Old CP and Ageing factsheet - Page 2 — Scope | Disability forum
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Old CP and Ageing factsheet

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Comments

  • Jean_OT
    Jean_OT Community member Posts: 513 Pioneering

    Hi @speedincaesar

    I know you have been a member of this community for a long time but I just wanted to congratulations on your new role!

    If there is anything I can do to assist, please get in touch,

    Jean

     https://community.scope.org.uk/categories/ask-an-occupational-therapist 

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • panther
    panther Community member Posts: 251 Courageous
    Hi @speedincaesar hope you enjoy your new role. And hopefully now we can actually get some support that isn't so general disability related but more specifically CP related.

    As I'm sure if you've read this thread there are many of us that don't like the direction Scope have gone with being more general disability. Those of us with CP are feeling abandoned at a time when we need the specialist help even more than ever with the change overs going on of DLA to PIP as just one example of where we need support.
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    Hi @panther and @Jean_Scope
    Thank you for the congratulations! I have read the threads and can understand how you and others feel. 
    I am very excited to have opportunity to work with Scope to reinforce what is already on offer.  I hope that we can use our lived experiences to support and direct each other. 
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    edited March 2018
    @speedincaesar I would like to concur with @panther with respect to your new post and offer congratulations.  I do also, however, agree with @panther that having just one advisor where once there was a whole team does seem rather a token gesture, particularly as most, if not all, other health conditions have at least one solely dedicated national charity.  Hopefully this is just a start of better things for those of us with CP.  Only time will tell and I will certainly be following developments with interest.  I hope that I will be able to contribute something at some point in the future and will be in contact as soon as I can.

    @Bubbles83 I’ve certainly never quite understood the rationale behind Scope’s decision to become a pan-disability charity.  I do just about remember when name of The Spastics Society was changed to Scope and, although I probably couldn’t have verbalised exactly the effect it had on me at the time, I would say now that the best way I could explain it now was that it felt like a betrayal.  Like I mentioned in the other thread, other children had on rare occasions used the term “spastic” in my hearing, either directed at me or another child.  As I’ve also said this really only left me bemused.  I knew that spastic that was a simple medical term that adults worthy of my respect used without any hint of unkindness.  I knew it was only a term of abuse in the minds of ignorant people.  I could deal with hearing it used as a “term of abuse” because I knew better than they did.  

    When I heard that my charity had suddenly become afraid of using a simple, universally accepted medical term to describe my disability, that was something that was actually quite hurtful.

    As I’ve grown older I’ve become more and more convinced that the issue around “spastic” is something that Scope should have confronted not walked away from. I could understand changing the name to “CP society” because CP is more than just spasticity.  Reading Mr Atkinson’s recently publicised comments where he stated he was “thankful” Scope didn’t use the name “CP Society” was a real shock.  

    I also think that in becoming a pan-disability charity, Scope failed to see the irony of their decision.  In trying to become the voice of all disabled people, Scope has left people with CP without any unique voice at all.  

    The argument that we don’t need unique representation because CP is a condition that affects everyone differently also puzzles me.  The exact same thing could be said of MS.  In fact, the MS Society does say it:

    “Multiple sclerosis (MS) is a condition that affects your brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged, and this causes a range of symptoms....The specific symptoms that appear depend on which part of your central nervous system has been affected”

    (Source: MS Society website)

    That sounds rather like CP, doesn’t it!  

    But I would be extremely surprised if the MS Society ceased to exist using the argument people with MS didn’t need MS specific research and support and that all of their needs could be met by Scope!

    In view of all of this I look forward to seeing what develops and how well Scope starts listening
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    edited March 2018
    Hi @BeccyJ
    Great to read your thoughts and feelings, I can say from my point of view that I was very pleased when Scope changed their name in 1994. I also understood what the word spastic meant but that did not stop it being used as a hurtful slur against me for the majority of my childhood. I am very pleased that it was hardly directed to you. We must have grown up in very different worlds. 
    As I have said before I am keen to work with everybody who has an interest in Cerebral Palsy and I will always listen as will Scope.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • panther
    panther Community member Posts: 251 Courageous
    @speedincaesar so when are Scope going to listen to that fact that those of us with CP feel left behind, unsuppourted, without a voice etc. When are they going to have more than just you as a specialist information officer?

    As @BeccyJ has said you wouldn't expect to phone one of the other charities and be told oh there is only one person that specialises in your condition. It just shows what little regard Scope have for those of us with CP at a time when we need that support more than ever with the change over from DLA to PIP going on we need more than one person to be able to understand us 
  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    edited March 2018
    @speedincaesar I certainly understand that not everyone will feel the same way and I don’t mean to minimise the impact “spastic” has had on the lives of people with CP. I think I was fortunate with the support I had from my friendship groups and schools.  Very personally speaking I would say I was most affected by the attitude of strangers in the street who would mimic the way I walked, for example - but that was something that would happen before and after Scope’s name change and even into my adulthood.

    However, I certainly don’t want to provoke a debate on this issue.  I respect differing opinion and don’t want it to detract from the issues at hand.  

    I think I’ve made these same points several times over the last few months but the fact is that more and more people affected by CP are saying the same thing about Scope which is very telling.  People like @panther who were once very active on Scope’s behalf but now feel completely sidelined.

    I’ve looked at the websites of several charities.  They offer a whole range of services specifically tailored to the condition with which they are concerned.  As @panther has said, support on this level is something that needs a dedicated team of people.  

    Further to that, that, though, these charities clearly act as advocates for those affected by the relevant condition.  

    There are a range of issues that are common to anyone with a disability and these would obviously benefit from some form of united representation - I would never dispute that.  

    What I do dispute is that people with CP have lost the unique advocate that other disabled people still have in their own condition-specific charities.  

    I also don’t understand why adults with CP should just accept that there are no specialists in their condition.  To me, it is not an excuse to say that, due to the varying nature of the condition, it would be difficult to offer specialist treatment.  
    If I understood you correctly, this was an issue you discussed with @tarakona80 on another thread.  I’d be interested to understand more of your reasoning here.  

    After all, yes, we are all affected in different ways and to different degrees - but we still all managed to get treatment as children.  This is because research has been done into CP in childhood  - therefore medical treatment is available.  It doesn’t matter which form of CP you have or how badly you are affected.  We all had a CP diagnosis as children so we saw a paediatrician with CP expertise who tailored his or her treatment plan to our individual needs.

    So it follows that the only reason there aren’t CP specialists for adults is because no research has been done on which to build medical treatment.  

    CP has been classified as “non progressive”, therefore the received medical wisdom is that no research needs to be done on CP in adults.  No research equals no medical treatments.  

    Anecdotal evidence is increasingly proving that the “non progressive” assumption is a flawed one.  There have been a few studies based on anecdotal evidence.  These studies invariably rather vaguely conclude that CP in adulthood is little understood and research needs to be done.

    Who is calling for that research?  Adults with CP are.  Who is going to to make sure their voices are heard? Given Scope’s current stance on CP and its decision not to involve itself in medical campaigns, the answer has to be “No-one will help adults with CP to get their voices heard.”  That is incredibly sad.

    People with MS are affected in various ways and to various degrees.  They have a charity coordinating research on their behalf

    People have various forms of arthritis (rheumatoid, osteo etc) and can be affected to different degrees - and they have a charity focussed on researching their condition so better treatments can be found.

    Who do people with CP have?  

    No one 


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