Our Story
Adult Cerebral Palsy Hub has been established to create a home for adults with Cerebral Palsy and put their needs at the forefront of the minds of the medical and research community.
Our Vision
All adults with Cerebral Palsy will have access to bespoke and integrated medical services to meet their changing needs.
We believe that Cerebral Palsy shouldn’t be a barrier to living a full and active life. With better understanding, and dedicated and continuous medical provision, adults with Cerebral Palsy would be better supported to delay and cope with the degenerative impact Cerebral Palsy can have on the body.
We want adults with Cerebral Palsy to remain active members of society, despite their condition and changing needs.
Our hope is that through Adult Cerebral Palsy Hub we can create, foster and give a much-needed voice to adults living with Cerebral Palsy and raise the profile of our large but currently underrepresented community.
What are the Issues?
Adults with Cerebral Palsy face unique challenges that often require specialised care e.g. pain management, mobility problems, and ageing-related conditions such as osteoarthritis and osteoporosis. Yet, co-ordinated services stop on transition to adulthood.
Often responsibility for coordinating care falls to the GP. This model necessitates that GP’s have sufficient knowledge of Cerebral Palsy to make appropriate and timely referrals. The problem is further compounded by a lack of research and sharing amongst professionals into how to manage and treat conditions associated with ageing in persons with underlying neurological conditions. The negative effects of ageing can also be accelerated by inadequate rehabilitation following surgery or the constant use of support equipment.
The impact of these failings is unnecessary pain, reduced quality of life and avoidable medical problems for sufferers and increased cost and strain on already stretched health and social care services.
Adults with CP need support & a better understanding of their needs because:
- Cerebral Palsy is a lifelong condition
- There is a degenerative impact of living with a lifelong condition
- This can be better managed than it is today
- There is a big enough population to deserve our own dedicated services
Our Charitable Aims
- Raise awareness, change perceptions and work in partnership with the medical and research communities to drive better understanding of Cerebral Palsy in adults.
- Develop best practice by supporting pioneering research to better understand the needs of adults with Cerebral Palsy.
- Support the development and delivery of bespoke medical services for adults with Cerebral Palsy.
- Educate the medical profession, allied health professionals and the public of Cerebral Palsy as a lifelong condition.
- Facilitate community support being a place where those with Cerebral Palsy can come for information, support and understanding.
- Campaign with and for adults affected by Cerebral Palsy to influence government bodies to ensure services are available for all adults with Cerebral Palsy in line with the NICE guidelines and international best
Our History
The idea for the charity emerged in early 2016 when Emma Livingstone, a mother of 3 living with Cerebral Palsy was recovering from hip surgery.
Emma had seen a significant decline in her mobility in her late 30’s which had led to several surgeries and her having to give up work.
It was her frustration at the lack of knowledge and understanding of Cerebral Palsy as a disability affecting adults that spurred her on to write a blog titled “From Complainer to Campaigner” and then begin to make links with the medical and research communities.
In 2018, she and Miriam Creeger, her physiotherapist founded the charity Adult Cerebral Palsy Hub to campaign for better support and services and give a voice to the adult Cerebral Palsy community.
Medical issues that are almost unsolvable when patients come to us in their 40s could be averted if spotted earlier. While CP is not a progressive condition, it does necessitate ongoing medical treatment into adulthood to offset medical issues, such as early joint degeneration, that can be extremely debilitating if left untreated.
Professor David Roye,
Jr, MD,
Leading paediatric orthopaedic surgeon, & the director of the Weinberg Family Cerebral Palsy Center, New York