Earlier this month, Emma Livingstone CEO was elected as a Lay Trustee on the new board of the British Society of Physical and Rehabilitation Medicine.
She was also invited to speak at the recent Annual Scientific Conference highlighting a vital issue: the lack of specialised care for adults with CP. With 130,000 adults in the UK navigating chronic pain, declining mobility, and mental health risks, it’s time for change. Rehabilitation consultants can spearhead the creation of lifelong care pathways.
Emma expanded on these points in an article on LinkedIn, reproduced here:
Why Rehabilitation Consultants Are Key to Transforming Care Pathways for Adults with Cerebral Palsy
by Emma Livingstone
It’s an absurd reality that if you’re under 18, paediatric services offer coordinated support; if you’re over 65, gerontologists ensure comprehensive care; if you’re an adult with a learning difficulty, specialist services, are available. But if you’re an adult aged 18 to 65 with Cerebral Palsy and no learning difficulty, there’s a glaring gap in provision—leaving tens’ of thousands without the support they need.
At UP – The Cerebral Palsy Movement, we recently presented at the British Society of Physical & Rehabilitation Medicine (BSPRM) Conference, advocating for a change in how care for adults with Cerebral Palsy (CP) is structured. In the UK alone, around 130,000 adults live with CP. Yet, these individuals often face a cliff-edge in support after childhood, left to navigate non-specialist care without the resources and coordination they need for a quality life.
Rehabilitation Consultants are ideally placed to lead change and build a pathway that addresses the unique challenges of aging with CP. Here’s why:
Specialised Knowledge: Adults with CP face issues that intersect physical, social, and mental health, including chronic pain, declining mobility, and high mental health risks. Rehabilitation consultants possess the expertise to address these complex needs holistically, not just focusing on CP but also understanding how aging and other health factors interact with it.
Integrated Multi-Disciplinary Teams (MDTs) Effective CP care requires coordinated support from various specialists—physiotherapists, occupational therapists, and mental health professionals. Rehabilitation consultants can lead MDTs to ensure that each adult with CP has access to tailored, continuous support, filling the gaps left by non-specialist primary care.
Economic Empowerment through Vocational Support: Supporting adults with CP to access and stay in the workforce is not only a matter of health but also of economic opportunity. Vocational support, a form of “habilitation” that rehabilitation consultants inherently understand, is essential to empower individuals in the workplace. Addressing the needs of adults with CP so they can maintain employment has significant economic benefits, reducing dependence on social services and enhancing productivity.
Proactive, Preventive Care: A system of annual reviews and ongoing follow-ups, led by rehabilitation specialists, would enable early intervention for complications, whether they are due to CP or other age-related health issues. Consistent care reduces avoidable pain, improves mobility, avoiding entering service at a high point of need and enhances overall quality of life.
Holistic and Person-Centered Approach: Rehabilitation consultants understand that CP affects each person differently. They are skilled in creating personalized care plans that empower individuals, prioritize independence, and promote participation in social and vocational settings.
If we want to learn from successful models abroad, this approach has already been effectively adopted across Europe. Through UP’s continued collaboration with the European Academy of Childhood Disability (EACD), we’ve seen firsthand how a coordinated rehabilitation-led model is helping adults with CP receive the continuous, specialist support they need to thrive.
Adults with CP shouldn’t have to struggle alone in a system that isn’t designed to meet their lifelong needs. By empowering rehabilitation consultants to lead CP care pathways, we can bridge the gap between paediatric and adult services , ensuring that every adult with CP has access to the quality care they deserve.