Better Care for adults with CP - Page 3 — Scope | Disability forum
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Better Care for adults with CP

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  • emmaliv
    emmaliv Community member Posts: 17 Connected
  • htlcy
    htlcy Community member Posts: 128 Pioneering
    Thanks for this, @emmaliv , and sorry it's taken me so long to see this. Will definitely have a look. 
    Heather
  • derekliv
    derekliv Community member Posts: 6 Listener
    Hi @quinrah
    Sorry for delay in responding. Thank you for coming on to the forum and engaging in the debate. It is good to see that someone senior at Scope is listening.

    I completely understand the 5 year social agenda strategy that Scope has and it is of course worthy. However, it feels somewhat shortsighted.

    As has been pointed out in this forum, the lack of medical support and advice to maintain function remains a massive barrier to people like my wife @emmaliv who are educated and wanting to (and until recently) able to work.  Without the basic medical support, the social agenda that Scope is pushing is a waste of time and far too late.

    Unfortunately there is complete apathy amongst the medical profession and charitable groups (scope frustratingly included) about the need to fund better research and provide improved and coordinated services specifically for and looking at the impact on the CP adult population.  The frustration and anger you are seeing in this forum is that we are looking for help us in this campaign. Scope is seen as the CP charity, yet as you admit this key issue is not on the agenda and there is no specific CP stream of work//activity being undertaken. To be honest the support that has been offered feels token at best. If we can't turn to Scope, who can we turn to?    

    @BeccyJ
  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    @quinrah

    I would also like to say thank you for taking the time to reply.  I would also like to add my support to all the points raised by @derekliv and @emmaliv

    I would also like to request some clarifications of some of the points you've made.  Your goals are commendable of themselves but I cannot see anything in your reply that demonstrates an especial interest in CP.  You say that CP is still important to Scope and yet Kirsty, in her reply to me, said "Although we provide information about cerebral palsy through our website and helpline, we don’t offer any services or campaigns that are specifically aimed at CP.". How does this demonstrate more than a cursory interest in CP?

    Referring to your charitable objects:  What is it that Scope does that is "especially" for CP?  Everything you have mentioned will be of benefit to anyone with a disability, which is great, but what is it that you actively do that specifically and uniquely benefits people with CP?

    I have checked the support and information section of your website and note there's a section specifically for CP.  I read through that information, which appears to be a very superficial outline of the causes and effects of CP.   It might prove a useful starting point for a parent of a newly diagnosed child but is, at best, of extremely limited value to me and, I would argue, anyone else, be that a parent, child or adult, who has got beyond initial diagnosis.  

    I know what CP is and how it affects people.  I've lived with it all my life.  What i need is someone who will act as a champion for me to get my concerns heard.  

    You say you want to update and improve the information you provide on your website about CP.  How can you really expect to improve the resources you provide for the CP population without first taking the time to understand the needs and issues of your client base?  Well, we are here now, telling you that CP is causing us, as adults, all sorts of issues that are completely unrecognised and misunderstood by the medical profession.  How can you really provide valuable support to adults with CP when there is a complete lack of understanding all round of the problems we face? 

    How can a charity claim to "retain expertise" a specific condition if it shows no interest in researching how it affects people throughout life?  No doctor could claim to "retain expertise" in a condition if he or she wasn't constantly seeking to increase and improve their knowledge.  How does Scope show that it is interested in increasing knowledge and understanding of CP?   We, as CP adults, live with the condition every day.  We can compare what received medical wisdom says against our personal experience.  We can tell you that received medical wisdom has a lot to learn.  How will that change if someone doesn't compile all of our life long experiences into a coherent study which can be presented as an evidence base for further research.

    I want to be clear that this isn't about trying to cause trouble.  This is about trying to get someone to listen to us.  I genuinely feel these are important questions and this thread shows I'm not alone.  

    Thank you so much for taking the time to address my concerns.  
    @Bubbles83
    @clairek5
    @forgoodnesssake
  • DanielWearne
    DanielWearne Community member Posts: 6 Listener
    Well said Becky. As a 36 year old man with cerebral palsy, I concur thoroughly with what you say. Scope has been diluted to the extent that it does not even provide adequate public information about cerebral palsy and its effects, let alone providing a campaigning platform to address the specific problems faced by adults (and indeed teenagers) with. Eternal palsy. Hemihelp (I have right hemiplegia) at least provides more extensive information about more complex issues related to cerebral palsy, which is admirable given the lack of studies and research into cerebral palsy through the lifespan. I fully support your attempt to get our voices heard. Thank you. 
  • DanielWearne
    DanielWearne Community member Posts: 6 Listener
    Eternal palsy = cerebral palsy. I'm typing quickly know my phone. But a rather appropriate typo I think. 
  • Reg
    Reg Community member Posts: 109 Pioneering
    I am old enough to remember the spastic society and to be very grateful for the help and support they gave when I was diagnosed with mild CP whilst at university. This was by a local neurologist who thought the diagnosis was obvious and wasn't very helpful in relation to the problems with falling and writing that were hampering my progress at university.

    The spastic society sorted out a referral to the Atkinson Morley for inpatient assessment and helped with provision of braces etc. Their report helped get me the support I needed to get through my degree and with getting through a post graduate qualification. That led onto employment and my paying taxes until forced to retire early in my 50s.

    Over the years I have found that the NHS have been great at sorting out hand operations (5 so far ) and in prescribing loads of baclofen and other tablets but they don't provide the specialist service you see with other conditions , such as the MS nurses and asthma clinics.  I can't help speculate that myself and many others would be able to work for longer , paying taxes to plough back into the NHS , if there were specialist CP services , such as those provided via the spastic society all those years ago.

    All the articles you read and the BBC blog explains that the name change from spastic society to scope in about 1994 was down to "spastic " being viewed as a term of abuse. I think somewhere down the line those with CP lost their advocate charity and political correctness morphed into a generic pan disability charity , with no one looking at the help needed by CP adults or research into CP. From my perspective the MS charity website has far more helpful information on muscle spasms and drugs etc so I struggle to see how scope can say that it still has a focus or special interest in CP. 

    I would be interested in seeing if scope would think of a "CP-EXIT" (after a referendum of course of interested parties ) so that some of the resources that a lot of people donate to scope thinking of it as the old "abusive" spastic society could be diverted into specific coordinated help and research for those with CP. Yes , there should be coordination with a generic pan disability charity and with , for example , the MS society where there is a common cause such as state benefits or new drugs for muscle spasms but we would then be able to have a dedicated national spastic charity focused on a common medical condition , that is currently uncoordinated - that is a big rich considering most of us are uncoordinated in real life!

    Such a CP- exit could then advocate with the NHS to get the specialist adult services needed and may be more like the legacy envisaged by the 3 parents of CP children who set up scope all those years ago.

    Hope this post isn't too controversial and that some of the trustees will be willing to see if scope remains able to be a generic disability charity whilst having a special interest in CP.

    Thanks to Emma for trying to advocate adult NHS CP services and for starting the debate

    Reg

    I am a Scope volunteer.
  • quinrah
    quinrah Community member Posts: 22 Courageous

    Hi everyone,

    Thanks for the further comments.

    As I have said Scope does continue to have a particular interest in cerebral palsy. I agree that our information is due some updates and improvement and that’s why, as I have described, we have plans to do that over the coming year.  

    I’m sorry if the offer to help amplify the campaigns of others where we can has come across as a token gesture. That’s genuinely not my intention. Our channels have the potential to reach a lot of people and I know that when we’ve worked with other campaigners in the past to spotlight their campaigns it has made a difference.  

    I appreciate it’s disappointing to many of you that we don’t have plans for health focused campaigns ourselves but there isn’t anything further I can add to what I’ve already said on that. With very best wishes for the campaign.

    Lisa

  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    @DanielWearne thanks so much for the support.  If nothing else I think this has proved the extent of the lack of interest in the problems we all face as adults with CP.  "Eternal Palsy" is very apt!  All we have to do is try to find someone to realise how apt it actually is!

    @Reg.  CP exit!  That made me smile!  I agree with what you say.  Historically my family has always supported Scope whenever they can, in the belief that the funds raised were being used to specifically benefit those with CP. @Bubbles83 has said the same. This has been a real eye opener for so many people.  I've mentioned this thread to a few friends.  They have all had the exact same reaction: "But people must be donating to Scope thinking they are donating for CP."

    Nothing that any Scope representative has said personally gives me any reassurance that they have more than a passing interest in CP. They say CP remains important to them but, try as I might, I have been unable to discover how they demonstrate this specific interest on a daily basis.  I have asked more than once "What does Scope actually do that specifically and uniquely benefits those with CP?"  I have reread each of the replies we've had and cannot see that this question has been addressed at all.  Again I will be more than happy to be corrected if I have missed this information in their replies.

    Like @Reg I have sometimes used the MS Society website for information and advice.  If we have both had to resort to using the MS Society for information, I am sure there must be others.  That in itself appears to me to be a real indictment.  

    We all remember the types of services offered by the Spastic Society, as you mention.  They were real, tangible benefits and you and I and 
    @forgoodnesssake all have experience of this.  If those experiences aren't proof of the benefit of a CP focussed charity, I don't know what is.  The fact that CP in adults is such an under-researched area should give any charity more than enough to do for years to come.

    Each one of us and so many on the CP forum would have so much to offer Scope if, as they say, they are genuinely interested in "updating and improving" their CP "information and advice".  It will be interesting to see what develops over the next year and to see what Scope deems to be an improvement of its CP services.
  • forgoodnesssake
    forgoodnesssake Community member Posts: 500 Pioneering
  • Bubbles83
    Bubbles83 Community member Posts: 28 Connected
    Hi again guys, i'm keeping and eye on this thread while trying to find resources myself in the, hope that I may find something buried deep in the pages of google, but....nothing. I shall check back in a few days.

    take care 
    Diane
  • Nasmamu
    Nasmamu Community member Posts: 45 Connected
    As a person who was born with Spastic Diplegia (Diagnosed at 2yrs old, now 38!) The contrast between my care as a child and care provided post 18yrs old is alarming to say the least. As a child they were there to support my parents and me in a way I will NEVER forget. The care was 2nd to none! As soon as I hit 18 though it was almost like I had eaten the forbidden fruit in the garden of Eden and was therefore banished for eternity. Not a SINGLE follow up with a consultant not any help from my GP. For CP. It's almost a way of saying "We did our best now please exit and let us get on with helping others, you've had your turn. have a nice life" now it's 20yrs later and I've gone from walking a fair distance albeit with slight pains and niggles to being 100% wheelchair bound and reliant on family (parents, wife, 2 brothers) to help me with washing/bathing, dressing, toilet needs (incontinence managing) virtually everything without any help from Dr's or Consultants. The CP didn't get worse, it's not that type of disability. What got worse are the side effects/ailments that come from years of pressure on certain areas of the body. I learned to cope through the strength of the family around me, how many others have had to do the same....

    Type in Cerebral Palsey on Google and there's pages and pages of help, info, support and advice.....for children. 

    Thank you for reading my late night ramblings. Would be interesting to find out how many of us have remained the same illness intensity wise, how many have got better or like me worse as we've aged.
  • Bubbles83
    Bubbles83 Community member Posts: 28 Connected
    hi as you can tell from the discussions in this forum we all feel the same, past the age of 18 there is no quality of care, like you and many others here we are simply forgotten and left to get on with it, I for one have experienced my CP deteriorating year on year as my body struggles to cope with getting older (baring in mind our muscles deteriorate far quicker then somebody who is able bodied) so although on the outside my body portrays someone in there 30's my my joints and muscles feel like that of someone in there 60's!, I don't get any follow ups unless I request one (and even then its pointless) physio is none existent and has been since the age of 16 (when I left school) any specialist care i.e hydrotherapy has to be paid for and even then I struggle to find places that cater for that, if im honest I thought id done the hard part, but as with you and many others we're finding out that the real struggle is now.

    take care
    Diane 
  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    Hi @Bubbles83

    I know what you mean about feeling like someone in their 60s.  I know when I was a child it was really drummed into me that I had a non-progressive condition so not to let my disability hold me back.  That is a good ethos and I have never been one to use my disability as an excuse but I think that advice also gave me a false sense of security and led me to ignore all sorts of warning signs, which I think, looking back, started in my early 20s.  When I was in pain I would almost push harder rather than slow up.  One paediatrician once told me that children with CP tend to develop very determined personalities and I think I've definitely always had a determination not to let my CP stop me.  I was completely blind to the effect it had on my body. Even after I became pretty much a full time wheelchair user out of doors I still kept pushing!  I agree with @Reg about having access to a CP clinic, like an MS or asthma clinic.  Having an annual or bi-annual appointment for example.  I think it would have definitely helped me to be more aware of the changes and effects CP was causing.  Even just having the chance to talk things through with a medical professional who understands the physical and emotional effects of CP would have been really helpful.  I think it is even more important for us to have access to a CP specialist and physio though.  Like you, I have struggled to find anyone to help me and the help I have had has been extremely limited both in terms of time and its benefit to me.  

    Like @Nasmamu says, I think the definite message you get is "You've had your turn" and it's family support and sheer determination that keeps you going - but I realise now that even that only gets you so far once your body starts protesting.  

    I really am at a loss as to who to go to when it comes to getting more help and treatment and advice.  Scope, the charity most associated with CP, is refusing to do anything to help.  The fact is that there must be so many people who just slip through the net.  No one knows how many of us are really struggling out there because no one can bothered to find out.  I'll keep an eye on the blog @emmaliv has started and do what I can.  It is a very small comfort to know I'm not alone in feeling alone!
  • Bubbles83
    Bubbles83 Community member Posts: 28 Connected
    @BeccyJ  thanks for reply, you're certainly not on your own, I think CP can feel very isolating so i'm glad view found this thread. Like you im a very determined individual my family has raised me to be a strong independent person, and that's how I've  continued to live my life, they taught me valuable lessons and  my whole family have stood by me through every step. As I entered my early to late twenties I started getting more pain then I was used to but I have a high pain threshold and I'm not somebody who complains  unless im actually on the floor, so I carried on as I always do to the point im at now which unfortunately is wheelchair territory, again something view always been adamant I wouldn't entertain but im finding I cant walk very far these days, I have pain in my back and hips I pull muscles doing simple things, sometimes I feel a shadow of my former self. That for me is the hardest thing to come to terms with, wanting to do all the stuff you used to be able to do 5 10 years ago to then overtime realising you cant anymore. Like you I've  always been told CP is not a  degenerative condition, I think that statement is completely false, but every time I see my gp this exactly what they say to me ( although I don't make ahabbit of doctors visits because all my issues are connected to my CP and im sick of explaining myself to get the same answer. Its a very lonely place sometimes, I know I could go to my partner or family with absolutely anything but I don't because id sound like a broken record and its almost harder for your loved one as they eel more helpless then you do.

    take care 
    Diane.
  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    @Bubbles83 thanks for your reply and the support!

    @quinrah

    In your last post on this thread you stated that CP is an area in which Scope "retains expertise" and that, over the next year Scope will be improving it's CP information and advice.

    Therefore, I would like to draw your attention to a post on the CP forum today.  One contributor made the following comments:

    "I think you probably see far less adults in your orthotic clinic largely due to there being no NICE guidance currently for people with CP over the age of 25 ( NICE guidance for over 25 with CP is not due to be published until 2019)."

    (https://community.scope.org.uk/discussion/35745/why-do-less-adults-use-orthoses-than-children#HQgOrkYTV1LDA505.99)

    This was the first I'd heard about any upcoming NICE guidance.  I was naturally surprised that, having said in your earlier reply that Scope has a "particular interest" in CP, you failed to mention the upcoming NICE guidance.  

    Therefore, could you confirm:

    1. Were you aware of the upcoming guidance?
    2. Given that Scope "retains expertise" in CP, have you been approached for comments/consultation etc?
    3.  You mentioned that you will be improving your CP information and advice over the next year.  How will you be doing this?  What improvements can we expect to see?  Is there anything we could contribute?

    Many thanks
  • Stayce
    Stayce Community member, CP Network Posts: 843 Pioneering
    edited September 2017
    Hi @BeccyJ

     Glad you found my earlier post useful. Regarding the NICE guidance progress for over 25s with CP you might want to have a look at this https://www.nice.org.uk/guidance/indevelopment/gid-ng10031/documents

    It looks as if Scope are a Stakeholder on this, but have not publicly posted a response on the consultation document. They may have responded privately.

    Hope it helps
     Best
  • forgoodnesssake
    forgoodnesssake Community member Posts: 500 Pioneering
    I haven't had time to look at this yet but am very aware of other initiatives which Scope "sign up to" as members or supporters, but actually do nothing at all.  Some years ago they were actually quite active in the Communication Consortium of the Communication Trust. However the CEO changed, staff moved on and for the last few years they have played no active role at all.  This might not be such a problem if it did not, to those who are not aware, make it LOOK as if Scope and CP/physical disability is being properly represented on consulattions etc, when in fact they are not.  If Scope is not really doing much at all about CP..be honest about it and let someone else do it..!!
  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    @forgoodnesssake It certainly would appear to be a similar situation here then.  Scope are listed as stakeholders in the upcoming NICE guidance but appeared to be completely unaware of it when I asked what Scope was doing to promote the cause of improved medical treatment for adults with CP!!

    @quinrah
  • quinrah
    quinrah Community member Posts: 22 Courageous

    Hi @BeccyJ

    We’re aware of the upcoming NICE guidance and plan to review the consultation  questions to see if there is expertise we can share.

     We’ll shortly be starting a project to review and update our CP information and support. We expect to publish  refreshed  and new information and resources in a range of formats on our website and also plan to increase the CP  focused resource on our helpline and community.  We’ll be asking users to get involved in the review and refresh of our information and resources so yes there will be ways to contribute. We’ll share details of how you can get involved via the community in due course.

    Best wishes

    Lisa

Brightness

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