“Take your time with returning to work,” advises Yash Bedekar, an occupational therapist specialising in returning to work. “While you may want to go straight back, returning too soon is not ideal. Early ‘setbacks’ upon returning earlier can be detrimental to your progress, affect your confidence, and for employers, can increase their anxiety about whether you are able to do your job. Equally, being out of work
for significant periods of time can make your return challenging.” “Your return to work plan should be reviewed on a weekly basis between you and your manager,” agrees Kath. “This is to ensure it is effective, as the mental and physical effort required by work can often have an adverse effect on a condition during the early days back at work. This also gives a great opportunity for you to ask for help if required.” Work is very often a stabilising factor in our lives, providing us not only with structure and routine, but productivity and pleasure, too. With the right advice, support, care and motivation, you’ll be doing what you love in no time.
Remploy www.remploy.co.uk Yash Bedekar www.neuroworksot.com Citizens Advice Bureau www.citizensadvice.org.uk
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REAL LIFE
A CONSCIOUS
DECISION After being involved in a motorcycle accident, 47-year-old hairdresser Andrew was left with long-term pain in his left leg. More than 15 years later he had a planned amputation, paving the way for a life of normality
F
or Andrew, living in constant pain meant using a walking stick, being tied to pain killers and no hope of a normal life. Last February Andrew had his lower leg amputated. The operation transformed his life, he says: “It was incredible. Even though I was losing a leg, I was doing it to return to normal living.”
PASSION
SUPPORT
Andrew was impressed by how quickly his body adjusted when it came to pole dancing. “Some moves are physically impossible that I’ll never be able to do again,” explains Andrew. “Then some I can do better because there’s no leg in the way.”
Without the support of his teachers, returning to pole dancing would have been more challenging, Andrew says: “They understand the physicality of the body and when there’s a problem they know how to go around it.” Now a year after his amputation, Andrew is urging disabled people to return to their passions. “It’s about finding the right support network,” enthuses Andrew. “People going above and beyond to help you.”
“Even though I was losing a leg, I was doing it to return to normal living”
ONLINE
Documenting his journey online has helped Andrew adjust. “I’ve always hated social media,” he explains. “But it’s about telling the story and finding other people in similar situations.” Posting on social media platform Instagram has transformed how he thinks of himself, Andrew says: “I see people that become their imageries, I was my leg injury. Now I think I’ve gotten myself away from that. I’m really good at what I do and its incidental that I’m an amputee.” Everyone’s experiences of becoming disabled is unique. For Andrew, acquiring a disability has changed his life for the better.
PICS: © KNOCKING BIRD CREATIVE
Simple tasks like doing the weekly shop now have added value for Andrew. “I can buy more than what I can carry in one hand,” he explains. “That has been such a massive thing for me, just carrying two bags of shopping.” Before his operation, Andrew struggled to find exercise he could take part in and was living with depression. A year and a half before his amputation, he started pole dancing. “I couldn’t cycle or run,” remembers Andrew. “I came across [pole dancing] and realised it was almost tailor made for me.” Pole dancing quickly became an outlet and a passion for Andrew. After his operation he was keen to get back to training. “I was working again in two weeks, I started doing training again after 11 days,” adds Andrew. “In many ways my leg was holding me back, I was desperate to get back and start relearning things.”
Follow Andrew’s journey on Instagram @tattoo_pole_boy
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