Cerebral Palsy
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Adult Cerebral Palsy Hub - Abandoned Adults with CP

StayceStayce Member Posts: 380 Pioneering
Hi All,

I have come across the Adult Cerebral Palsy Hub through my GP and thought I would share for many of us that are experiencing secondary issues as adults as a result of CP:

Story behind setting up the Adult CP Hub can be found in these links
https://ablemagazine.co.uk/charity-launches-to-help-abandoned-adults-with-cerebral-palsy/
https://www.thejc.com/london-mum-sets-up-cerebral-palsy-charity-for-adults-1.471219

Facebook Page can be found here
https://en-gb.facebook.com/pg/adultcphub/posts/
Hope you find it useful
Best 
Stayce

Replies

  • Richard_ScopeRichard_Scope Community Team Posts: 2,624 Scope community team
    Thanks for posting @Stayce
    We have been working with Adult Cerebral Palsy Hub since the inception of the group in 2018. We have collaborated on things like NICE Guidelines for Adults with Cerebral Palsy and research into Depression and Anxiety with Cerebral Palsy and as you mention Post Impairment Syndrome (secondary issues).
    We will continue that partnership in future :)
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • forgoodnesssakeforgoodnesssake Member Posts: 342 Pioneering
    Quite ironic because Adult CP hub developed, in part, due to Scope's lack of any real commitment to CP now!  And in particular lack of much at all aimed at adults with CP.  There was a very lively and detailed long thread on here about 18 months ago highlighting all the issues that people, and in particular adults, with CP face but with no actual CP organisation to support them.  So very glad to see Adult CP hub gaining ground and thanks very much to the folks behind it!

  • StayceStayce Member Posts: 380 Pioneering
    Thanks @Richard_Scope 😀 - I have commented on most of these threads. It is not always clear on these ip posts who Scope is collaborating with in terms of their partners on these things. It would be good if some of these collaborating partners could be profiled on the community so that users can hear about them and what they are striving to achieve. Perhaps a category could be added on the forum or posts could start to include who Scope is working with on these things with some hyperlinks to the partners.

    I do indeed remember the thread you are referring to @forgoodnesssake. This is one of the reasons for posting this information. It’s a topic that is close to my heart also  and members of the community need to be aware what’s out there.

    All the best
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