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Better Care for adults with CP

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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    Hi

    I am sorry if you feel that Scope isn't doing enough for people with CP, we are a pan-disability charity and have done a lot to make this country a place where disabled people have the same opportunities as everyone else.

    Over the past five years Scope has:

    • Improved attitudes towards disability and increased awareness of the challenges disabled people face.
    • Influenced government to commit to halve the disability employment gap.
    • Campaigned with many others for the Care Act 2014, which enshrines a legal right to a personal budget and promotes disabled people’s wellbeing.
    • Worked with retailers, transport companies and telecoms providers on how to improve their products and services to disabled consumers.
    • Provided life changing information, advice and support to over 250,000 disabled people and their families each year.
    We do have a lot of CP specific information on the website, providing information and support to people with CP is an important part of Scope’s heritage and we have the CP category too.

    I understand you feel frustrated that Scope in no longer just for people with cerebral palsy, but we do feel very proud of the work we have done for disabled people as a whole, including people with cerebral palsy.

    We really appreciate feedback, what is it that you would like to see the Scope online community do more of? We have community champions with CP or with experience of CP, we have staff members who have CP and we are currently looking to recruit a CP specialist to add to our list of advisors.  If there are other things that we can do on the community to further support people with CP, then please do let me know.

    Sam 

    Scope
    Senior online community officer
  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    edited August 2017
    Thanks for the reply Sam.  

    It's not really a question of what the online community does or does not do.  It's about having a champion for Cerebral Palsy in the same way that the charities like the MS Society or Arthritis Research UK act as champions for MS and Arthritis.  Both MS and Arthritis present unique challenges which clearly are not and cannot be met by an online pan-disability discussion forum.  Although I can't speak for MS Society or Arthritis Research, I feel fairly confident they would agree with me.  Why does Scope feel that the same cannot be said for CP?

    Over the years I have read or heard news stories about research into conditions like MS, Arthritis and Alzheimer's and even news about certain breakthroughs.  I have friends who have been affected by each of those conditions so am genuinely pleased.  But I can honestly say I have never once heard or read any similar stories about research into CP, its causes and lifelong effects or any medical breakthroughs connected with CP.  Why not?  It seems reprehensible since CP affects 1 in 400 of the population, hardly a rare condition.

    Now that Scope is a pan disability charity, who will lead a campaign for more research to be done on the causes and effects of CP?  

    Who will fight for CP to be recognised as a lifelong condition which, while not progressive in the true sense, can result in premature ageing and cause significant functional deterioration.  

    As @forgoodnesssake has said, the medical profession needs to realise that treating the effects of CP as acute issues is a short-sighted approach.  Who will stand up for the CP population and fight for that recognition.

    For the sake of comparison, I've looked at the website of the MS Society.  Here are some direct quotes from the current website:

    "MS can be tough to deal with, especially when you've just been diagnosed. But you're not alone.

    The MS Society can help you get

    We also offer support to:

    Yet MS patients have Scope to turn to as well for their more generic disability issues.  Why is it that Scope decided that the CP population only needs generic, not CP specific and tailored support?

    Regarding MS Research the following is directly from MS Society website:

    "Since 1956, we've invested over £155 million of today’s money in research.

    Until we find a cure for MS, we will continue to fund world-class research to make sure people with MS have the treatments and services they need."

    How much has been invested in comparable CP research by Scope?  As Scope is now a pan disability charity, who is investing in CP research in the same way as MS Society invests in MS?  Who is there to co-ordinate a CP register along the lines of an MS register?  If there isn't any comparable research being funded into CP, then all I can say is I rest my case.  What could better demonstrate the lack of interest in or support for the CP population, particularly as we no longer even have a charity of our own.


  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    I suppose I can only respond regarding the online community @BeccyJ - we aim to be a safe space for ALL disabled people to get access to information and support and to meet other people.

    We do have CP specific categories and people on the community with personal experience of CP. No two people will be affected by their cerebral palsy in the same way and so we offer support on whatever issues arise from CP.

    I personally don't think that being pan-disability stops anyone getting support here, we don't prioritise any member over another so any person who comes to the online community receives support, information and help. A person with CP who asks a question or shares their experience doesn't get any less help because the next member has MS.

    I can see that you are frustrated that Scope isn't just about CP and that this forum helps all disabled people, but in my opinion, that doesn't stop any person with CP using our services and getting a great level of support.

    Some people with cerebral palsy may have associated conditions like;

    Perhaps in being a place for all disabled people, members can share experiences of shared conditions even if the primary diagnosis isnt CP and that may help them?

    Our aims are for all disabled people, that fully includes people with CP, Everyday equality, our five-year strategy, sets out how we will work to drive social change so that disabled people have the same opportunities as everyone else. 

    I fear I'm not going to be able to satisfy with an answer on this as a bigger picture of Scope as a whole, I look after the online community and as I said, if you have any suggestions on how we can improve this service for people with CP, then please do get in touch and I would happily look into that and work towards any improvements.  If you would like to make a complaint, then you can use the complaint form here.


    Scope
    Senior online community officer
  • Bubbles83
    Bubbles83 Community member Posts: 28 Connected
    i'd just like to add that over the years I've tried to get help support and advice from varying agencies and nobody seems inclined to do anything, I always get the same answer' which is somewhere between I'm not really sure what more we can do' which has the undertone of well you've had all the paediatric operations assessments ect ect and there's nothing more available , to I haven't got the expertise to answer your CP specific questions. If the people in the NHS cant help then who actually can, there are a generation of people out there with nowhere to turn and its simply not acceptable, I do worry about my future I  have lost about 70% of my mobility (and im only 34) through years of being ignored, and been told to simple 'take some pain killers' I don't think anyone in the medical profession wants to have these vital conversations but it's something that really needs to be talked about. When I was a child everything you could imagine was was available to me to get me on my feet,hours of painful surgery intensive physio, hydrotherapy and and years of hard work from myself and my family to get me to where I am but now its all been undone with nowhere to turn.

    Diane
  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    Hi Diane

    Thanks for adding your support.  I just wanted to let you know that your experience sounds like an exact replica of mine, which is both reassuring and frightening.  I too had intensive support as a child and very supportive relatives who helped me to achieve as much as I could.  I started to notice increased muscle tightness and had additional problems in my 20s and went from being ambulatory to wheelchair bound out of doors.  Asking for help was like talking to a brick wall.  When I asked for support, I sometimes got a blank stare in response, like they didn't quite understand what I was talking about.  At one stage my mobility was so bad that I barely had the strength to stand up and I was signed off work.  It was quickly made clear that there was no help available to me as I was no longer a child.  When I asked what could be done, the exact response was "You need to go back to work and start rehabilitating yourself" which left me completely stunned.

    Like you said, there's a whole generation of us that seems to be invisible and appears to have been completely written off.  I really don't know how we can get recognition of the problems we face, that CP isn't a static condition and acknowledgement of the fact that CP isn't solely a condition that affects photogenic children.  Those photogenic children will find themselves out in the cold once they get to 18!  We're lone voices and I really feel that we need the support of an organisation that has greater weight with the NHS.  

    The MS Society is compiling a register as part of its evidence base to focus the treatment and support given to MS patients.  I really thought Scope with its historic links to CP, and its national voice, would be best placed to do something similar and fight for adults with CP to receive better treatment at the hands of the NHS.  It seems to me that CP adults, as a unique group, are not one of their priorities.  We can expect their support and the full force of their campaigning strength if we are facing issues that are common to anyone with a disability but I don't feel like I can expect them to campaign for every adult with CP when it comes to this CP specific issue. There can't be many congenital conditions that are only treated in childhood and where there is a complete lack of interest in investigating problems that develop in adulthood.  Almost every resource I have found mentions CP and children in the same breath, giving no indication of the lifelong effects of the condition which are completely under researched.

     If we can't get Scope, the champion of the disabled, with all its historic links to CP, to recognise that adults with CP are desperate for more support, then I don't hold out much hope of being heard by anyone else.

    Sam: Thanks for your reply.  I'll consider what you said.

  • Bubbles83
    Bubbles83 Community member Posts: 28 Connected
    Hi beccy , yes I don't think this is a regional problem I think this lack of support is UK wide, as I remember scope was always a CP charity, it wasn't until I came back here for support with my disability, that I found out that it's now a charity for all ( that in itself is no problem) but surely by doing this they having taken away our last real resource, in fact my dad has been donating to scope since I was born in the belief that he could help in some way and give something back.  When I read your thread there was just to many similarities for me to ignore and im sure we're not the only ones. Personally I have never asked off the NHS I'm not somebody to overuse the resources even with my disability taking it's toll, but now when I really could do with the help and support it really isn't there, I'm only in my 30's but I really wonder what will happen in the next 5,10,15 years. I'd love to raise awareness of the current situation like yourself but I'm not sure we have a loud enough voice as as far as the medical professionals are concerned they have done there job. Like you I have done research and have yet to find anything of any significance.

    Diane
  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    Yes, I agree with all of that.  You and I and anyone else on the CP forum could no doubt talk all day about the frustration of getting no medical support from the NHS after 18 - but that's not going to make the NHS change.  

    We could talk all day about how CP has affected us as we have got older but unless someone can collect all of that information together in a coherent way rather like the MS register, then there will always be a perception that CP is a static condition.  

    There really is still so much research to be done on CP.  That's not just my viewpoint, what medical information I have found agrees.  A CP-specific charity would be in a position to do so much for us.  

    If I have ever had to disclose my medical health, I would never say I was "generically disabled".  I would need to specify what my disability is.  The term cerebral palsy does that for me.  That immediately creates a picture of the types of needs and challenges I have and sets me apart from someone with kidney failure or fibromyalgia or crohn's or autism.  Cerebral Palsy does affect people in a variety of ways, as Kirsty said in her email, but none of those other conditions I listed are the identifying marks of CP, which means that people with CP don't face the same challenges as someone with kidney failure, otherwise why would they be treated differently?  Someone with crohn's needs to be supported differently from someone with CP.  

    Like you said it's not a question of whether there was a gap in the market for a pan-disability charity.  It's about having a charity that can act as champions for the CP population, that can focus all its resources on supporting us as a unique group and on funding research into the causes and lifelong causes of CP and campaigning for better focussed and specialised treatment for us.

    I still can't quite believe I understood what Kirsty said in her email correctly.  If I have understood her correctly, to imply that CP doesn't cause unique challenges is actually rather insulting - and surely an opinion that would not stand up to medical scrutiny.  I can't have understood it correctly, I'm sure!

    As @forgoodnesssake said, if Scope saw a need for a pan-disability charity then they should have left Scope for CP and set up a new charity.

    Unfortunately, I have a lot going on at the moment, but I will take this further as soon as I can.  It might be too late for me (I hope not!) but there are thousands of children out there with CP who will spend most of their lives as adults.  So many babies are surviving extreme prematurity and being left with CP.  How anyone can think they don't need someone who will fight for unique research into their unique disability and fight for lifelong medical support for them is beyond me.
  • clairek5
    clairek5 Community member Posts: 6 Listener
    Could not have said that better myself the challenges we face are different as cp can affect mobility and other areas just as much if not more .everyone with cp is a individual facing a  number of challenges as to how the cp effect them and with no one seeking up for us how are things  going to change  well done for  trying i will  keep asking people to  sign but with no charity willing to help and support are campaign i can't  see much changing well done for trying keep up the  good work. 
    Ps i could not agree more with everyone post sadly it just seems a rept of my owe anyways hope you are all well lets keep  fighting for this change
  • forgoodnesssake
    forgoodnesssake Community member Posts: 500 Pioneering
    As a matter of interest, does anyone from actual organisation "Scope" and in particular its campaign wing (in which I used to know quite a few people, and was actually actively involved in a couple of campaigns, one quite high profile) ever read these boards?  If not are they ever directed to do so when a particular issue comes up which might be relevant to them?  It seems to be the case that these boards are exactly what they say on the tin, namely "community" chat.  So what we need really is for this to move away from a discussion amongst members and the moderators of these boards, and for it to be passed on to the actual policy makers and dare I say it, trustees of Scope. 
    I'm sorry to say this but no-one I know now in the CP world, and that is adults, and parents of children with CP, has anything positive to say about the direction Scope has taken over the last 10 years or so.  Some of us remember back to when they used to actually have, for example, a specialist speech therapist, whose assessment and report for my then 2 year old son, was instrumental in ensuring that he did not end up wrongly placed in a special school; and he is about to go to Uni to study maths in September.  Or back to when they ran their excellent School for Parents pre-school provision based on CE but not nearly as rigid.  All that is gone, to be replaced by generic "disability" campaigns....which as has been said, are fine...but should be as well as, not INSTEAD of specific CP work...which now no-one is doing.
  • forgoodnesssake
    forgoodnesssake Community member Posts: 500 Pioneering
    Hmm...here's something interesting.   I always like to go to source if possible and this is what the Charity Commission have on record as being Scope's charitable objects (ie what it has legally said it is for)
    FOR THE PUBLIC BENEFIT AND FOR GENERAL CHARITABLE PURPOSES ACCORDING TO THE LAWS OF ENGLAND AND WALES AND IN PARTICULAR BUT NOT EXCLUSIVELY FOR THE PROMOTION OF EQUALITY, DIVERSITY, INDEPENDENCE, AND HEALTH OF DISABLED PEOPLE, ESPECIALLY THOSE WITH CEREBRAL PALSY
  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    @forgoodnesssake

    "....especially those with Cerebral Palsy"

    That is interesting and it doesn't really tally with the message I got from Kirsty's email:

    "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."
     
    It would definitely be interesting to see how Scope woul@forgoodnesssake

    What is it that Scope does that's specifically designed to promote the indépendance and health of "especially" those with CP?

    Help us get better treatment from the NHS as adults comes to mind!

    If we don't get a response from Scope's policy/campaign team on this forum, i think we should escalate it to see what they say.  Or even what viewpoint the Charity Commission itself has on the apparent discrepancy in the two statements
  • Bubbles83
    Bubbles83 Community member Posts: 28 Connected
    just an option but maybe we should set up our own chat discussion, and raise issues directly there, if we get enough people on board and raising there concerns maybe there would be away of passing this info directly to the top.

    I was reading  one of the links posted on the site yesterday via health unlocked, they have a forum dedicated to people with cp , a women on there was actually positioning to get a discussion on this very subject into the house of commons although that was in 2015.
     I think all of us could sit here all day and discuss this but like you said baccy I don't think talking is going to be the answer. I think  without financial support and funding I think sadly things are destined to stay the same, for us and many more people out there in this situation, 
    for me at least, CP is not a case of one fits all we are all unique with our own individual challenges, this covers such a broad spectrum of things that I find it incredible that even now doctors, health professionals put all there eggs in one basket, they want everything to be neatly swept under the carpet for fear of solicitors knocking at there door and I think this is the REAL issue and why nobody is forthcomming .
    Diane
  • emmaliv
    emmaliv Community member Posts: 17 Connected
    Hi @BeccyJ and everyone else that has contributed to this discussion. Really sorry it has taken me so long to participate (things are hectic with 3 young kids and we have just building work to adapt our home!).

    I want to concur with everybody's experience both with the ageing process and CP and the pitiful services that are available. 

    Perhaps I can take this as an opportunity to update you on what I have been trying to do over the last few months.   Like many of you have mentioned, it is really difficult to influence change without the support of a charity or strong voice to lobby government, and money alongside apathy is also a huge barrier to change. However about 6 months ago I decided that I have the time now I am no longer working and definitely the passion and motivation to fight. 

    Firstly unfortunately like it has been said above, Scope no longer services the CP community in the way it has in the past and therefore there is a large gap in organisations for the CP community, particularly adults. I have met with Scope and they are very well aware of what I am trying to do and although verbally supportive, they are either unable or unwilling to help move forward the agenda.

    I have been in contact with members of NHS England and MPs about my campaign and the need for better services. And again although sympathetic, there advice has been that we need to lobby NHS Engand hence my petition https://you.38degrees.org.uk/petitions/better-care-for-adults-with-cerebral-palsy (I have been advised that if NHS Englad receive a petition with over 500 signatures they would find it difficult to ignore).

    In terms of other charities, today in fact I spoke with Amanda Richardson who heads up Action CP. She was very sympathetic to my agenda and is willing to support me in any way she can, of course with caveat that Action CP is a charity for children and young people with a focus on improving and standardising services. They are also pushing for ways to establish a database register of individuals with CP in order to enhance research opportunities (much like they have done in Australia and Northern Ireland).

    In terms of research, as has been pointed out, there is next to no research in this country with adult CP as its focus. Although there are a few dedicated researchers in the field who I have met with.(there are only 6 qualitative studies internationally that look at the issues related to ageing in CP). One of the projects I hope to get involved with is some qualitative research using people's stories and experiences of living with CP. If you would be willing to share your story please get in touch.

    Although my ultimate goal at the start of this was to improve services for adults with CP through a centre of excellence, I now see that one of my initial tasks is simply (or not so simply) to raise the profile of the needs of adults with CP. 

    I need all the help I can get. I recognise everybody is dealing with their own issues, and I am very happy to head up this campaign. i would love the support of others. Here is my facebook page - https://www.facebook.com/adultcphub/ and my blog - http://complainertocampaigner.blogspot.co.uk/2017/01/a-busy-few-weeks.html.
    @Bubbles83 @forgoodnesssake @KylieGirl @rachelcl @Noah @Francesca1994 @Stayce @mikeep1983 @JadeB @nightjars @CerebralPerson @htlcy @Rainbow_wheelz16 @derekliv
  • rachelcl
    rachelcl Community member Posts: 30 Connected
    @emmaliv I've just signed the petition :)
  • emmaliv
    emmaliv Community member Posts: 17 Connected
  • forgoodnesssake
    forgoodnesssake Community member Posts: 500 Pioneering
    Just about to sign and share...thanks for doing this...
  • forgoodnesssake
    forgoodnesssake Community member Posts: 500 Pioneering
    Ah, I think I have signed this already..but have shared again on FB
  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    I've reposted about this directly on the CP forum as not everyone on there might see this.  I've got a lot on for the next few weeks so will be taking a bit of a backseat for now but I will keep on top of what's going on as much as I can and support in whatever way I can.  Will keep thinking of ways to take this forward as I mentioned in my last post.  The more we can get on board the better.  Even parents of children with CP.  They need to know what lies ahead for their children.

    Just to make sure you are kept in the loop @clairek5
  • BeccyJ
    BeccyJ Community member Posts: 59 Courageous
    Just want to add that i think it is really interesting that we've all drawn the same conclusions about the failures in the system and what needs to be done.  We're all echoing how each other feels.  We all feel let down in the same ways - really goes to prove that this is a genuine problem that is countrywide.
  • quinrah
    quinrah Community member Posts: 22 Courageous

    Hi everyone,

    I’m Lisa and I’m a Director at Scope. Scope has recently launched a new five-year strategy, ‘Everyday equality’, with an aim to drive social change so that all disabled people have the same opportunities as everyone else.

    Everyday equality talks about removing the common barriers that are faced by many disabled people. We will do this by influencing policy, attitudes and markets, and through a direct offer of support, information and advice to disabled people and their families. We believe this approach will benefit disabled people including those with cerebral palsy.

    Let me be clear that Scope remains a charity with a particular interest in cerebral palsy. This is an important part of who we are and it is still an area in which we especially retain expertise. That hasn’t changed. Indeed, we plan to update and improve our cerebral palsy focused information and advice over this coming year. 

    We don’t have plans for health focused campaigns. Our campaign plans are currently focused on areas such as driving down extra costs or social care. As I said, we believe that this is the best way to make change happen in the areas our strategy focuses on for many disabled people, including those with cerebral palsy.

    We’re happy to help amplify the campaigns of others where we can. I know you’re already speaking to the team here about raising awareness of your campaign @emmaliv. The stories team would still be really happy to share your campaign on some of our other channels too and you can get back in touch with them via stories@scope.org.uk

    very best wishes with it.

    Lisa

Brightness

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