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How do we tackle the mental health burden of living with a physical disability or long-term illness?

Introduction

My name is Radha Nair-Roberts and until 2015 I was an academic researcher. However, after a severe bout of optic neuritis in my 4th year at Oxford University, aged 21, I was shocked to receive a diagnosis of MS. Despite this, for the following two decades health wise I was quite well – able to travel the world through my academic work, to obtain postgraduate qualifications, marry and then start a family right here in Cardiff. I felt incredibly lucky to have obtained a postdoctoral position at Cardiff University’s Brain Repair Group in 2011, investigating therapeutic stem cell transplantation as a cure for Parkinson’s disease. Then in 2015 disaster struck. Following a series of serious, progressive MS relapses I found myself with an acquired disability which struck overnight, paralyzing the left side of my body, leaving me unable to walk, work or care for myself and my family. I went from working as a scientist trying to cure a neurological illness to having no job, forced to live with the devastating consequences of having a serious long-term neurological condition myself.

In this blog I hope to share with you the knowledge I have gained in my struggle to cope with a very different reality since becoming disabled. My shell was well and truly shattered through illness. However, thanks to organizations such as Health and Care Research Wales (the Involving People Network), I have found new ways outside the lab to use my skills and be a meaningful part of the biomedical research community again. One of the most meaningful experiences I’ve had to date has been being part of the Traumatic Stress Research Public Advisory group (Division of Psychological Medicine and Clinical Neurosciences, Cardiff University). I’ve been able to comment on actual research ideas and the planned conduct of public-facing studies, all whilst meeting a group of inspiring people – members of the public, clinicians, and researchers alike. Being welcomed and respected again in an academic setting has made a huge difference to me, giving me the confidence to overcome disability, illness and think like a researcher again. As you’ll see below, instead of feeling miserable and staring at four walls all day, I’m now bursting with energy and creativity to formulate new projects and ideas, albeit in a very different field to cellular neuroscience. Hopefully, you won’t have seen the last of me as an academic yet!

A different perspective- it started with Exercise

After the drastic change in my circumstances, it quickly became clear that I faced many sad realities about living as an adult with a permanent physical disability. Whether innate or acquired through a long-term illness, having a physical impairment can bring stigma and isolation, primarily because of the lack of inclusivity in our communities. The way society is structured means that people with a disability are often denied the chance to participate in everyday activities, unable to take up simple opportunities that other able-bodied citizens take for granted. I became incensed about the lack of opportunities for wheelchair users like myself to exercise properly in municipal leisure centres in Cardiff (racks and racks of equipment, facilities and classes for the able-bodied to keep fit, but few or none for the physically impaired). In 2017, I felt compelled to campaign against this inequality and founded Exercise for All (EfA).

EfA is a community association with charitable aims run by and for disabled residents in Cardiff and their supporters. Through EfA’s campaigning work, we’ve achieved installation of Active-Passive motorized bikes suitable for wheelchair users in five of the eight Cardiff leisure centres (to date – we hope to achieve full coverage by the end of 2020). Wheelchair users can now access some of the exercise they need for better health, and specialist equipment as they please, in a public venue outside a hospital setting. Access to exercise is just one small piece of the puzzle, however, and it has become clear to me that lots more needs to be done to raise awareness of inequalities and promote better inclusion in our communities (on many levels, not just physical exercise).

Mental Health matters too…

Emerging from the greatest crisis of my life, I discovered that acquiring a serious physical impairment was like a serious traumatic event, from which I would never recover: I would have to live with the effects of this for the rest of my life. Almost overnight as my condition deteriorated, I was plagued with low mood, loneliness, low self-worth, depression and even suicidal thoughts in my darkest hours. I was not alone, as illustrated by a report from the King’s Fund and Centre for Mental Health (Figure 3), which shows how millions of people with a disability or long-term illness are affected in the UK.

The extent of trauma due to poor health and/or a disability doesn’t stop there. No ill or disabled individual is an island. His or her poor mental health is often shared with family and friends. Unpaid carers (6.5 million people in the UK in 2015), especially, bear the brunt, with the Carers UK Annual Survey in 2015 indicating that 78% of unpaid carers felt more anxious and a whopping 84% more stressed because of their caring duties.

Undiagnosed and Disregarded…

The mental trauma of having a serious physical impairment or caring for someone who does is often undiagnosed and disregarded. Treatments currently available on the NHS aren’t particularly cost-effective or appropriate for long-term issues (trust me, I’ve tried most of what’s out there). After trying short courses of talking therapy or medication, I realized that a person facing a lifetime of ongoing trauma can’t just be miraculously ‘cured’ using finite therapies. My work in the community, assisting both myself and others with physical disability through EfA, helped me realize that we need an entirely different approach to succeed in tackling long-term mental health challenges.

It is time now to recognize that mental health is not solely a medical issue: after all, man is a social animal. Could “social prescription” rather than just medical prescription provide a kinder, more effective way forward? Social prescription is a very topical subject and right now there’s a pilot study in the Welsh NHS underway (https://gov.wales/written-statement-social-prescribing-pilots-mental-health). Unfortunately, the approach that’s been chosen appears to be very much “top-down”, with all funding siphoned through “professionals”: experts, quangos and 3rd sector organizations with substantial financial skin in the game. I fear this misses the essence of what social prescription should be - not top down but rather patient and carer-led; something community-led, of the people, for the people. I’d even suggest that the whole concept of “prescribing” is in itself prescriptive. Rather than a top-down approach, we should instead focus on empowering the physically disabled and enabling them as free agents, to overcome barriers in their communities so they can design and participate fully in the activities they enjoy.

ESRC Festival of Social Science

We articulated our ideas on a new type of community-led social prescription in an application to the ESRC and were delighted to obtain funding to explore this new approach as part of the ESRC’s annual UK-wide Festival of Social Science. On 8th November 2019, EfA organized a half day event at Insole Court, in Llandaff, Cardiff to address the question: “Could community activities help improve mental wellbeing for people with a physical impairment and their carers?” During the half-day event we heard formal talks from a panel of experts, including social scientists, an NHS psychiatrist and people from the disabled community. This was followed by a free session of hands-on community activities led by professionals: participants chose from art therapy, Gamelan music creation or mindfulness meditation. All participants enjoyed the activities, and we collected feedback using a bespoke qualitative questionnaire. Responses were enthusiastic and quite poignant, showing we were definitely on the right track. People with a physical disability and their carers do crave more opportunity to overcome barriers and participate in the activities they enjoy. You can see some of our photos and data below (figure 4)

In conclusion

Growing up as an able-bodied person, I never envisaged that my life would turn out as it has done. No one ever expects to have to deal with serious illness and disability in their middle age. When faced with adversity, however, there is little choice but to adapt and make the best of one’s circumstances. Rather than seeing it as an end, I’ve now realized that having to live with a disability can be a new start. I am eternally grateful for the many kind and talented people who help me every day, especially my ever-patient, loving family, and fellow EfA volunteers. These selfless people have made it possible for me to continue contributing and to pursue new endeavours. No longer will I create neuronal stem cells in a lab to fix broken brains, but I can carry on trying to alleviate suffering by making society more inclusive and tolerant for people with disability like myself.

What happens next? Building on the findings from our ESRC event, we hope to obtain National Lottery funding which will enable us to design and deliver a number of community-led social prescription programmes aimed at improving inclusion and mental wellbeing of people with a physical impairment and their unpaid carers. The messages we received at our event, seen below, have reinforced the urgent need for a new approach to mental health care for those coping with long-term illness and disability. If you want to help with your ideas and expertise, you can check us out at www.efa.wales and get in touch with us (efawales@gmail.com). Watch this space!

“Art therapy today was wonderful. It would mean the world to me if it was regular”

“We need to raise awareness of disabilities in our communities and encourage existing community groups to be made inclusive”

“Public transport for all is a necessity”

“Having someone who is interested in you, who you can talk to, have coffee with, socialise with, maybe go to John Lewis coffee shop with. I would not be happy staying at home all day”

“If you had a regular programme of activities, I would be willing to bring a group up regularly from Swansea”

“have more of such activities and make public transport more accessible – I do not drive”

 
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