Between December 2023 – January 2024 we asked the cerebral palsy community in Scotland to share their experiences of social care and Self-Directed Support through completing a survey.
It was clear that many are facing a range of challenges when they access social care services and Self-Directed Support.
Key findings from the survey include:
- Many adults with cerebral palsy (33% of respondents) are relying on family and unpaid carers to support them.
- Half (50%) of respondents were dissatisfied with their experience of being assessed for social care, while 35% were satisfied.
There were a variety of reasons given for feeling dissatisfied with the assessment process, including that it was seen as too slow, overly intrusive and inflexible. Some carers felt unfairly judged by professionals who were assessing, and some people with cerebral palsy also felt misunderstood.
- Half (50%) of respondents felt that their care package doesn’t meet their needs, while 31% felt that it does.
Reasons given by respondents for feeling that a care package didn’t meet their needs included not being awarded enough hours of care, being too limited in what they were allowed to spend the award on, and not having the right services in the community to access using the award.
- Recruiting enough – or any – paid carers is the biggest concern amongst respondents
Specific challenges mentioned relating to recruitment included having a support budget that couldn’t be spent as staff couldn’t be recruited, the difficulty of recruiting staff when a person is awarded a small number of hours of care per week, and frequently changing staff teams impacting on care.
- Most people feel that their paid carers have the right knowledge and skills to do the job.
Commenting on the survey findings, Stephanie Fraser, CEO of Cerebral Palsy Scotland said,
“The findings from our survey echo very clearly what we have been hearing anecdotally for some time now from the cerebral palsy community in Scotland.
“As national discussions continue on health and social care and the proposed new National Care Service, we have already been sharing these findings with ministers and officials from the Scottish Government.
“Good social care services are fundamental to allowing those that need it to meet their basic needs, access day-to-day life, and maintain their physical and mental health. We can see the system isn’t working for many people with cerebral palsy, that a large number are still relying on family and unpaid carers to support them, and that the lack of paid carers is causing huge challenges in an already imperfect system. This is unacceptable.
“We will continue to ensure that the voices and experiences of people with cerebral palsy, their families and carers are heard at the national level, and to make the case for urgent change and improvement within these vital services.”