By Emma Livingstone, CEO UP
We have had National Institute of Care and Excellence’s (NICE) guidelines since 2019, followed shortly after by Quality Standards in 2020. We have also had clear recommendations laid out in the All Party Parliamentary Group on CP’s report following their inquiry into the barriers to healthcare and wider participation in March 2022.
Yet when we contacted each of the ICBs across the country to ask them what their care pathway was for Adults with Cerebral Palsy, the response was disappointing. From the 42 Chairs written to we got 10 responses and of those that responded only one was able to produce any data and one requested a follow-up meeting.
We found ourselves in the ludicrous situation of having to lobby each ICB individually. Highlighting the needs of an invisible and needy population and urging them to at the very least to create a visible care pathway that adhered to best practice as set out by NICE.
And so it was thanks to Chris Streather (pictured above), Regional Medical Director for NHS London, that we found ourselves in a room in Putney kindly organised at The Royal Hospital for Neuro-Disability. Attendees included representatives from all five ICBs in London and representatives of NHS England including Steve Tolan, Deputy Chief AHP; Simon Barton, Medical Director for Special Commissioning; and Ruth Thomsen, Head of Clinical Science. We were also grateful to have representations from London Rehabilitation Medicine and The Royal Society of Speech and Language Therapists.
Chris Streather chaired the meeting and immediately set the tone by indicating that he did not view the meeting as a single event, but the beginning of a process, one that aimed at improving care and levelling up services for Adults with Cerebral Palsy across London. His ambition shared by all the invested participants was to identify a model of care that could be, in time, mirrored across the UK.
The morning consisted of presentations that laid out the case for change – highlighting the needs of the community from those that live with this lifelong condition, and the rich research data. Models of good practice from within London and overseas were explored, showcasing the art of the possible. These were all enveloped by rich and fruitful reflection and discussion.
At the end of the meeting there was consensus agreement in the room, with our ambition for Cerebral Palsy to be viewed as a lifelong condition and the need for appropriate services for adults that supports their changing needs. Of course this was just the start of many conversations that need to take place and we are so grateful to Chris Streather for agreeing to lead those and ensure they happen. I believe that all who attended left the meeting feeling that we had adequately highlighted the health inequality for adults with Cerebral Palsy and were suitably galvanised to take action.