Guest post: Do you feel there are a lack of adult services for cerebral palsy?

Stayce

Thanks @emmaliv - Ican only go on for hours

Stayce

 Thanks @emmaliv - I can only go on for hours because there is so much to be done to adult services. No, a register on its own would not solve all the issues of coordinated care but it would make considerable strides in the right direction. Coordinated care won't happen without some form of identification or mapping (via a register or some other means) of practitioners with specialisms in cerebral palsy from multiple fields of expertise. We need communities of practice to be identified, built and nurtured for coordinated care to then follow from.
Just my thoughtsBest wishes

Noah

I agree with @Stayce, that having a register where practitioners state if they have a special interest/experience in treating individuals with Cerebral Palsy would be a great step in the right direction and would most definitely assist patients and GP's when making referrals. 

nightjars

My sister who has severe cerebral palsy was referred to physio by her dr months ago because of a painful hip.She is still waiting..... I t would be nice to think that she and other disabled adults are given more priority in the health servce but it means nothing. Im afraid the days of sitting back and waiting for your dr to do something are gone and Ive had to go down the private health route which is expensive and still an area where medics remain totally unfamiliar with disabilities.

CerebralPerson

Sam_Scope said:

@CerebralPerson how have you found adult services?

They barely exist, sadly, as there are plenty of adults with CP!

htlcy

Great post Emmaliz. Though I'd give my two cents (for what it's worth!!) I have hemiparesis and I have to say when I turned sixteen any support regarding the CP stopped. Took me a long time and persistence to get some help including occupational therapy(which I'd never had before...can you believe that!?) physio, neurology and pain management. I was based in hull for my university study and found their provisions much better than in other places. Perhaps it differs depending on region? Either way, I had no real transition and it would have been incredibly useful if I had.

Rainbow_wheelz16

emmaliv said:

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: 

1. Trying to get people to acknowledge that things are getting more difficult for me (and that I am neither anaemic or depressed)
   
   
2. Not knowing where to go when I need help (and having to be the person to suggest treatment options to my GP)
   
   
3. 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.

Yes, totally agree about the lack  of knowledge and changing needs from childhood, to adolescence through to adulthood. I have had a functional  deterioration from mid to late teens and I'm a full time wheelchair user. I was given ops and meds. Now, in my mid 30's they told me that that wasn't the right thing to do! They have also reclassified my cp from childhood  and have told me that I have mixed cp with hypertonic and hypotonic muscles throughout my body. (Originally,  it was spastic diplegia)  I have supportive seating and was on 6 tabs of baclofen,  for several years. I have done my own research and apparently  baclofen can cause your back muscles to lose their tone... I. E your back muscles  can become  floppy. There is also quite a bit on fatigue and cp. I find this the  most difficult to deal with as it impacts on every single aspect of my life.  I can do very little and feel knackered. This includes mental fatigue as well. I think some consultants are starting to become aware of the changes, but GPs and consultants do need to be more informed. A pathway would be great  and it is vitally  needed. You are too often just left to get on with it