Claire Bell is fundraising on behalf of UP. Below she explains why she is so committed to campaigning for better healthcare for adults with Cerebral Palsy.
My name is Claire Bell, I’m mum to a 7-year-old girl who hasn’t stopped making noise since the day she was born. I’m also step-mum to two now fully grown adults. I live in West Yorkshire with my husband, daughter and Maurice our family dog who is loved by everyone he meets.
I’ve worked in social housing for the past 15 years in teams working with tenants who need extra support to live independently. I’m currently a Business Planning Officer for a large social housing landlord in the north of England. A big part of my role is monitoring and analysing performance as well as looking at ways we can improve service delivery to ensure we meet the needs of tenants.
I am one of the 130,000 adults in the UK living with Cerebral Palsy. As a child and young adult I have managed the challenges that this has presented most of the time. I gained a Political Sociology degree from Lancaster University, then returned home and got a job at our district council as part of a disability employment scheme. I spent my weekends in the pub and at gigs and summers at festivals with my friends. I was always the last one home even if this did sometimes mean full days in bed due to resulting spasm pain.
I started to realise how little support was readily available for adults with Cerebral Palsy when in my mid 30’s I became pregnant with my daughter. Up until this point I wrongly assumed the support was there but I just hadn’t needed it yet. I’d been having regular botox treatment since I was 18 so knew I was in ‘the system’, so thought my Cerebral Palsy and the impact of it on my pregnancy would be taken into consideration. However, I found it was never mentioned unless I raised it. When asking about how it could affect my pregnancy, I didn’t get real answers and wasn’t pointed in any direction of where I could get them. I did experience difficulties in labour that I felt were a direct result of my Cerebral Palsy not being considered or understood, but thankfully my baby was born healthy.
At 10 weeks pregnant I requested physio to help manage my mobility while pregnant and my referral was passed around departments for 25 weeks as I didn’t meet criteria for any of the teams. I was told by my GP that my needs were too specialised. I did manage to get my first physio appointment 3 weeks before having my baby.
The whole experience made me feel like I was the only woman with Cerebral Palsy to have a child, which I knew definitely wasn’t the case. I also asked about support with physical tasks, such as transferring my baby, but again didn’t receive any support. By this point as I started to worry that there wasn’t support out there and that if I kept asking for help that I would be deemed as not being able to cope and have my baby taken away. Luckily, with the support of family, I found ways of adapting things to ensure I could care for my daughter and managed well.
Since my mid-thirties I’ve started to notice a decline in my mobility with an increased number of falls and higher levels of fatigue. I am luckier than some in terms of already being under the care of a neurology consultant. However, it has been frustrating trying to understand the effects of aging for someone with Cerebral Palsy. It seems as though declining in mobility and health is an expected part of the condition, something that is not talked about but we are just expected to deal with. The lack of research into Cerebral Palsy in adulthood is staggering, so the support isn’t there to ensure that it is managed effectively to enable us to maintain our lifestyles.
I will continue to fully support the work of UP to ensure that coordinated support is available to every adult with Cerebral Palsy to enable them to maintain their independence and live the life they want to.
If you would like to fundraise for UP, and would like support, please get in touch.