News & Blog Blog We all deserve a Sue for life: Parity of care for adults with Cerebral Palsy Every Thursday from the age of 7 until I was 16, my routine was the same. While others would be spending time with their friends or watching TV, I would come home from school, get changed, and my dad would drive me five miles to the local hospital for Physiotherapy. I disliked physio for several reasons: I did not see the point of it, a lot of the time (other than the weeks I got to spend in the soft playroom where I could swan dive into the ball pit) it was boring and doing stretches for an hour solid made my body ache. I had quite a few physios over the years, but the person I spent most of my time with was Sue. Sue was - at the time - in her thirties and always wore the same clothes whenever I saw her: white polo top, blue tracksuit bottoms and white trainers. Maybe she shared an affinity with Einstein and enjoyed the efficiency of the same outfit. Maybe she only wore the same clothes every Thursday and if I saw her on another day, she would be wearing something different. Who knows, I never did find out. I did, however, find out lots of other things about Sue. What her interests were, what tv shows she liked, where she had been on holiday that summer and so on. And she would always take an interest in what I was doing as well. I enjoyed spending time with Sue because always found a way to make something that I disliked doing bearable. A very special mention to the half-kneeling pose which I could never manage to perform and still cannot today. The half-kneeling pose is basically what you see a person do when they propose marriage. I remember Sue joking to me that I would need to be able to do half kneeling or else I would never get married. And to be fair to her, she has been right so far, so maybe I should have tried a little harder! Then when I reached adulthood, regular physiotherapy stopped. I was at University and considered myself far too busy to devote a week of my time to weekly physio when I could do exercises in my room. The same applied when I was in my early twenties and commuted into London from Essex and later Brighton for work. I had no energy after twelve-hour days, all I wanted to do was sleep. Then my health started to deteriorate. After dealing with chronic back pain for about 6 months, I was referred to a physio for treatment. In our first conversation, she told me that I would only be entitled to 6 weeks of sessions, and that if I needed any more, I would need to make another referral. When I asked why, she said ‘because you’re an adult’. Anyone who has had physio knows that 6 weeks of treatment usually does very little to solve the problem for anything other than soft tissue damage. Physiotherapy is a treatment that makes small, gradual changes over a long period of time because (especially in the case of someone with a disability) it helps to restore movement and function. And if these are lost or (as in my case) did not exist at all, then it needs to be a long-term solution. And yes, some people can do physio on their own following a set exercise programme, but this does not work for everyone. And it certainly does not compare to having those exercises performed by a trained medical professional who is able to track your progress week by week. I should point out that I am aware of my privilege around this. It was my choice to stop physio when I turned 16, people with more severe CP do not have that luxury, and some need daily intervention for the rest of their lives in order to live independently. But we are all in the same boat, once anyone with CP reaches adulthood, the care they receive becomes second class. In my case, my chronic back pain turned out to be degenerative disc disease. This was only diagnosed after I spent months on opiates waiting for a referral to a private pain specialist through the NHS. As a result, I was advised to move closer to my work, because I can no longer walk long distances. On bad days I walk with a stick. On my worst days I cannot walk at all and the slightest movement feels like a thousand knives in the back. If adults with CP had the same healthcare provision as children, then there is a good chance that the issues with my back would have been spotted sooner and I would not be in the position I am in now. And I say this as someone with relatively mild CP. There are 130,000 adults in the UK with CP, and I am sure all of them have a similar (if not worse) story to mine. But it does not have to be like this. The National Institute for Health and Care Excellence (NICE) has developed guidelines for Adults with CP. These guidelines go a long way to closing the gap in healthcare for adults with CP, but it has been over two years since their publication and the recommendations have yet to be adopted by the Government. The recommendations in the guidelines include (but are not limited to): regular reviews for adults with CP annual reviews those with a combination of CP and complex needs referring adults with CP to a team experienced in the management of neurological impairments if their ability to carry out their daily tasks deteriorates and, recognising addressing any personal barriers to accessing primary and secondary care for adults with CP. e.g., ensuring healthcare professionals have skills and training to overcome communication difficulties, treatment and support for mental health problems and access to advocacy services. These recommendations might seem obvious, but none of them are currently in place. CP is a complex lifelong condition which does not magically disappear when someone turns 18. To draw attention to the disparity in healthcare and as part of Cerebral Palsy Awareness Month, the charity Adult CP Hub has unveiled a set of mock ‘Second Class Stamps’ featuring six personalities from the worlds of comedy, acting and sport. The ‘stamps’ have been launched to raise awareness of how adults with CP are treated like ‘Second Class Citizens’ when it comes to healthcare. Adult CP Hub is asking the Government to ‘stamp out’ this inequality and insisting the NICE guidelines are adopted, to improve life for the 130,000 adults in the UK living with CP. In addition to the stamps, the charity is also asking people to visit https://you.38degrees.org.uk/petitions/care-parity-for-adults-with-cerebral-palsy and sign the charity’s petition. By World Cerebral Palsy Day on 06 October, the charity hopes to have 100,000 signatures so the issue can be discussed in Parliament. Subject to lockdown restrictions, it will also deliver its ‘petition on a postage stamp’ to Downing Street. Signing this petition and having the NICE guidelines adopted by the Government would make a huge difference to people with CP. It would give adults with CP the access to the same joined-up healthcare that other people with long-term disabilities have, which will give us all the chance to live happier and healthier lives. I want to finish by returning to Sue because I mentioned her for a reason. We did not know so much about each other by accident, it would also happen if you spent an hour with the same person every week for the best part of a decade. And since I turned 18, this is something that has never been replicated for me in any healthcare setting. I have spent the last fifteen years flitting from GP, to physio, to specialist and back again, having to explain my impairment and how it affects me repeatedly to the point of dissociation. At times it feels like I am not seen as a person, but as just another riddle for a different professional to try and solve in the brief time they have with me. We all deserve to receive joined up care and treatment by professionals who can spend enough time with us to learn about the person behind the impairment. Professionals who end up going the extra mile because they are given the opportunity to become invested in the ongoing wellbeing of the people that they care for. We all deserve a Sue. For life, not just for childhood.