APPG on Adult CP Report

March 17, 2022

Launch of APPG report at parliament

Today, with your help and support, MPs and Peers are urging Government, healthcare professionals and employers to act now to provide quality provision and specialist care throughout life for the 165,000 people living with cerebral palsy to ensure they have the best life chances possible.

We are delighted to share with you that the All Party Parliamentary Group (APPG) on Cerebral Palsy, that we sponsored together with SCOPE, has today published their report into the barriers for adults with Cerebral Palsy on achieving full life participation in healthcare and the workplace.

To read the report click here.

The report was composed based on dozens of submissions from clinicians, academic experts, and, crucially, you, the members of the adult Cerebral Palsy community sharing your lived experience. We would like to thank all of you for your time and your honesty, which gives this report an authenticity that cannot be ignored.

Cerebral Palsy is a lifelong condition, and we hope that this report emphasises the crucial need to refocus attention on barriers to achieving full life participation.

Commenting on the launch of the report Co-Chairs, Mary Kelly Foy MP and Paul Maynard MP said:

‘Cerebral Palsy is a lifelong condition, and we hope that this report emphasises the crucial need to refocus attention on barriers to achieving full life participation for those living with it…. we also must not let the pandemic distract from long-standing problems that need to be addressed.”

The report highlights that the problems faced by the community are multifaceted and that collaboration between health, social care and employment is essential.

Among the recommendations, Parliamentarians call on NHS England, social care, education, and employment specialists to agree a new national specification for adult Cerebral Palsy to commission dedicated specialist services across the new 42 Integrated Care Systems (ICSs) in England. Devolved governments should put in similar measures in their respective health systems.

Other proposals contained in report include:

Guaranteeing adults living with Cerebral Palsy annual medical reviews to better assess their evolving health and care needs.
Ringfencing funding for the ICSs to develop specialist services.
Enhancing employment rights for adults with Cerebral Palsy to better reflect the varied, fluctuating, and complex nature of their conditions.
Creating a new online information hub for employers to better understand the needs of member of the adult Cerebral Palsy community in their workforces.
We think these are a starting point for addressing the unmet needs and health inequalities of the adult Cerebral Palsy community, the largest group in the UK living with a lifelong condition, and many other disabled people would benefit from positive policy change too.
Our focus now turns to ensuring that the recommendations made in the report are implemented and we will be urging the Government to act now to improve the lives of adults with Cerebral Palsy.

The strength of Adult Cerebral Palsy Hub is that we work collaboratively with our community of researchers, medics and crucially adults living with CP. We continue to show that by working together and uniting our voices, we become difficult to ignore.

Commenting on the launch of the report Co-Chairs, Mary Kelly Foy MP and Paul Maynard MP said:

‘Cerebral Palsy is a lifelong condition, and we hope that this report emphasises the crucial need to refocus attention on barriers to achieving full life participation for those living with it…. we also must not let the pandemic distract from long-standing problems that need to be addressed.”

4The report highlights that the problems faced by the community are multifaceted and that collaboration between health, social care and employment is essential.

Among the recommendations, Parliamentarians call on NHS England, social care, education, and employment specialists to agree a new national specification for adult Cerebral Palsy to commission dedicated specialist services across the new 42 Integrated Care Systems (ICSs) in England. Devolved governments should put in similar measures in their respective health systems.