What the Involving People Network means to me
My name is Radha Nair-Roberts, I am 41 years old and I have Secondary Progressive MS. Though I was first diagnosed at the age of 21, the illness didn’t immediately affect me seriously – I’ve been able to travel, study for several postgraduate degrees at university, work as a scientist, marry and start a family. Unfortunately 2015 saw a major relapse in my neurodegenerative condition and since then I’ve experienced a progressive deterioration in my mobility. I can no longer do many of the things I once enjoyed or walk unassisted. To do normal everyday activities, I need to use a powered wheelchair.
Obviously the sudden deterioration in my condition came as a huge shock to myself, and my loved ones. My ability to do many mundane activities, which I’d taken for granted all my life, vanished. My family life changed forever too, as I could no longer physically care for my young children or participate in their activities in the same way. I had no choice but to give up my job as a stem cell neurobiologist and the salary that came with it, which was a financial shock to the system. I found myself spending more time at home with no real purpose and no intellectual connections with the community around me, beyond medical appointments and needs assessments from local government. Faced with pain and immobility, a sense of being worthless inevitably led to depression. I craved intellectual stimulation, a sense of purpose and a chance to work with like-minded people on a team again. Thankfully a chance to join the Involving People Network came up by chance, and joining IPN has given me all these things I yearned for, and more.
As a member of IPN, I have had an opportunity to learn about cutting edge medical research to help improve care and service provision for people in society suffering from illness, like myself. Better still, by signing up for research opportunities (advertised in the weekly IPN bulletins), I’ve become a member of a number of PPI (Patient and Public Involvement) panels. This means I get to attend meetings with actual researchers and health care professionals involved in medical research. I have been able to use my expertise and research skills to help steer research projects and service design. Far from being excluded as simply a “patient” or “member of the public” I have truly felt that my voice and my experiences as a patient are valued and can make a difference. I’ve had a chance to get out of the house for a reason and to meet new people, fellow patients and professionals alike. Being a member of IPN has helped me in so many ways: renewed confidence, purpose and social interactions and one of my greatest IPN experiences has been helping in the design and organization of this year’s Annual Meeting (Co-production: public voices in action).
I started my own community association - Exercise for All Wales (EfA Wales). One of the main difficulties faced by long-term disabled citizens like me, in Wales is the lack of access to genuinely inclusive fitness in the community. Able-bodied citizens can exercise with ease – they can go for a walk, a swim or take part in classes at their local leisure centre. For the long-term disabled (mobility impaired) this is much harder – venues for community exercise are not completely accessible and there is a widespread lack of staff trained to help the disabled to exercise. Exercise and fitness are very important to people suffering long term mobility impairment, as it is one of the few ways for them to manage their own conditions – regular exercise can improve muscle tone, stretch stiff joints, combat muscle wastage, and stave off secondary illness. Equally beneficial are the positive mental health outcomes – a chance to exercise regularly brings a sense of empowerment and social inclusion from participating in community activity. As grass-root advocates for disabled exercise we have been able to raise our voices: EfA Wales have so far submitted evidence to the Welsh parliamentary review of Health & Social Care, presented at several conferences (including an interactive Exhibition at this year’s IPN annual meeting) and met with health care professionals in government, such as the dCMO for Wales. We are also collaborating with Better, the company running Cardiff’s leisure centres, to improve their facilities for the long-term disabled. Achieving real change is challenging, so our work continues. It will not end till there is true equality of opportunity to access exercise for the long-term disabled.