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Adult services for CP - I need your help

dereklivderekliv Member Posts: 6 Listener

It is really important to me to raise the profile of the 111,000 people like my wife in the UK who have Cerebral Palsy.

As many of you will have experienced, that there are no dedicated services and very little knowledge about the effects of cerebral palsy in adulthood. 

I need a petition to NHS England of at least 500 strong to get anyone to start to listen.

Please please sign first; then share, convince and cajole as many people as you know to sign too.

Help me get to that magic number. I can't do this without you.

https://you.38degrees.org.uk/petitions/better-care-for-adults-with-cerebral-palsy

Replies

  • dereklivderekliv Member Posts: 6 Listener
    edited May 2017
    Hi Guys, you have all commented on  @emmaliv blog about this issue a few months ago. We are keeping going with the fight and would love your support. thanks
    @rachelcl @Noah @Francesca1994 @Stayce @mikeep1983
    @JadeB @nightjars @CerebralPerson @htlcy @Rainbow_wheelz16

  • KylieGirlKylieGirl Member Posts: 12 Connected
     hi @derekliv I really love this petition and I am so grateful to you for starting it. I am 40 years old and up until about six years ago I lead a very active life. I am married to John who is now I'm a full-time carer as of 6 years ago.

    I have since had a baclofen pump inserted. When I first met John 17 years ago I was not on any anti spasm medication whatsoever. I was walking on crutches, working and driving.

    I left work due to depression in my second job after the company that I worked for went into liquidation. I don't think I got over it. But I always kept trying and have managed to do three jobs. My third job was as A play worker. This was when I was subjected to disability discrimination. Unfortunately it was pre October 2004 and a work place with less than 15 employees did not have to abide by the DDA. My disability employment advisor confirmed it was discrimination and told me my choices where to stay and wait it out until October and take the boss to court or leave as I was unable to cope. I have been unable to work since 2004.

    My consultant neurologist confirmed that every time I go under anaesthetic my spasticity gets worse.

    I feel so helpless compared to the old days I am unable to even get out of bed on my own. So finding your petition means the world to me because I truly now have people I can talk to who understand but we are not Peter Pan!

    It is almost as though it is a progressive disability. Have you come across degeneration regardless of general anaesthetic?

    I really hope we can connect as I am so interested to find out more about you and your take on life with CP

    Once again thank you for this petition. My sister has already said it from Spain!
  • dereklivderekliv Member Posts: 6 Listener
    hi @KylieGirl please accept my apologies for not getting back sooner. Life is pretty hectic at moment (3 kids and just started building work to adapt our home!). Thank you for your support with the petition and sorry you are having what seems to be the all too common experience of adults with CP. That is why my wife is trying to get things changing.  I will pass this on to her - I know she is looking for as much support as she can get (especially as Scope seem to have completely distanced themselves from adults with CP).
  • chelchel Member Posts: 5 Listener
    Hi there.I just been having a gd  read. As I have my husband  who has cp is 51 he had to give up work when he was 47.and my does he is 24 and half.but my sons  and husband's cp is not hereditary. Was tested for that.  We found out it don't get better .it gets harder. My son has not walked since Easter 2013. And my husband can walk but with a crutch.and is in pain lot.the help we had was had to have a bedroom built down stairs with on suite. For my son . cuz of being in wheel chair. And a floorlift  for my husband to get upstairs. But to be fair I didn't know about scope till recently.but all we have learnt  is you have to cope its part of life . sad. And been on pain management  and have hydro. A pressure doent help with cp. Sorry guys wish life was easy.but that won't be.
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