When Michael J Fox was diagnosed with Parkinson’s Disease aged only 29, the world was shocked to see a high-profile celebrity struck down with such a cruel condition.
At the time, few probably realised that Parkinson’s could affect someone so young. Again, when Muhammad Ali revealed he had the condition, diagnosed aged 42, there was widespread anguish at his plight at being diagnosed at such a young age.
But the harsh reality is that, while these two cases attracted huge attention, this is happening to people around the world every day. Figures from Parkinson’s UK suggest a rising population with the condition – currently standing at 145,000, with 1,757 people aged under 50 living with the disease.
These are known as Young Onset Parkinson’s Disease (YOPD) cases. Although they officially represent 1.2 per cent of cases, misdiagnosis is common due to the persisting misbelief that people are simply ‘too young’ to have the condition. While symptoms are broadly the same as with Parkinson’s, around 30 per cent of people with Parkinson’s never present a tremor – viewed by many as a definitive sign.
Gaynor Edwards was 42 when she was diagnosed. The charismatic owner of a PR and marketing firm in Tunbridge Wells went to her GP after two incidents which made her think she should seek medical attention – but Parkinson’s was still not immediately seriously considered because of her age.
“I had a frozen left shoulder, then things started to happen which I thought ‘that’s not right’. I drove an automatic car, so never had to worry about operating a gear stick, but on one occasion a friend parked my car for me and I couldn’t get the handbrake off,” she recalls.
“Then I was in a work meeting with a local councillor, which is something I’ve done many times and doesn’t faze me. All of a sudden my left hand started shaking like the clappers. I wasn’t nervous, certainly not to make me shake like that anyway, I just didn’t know what was going on. But of course in young onset, people don’t always display the tremor that is so associated with Parkinson’s, it is more commonly sparked by anxiety.
“I went to my GP, who was just about to retire and had seen it all before. While he did raise the possibility of Parkinson’s, he said my reflexes were too good for it to be Parkinson’s. I then went to a neurologist, who also said my reflexes were too good for it to be Parkinson’s. The nurses who were there were saying ‘It won’t be Parkinson’s, you’re far too young’ but nine months later, following a DAT brain scan, I was given the diagnosis. Needless to say, the bottom fell out of my world.”
Shocked by the lack of specific support given to young people with Parkinson’s, with no counselling or real support offered, just a “huge unfriendly folder of information targeted at older people”.
Gaynor was further troubled by the response from some quarters when she announced her diagnosis via her company’s Christmas newsletter.
“Some of my clients were great, but others dropped me like a stone. I presume they no longer thought I could do a great job for them. But the truth was I still had a living to make, I wasn’t about to drop dead – Parkinson’s doesn’t really impact on life expectancy – I wasn’t about to lose my mind, and of course I was still able back then to continue working. I was left questioning whether I should have told people or should have kept my diagnosis to myself. And that is not right,” she says.
Channelling her marketing and publicity expertise and frustration at the situation towards bringing about change, Gaynor created Spotlight YOPD, a UK-based charity with a global reach specifically for people with YOPD, to offer them the support and information they need to have confidence in themselves and their futures and their ‘Parkie Power’.
Since officially launching in January 2016, it has helped to support people of all ages, genders and professions. Among those working with Gaynor is 24-yearold Jordan Webb, who holds a Masters degree in psychology and is currently the youngest known case of YOPD in the UK. Another is Vicki Dillon, who took part in the recent GDNF trial and was featured in the BBC TV documentary on the pioneering brain treatment that aims to restore damaged neurons in Parkinson’s cases.
“One thing we all want people to understand is that we don’t have Parkinson’s, we have YOPD, and that’s very important. We don’t want to be seen as having this ‘elderly condition’ as we have to live with this for the next 30, 40, 50 years or more. The stigma needs to change, and not being seen to have an ‘old people’s disease’ will help with that. This is a hidden and sidelined community, there are no organisations really looking after us, so many feel abandoned,” says Gaynor.
“People are seen by geriatricians who don’t always necessarily understand YOPD, so aren’t always able to give the best advice. Even within the medical profession, as I found myself, you find Parkinson’s is written off as a possibility as the person seems too young to have it. But they could have YOPD, as that affects people of any age – the youngest diagnosis we know of is a two-year old in the States, while in the UK one of my YOPD friends was diagnosed at just eight. This is classed as juvenile onset so there is clearly no such thing as being too young. We need genetic testing on diagnosis to help us learn more about this.”
Gaynor believes empowering people with information – which includes people with YOPD, clinicians, researchers and the public in general – can help to bring about change. “I think when you are diagnosed with Parkinson’s, or more accurately with YOPD, you are so floored by it that it’s easy to just be accepting of your lot.
But we want to help people to have the confidence to ask for more, to say ‘this isn’t good enough’, to do their own research and find out where the best people and support are available, even if that means they have to travel beyond their local area.
“We need to say to people that no-one is going to care and understand about you and your situation more than you yourself, so get out there and find what is best for you. Check everything, if it doesn’t feel right to you then it may well not be,” she advises.
“But I think the way YOPD is viewed and the awareness there is among people in general is pitiful. I think people will presume that the same level of support is offered to us as it is to people with cancer or other conditions, but it’s sadly lacking. Counselling on diagnosis should be automatic, for both those diagnosed and their family. Depression is a symptom as well as a reaction to the diagnosis. Parkinson’s is caused by a lack of dopamine – one of the brain’s happy chemicals. On that basis, depression should not be too much of a surprising symptom.
“Suicide attempts are common in people with YOPD; mental health is a big challenge here. When you hear those words ‘You have Parkinson’s’ you cannot imagine the effect that has on people. There is no counselling being offered to help you cope. I went to my own counsellor, but I think it should be routine that there is someone there to help you process and better understand the reality of what you have to live with.
“There is no consistent diet advice, no financial advice, just an instruction to inform the DVLA, who will reward you with a three-year driving licence, and lots about palliative care – needless to say, that’s not what someone diagnosed with YOPD wants to read. Imagine you’re 26, you’ve got kids, you’ve got a mortgage to pay – you need to get your head around what has happened and you need help with that. I think many people expect we get support as standard, but we don’t, we don’t even get free prescriptions.” Gaynor also passionately believes YOPD should be given its own NICE guidelines.
“In 2017, they put out some information which addressed pregnancy and Parkinson’s, which must have been directed at people with YOPD barring some medical miracle.
“But while they acknowledge juvenile onset, YOPD appears to be sidelined, despite being recognised as a rare disease in its own right.”
As part of her mission to secure these badly needed changes, Gaynor is a vocal advocate, also working with fellow charity The Cure Parkinson’s Trust. She has attended major events including the fifth World Parkinson’s Congress – held every three years – in Kyoto in June, as well as the European Neuro Convention at the NEC in Birmingham, along with Jordan and Vicki.
“Events are often a great way of meeting and engaging with people, and I think the World Parkinson’s Congress is fantastic. There are clinicians and neurologists there, alongside patients. It’s very rare in a neuro convention that patients are so central.
“Not everyone likes this analogy but we are the talking lab rats – why would researchers not want to hear our perspective? The humility and humour of the patients involved is just incredible, and that is helping to bring about change in itself,” she says.
“At the NEC, as with many events there is a lot of white and corporate blue, but we rocked up with YOPD in big gold letters, theatre-style, against a red satin curtain backdrop.
“Vicky and I were dressed in our 1950s dresses with big underskirts and YOPD slogan T-shirts. We want people to notice us and acknowledge us, come and talk to us and learn about YOPD and the realities of it. We sat on the floor, including Jordan who is 6’2.
“People would come over to chat to us but wouldn’t want to sit down, the most common excuse being because of their knees – but when we said we all had Parkinson’s, they joined us.
“We are committed to changing things for the benefit of people everywhere. We live with it and know the many changes that need to be made, but the main thing that we want people to take from Spotlight is that they’re not alone.”
Spotlight YOPD launched its ‘DON’T PANIC’ card at the recent NEC event. Healthcare professionals are invited to get in touch to request this resource, which can be used to offer support to their YOPD patients.
See spotlightYOPD.org for details.
Parkinson’s is a key area of focus in NR Times. We cover the latest research breakthroughs, insight and personal stories related to this and other neurological conditions. Our readers include both professionals and families seeking the inside track on progress in tackling and better managing these conditions. Get your copy, filled with exclusive print-first content, every quarter for just £24.99 per year.
We’ll be soaring again soon
It’ll take more than a global pandemic to stop Accessible Dreams drawing up plans for more empowering trips in the not-too-distant future, as NR Times reports.
Two of the most powerful ingredients of Accessible Dreams’ work are the very things that are restricted right now.
Travelling to exciting horizons, and being able to hang out with friends new and old once there, are at the heart of the experiences the group creates.
And at the time of writing, one is currently impossible from the UK, while the other is enabled only in a world of separation, screens and clever apps.
But Nicola Cale, who runs Accessible Dreams, sounds surprisingly chipper when NR Times calls her.
Partly, she’s been bowled over by the enthusiasm and ingenuity shown by people in the group’s vast social ecosystem in staying connected and supporting each other.
But also, it’s given her a chance to reflect on the importance of the organisation’s work – and she can’t wait to help more clients onto the adventure trail with renewed vigour soon.
Accessible Dreams welcomes people with serious injuries and often complex disabilities into life-changing overseas experiences, like skiing, surfing and safaris.
Many individuals it works with would otherwise have given up on the possibility of such adventures because of the challenges created by their condition or injury. In reversing this, magical things can happen.
Nicola, who runs the organisation alongside fellow director William Sargent, says: “Going out and being in a different environment stimulates the brain differently. Being on the mountains, for example, already changes your outlook, so if you have a brain injury or disability and your world’s become a lot smaller, to change your environment is really important.
“So too are the opportunities to socialise with others in a group which looks beyond disability.
“Making friends with other people who may be struggling with different challenges in life can be empowering and help clients to better deal with their own difficulties.”
Through its annual trips, Accessible Dreams enables people to rediscover, or even discover for the first time, the social benefits of group travel and exploring the world alongside the challenge of the physical activity.
“The main thinking behind it is to show them that life can be good again. While a person might not be able to ski or surf in the same way they used to, we want to help them discover they can still do it.
“We’re not focusing on disability, we’re looking at what we can do, what can be possible. We want to show people that their dream is accessible and make adventures which are often assumed to be beyond reach become reality.”
Coronavirus travel restrictions unfortunately led to the group’s annual safari trip being postponed, although Nicola is hoping surfing can still take place later in
And, with skiing still scheduled for February and March 2021, planning and the search for new opportunities behind the scenes is in full flow.
The three services offered by Accessible Dreams – organised trips, helping people to plan their own holiday and supplying a crew member ‘chaperone’ to join a holiday – are still proving as in-demand as ever.
Despite all future travel being clouded in uncertainty, Nicola believes the current enforced isolation has only galvanised people in their desire to see more of the world.
“I have a theory, I can’t prove it, but it’s a theory of mine, that good brain chemistry can build new neural pathways. If you’re stressed and your daily routine
is the same all the time, you’re not making new connections in your brain, whereas if you’re going out doing new things, your senses are heightened.
“So it’s important that we continue to focus on that huge difference travelling can make and look to the future to get our plans back on track for later this year and next year onwards.
“Taking people on holiday, or using our resources and connections to help is absolutely something to look forward to and be excited about.”
Over the course of the many trips organised so far, Nicole has witnessed a steady stream of success stories from people who have fulfilled personal dreams, while changing their outlook on life.
On the most recent skiing trip, which saw 66 people visiting a French ski resort, a man who suffered a brain injury several years ago, which left him with very limited powers of communication, went skiing for the first time since his injury.
That huge achievement was compounded by the fact his support worker and friend was also able to join him.
“This particular guy used to be in the Army and we knew he was an adrenaline junkie before his brain injury.
“So we arranged for him to ski down the mountain in a sit ski. We found out that his support worker used to be in the military with him, so we arranged for him to go in a sit ski too.
“That was a special moment. It’s a cliché but you could see him light up, he was visibly brighter in his eyes, and also more upbeat afterwards.
“We also have a blind man who has now been on four ski trips with us and has learned to ski standing up. It’s incredible that he’s learned this new skill.
“That feeling of exhilaration, the speed and perception of danger – even though in reality it’s the safest it could be – has a really special impact on people.”
While the trips are primarily for the benefit of the person with the serious injury or disability, they can be equally important for family members and support workers too, says Nicola.
“You can see sometimes they’re a bit nervous about going on trips, so that’s why we offer the range of services we do, either arranging the holiday, helping to arrange someone’s own holiday, or having someone to send with you.
“Seeing a loved one being able to ski or surf and seeing the difference that makes to them, can be very emotional.
“I had one lady recently tell me that going on one of our trips with her son helped her to let go a little bit as a mother and to realise that people really did care – and that it was OK for her to take a step back. I thought that was brilliant.
“Her son also said about travelling as a group, ‘We went as strangers and came back as friends’ and that’s exactly what we want to achieve.
“We see it as building a community of people who have mutual experiences and common loves, and we have set up a WhatsApp group for people who are travelling so they can keep in touch afterwards. That’s been a really nice more recent addition to what we do.”
Each trip organised by Accessible Dreams is meticulously planned according to the bespoke needs of the participants.
“We want to take people to places that are unusual and appealing, but on a practical level, we make sure that whichever adventure we go on, there is a great hospital or medical centre nearby, and of course make sure the resort we go to meets our needs exactly.
“The ski resort in France we visit now knows us. They’ve got great resources, but we’ve also made sure their ski instructors are clued up on brain injury and have taught them about brain injury awareness.
“Also, we add in other aspects which are tailored for the group, such as having a rest day after a travel day.
“These are the sorts of things that package holidays don’t really factor in. So we might make a holiday for ten days instead of seven to allow some extra time getting over fatigue.”
Plans are also underway for trips, including those within the UK, that provide a more relaxing alternative to adrenaline-packed holidays.
Nicola is also hoping to arrange high-octane day trips as soon as the COVID-19 restrictions are lifted.
“If someone wanted to do a skydive, for example, we could look at that.
“There are also opportunities for cycling or walking holidays closer to home and we’ve got links to some adapted properties in the UK which could help with that.
“Also, we ran a fantastic ‘sensation’ vacation to France, with some alternative therapists joining us.
“We had good food, aromatic essential oils and all kinds of other things that indulged the senses of taste, touch and smell. That’s something we could look at doing in the UK once we’re allowed to move around again.”
Accessible Dreams has long been in the business of overcoming seemingly unscalable barriers. It looks like the current crisis will be just another challenge it rises to and ultimately leaves for dust on the road to another adventure.
The MS secret that sparked a movement
“It’s not the cards you’re dealt that matters, it’s how you play them that counts.”
For Jessie Ace, this is a mantra that inspires her every day.
It has helped her overcome her career dreams and confidence being shattered by her multiple sclerosis (MS) diagnosis, and underpins the positivity that now enables her to inspire so many others with chronic illness around the world.
Through her DISabled to ENabled podcast, Jessie has built a global following of people who turn to her for inspiration, after turning around her life and outlook since being told she had MS at 22.
When the news was delivered, she had just graduated from university, was embarking on a career as an illustrator and had even clinched a book deal.
“I suddenly felt I had lost my purpose,” she says. “I had a degree that meant nothing, the business I’d spent two years painstakingly building up was gone, and I couldn’t be an illustrator which was my dream and what I had loved doing since I was a little girl.
“At first I woke up one morning paralysed down my left side, completely out of the blue, but then later I lost use of my right hand too.
“It was the worst time of my life. As a student, I had these ideas that great things were going to happen, but then it was all over.”
Then came the bewildering search for answers.
“The worst part was not knowing where to turn, or who to turn to. The lack of information about MS in general was really bad, but there was nothing for young people, nothing for a young person to relate to who had just been given this devastating news.
“I knew nothing about MS and the doctor who gave me my diagnosis just told me to Google it.
“There wasn’t even a leaflet, or any advice, recommendations on who to speak to, nothing.
“As you can imagine, I found every negative story there was through my searches online and it was very scary.”
Finding other young people experiencing what she was going through also seemed impossible.
“There are local MS support groups out there, but that did not feel like the place for a 22-year-old to be.
“Everyone else there was much further along in their MS journey, people were in their 50s and some were in wheelchairs, and the outlook immediately became really scary.
“The idea of what I thought my future would be really freaked me out and I became really depressed about it.”
Determined to get on with her life, Jessie took a job as a glass collector in a local club, then went back to university as a student ambassador, before finding a job as a graphic designer in fashion. But all the while, she kept her MS totally to herself.
“I didn’t tell anyone. You would look at me and think there’s nothing wrong with me as I don’t look ill. That is the thing with hidden illnesses like mine.
“I didn’t want to be pitied, or for people to make judgements, or to say ‘don’t lift that chair’. I just wanted to be me.
“I realised that the five people closest to you can shape your outlook and those around me gave me the support I needed.
“When you have a bad day, to have people close to you telling you that you can do this, you can get through it, tomorrow will be better, is so important.
“I also came across a book called ‘The Miracle Morning’, which helped me to build a positive mindset. My whole perspective on life began to shift.”
Spurred on by her wish to help support young people in her position, and with her new-found positive approach, Jessie began to share her experiences online.
“The way I got started building my confidence was by sharing my story on Facebook Live videos about four years after my diagnosis, while working on a wedding business. I’d never told anyone really about my diagnosis, so that was a scary thing for me.
“I mentioned on a video one day that I had MS and the response astounded me.
“Brides-to-be started asking for my advice for how they could navigate their wedding day with an invisible illness, how they could ‘pretty up’ their wheelchair or even how they could disguise their oxygen tank into their wedding dress.
“Before I knew it, people began reaching out to tell me about their illnesses.
“They said they had not shared their stories with anyone before, because they thought people wouldn’t get it. It gave me an opportunity to help others and helped me come to terms with my own illnesses.
“That was when I realised that my story was bigger than me and that my experiences could help people.” From there, Jessie’s podcast was born, alongside a Facebook group inspirationally-titled ENabled Warriors, which helps newly diagnosed people and provides a forum for those who don’t feel like they fit in with traditional groups.
Through its uplifting approach, thought-provoking content and often celebrity guests, the DISabled to ENabled podcast has become a hugely popular outlet for people young and old, with a loyal and growing following across the world.
“It absolutely makes my day to hear from someone that the podcast has helped them. I have been where many of them are, where they feel it is the end of everything, but sometimes it is just knowing that someone understands, and is there, that can make all the difference.
“Most podcasts like this are American, and I know a lot of people like that we are in the UK.
“Changing the support available for young people with MS is something I feel very strongly about, and we do have a lot of young people who interact with
us, but also a lot of older people too.
“I think for older people they perhaps haven’t had the chance to access something like this, so I know it has been welcomed.
“I want to help people have the confidence and the voice to share their experiences and their stories in the right way, as I know from my own experience how much this can help.”
Jessie, 29, is also teaching people how to make their own podcasts and plans to create a course which helps people to express themselves through writing, social media and the global online community.
She is also about to launch a book for people to use as a diary and planner, to keep a record of relevant information for themselves and medical professionals.
“I’ve created this for people to keep track of how they feel, their medication, hydration and the exercise they’ve done and there are daily sheets to complete.
“This can be really valuable to take to hospital appointments or your healthcare practitioner, instead of having to remember what you did on this specific date, you can have a record of it. It will hopefully lead to more productive appointments and outcomes,” she says.
“I have also taken inspiration from the book that helped me so much, The Miracle Morning. You can visualise how you want your day to go and the person you want to be.
“There are a series of ‘I am’ statements which can help shape your whole outlook for the day – to keep in mind that ‘I am confident’ or ‘I am full of energy’ can help you adapt mentality and give you a renewed focus, instead of thinking you are tired or today isn’t quite what you’d hoped.”
Having established herself as a prominent MS campaigner, Jessie has also become a writer and illustrator – reviving the dream she thought was lost – for many of the world’s biggest MS charities including the National MS Society, MS Society UK, Shift.MS and MS-UK.
She has also illustrated for Momentum magazine, MS Matters and New Pathways. From the dark days of her diagnosis, for Jessie, the future is full of positivity.
“When I was first diagnosed, I didn’t cope. I believed my life was gone. But now, it does feel great to be able to share my experiences with people who are just as scared as I was, and show them there is a way through, you can do this.
“Anyone who knows me will tell you I love quotes, and one that really resonates is ‘It’s not the cards you’re dealt that matters, it’s how you play them that counts.’ I think that’s really important.
“Having MS is not the end of anything, although it may seem it, and you are still capable of doing absolutely anything in life. Sometimes you just have to be a little more creative to learn how to do it. Once you get past that, don’t take ‘no’ for an answer.
“Never let anything stop you from what you want to do.”
Listen to Jessie’s podcasts at https://mmini.me/dtepodcast. Her book and planner will also be available via the website https://mmini.me/blog following its launch in April.
Working your way back after injury
Returning to work after a brain injury can be a long and daunting road. Here brain injury survivor Dean Harding discusses his own experiences with Irwin Mitchell employment lawyer Emilie Cole and occupational therapist Mandy Richmond.
After being assaulted in 1998, Dean Harding’s life was turned upside down. Years of rehabilitation followed to help him cope with his traumatic brain injury. But the world of work seemed a place he would never return to, believing that he “wasn’t capable”.
However, the birth of his son 17 years later changed his whole outlook on life.
“I didn’t want him growing up thinking, ‘why isn’t my dad working?’,” remembers Dean.
“Most people work, or they’re supposed to. It gives me a sense of feeling like a ‘normal’ person, although I’ve still got my disabilities.”
Dean was given a job as a peer support worker with Headway London; helping other people whose lives had been affected by brain injury.
The fact he was now in employment also enabled the purchase of his first house. For Dean, providing for his family in this way, and overcoming his own personal battles, were huge achievements.
“Because of the disabilities, it’s portrayed that you’re useless, you can’t do anything. I don’t know if he was trying to kickstart me into doing something, but my neurologist said I would never have a meaningful job. To me I’ve now got a meaningful life, so I sort of blew him out of the water,” he says.
Emilie Cole, (pictured above, to the left) an employment specialist with Irwin Mitchell, says the ability of someone with a brain injury to secure a job which also takes into account their needs and requirements, is a huge boost.
“The psychological element is probably more important than anything else, that sense of being purposeful, productive and contributing towards society,” she says.
Dean agrees. “I feel more normal. I feel like a member of society. So I can join in conversations where people are talking about work. I just used to sit there and I couldn’t get involved in the conversation because I didn’t work. And now I can get involved.”
Through her role as an occupational therapist, Mandy Richmond works with many people with disabilities to encourage them to return to some form of vocation.
“I think the best is if there’s a fit between the individual with a disability and the work itself.
“So to me, if there’s a right fit, the psychological benefits would be amazing. If there’s the wrong fit however, if the hours are too long, if their start time is too early, that person with a disability can actually feel under pressure.”
Emilie believes being honest with a potential employer from the first dealings with them is an important place to start.
“I always advise clients to be open and honest and disclose their disability from the outset, then you can talk about what reasonable adjustments you need to support you in the interview and application processes, because legally under the Equality Act you’re covered as an applicant.
“So not just once you’ve got the job, but also if there were things that need to happen in the interview and with the way the application form is set up to make it easier for you to have a successful potential application, then you should communicate that. And luckily most employers seem to be quite good at that initial stage, in my experience.”
Once a person with a disability has secured employment, their employer, through the Equality Act, has a duty to make reasonable adjustments to support them in the workplace, to remove any substantial disadvantage they face.
Emilie says: “Often it’s essentially an objective decision. What tends to happen is that occupational health will be involved, medical professionals will be involved, but it will unfortunately come down to the employer to look at what those adjustments are and whether they can reasonably action them in terms of the workplace.
“For example, things like a staged return, later start time, earlier finish, breaks, all of that. That should be reasonable in any workplace, quite frankly. The difficulty is sometimes the mismatch between an employer understanding or taking on their responsibilities under the Equality Act and actually doing them to the benefit of that individual.
“Legally once an employer is on notice of your disability, then they have to make reasonable adjustments. But in real life, employers actually expect you to tell them what you need. So if you put it in writing and make it very clear to them what changes need to be made, they’re going to then look really bad if, in six months’ time, they haven’t made those changes.
“And unfortunately that’s where I will frequently come in and try and persuade them as best I can, and often we are able to do that. Sadly in some circumstances we can’t, and that’s where we end up going to the Employment Tribunal.”
Dean can understand such a situation from his own personal experience.
“From a brain injury perspective, you don’t want to be told you can’t do something. There are many people who have just come out of hospital. They don’t realise the impact of what their brain injury is going to have on them but they want to go back to work full time,” he says.
“They just want to go back to the life they had before, because they can’t come to terms with their new life, that changed forever in 30 seconds, and they’re not willing to accept.
“They can end up in a vicious cycle where the mental health deteriorates, then it has an impact on their family life, and the family life then becomes fragile and broken.”
Mandy agrees. “The individual has to be aware of their own limitations before they can put themselves into that workplace environment. But you get lots of people with post injury who are desperate to get back to work.
“Very often [brain injured] people I work with have their accident and immediately want to return to work and will actually do that, [but then] cannot cope.”
Emilie says: “We do have this culture now where a lot of jobs are very stressful, very demanding, and if you can’t cut it, it’s ‘if you can’t take the heat, get out of the kitchen’. I think a lot needs to be done to educate people that actually with someone with a disability, you need to work with and support them in doing that job and not just sort of discard them.”
Mandy adds: “Over the course of my career, of about 25 years, there has been a very positive shift in the UK, towards having a greater understanding of people with disability. I wonder if that also came through from the Paralympic sports and the growth within that industry and people’s attention drawn to that. Although things are not perfect, it’s certainly moving in the right direction.”
For Dean, his life was completely transformed through securing employment, and particularly in such a rewarding role.
“The role I’ve got as a peer support worker as part of the casework team, was made for me. I love it. I go into hospitals and support the families and the person, when they’re tearful I can give them hope. They think, ‘oh, so there is light at the end of the tunnel’. It took me years to get where I got, 17 years to get a job. So never say never.”
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