Over lockdown thanks to a connection through my blog, I had the fantastic opportunity to do some virtual talks for groups of physiotherapists and occupational therapists (OT) along with other individuals with CP and similar injuries. The physios and OTs were keen to improve the transition of patients from paediatric (child) to adult services so wanted to hear our stories and any advice that we had for suggested changes to the current process.
From my own experience the care I received for my cerebral palsy throughout paediatrics was fantastic with a dedicated supportive team and regular check-ups and appointments. I was advised of a transition appointment to meet the adult services team so I would have a point of contact but this never happened. Therefore as an adult I continued to do my own physio based on what I had been advised when I was 17 years old. When I did need specific help it was a case of going round the houses to finally get the help I needed. Unfortunately the funding and backing of adult services is not sufficient so they are limited in what is on offer.
I got a huge amount out of this opportunity to speak to physiotherapists and occupational therapists for a number of reason but above all the chance to give back and help the physios and OTs knowing that this would then help them to improve their practice and improve the lives of other children and families was so rewarding. They were so grateful to me and the other speakers for our time and for being so open about our experiences, I felt that whatever I said would have gone down well. This is also huge for my growing confidence in public speaking; as it was my story it was such a relief to know that no one could tell me it was wrong or to be judged.
The chance to properly meet other individuals with CP meant a huge amount to me. This was the first opportunity I have had to meet others in a similar situation. Throughout all my treatment and time with CP all my interaction has either been with healthcare professionals or fully able bodied people. Each of these amazing people at the workshop had their own inspiring story to tell but the realisation that I related hugely to their experiences was a breakthrough. Up to this point I had not realised that this sense of fitting in and relatability was not something I had realised that I missed. Prior to this point my relationships have all been with fully able bodied people. This has been fantastic as I have never felt any different to my friends and family, however, after these talks I realised how much there was for me to gain by interacting with others who had such similar and relatable experiences. It felt like I had validation and internal acceptance for the previous feelings of frustration, weakness and not feeling good enough. I have always felt fully accepted my by friends which I am extremely grateful for but the chance to realise I was not alone in my sense of difference was massive and not something I realised I needed.
From a physical perspective I have felt that I fall through the gaps when it comes to sports groups or teams, not good enough to fit with the fully able bodied people but not bad enough to take part in wheelchair sports so the chance to meet other individuals similar to me was huge; and to realise I am not be alone in this was so important.
Having heard feedback from physios, it gave me real hope that things are changing for the next generation, both in the attitude to paediatric treatment and the approach to transition into adult care so they can do all that is possible to help the patients and their families. It really felt that by hearing our own experiences, it would go on to make a difference to others going through a similar process