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Better Care for adults with CP

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  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    I had completely missed this "thankfully rejecting the alternatives on the shortlist including ‘Cerebral Palsy Society’, ‘Action Cerebral Palsy’ and ‘Capability and Action Disability’."   I'm afraid I find that very concerning and dare I say it, actually offensive.   As you rightly say, CP is a specific impairment, actually a group of impairments with a common theme of stemming from infant brain damage, (and spastic is one type of effect).  Does he actually think that to use the name of the impairment in the name of the charity is actually in some way "politically incorrect" or will offend people???  Arthritis UK, Motor Neurone Disease society, Parkinsons, National Autistic Society...we could list many, many more, none of whom seem to have a problem actually being clear about what issues they are concerned with.  So by saying what he has he is making it clear that he does not think that Scope should have any obvious connection with CP...

    Yes that’s exactly it.

    I’ve tried to express politely how I feel about what Mr Atkinson has said but, frankly, I think it’s appalling.

    Naturally, I’ve always been aware that the term “spastic” has been adopted as a term of abuse in this country.  The implication of what Mr Atkinson has written is definitely that the “negative…force” associated with “spastic” has at some point extended to include the term cerebral palsy.  When did that happen?  Like I have said, if this is truly the case, then Scope should be heading a campaign to change people’s attitudes and understanding, not thankfully distancing itself.

    As a child, I was sometimes “abused” with the word “spastic” by other ill informed and ignorant children.  Sometimes I also heard the term used to “abuse” children who were just seen as somehow different.  Honestly, it always left me slightly bemused.  From a very young age I was aware that spastic was simply a medical term, one that the professionals who knew me at the hospital used freely and without any hint of malice.  My parents always made sure that I knew it was only a term of abuse in the minds of ignorant people.

    That Mr Atkinson, the CEO of one of the best known disability charities, should be implying that he is “thankful” that Scope decided to distance itself from the simple, widely accepted medical terms used to describe my disability is appalling.  To my mind, his ill-expressed opinion has done more to perpetuate the “negative….force” associated with the term spastic – when he should be doing all he can to mitigate it.

    His implication, and tacit acceptance, that this same “negative….force” has been extended to the term cerebral palsy is shocking.


  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
     forgoodnesssake said:
    oh joy ...I have just been notified that i have earned 5 points and a "name-dropper badge"    Give me strength!
  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    I would also like to ask Mr Atkinson why he has he feels that naming a charity “Cerebral Palsy Society” or “Action Cerebral Palsy” would somehow be creating a “brand” that was a “negative force for change”?

    Is Mr Atkinson aware that there is actually a charity called Action Cerebral Palsy that is operating in this country?  I must assume that he was unaware of this charity - otherwise it was extremely unwise to implicitly label them a negative force for change.  

    This is the link to their website

    https://www.actioncp.org/

     I wonder how it would respond to Mr Atkinson’s professed opinion?  Is their work having a negative impact on change?

    Since Spasticity is also one of the range of symptoms connected with Multiple Sclerosis, why has Mr Atkinson singled out the use of the term Cerebral Palsy as being a negative force for change”?

    Why does he feel that the use of the universally accepted medical term for our disability carries negative connotations not associated with other health conditions, even other conditions that can also cause Spasticity?

    Why does he feel thankful that Scope has distanced itself from the term spastic and the term Cerebral Palsy?  Surely his charity should rather be using its resources to confront ignorant and ill informed opinions about “spastics”, not leaving people with Cerebral Palsy to deal with the such opinions alone and unsupported.  CP and spastic are simple medical terms and he should be working to re-educate the ignorant, not passively accepting that they are terms of abuse which Scope is thankful to have distanced itself from.

    I think he has a lot to explain here.
  • derekliv
    derekliv Community member Posts: 6 Listener
    thanks @BeccyJ and @forgoodnesssake Like you I am just speechless about how far Scope has moved away from its roots.  As you know I am working on this with my wife @emmaliv and we are increasingly of the view that CP needs a new national body to speak for adults with CP.  We will keep you posted and of course would welcome any help support as we try to use energy and frustration with Scope and current NHS provision as a force for positive change
  • Bubbles83
    Bubbles83 Community member Posts: 28 Connected
    Hi again, just catching up on this thread and like so many of you have stated 'spastic' would be used to refer to my Spasticity during me earlier years, i knew what this meant and was not offended by any means, fast forward 20 30 years and it now has a negative connotation, this term was used through out my school years, and reinforced my feelings that i was in fact an outsider, isn't the real issue here about re-educating, stop being so politically correct, people get so offended so easily the worlds gone mad, whatever happened to'say it as it is' an attitude i still process today  we should be able to talk openly and honestly about things and it frustrates me that this is no longer the case, if i was born now i think i'd be so fragile and scared of something that i should be embracing....to a point! as for scope distancing themselves, again it's doing whats right by the society  we now life in and that is completely wrong, how is anyone in this day and age that has a disability of any sort supposed to grow up into and independent confident human being when the moral police are out in force!
  • quinrah
    quinrah Community member Posts: 22 Courageous

    Hi everyone,

    Thank you all for sharing your views with us over recent months concerning Scope’s position on Cerebral Palsy.

    We think this is an important debate but it seems that exchanges online have not allowed us to resolve your concerns and a number of you remain frustrated. It really matters to us to hear your views and discuss your concerns so to take this forward we would like to invite you to a meet with us. Those who have participated in this thread will receive an email about joining a meeting.  Both myself and Mark Atkinson will be there to hear your views and to clarify Scope’s position. 

    The emails regarding the meeting will be with you today. 

    Best wishes
    Lisa

  • Cheese2323
    Cheese2323 Community member Posts: 4 Listener
    BeccyJ said:
    Thanks for the reply.  While these goals are very commendable, they are connected to disability generally.  My query is specific to Cerebral Palsy.  

    Cerebral Palsy is a lifetime condition but the prevailing view seems to be that it "disappears" once the child becomes an adult.  This is clearly incorrect and a cursory review of the Cerebral Palsy forum on this website clearly demonstrates that adults with CP are facing all sorts of issues but hit a brick wall when it comes to getting any help.

    I note that there has been a lot of information on this website recently about promoting MS awareness.  Emma's petition (which you can find the link to in my original post) highlights that the population affected by Cerebral Palsy is similar to that with MS.  Yet, as she has so well expressed,  there seems to be little to no interest in helping adults with Cerebral Palsy get the treatment they need to help them maintain their functionality which means that there is a greater likelihood that they will end up as a bigger burden on the state.  Instead we are faced to deal with deteriorating mobility etc on our own.  

    The doctors in my local area freely admit that there are no services for adults with cerebral palsy and also admit that this is a nationwide problem.   If Scope can get behind campaigns to raise awareness of issues related to MS what does Scope do to raise awareness of the issues faced by adults with cerebral palsy?  How will the situation ever change if organisations like Scope don't raise awareness of these Cerebral Palsy specific issues, much as it appears to do for MS specific issues?

  • Cheese2323
    Cheese2323 Community member Posts: 4 Listener
    Hello BeckyJ   Can I ask what area you live in as my daughter will be hitting 18 in July this year and not only am I concerned but I also am analysing whether there is a postcode lottery for my uni studies from borough to borough. Louise x


  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    @quinrah

    Thank you for giving us this opportunity.   I haven’t replied to Mr Atkinson yet but I am hoping that I will be able to join this meeting through Skype.  Given my current personal circumstances I am unable to fully commit at this stage but will make sure to send my confirmation to you soon.

     I think there are several issues that have been raised in this thread that remain unaddressed by Scope. Obviously this isn’t just about me and what I think needs to be discussed so I am going to put together some suggestions as to what might be included in an agenda.  If anyone who has so far been involved in this thread (or anyone now reading it) has any other suggestions, I’d like to get them included too.

    I am very aware, though, that this isn’t just about what those of us that have commented on this thread feel or think.  

    First, this is about everyone with CP, particularly all adults, whose unique issues have been left unrepresented since Scope became a pan-disability charity.  As @Bubbles83 said, by taking the path it has, Scope has taken away our last real resource.  How would the board of Scope feel if they were in our position as adults with CP?  How would they feel if one of Scope’s  representatives implied that people with CP didn’t need unique representation or face unique challenges?  Why are we the only major impairment group that apparently doesn’t need unique representation?  How would the board of Scope feel if they were in our situation and they read that the CEO of the charity once founded uniquely for people with CP and that had historically worked so hard for them was now on record as saying he was “thankful” Scope had distanced itself from CP?  After all, each of these comments is freely available to read.  Anyone with CP can read them, not just those of us commenting here.  Is Scope happy to leave all of this unaddressed?

    Second, it is also about every single person who has in some way donated to or volunteered for Scope thinking that Scope is still the charity for CP.  This is not an unreasonable conclusion.  Google “MS Charity” and the MS Society is the top result.  No one would question that the MS Society exists to represent people with MS and their unique issues.  Why would you?  Google “ Cerebral Palsy charity” and Scope is the top result.  Scope was historically the CP charity and its charitable objects state it exits to benefit “especially those with CP”.  Why would anyone question whether Scope was still the charity for CP?  Asking that charity what they do that uniquely benefits those with CP should be one of the simplest questions for them to answer - and in reasonable detail.  Yet, so far the only reply received is that Scope has a “particular interest in CP”

    Thirdly, in view of all of this I also believe that these unaddressed issues also have significant implications for Scope’s reputation.  Even Scope’s own representatives appear confused about Scope’s connection to CP.  @quinrah is adamant Scope has a particular interest in CP and yet this does not appear to be the message that Scope’s representatives are giving out.  (Please refer to the comments made by Kirsty and Sam and also the conversation @forgoodnesssake had with some Scope representatives and which she reported in reply to my post on the Parents and Carers forum in October).

    As I have said, I am happy to record here what I still believe needs to be addressed so that this could potentially be used as an agenda for the meeting.  I am happy that Scope has given us the opportunity to meet with us privately but their replies to us should not remain private.  They should be made a matter of public record so that everyone who may wish to support Scope in future can be sure of what exactly it is that they are supporting.

  • Bubbles83
    Bubbles83 Community member Posts: 28 Connected
    @BeccyJ completely agree with your above statement, i was quite surprised   to receive an email, and while i am happy that we're  now being given the opportunity to discuss the issues raised unfortunately due to my increasing levels of pain it's hit and miss whether i'll be able to attend (in person at least) is it possible to have a group skype chat, it's just an idea it would make it easier for people like you and me who are not able to attend to still feel part of the meeting and put our points across collectively.

    take care 
    Diane 
  • quinrah
    quinrah Community member Posts: 22 Courageous

    Hi @BeccyJ and @bubbles83

    Please do reply to the email to confirm if you'd like to join by Skype and Jenny will be able to make the arrangements. Also happy to receive your suggestions for topics/questions for the agenda as you mention.

    If it's required after the meeting we can provide a written summary of the discussion .

    I'm looking forward to meeting you soon,

    Best wishes

    Lisa

  • forgoodnesssake
    forgoodnesssake Community member Posts: 500 Pioneering
    I've had my invite, both by email and snail mail (cos I also wrote to the CEO and Chair of Trustees)  I have said that I can attend in person and asked about travelling expenses; which I have been told can be met.  I have also indicated that, given the timing of the meeting (10am on a Monday with no choices given, just a set date and time) I will have to stay overnight in London as I live in the north of England and cannot get there by train for a meeting starting before about noon.  Not sure what will happen about that.
    I am very interested to meet the CEO in person and to have the chance to ask questions directly; I also have feedback from a number of other people with CP and/or their parents which I will present if possible.
    @BeccyJ I completely agree with what you say and that we need a clear and transparent dialogue if anything is to move forward.  Personally I do also want to know the views of the Trustees, since they are actually in overall charge (legally) of the direction Scope is going. 
    It will be great to meet up with anyone who can make the meeting and I look forward to hearing how the Skype meeting/s go. 
  • quinrah
    quinrah Community member Posts: 22 Courageous
    Hi 

    I just wanted to confirm that this meeting will now start at 11am and run until 12.30pm to allow more time for those travelling from outside of London. 

    Best wishes
    Lisa

  • forgoodnesssake
    forgoodnesssake Community member Posts: 500 Pioneering
    edited February 2018
    @BeccyJ, @Bubbles83, @Derekliv, @Emmaliv, Hello all...I am just collating lots of stuff about what Scope is (not) doing re CP in advance of tomorrow's meeting.  I really hope some of you will be there but fully understand if you can't be.  I will feedback here!
  • Bubbles83
    Bubbles83 Community member Posts: 28 Connected
    Hi everyone i must apologise, ive been literally bed bound since last Friday with what i'd consider to be a bad cold, so i haven't checked anything or done anything until now! i'm gutted that i missed such a vital opportunity i'm still not a 100% but i can't stay in bed forever! everything's just gone against me this year already despite my good intentions :( anyway i hope everyone's okay and you all had your chance to put your points across :)


  • forgoodnesssake
    forgoodnesssake Community member Posts: 500 Pioneering
    Well we, @emmaliv @derekliv and me met with Scope CEO, @quinrah, the company secretary (who just took notes) and another manager person who I am afraid I have completely forgotten the name of!  He said he has been with Scope for 30 years and has worked in their schools and other services. 

    CEO said more than once that he wants Scope to be famous for good quality (generic) disability information and support.  Which we agreed is fine, but what about CP?

    Essentially, he said that with the new(ish) direction Scope is going in being a pan-disability information and support organisation it will not be focussing on specific impairments except a bit on CP because it is still in their charitable objectives.  He readily admitted that they have let their CP content/knowledge slip over the years and to that end (and probably also because people are starting to make a fuss..) they will be putting a few resources into upping their CP content online and have employed someone ("Richard") to work specifically on CP content.  He starts soon (don't know for how long) and we were asked if we'd like to be "in the loop" with regards to what they do on CP.  We were also told that they would be consulting more widely with the CP population. 

    CEO stressed (at least that was my impression) that Scope will not be actively taking up CP issue campaigning roles or sitting round the table as CP experts but aims to have some better and more comprehensive info and signposting within its suite of information.

    This begged the question, which we asked, as to why Scope is hanging onto any mention of CP at all as to have one specific impairment mentioned when you are clearly aiming to be known as non impairment specific pan-disability charity seems very incongruous? Especially since Scope's Memorandum & Articles (governing documents) have been amended quite a few times over the last 10 - 15 years.  The CEO said that the trustees wanted to keep that specific mention of CP, possibly cos it is part of Scope's legacy. 
    I asked how many of the trustees have CP and was told none; I suggested a co-option of someone if they are serious about upping their CP knowledge!

    I have looked back over the last few years worth of Scope annual reports and accounts to the charity commission and as yet have found no specific mention of CP and similarly there is no mention of it in their new 5 year strategy, so we must be under no illusion that they will in any way be a pro-active CP charity any more; that is clear from everything that I have read and heard.

    It was, of course, a very civilised meeting, but very much leaves me with the same view I had at the outset; CP is now an anomalous adjunct to the main business of Scope.  However, as they have said they are going to do some more CP stuff we will see...





  • Bubbles83
    Bubbles83 Community member Posts: 28 Connected
    @forgoodnesssake Thank you for letting us know how it went, i don't really know what to say as it seems that the issue is just going to be left, personally i'd be fuming, yes they've agreed to meet but in all honesty what's been done that is credible to what we've said, They've pretty much spelt it out for us, it also seems like this was just a meeting to pacify things so things didn't go any further (my view at least) As a person with CP ive never felt more like a minority then i do today and its situations like these that compound matters, yes everyone can sit round a table and 'discuss' the issues but the fact that none of there trustees even have CP is a complete joke! as far as i'm concerned there is no reason for me to come back here for 'support' and i shall be instructing my dad to withdraw his direct debit ( which he has paid with out fail for 35 years)
    i'm disappointing and disgusted that a 'chairty 'such as this has let us down all so badly! 
    Diane
  • forgoodnesssake
    forgoodnesssake Community member Posts: 500 Pioneering
    @Bubbles83 I realise that in trying to give a basically factual description of the meeting it might look as if we were "satisfied" because they say they are going to do some more CP stuff.   However nothing could be further from the truth.  But what with this being a public board I am being very careful what I say (I do  not mean that we were gagged, I just prefer to keep my powder dry, as it were!).  But yes, it must be widely announced that Scope is no longer a CP charity and anyone who donates, or is thinking of donating via a will or legacy on that basis might want to rethink...
  • Stayce
    Stayce Community member, CP Network Posts: 843 Pioneering
    edited February 2018
    Hi @forgoodnesssake
    Thanks for updating this thread about the discussion you had. I think transparency is important 

    I believe many issues can be addressed pan disability wise such as employment, education, benefits etc. But this I personally don't think is true of healthcare or access to healthcare for those with CP. For the founding rationale to be lost is sad to hear.

    About 7-8 years ago Scope produced a Campaign Cookbook (don't know if that was mentioned)
    aimed at disabled people setting up campaigns on things that matter to them e.g there was one on reducing waiting times for orthotics in one local area. Anyway just a thought that sprung to mind reading your post 

    The CP content is an interesting one as many charities are now only producing content based on the Information Standard e.g. that which can be scientifically evidenced. Whilst I think this is crucial - it's a fine balancing act because much of what I have posted about what I have found to be useful with CP wouldn't be featured in the content as there is not enough evidence out there - so big dilemma there 

    The other thing with that CP content is there's a role for signposting to other charities that concern CP related issues e.g. Hemihelp, Dystonia Society, Ataxia Society which may also prove useful as points of contact going forward, which currently isn't done very much (or not at all) 

    Just my thoughts 

    Thanks

    Best






  • Bubbles83
    Bubbles83 Community member Posts: 28 Connected
    @forgoodnesssake thanks for writing back, i know i can come across a little harsh in my thinking but that's only because i'm fed up of been fobbed off, it's not personal by any means the 'system' is so wrong and that's where my frustrations lie :). imagine just for a second that a charity for MS or asthma etc where to turn around and say the same thing everyone would be up in the air, 'we're not specifically for asthma, but we're for all breathing related conditions' this is exactly what scope have done and its totally unacceptable, anyway at least we  all know where we stand now.  And i did feel an undertone to your statement  ;) i think sometimes it's hard to remain partial when there's so much that still needs to be said but i do understand where you're coming from 

Brightness

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