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Better Care for adults with CP

BeccyJ
BeccyJ Member Posts: 59 Courageous
I sent an email to Scope about this a couple of weeks ago and posted about this subject in the CP forum but as I haven't received any kind of reply or acknowledgment, I've posted a link here. Would be interested to know if Scope (or indeed anyone) is doing anything to champion this issue as the focus is almost entirely on children with CP - but it is all too common for them to get no support after 18.  There is absolutely no defined care or even monitoring for adults with CP, but no one seems interested in doing anything to help.  Can Scope please explain what they are doing to highlight this issue and fight for more research to be done into how CP affects the health of adults?

The link to my original post highlighting this is brlow

https://community.scope.org.uk/discussion/33175/better-care-for-adults-with-cp
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Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    Hi @BeccyJ apologies for missing your original post.

    Scope has recently announced our new strategy for the next 5 years, you can read more about it here.

    We’ve always been about making change happen. We help disabled children get the best start in life. We support disabled people to lead the lives they choose.

    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 have ambitious plans for the next five years.

    To help us develop this strategy, we listened to disabled people, their families, our supporters and Disabled People’s Organisations to ask them where we should focus in the next five years. It was important to have those conversations with people who matter to us so we could build a strategy that tackles the challenges and issues they told us they face.

    We will work in partnership with disabled people, government, businesses, partners and the public to make change happen.

    We will deliver social change by influencing policy, attitudes and markets, and through a direct offer of support, information and advice to disabled people and their families.

    We will:
    • Develop a robust evidence base that tells a compelling story about the reality of disabled people’s lives and the need for social change.
    • Campaign with the public, businesses and government, to change laws, policies, practices and attitudes.
    • Be the go-to organisation for people who need advice, information and support, particularly at times of crisis or transition.
    • Offer quality services disabled people tell us they need in a way that suits them so they are stronger, successful and confident – from support through our national helpline to tailored employment advice, and from access to practical tools and guides to personalised emotional support.
    • Build a community of disabled people who support each other and share experiences, advice and tips to guide one another through life’s big moments.
    • Harness the power of digital technology to improve lives and reach many more disabled people to offer the information they need, be better connected and in control.

    There are 5 main themes to the strategy for the next 5 years.


    Scope will support disabled people to:

    Get the best start in life

    Goal: Fulfil my potential during my early years

    Scope will improve opportunities for disabled children and the resilience of their families by:

    • Increasing financial security so that families face fewer extra costs.
    • Challenging attitudes and barriers that limit opportunities and ensuring disabled children and their families access the support and information they need to live the life they choose.
    • Increasing emotional resilience so that families can overcome challenges in the early years.
    Goal: Fulfil my potential during transition to adulthood

    Scope will ensure disabled young people have the same opportunities as everyone else by:
    • Increasing access to early and tailored support, information and advice.
    • Supporting more young disabled people to move into work.
    • Challenging attitudes and barriers that limit young people’s potential.

    Live the life they choose

    Goal: Live the life I choose

    Scope will ensure all disabled people are able to live the life they choose by:

    • Widening access to care and support and ensuring it is better tailored to individual need so that disabled people can live independently and fulfil personal aspirations.
    • Increasing disabled people’s power and influence so they are empowered to make decisions about their lives and make change in communities.
    • Harness the potential of digital technology so that disabled people can live more independently.

    Be financially secure

    Goal: Have the opportunity to work

    Scope will work to reduce the gap between the percentage of disabled people and non-disabled people in work by:

    • Ensuring disabled people get voluntary, tailored and joined-up support so they get in, stay in and progress in work.
    • Improving workplace policies, practice and culture so that disabled employees are better supported at work and experience improved attitudes in the workplace.
    • Changing attitudes, promoting ambition and fostering a culture where disabled people can be open about what they need to succeed at work.

    Goal: Have a decent standard of living

    Scope will tackle the financial penalty associated with disability by:

    • Reducing the extra costs disabled people face so that there are fewer extra costs particularly in relation to everyday goods and services such as energy and telecoms.
    • Tackling the digital divide and empowering disabled consumers to use digital technology so they are able to access online tools and offers that bring down the cost of living.
    • Ensuring disabled people receive the financial support they need for a decent standard of living.


    I hope this answers some of your questions  :)
    Scope
    Senior online community officer
  • BeccyJ
    BeccyJ Member Posts: 59 Courageous
    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?
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    Hi @BeccyJ if you use the search box above for the term CP, you'll find hundreds of discussions about Cerebral Palsy.

    Scope is a charity that supports all disabled people, including CP.  When there are awareness days or weeks, we aim to talk about that subject.  As last week was MS awareness week, we shared a guest post about a member's experience of MS.

    We have also shared lots of guest posts about cerebral palsy too, here are a few:

    https://community.scope.org.uk/discussion/32395/what-was-the-best-year-to-be-born

    https://community.scope.org.uk/discussion/31305/cerebral-palsy-football

    https://community.scope.org.uk/discussion/30862/guest-post-loneliness-cerebral-palsy-me

    https://community.scope.org.uk/discussion/29257/guest-post-diary-of-a-job-hunter-with-cerebral-palsy-interviews

    We also have the Cerebral Palsy category for members to talk about their lives, ask questions and offer and receive support.




    Scope
    Senior online community officer
  • BeccyJ
    BeccyJ Member Posts: 59 Courageous
    Thanks again.  Talking about issues can obviously be very helpful up to a certain point.  However, on its own, it won't help me or other adults with CP get the treatment and help we need - and on a consistent basis.  Obviously Emma is trying to use the platform provided by 38 degrees to help raise awareness of issues faced by adults with CP.  

    The support of organisations like Scope would undoutedly increase the likelihood that the concerns she has raised will be taken seriously by people who actually have the power to change things.  Getting support from organisations like Scope increase the likelihood that the concerns raised by Emma will be taken seriously.

     I posted here in the hope that the support of Scope would be readily offered, as well as demonstratively active and forthcoming - now and going into the future.
  • BeccyJ
    BeccyJ Member Posts: 59 Courageous
    I am surprised no support has been offered, beyond reading discussion forums
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    @BeccyJ Here on the community we happily share petitions and encourage discussion.  I'm not entirely sure what other support the Scope online community can do in support of this petition? 

    If you want further information and to chat with someone in other areas of the charity, then you can use the contact form here
    Scope
    Senior online community officer
  • BeccyJ
    BeccyJ Member Posts: 59 Courageous
    I tried emailing Scope directly first ( on 24.4.17).  I haven't had a reply.  As I didn't get a reply, I posted here, hoping that someone at Scope would see it and let me know what they are prepared to do. As my email has been overlooked, are you able to make sure someone at Scope who might be able to do something sees this?  Thanks
  • Alex
    Alex Scope Posts: 1,305 Pioneering
    Hi @BeccyJ,

    I will happily pass your message on to other people at Scope, however I'm not sure who would be best to send it to. When you say "might be able to do something" - what exactly do you mean? What support do you need?
  • BeccyJ
    BeccyJ Member Posts: 59 Courageous
    OK.  I'm sorry if I haven't explained what help I was asking for clearly enough.  

    Basically, the only medical provisions for Cerebral Palsy in the UK is paediatric.  Once you get to 18 you are discharged from the paediatric services and left to get on with it.  If you start to develop problems after 18 there is no medical help available.

    My personal experience is that my mobility deteriorated significantly in my 20s.  I went to my GP because I was struggling so much.  He didn't know who to refer me to so sent me to A&E.  A&E told me I needed to see a paediatrician as the only CP specialists are paediatricians.  However they couldn't refer me to paediatrics as I was over 18.  I eventually got to see a musco skeletal doctor whose first words to me were he wouldn't be able to help me as he knew nothing about CP.  He had done some research and could find no specialist in the country who helped adults with CP. I was left to get on with it and went from being able to walk unassisted to having to use a wheelchair.

    Emma has given some info about herself in her petition.  She has clearly hit the same brick wall as me, resulting in her having to stop work.  The CP forum is full of similar cases.

    Scope aims to campaign for the disabled.  You are a nationwide charity that wants to make a difference.  There are no services, NHS or private, for adults with CP.  I have been told this by medical professionals many times.  

    Scope can make a difference to this group of disabled people by campaigning for the NHS to establish a treatment route for adults with CP

    I would like Scope to coordinate a campaign to get the NHS to realise that CP is a lifelong condition.  Adults need the help of the NHS too.  They can help children all they like - but it is wasted money if the NHS doesn't help those children maintain as adults the mobility they fought so hard for as children.  In my case I had regular physio and surgery as a child, but all that money was in my opinion wasted as I have now lost the mobility I fought so hard for as a child.  If the NHS had medical professionals to help adults with CP then it might have been different.

    Please forward my request to whoever at Scope can start a campaign for the NHS to establish definite services for adults with cerebral palsy. 
  • Alex
    Alex Scope Posts: 1,305 Pioneering
    edited May 2017
    Thank you Beccy, as far as I know there isn't anyone at Scope who can do that.

    As Sam has outlined above, one of Scope's goals is "widening access to care and support and ensuring it is better tailored to individual need so that disabled people can live independently and fulfil personal aspirations." However, the main focus of that is social care - and asking the next government to invest in social care so that disabled people get the support they need.

    That work is being led by our policy and research team. You can read more about the team here: https://www.scope.org.uk/about-us/research-policy

    Would you like me to pass your post on to that team?
  • BeccyJ
    BeccyJ Member Posts: 59 Courageous
    Thank you for your suggestions.  I would have thought that a campaign to get the NHS to establish treatments and services for adults with CP would be an important element in helping them to "live independently and fulfill personal aspirations."  The lack of services for adults with CP means that it is more likely that they will become dependent on social care and unable to fulfill personal aspirations.  I've already lost my mobility and can no longer drive, meaning I rely on friends and relatives to get around. This makes it a lot harder for me to be independent and fulfill my personal aspirations.  I might eventually become more reliant on social services and social care.  

    This is much less likely to be the case if the NHS provided treatment for CP adults.  A successful campaign to get adult services and treatments created nationwide would help us to maintain our independence throughout life. 

    Emma has stated in her petition that she has had to stop work.  I note that one of your 5 year objectives is that disabled people have the opportunity to work. If we receive regular and appropriate treatment and check-ups, we are much more likely to be able to stay productive members of the workforce, maintain our independence and achieve personal aspirations.

    By all means, please pass on this information and my request to your policy and research team.  I will be interested to know what they say.  If Scope isn't going to pick up this mantle and fight for us, who will?
  • BeccyJ
    BeccyJ Member Posts: 59 Courageous
    Just in case anyone with CP reads this post in the future, this is the reply I received.  Looks like we'll just have to keep shouting loudly and hope someone will eventually listen. I haven't found anyone who'll listen to me yet though!

    Here is the reply:

    Dear Beccy,

     

    Thank you again for contacting us and apologies for the delay in replying to your email.

     

    I’m very sorry to read about your negative experiences when trying to find support for adults with cerebral palsy (CP).

     

    As a pan-disability charity we address common barriers faced by disabled people in society, rather than focus on a particular impairment or condition group. We want to create a society where disabled people have the same opportunities as everyone else. We do this by offering information and support, especially during times of crisis. We also campaign so that laws, policies, practices and attitudes enable disabled people to reach their full potential and live independently. 

     

    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.

     

    Because the needs of individual people with CP differ greatly, designing services to support them would be the same as designing services to support other disabled people with a range of impairments - which is what we do. 

     

    Everything we do as an organisation is underpinned by the experiences of disabled people, including our policy and campaigning work. We have recently launched a new five-year research study to understand more about disabled people’s lives. This will help us develop our future campaigns and the support we provide to disabled people and their families. If you would be interested in participating in this study, please do let me know and I can ask our Research team to get in contact with you about this.

     

    I hope this answers your question and reassures you that we will continue to campaign on behalf of all disabled people in the UK and provide services that support disabled people to live the life they choose.

     Best wishes

    Kirsty


    Dear Kirsty, 

     Thank you for your reply.  I appreciate the points you raise. 

    I really feel that the lack of services for adult CP patients is a serious problem (and it is clear I'm not alone in this) .

    In support of the points I raised in my post I have come across this post from December 2016. 

    Although everyone is affected by CP in different ways, the same thing could be said of MS patients, for example.  Yet they have MS specific clinics from which they can receive treatment and advice.  This is not the case with CP - and no one seems to care.

    Moreover, other neurological patients have condition-specific charities, who are supporting those who have these conditions and fighting for improvement in the research and treatment of that condition.  E.G The MS Society and Parkinson's UK.  Yet they have Scope to support them too.  There is, to the best of my knowledge, no longer any similar charity for Cerebral Palsy since The Spastics Society became Scope (and definitely not one for adults).  This really illustrates my point about the lack of facilities for adult CP patients.  We haven't even got our own charity! 

     It really does need some sort of co-ordinated campaign to raise awareness of the problems we face and which will get worse as more premature babies survive into adulthood.  As you say, this is an issue which is specific to Cerebral Palsy, but I would really like to know how things will ever improve for us if we can't raise the profile of this nationally.  Please, do you have any suggestions?

    Beccy


    Dear Beccy,

    I’m afraid I cant think of any helpful suggestions with how to start a campaign and raise awareness of Cerebral Palsy nationally. However, after doing a little research this morning I did find www.cerebralpalsy.org.uk. Although it isn’t a charity, it does provide several links to charities and organisations which may be able to help or point you in the right direction.

     

    Best wishes,

     

    Kirsty

  • BeccyJ
    BeccyJ Member Posts: 59 Courageous
    I have tried to find an organisation with an interest in CP that has a national voice.

     The first result in my Google Results search was Scope! :smile:

    Well at least I can say I have tried!

    I have found other organisations (e.g. Action CP). They acknowledge that CP services are non existent for adults and that the prevailing view is that CP "disappears" at 18.  However, they have told me that their focus will remain on helping children :disappointed:
  • forgoodnesssake
    forgoodnesssake Member Posts: 406 Pioneering
    BeccyJ...I so agree with you and actually have a half written email to the Scope CEO along many of the same lines!  People with all sorts of other conditions (autism, Downs, Spina Bifida, etc etc) all have very good and active impairment specific organisations to support them.  But people with CP (1 in 400 births) do not!  They used to, and it was Scope (and before that the Spastics Society) but somewhere along the way, over the last 6 or so years, Scope has become "all things to all people" and has no CP specific remit at all.  Why??  If the trustees wanted a pan-disability charity, they should have started a new one and left Scope as CP specific.  So now there is definitely an opening for a national, active, focussed CP organisation to deal with all the issues that are specific to CP in people of all ages....

  • BeccyJ
    BeccyJ Member Posts: 59 Courageous
    Indeed. Conduct an (admittedly unscientific)poll among friends asking if they can name the national charity for CP and the answer is invariably "Yes it's Scope". Imagine the surprise when you reply "Actually no, not anymore. As far as I can tell, there isn't one." Scope is now a "pan disability charity". In no way do I mean to imply that I think there isn't a need for such a charity (clearly there is) but, out of interest, I googled the phrase "arthritis charity" and Scope didn't appear in the results for the first 3 pages (I didn't check any further) I googled the phrase "multiple sclerosis charity" and Scope didn't appear in the results for the first 3 pages (again I didn't check any further) I googled the phrase "cerebral palsy charity" and Scope appeared at the top of the first results page. Very surprising given that Scope has apparently disavowed any specific connection to Cerebral Palsy and now aims to be the "go to" organisation for all disabilitie. Kirsty's email states "Because the needs of individual people with CP differ greatly, designing services to support them would be the same as designing services to support other disabled people with a range of impairments - which is what we do. " To me, that means that because CP comes in various forms and degrees, all of our needs can be met by a generic pan-disability charity. I would appreciate some clarification on that and will happily stand to be corrected. After all, arthritis comes in various forms and degrees and heart problems can be congenial, non progressive or progressive but that doesn't negate the need for organizations like Arthritis Research UK and the British Heart Foundation who, I understand, fight for all conditions that come under the umbrella of arthritis or heart defects and are continually trying to raise the profile of those conditions. It's a shame that it feels like adults with CP don't have anyone to do the same for them.
  • clairek5
    clairek5 Member Posts: 6 Listener
    Hi guys frist time on here so please bear with me i am an adult of 22 with cp and becusce of the cp I have a number of  other issues that all part of the cp but no one understand or know how to help me i find it shoking that is no out there to help us and so to my able-bodied frenids who believed that the cp charity was scope.  I know scope do a great job but someone need to help us fight to get this issue fixed for the next generation of disband people with cp otherwise it will sadly be the same in 20 years sorry to go on well done for trying x
  • forgoodnesssake
    forgoodnesssake Member Posts: 406 Pioneering
    It seems rather disingenuous to me for scope to say "Because the needs of individual people with CP differ greatly, designing services to support them would be the same as designing services to support other disabled people with a range of impairments - which is what we do. "  Er, no.  The whole point is that whilst people with CP are affected in a huge range of different ways the one defining feature is that it is damage to the brain, in some area, which leads to the other issues.  And this is what makes the whole "family" of CP different to other physical, sensory and learning disabilities.  And in our case a very good example of how even good, well-trained medical professionals miss that simple factor is that my son (quad athetoid) has recently had to have surgery on his foot and ankle to help stop ever increasing varus foot deformity which was stopping him even being able to stand and weighbear.  But the otherwise very good ortho-pod is still treating it almost as an acute type issue (ie lengthen the tendon and fuse some bones and it should be much better) rather missing the point that the brain message is still going to be "pull and contract"!  And it was me who had to ask for a referal to orthotics after he was out of plaster so that he could have some sort of resting splint which would at least slow the rate of contraction (coming form the brain, not the leg or foot muscle...)  it was almost as if the surgeon thinks that the surgery has "fixed" it....which it never can.  It is better but it will be a lifelong thing for my son to try and maintain a reasonably flat foot.  And it is this sort of issue that is why we need a CP specific charity.  Similarly why there is specialist CP physio (like Bobath) which at least tries to work on the messages casuing the physical issues rather than just on the physical manifestations....
    If Scope really do believe that their services to people with CP can be wrapped up in pan-disability advice and support then I am really rather shocked and iof I did not have rather a lot on my plate I'd be recruiting others to start a new CP organisation...as you can tell, my blue touch paper is lit!!
  • BeccyJ
    BeccyJ Member Posts: 59 Courageous
    I completely agree with you.  I always thought charities were there to help the most vulnerable people in society when they needed help the most.  Adults with CP need help, in the form of medical support, advice and treatments.  Searching for information and support  on cerebral palsy in adulthood is like searching for gold dust.  Any reports or documents I have found generally conclude that it is a completely under researched area and more work needs to be done.  Scope's Cerebral Palsy forum must be one of the best resources available when it comes to anecdotal evidence of CP in adulthood and I genuinely thought that with all the resources of a large national charity, Scope would be best placed to campaign for the NHS to create services for us.  I've been left with the strong impression that, as far as Scope is concerned, we are on our own.

    If I had the time and energy, I'd be right there with you with the blue touch paper. The whole point is that I haven't - I've got a disability.  Dealing with the challenges of everyday life while coping with the challenges of a lifelong disability doesn't generally leave you with the physical and emotional resources to spearhead a national campaign.  

    That's where I genuinely thought Scope were supposed to come in.  The only suggestions and support they've been able to offer me is reading their discussion forums and providing me with the name of an organisation (cerebralpalsy.org.uk) which appears to be a firm of solicitors and whose website in its turn links me back to Scope! But Scope appear to have completely turned their backs on their history and the population with Cerebral Palsy, leaving us out on our own.  

    I need real, ongoing medical input to give me the best chance of building and maintaining an independent life.  I need the support of a CP focussed charity who understand the specific issues that come with CP. I haven't got the strength or resources to co-ordinate a campaign on the level that is required, but Scope don't seem to agree. I feel like, as far as they are concerned, I should be the one to start the campaign, and the implication of Kirsty's email definitely appears to be that people with CP don't need CP specific support. Like I said I would be more than happy for Scope to correct me and I will sincerely apologise.  If I have read what they are saying correctly, I am sure other condition specific charities would not feel that they are surplus to requirements just because Scope is now a pan disability charity.  If it is down to the disabled to lead campaigns on their own, I am left asking myself what is the point of charities?

    PS: Claire, I'm really sorry to hear you've been having problems too.  Thanks for the support.
  • Bubbles83
    Bubbles83 Member Posts: 28 Connected
    HI I was very interested in reading your post as I myself have CP and at the age of 34 feel there is no relay structured help, after I left education that was it I was a complete after thought, I now have to go through my gp for anything regarding my disability I know longer get follow up or the kind of physio I require unless I pay privately

    kind regards 
    Diane
  • forgoodnesssake
    forgoodnesssake Member Posts: 406 Pioneering
    Yes Beccy J...you very definitely hit the nail on the head with this "If I have read what they are saying correctly, I am sure other condition specific charities would not feel that they are surplus to requirements just because Scope is now a pan disability charity." 
    If Scope really are "all things to all disabled people" then all those other charities/organisations would be redundant...but they are far from it..

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