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Guest post: Do you feel there are 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 Cerebral Palsy.
Unlike most neurological conditions, there is no one lead consultant with specialist knowledge of cerebral palsy who takes the lead with patients. My transition pathway to adult services was poor and the access to services limited. Responsibility for coordinating my care fell to my GP.
The issue with the GP becoming the gatekeeper to access to services is that it is dependent on them 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.
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.
In summary I feel the main issues are:
- 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 treatment at key times
- Difficulty accessing specialist knowledge
This is the early stages and there's much to be done, but if you'd like to keep up to date with my campaign and find out how you can join in, please visit my blog.
Have you experienced difficulties in transitioning to adult services? What would you like to see done? Let us know in the comments below.