As a child with Cerebral Palsy, I had countless hospital appointments. Mum and I used to joke that we might as well live at the hospital! There were weekly physio sessions, speech therapy and check-ups. The support and interventions to manage my condition seemed endless. I was given specialist shoes (which I hated but still), and wheelchairs and assistive equipment were provided. Then I became an adult and the support just stopped. It was as if the Cerebral Palsy no longer existed.
From Constant Care to Silence
Being an adult with Cerebral Palsy is lonely. The condition hasn’t suddenly gone away but you’re left alone to just get on with it. CP is typically caused by an injury to the brain and although this injury doesn’t get any worse, aging with Cerebral Palsy presents its own challenges. Muscles become even tighter, mobility becomes even more difficult and fatigue sets in faster than it did as a kid. And yet the system which once supported me in managing my condition has all but disappeared.
When I started to work full-time, I needed a reliable, outdoor wheelchair to get to and from work. My job involved attending and organising events so I needed to get around reliably. The NHS wheelchair service only offered me what they had hanging around – a second-hand, indoor chair which had definitely seen better days. When it continually broke down, leaving me stranded in the street, they refused to accept it was unsuitable. I had to miss many days work simply because I couldn’t get there. I ended up having to purchase my own wheelchair which was tailored to my needs – and actually supported my back properly.
As an adult with Cerebral Palsy, I’ve had to manage several bouts of horrendous back pain – again, often leaving me unable to work or do anything other than sit on the settee. These periods have been extremely debilitating and the pain is relentless but I’m left to self-manage with over-the-counter painkillers and guesswork. The last time was so bad that I had to book a course of treatment with a private chiropractor who thankfully managed to get me back to “normal”.
Paying the Price: Managing Health Alone
In an attempt to avoid another period like this, I’m now working with a personal trainer several times a week. This isn’t a luxury – it’s an absolute necessity if I’m going to retain any kind of mobility as I get older. At the moment, I’m still able to get around the house without the wheelchair and I’m determined that this will remain the case for as long as possible. I also see a sports therapist once a month to try and ease the spasms which cause so much discomfort. I’ve had to find and pay for this support as it just wouldn’t be available otherwise. But why?
Cerebral Palsy doesn’t just go away at 18. It’s a lifelong condition and if anything, it gets harder to manage. That’s why I’m supporting this petition to get a dedicated adult CP healthcare framework in place. Adults with Cerebral Palsy need and deserve appropriate support to manage their condition. Please sign the petition if you can.