It is very difficult to know where to begin as some one who now spends a great deal of time at home, following major hip surgery. However I began talking through my thoughts with some close friends and my husband, Derek and far from thinking that my ideas were pie in the sky they were both supportive and enthusiastic, and so I find myself transformed from Complainer to Campaigner.
A lack of adult services for Cerebral Palsy
In my experience, first as a child with cerebral palsy and today as a professional working with children with cerebral palsy (CP), services for children with CP are well established and co-ordinated, even if they may not be perfect. Unfortunately, this has not been my experience as an adult with CP.
Unlike most neurological conditions, there is no one lead consultant with specialist knowledge of cerebral palsy who takes the lead with patients. Transition pathways to adult services are poor and the access to services limited. Responsibility for coordinating care falls to the GP.
There are issues with your GP becoming the gatekeeper to access to services. It is dependent on the GP having sufficient knowledge and understanding of cerebral palsy to make appropriate and timely referrals and to manage pain. It also means that there is no immediate access to services during an acute episode. For example, access to physiotherapy to help control acute episodes of spasm is impossible because of the long NHS wait times and no opportunity for immediate care.
As a result of this system, care becomes reactive rather than proactive. Diagnosis and treatment is often delayed and leaves no room for preventative or long term maintenance programmes. Statistics for the number of adults who have cerebral palsy are hard to come by, but with an estimated 30,000 children in the UK having CP, it’s easy to conclude that a great many people are currently struggling within this system.
A difficult transition for adults with cerebral palsy
After the transition to adult services, care becomes siloed specialty care, and the providers don’t always have knowledge about cerebral palsy. For example, many of the orthopaedic surgeons I have met have treated me like just another orthopaedic case. They have been unable to consider the effects of my underlying neurology when diagnosing and suggesting treatment, and they neglect to consider the impact of the treatment. Some seem to feel unable to offer advice and put everything down to the fact that I have CP.
As a result of the lack of a lead consultant for my cerebral palsy and the difficulties accessing knowledge and services, I feel I have spent much of my adult life:
- Trying to get people to acknowledge that things are getting more difficult for me (and that I am neither anaemic or depressed)
- Not knowing where to go when I need help (and having to be the person to suggest treatment options to my GP)
- Not being able to access services when I need them, nor finding specialist consultants in whom I feel confident and who understand the functional impact of my difficulties.
The main issues for adults with CP
- Lack of clear transition pathways
- Lack of understanding of the longer term impact of living with CP
- No individual practitioners who hold a specialised knowledge of Adults with CP
- No co-ordinated services to allow access to immediate treatment at key times
- Difficulty accessing specialist knowledge
A possible solution to the lack of adult cerebral palsy services?
These issues are likely not unique to the UK, but in some places there have been positive moves to address this. In the US for example, the Weinberg Family Cerebral Palsy Center was set up in New York in 2013 to offer dedicated transitional care for cerebral palsy. It provides integrated, coordinated, and multidisciplinary health care that includes paediatric, transitional, and adult care. It was funded by the Weinberg family to address their son’s needs as he transitioned into adult services.
The Weinberg Family Cerebral Palsy Center describes their service as providing “transitional & lifetime care” – integrated care and best treatment options by a network of adult care specialists knowledgeable about CP. I would like to see a centre like this in the UK as one possible solution and I plan to raise awareness, galvanise support, and fundraise in order to make it happen.
To do this I first need to find out about other peoples experiences? Am I unique?
What is your experience as an adult with CP?
What works, what has not worked, how would you like services to be different?
Please let me know in the comments below.
And if you feel as passionately as I do about the need for dedicated adult services, and you are able to help in anyway, please contact me directly. Follow my progress on my blog – and on Facebook (page to follow).
