Supporting adults with cerebral palsy to age well - development of a specialised link worker role

The overarching aim of this project is to develop and assess a specialised cerebral palsy (CP) link worker role to support adults ageing with CP.

CP is the most common lifelong physical disability in the UK and is linked to multiple issues with social determinants of health.

This includes decreased social participation, lower employment, social exclusion, discrimination, and a lack of access to specialised health services.

These multiple issues are experienced across the life course and exacerbate the long-term risk of experiencing health and social inequalities.

Adults with CP have a higher risk of developing age-related issues at much earlier ages such as noncommunicable diseases, falls, and joint issues. There are also lifelong issues with pain, fatigue and mobility which are exacerbated by ageing.

By the age of 40 many adults with CP are experiencing age-related health issues that many people in the general population won’t experience until they are in their late 60s.

Alongside these physical health issues many older people with CP experience social health issues including loneliness, isolation and societal discrimination, plus mental health issues such as anxiety, depression, and poorer wellbeing. This all points to the need for specialised holistic care for these complex needs in older people with CP.

However, at a time when specialised support is needed more than ever in their lives there is a less support available.

Most older people with CP are supported in their community setting by GPs and complain of disjointed and non-specialised care where people have a poor understanding of their ageing needs. Therefore, there is a pressing need for us to develop ways to support people ageing with CP within their communities.

This project will determine if a specialised link worker could be a way to provide this group with desperately needed specialised support for their health and wellbeing as they age.

Link workers ‘link’ people to community resources that can support health and wellbeing as part of social prescribing.

One of the core mandates of our community partner UP – The Cerebral Palsy Movement is to raise awareness of the support available to adults with CP needed to live their best lives.

To co-create and investigate how a specialised link worker could support adults with CP we address the following objectives: 1.) Determine how ageing with CP impacts people and identify where community support is needed to promote health and wellbeing. 2.) Co-develop ‘ageing with CP’ training materials for link workers. 3.) Undertake a feasibility/pilot assessment of a specialised CP link worker who will work across a pilot region and be based in UP.

For objective 1 we will undertake qualitative interviews with older adults with CP.

For objective 2 we will hold workshops where we will work alongside people ageing with CP, link workers and healthcare workers to co-create training materials that can be used by our link workers.

For objective 3 we will map community resources in our pilot region, the North Central London Integrated Care System (ICS) and undertake a 12-month feasibility/pilot assessment of the link worker role.

During this assessment we will examine who utilises the service and collect data on the health and wellbeing of service users at baseline and follow-up.

We will work alongside a lived experience advisory group and stakeholder advisory group throughout the project, as well as holding consultation workshops throughout the project with stakeholders and policy makers who would be well positioned to change how health and social care is delivered to adults with CP.

Benefits will be multi-faceted.

There will be immediate benefit to the CP community who will be empowered to co-create resources to improve their health and wellbeing alongside immediate benefit to those supported by the link worker.

The mapping exercises of relevant services will be of long-term benefit to UP who can use this information to advocate for additional support.

Training resources will be made publicly available so they could be used by other link workers, thus supporting more adults with CP. Project success will allow us to work with UP to gain additional funding and expand the link worker role.

Finally, we will create a toolkit for other services to support development of specialised link worker roles for other populations with disability.