Calling all parents of children with Cerebral Palsy

We want to hear from you: please tell us about your experience of the online community.

BeccyJ

Hi

If your child has CP, then it goes without saying that you'll want them to get the best treatment and support for them so that they can achieve their potential in life.

Sadly, as things stand, you'll find that once your child reaches 18, the medical support they receive now will just disappear.  You may well have been told that CP is a non progressive disorder.  While this is strictly true, CP can cause all sorts of problems in adulthood.  

As as an adult with CP I can speak from personal experience and I know my experiences aren't unique.  I left paediatric services as a teenager as an indépendant walker.  By the age of 28 I was using a wheelchair.  My GP didn't know who to refer me to as I could no longer see my paediatric doctors. As an adult, I had to fight to see a neurologist and a musco skeletal specialist - both of whom essentially told me they didn't have any expertise in CP, that this was purely a paediatric area and that they didn't know of any specialists in the country who helped adults with CP.  I had a short course of neuro physiotherapy but was afterwards left to get on with it and had to adjust to using a wheelchair on my own.  As far as the NHS was concerned there was never any question of me recovering my ability to walk.  My childhood records were no longer available. The message I got was that, as a person with CP, I should just start using a wheelchair and get on with my life.

The CP forum here is full of posts from adults who have had to deal with a decline in their functionality with little, if any, medical support.

We want to change this.  Not just for ourselves but for all children like yours who will have to face the same brick wall if they have issues with CP after 18.  @emmaliv has started a petition to highlight this issue.  You can read more if you read the thread in the Events and Research forum.  Link below:

https://community.scope.org.uk/discussion/33360/better-care-for-adults-with-cp

Please support us.  It may not be a problem your child has to deal with now.  Hopefully it'll be a problem they never have to deal with - but we can only make sure of this if we can get the support we need to change things now.  

We have asked Scope to support us with this.  Their charitable objects ( as registered with the Charity Commission) state that Scope exists "especially" for "those with Cerebral Palsy". Unfortunately, as I understand it, this issue doesn't fit in with Scope's social agenda - so, yet again, we're on our own.  (If you'd like to know more about Scope's stance on this, please read the topic in Events and Research forum linked above and read replies of @quinrah who is a director at Scope)

Other neurological patients with conditions like MS ans Parkinson's have active condition-specific charities like MS Society and Parkinson's UK fighting for them and investing millions of £s in MS and Parkinson's research etc.  People with CP don't have this.  We are on our own.

It's not uncommon to see CP referred to as a "childhood" condition.  CP doesn't just disappear at 18.  If such basic misconceptions about CP still exist, there is a huge amount of work to do.

Please support us in any way you can - time spent now will be an investment in your child's future

thank you

PS: Please particularly see @emmaliv post dated 1 October 2017

forgoodnesssake

I can't stress how important this is.  My son is now 19...with quad athetoid CP, power chair user, poor hand and arm control, can't self feed or do personal care, and no speech so uses communication aid. 

And now he has no specialist ongoing input at all...no physio, no OT, no SALT, no orthopaedics (except that his paed. ortho has said he will see him once or twice more)  Dietician is still in the loop but only becuase he has an ongoing prescription of food supplements. If he needs any of these therapeutic inputs (why would he suddenly not need them when he reached the age of 18 ??!) he needs to have a time-limited "episode" which can be addressed, dealt with and then he will be signed off again.  This is for a life-long physical disability which is known to "evolve" as people get older (not necessarily get worse, but affect in different ways as the body ages and years of stresses take their toll) 

PLEASE Scope, either get a grip on this, and leave Autism, Parkinsons, MND, MS, Downs, Deafness, Visual Impairment etc etc to be dealt with by their specialist national organisations, or change your charitable objectives and allow others to actually do something specifically for and about CP,  and those it affects.

I had a very interesting conversation in Newcastle city centre a couple of weeks ago with some Scope fundraisers who thought that Scope was helping all disabled people because all the issues are the same irrespective of the actual impairment.  They knew that Scope had previously been called the Spastics Society but thought the name change was just out of political correctness (which in some ways it was..)

When I told them a bit about what services and specialist CP knowledge Scope used to have (and my son benefitted from in his early years) and how much has been lost and watered down to the point of "jack of all trades master of none" it was clear that little cogs were starting to whir in at least one of their heads and he said words to the effect of "hm that's interesting, I didn't know that..." and they certainly had no idea that Scope actually still mentions CP specifically in its charitable objectives.  Basically those fundraisers did not see Scope as a CP charity but just a generic disability one...which i guess is just what the current management want; but it doesn't seem to be what people with CP want...