At Cerebral Palsy Scotland we continue to advocate for policy change at national level, pressing for everyone with cerebral palsy to have life-long access to knowledgeable, compassionate services and support.
Over the course of 2023, Cerebral Palsy Scotland participated in a number of umbrella bodies and organisations to raise the profile of the needs of people with cerebral palsy to service providers and policy makers.
As Chair of the National Advisory Committee for Neurological Conditions, our Chief Executive has steered the committee to encourage Scottish Government to continue to support the implementation of the Framework for Action for Neurological Conditions (2020-2025) and to begin identifying future priorities once the funding for the Framework has finished. Service providers across Scotland are being encourage to self-evaluate their services against Health Improvement Scotland’s General Standards for Care and Support for People with Neurological Conditions and submit their findings to Scottish Government by the end of March 2024. Cerebral Palsy Scotland will be conducting our own evaluation of our services, (so keep any eye out in the New Year to see how you can contribute to this work).
During the year Cerebral Palsy Scotland have also worked with the Managed Clinical Network for Children with Exceptional Healthcare, to look at how children with CP transition into adult services, the Health and Social Care Alliance to support their self-management programme and the Neurological Alliance of Scotland, who, following survey work, have drawn up five recommendations regarding the need for those who support people with neurological conditions to consider mental health and wellbeing needs within services.
Our Chief Executive has met with Ministers and officials, both in Edinburgh and London to discuss health data and the identification of people with CP. Together with other cerebral palsy organisations across the UK, we continue to call for the NICE guidelines for adults with CP to be implemented. (It is possible that the self-evaluation of services in Scotland will provide evidence that this should be addressed with some urgency).
Cerebral Palsy Scotland Look to contribute to government consultations as they arise. This year we have submitted evidence to the UK government on their Disability Action Plan and the SEND Improvement Plan. We have submitted evidence to the Scottish Government regarding the development of the National Care Service, the Adult Disability Payment (mobility component) and to the Scottish Parliament’s Economy and Fair Work Committee on the employment gap for disabled people. We have met with Social Security Scotland to understand how children in receipt of disability support payments transfer to adult disability payments.
The Scottish Covid-19 Inquiry has been in touch on a number of occasions throughout the year as they are keen to include our experience of the pandemic and the impact the restrictions had on people with CP and their families in the Inquiry. We have provided written evidence, our Chief Executive gave oral organisational evidence and we are meeting with the team preparing for a set of hearings on education and certification shortly.
All of these are issues that we will be continuing to monitor during 2024 to ensure people with cerebral palsy are represented and acknowledged.
