Our latest Annual Review shows how Cerebral Palsy Scotland has made a difference to the lives of children and adults with cerebral palsy over the past year.

Read Annual Review 2023-24

Published on 6 October, World Cerebral Palsy Day, our Annual Review highlights the impact of the charity’s work between March 2023-April 2024.

This year, our new Strategic Plan 2023-2026 saw us begin work on four key objectives:

1. To be the voice of the cerebral palsy community in Scotland, to understand what matters to them so that their views and needs are represented at national and local forums and they have access to the support and services they need
2. To ensure anyone affected by cerebral palsy in Scotland is aware of Cerebral Palsy Scotland and the support we can provide for them
3. To enable therapy, support and information to be available for as many people as possible in Scotland with cerebral palsy through all life stages
4. To increase knowledge and understanding of cerebral palsy, the issues affecting people with cerebral palsy amongst professionals, service providers and policy makers

Some of the highlights from the past year include:

• Across the year, we saw 253 children and adults for specialist therapy, an increase of 28% on last year
• Spending over three months providing outreach therapy to children and families in Edinburgh, Midlothian and East and West Lothian through our Better Start programme
• Running 22 Baby buds sessions for children aged 0-2 and their families, providing expert input at a time when targeted therapies are critical in enhancing development
• Developing a ‘psychologically informed practice’, where mental health and wellbeing support is embedded in everything we do
• Training 184 professionals through five training courses, and welcoming 89 attendees to our cerebral palsy information sessions
• Raising awareness and campaigning for change, including through policy work and hosting our 10th annual Cerebral Palsy Scotland conference in October 2023

Read Annual Review 2023-24

With the general election to be held on 4 July, Cerebral Palsy Scotland is calling on candidates to pledge to improve services for people with cerebral palsy, as well as the data that underpins good service delivery.

There is no clear picture of who has cerebral palsy and where they live across Scotland and the UK, meaning that services cannot be well planned.

The lack of data on people with cerebral palsy directly contributes to the ‘cliff edge’ of care faced by children with cerebral palsy as they transition into adult services, and the lack of specialist healthcare services for adults with cerebral palsy.

Based on our participation work with the cerebral palsy community, our election manifesto contains four detailed asks of politicians that would improve services for the cerebral palsy community.

These include continuing to fund and expand the Cerebral Palsy Integrated Pathway (CPIP) database to cover all children in the UK and a call that the existing NICE guidelines for adults with cerebral palsy and those under 25 must be effectively implemented by healthcare providers.

Download our election manifesto

We will continue to raise these issues with candidates in the run up to the election, and beyond.

What you can do

We’re asking our supporters across the cerebral palsy community to bring Cerebral Palsy Scotland’s election manifesto to the attention of their local candidates and ask them to make people with cerebral palsy count by pledging their support to improve services and data.

It is with great sadness that we at Cerebral Palsy Scotland pay tribute to our former Chairman, Jim Campbell, who passed away on Sunday 26 May 2024.

Jim Campbell joined the board of the charity (then known as Bobath Scotland) in 2007, after spending his working life building up successful businesses in financial services.

He became Chairman of the Board in 2009 and served in that role until 2016. Jim made a significant contribution to strengthening the organisation throughout his tenure, and broadened its mission from being a charity that served the Glasgow area to one that served the whole of Scotland.

Jim initially focused on reforming the charity’s finances to ensure that the organisation was on a more secure financial footing, and subsequently brought together a strong board of trustees to support the charity going forward.

His leadership, contacts and negotiating skills were critical in securing a permanent home for Cerebral Palsy Scotland at Craighall Business Park. Jim also strengthened the charity’s governance procedures and to that end oversaw the transition to becoming a Scottish Charitable Incorporated Organisation (SCIO) in 2016.

On leaving the board he continued to pursue a fundraising ambassadorial role. He was awarded the inaugural Terrific Trustee award at the Scottish Charity Awards in 2017 to mark his contribution to the work of the charity.

Paying tribute to Jim, our CEO Stephanie Fraser said:

“Although Jim had no personal connection to cerebral palsy, in supporting Cerebral Palsy Scotland over the years he saw an opportunity to use his financial and business skills for the good of others in a totally selfless way.

“He was committed to making the charity “think like a business”, and professionalised it from board level down. When he recruited me as CEO in 2012, he mentored, supported and challenged me, along with the rest of the staff, to develop and grow the charity so it could reach more people and families.

“Jim would always roll his sleeves up to help, taking part in countless events and persuading individuals and business to support the charity. He was incredibly self-effacing, and refused to take credit as being a catalyst for change; but that was exactly what he was.

“Jim’s contribution to the development of Cerebral Palsy Scotland was immense. I can honestly say that the charity would not exist today without him.”

Jim Campbell will be greatly missed by everyone at Cerebral Palsy Scotland who knew him. We extend our deepest sympathies to Nina, Fraser, Catriona and Fiona.

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.

Read the full Survey summary

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.”

Read the full Survey summary