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Better Care for adults with CP

BeccyJBeccyJ 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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Replies

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 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
  • BeccyJBeccyJ 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_AlumniSam_Alumni Scope alumni Posts: 7,731 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
  • BeccyJBeccyJ 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.
  • BeccyJBeccyJ Member Posts: 59 Courageous
    I am surprised no support has been offered, beyond reading discussion forums
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 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
  • BeccyJBeccyJ 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
  • AlexAlex Scope Posts: 1,324 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?
  • BeccyJBeccyJ 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. 
  • AlexAlex Scope Posts: 1,324 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?
  • BeccyJBeccyJ 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?
  • BeccyJBeccyJ 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

  • BeccyJBeccyJ 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:
  • forgoodnesssakeforgoodnesssake Member Posts: 364 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....

  • BeccyJBeccyJ 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.
  • clairek5clairek5 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
  • forgoodnesssakeforgoodnesssake Member Posts: 364 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!!
  • BeccyJBeccyJ 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.
  • Bubbles83Bubbles83 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
  • forgoodnesssakeforgoodnesssake Member Posts: 364 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..
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 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
  • BeccyJBeccyJ 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_AlumniSam_Alumni Scope alumni Posts: 7,731 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
  • Bubbles83Bubbles83 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
  • BeccyJBeccyJ 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.

  • Bubbles83Bubbles83 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
  • BeccyJBeccyJ 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.
  • clairek5clairek5 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
  • forgoodnesssakeforgoodnesssake Member Posts: 364 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.
  • forgoodnesssakeforgoodnesssake Member Posts: 364 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
  • BeccyJBeccyJ 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 [email protected]

    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
  • Bubbles83Bubbles83 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
  • emmalivemmaliv 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
  • rachelclrachelcl Member Posts: 34 Connected
    @emmaliv I've just signed the petition :)
  • emmalivemmaliv Member Posts: 17 Connected
  • forgoodnesssakeforgoodnesssake Member Posts: 364 Pioneering
    Just about to sign and share...thanks for doing this...
  • forgoodnesssakeforgoodnesssake Member Posts: 364 Pioneering
    Ah, I think I have signed this already..but have shared again on FB
  • BeccyJBeccyJ 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
  • BeccyJBeccyJ 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.
  • quinrahquinrah Member Posts: 24 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 [email protected]

    very best wishes with it.

    Lisa

  • emmalivemmaliv Member Posts: 17 Connected
  • htlcyhtlcy Member Posts: 133 Pioneering
    Thanks for this, @emmaliv , and sorry it's taken me so long to see this. Will definitely have a look. 
    Heather
  • dereklivderekliv 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
  • BeccyJBeccyJ 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
  • DanielWearneDanielWearne 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. 
  • DanielWearneDanielWearne Member Posts: 6 Listener
    Eternal palsy = cerebral palsy. I'm typing quickly know my phone. But a rather appropriate typo I think. 
  • RegReg Member Posts: 27 Courageous
    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

  • quinrahquinrah Member Posts: 24 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

  • BeccyJBeccyJ 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.
  • forgoodnesssakeforgoodnesssake Member Posts: 364 Pioneering
  • Bubbles83Bubbles83 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
  • NasmamuNasmamu 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.
  • Bubbles83Bubbles83 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 
  • BeccyJBeccyJ 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!
  • Bubbles83Bubbles83 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.
  • BeccyJBeccyJ 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
  • StayceStayce Member Posts: 406 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
  • forgoodnesssakeforgoodnesssake Member Posts: 364 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..!!
  • BeccyJBeccyJ 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
  • quinrahquinrah Member Posts: 24 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
  • forgoodnesssakeforgoodnesssake Member Posts: 364 Pioneering
    I see Scope's change of directionhas  made it into Private Eye...not really a badge of honour (back pages, investigative not humorous)
  • BeccyJBeccyJ Member Posts: 59 Courageous
    @forgoodnesssake

    That's really interesting.  I had a look on private-eye.co.uk and found this quote from issue 1452 5/9/17:

    "STEALTH OF SCOPE
    As Scope becomes a ‘pan-disability’ lobbying outfit, adults with cerebral palsy are left with no major national charity to represent their interests."

    I wonder if Scope has any response?
  • BeccyJBeccyJ Member Posts: 59 Courageous
    @quinrah

    Thanks for the prompt reply.  It raises a number of important questions that go to the very heart of Scope's raison d'être and I would be grateful if you could address each of them individually.  

    I think in view of the fact that Scope's lack of interest in CP has also been more widely publicised (see post above), it is surely even more important for you to address some outstanding questions:

    Firstly, I am surprised that you have not replied to the comments made by @forgoodnesssake on 3 September 2017 regarding Scope’s level of involvement in the Communication Trust.  Can you please address the concerns raised by @forgoodnesssake about Scope’s level of involvement in the Communication Trust.

    Secondly: Regarding the upcoming improvements to Scope’s CP service provision, I have a lot going on at the moment and am unable to keep checking this forum and my emails as much as I would like.  Can you please let me know the timetable of this project so that I can make a note in my calendar. 

    If no timetable is currently available, when will a timetable be in place?  I will keep a note in my calendar so I can contact you once a timetable is available.

    Thirdly: Regarding the upcoming NICE guidance: It’s good to know that you were aware of the NICE guidance.  This fact does however highlight various discrepancies in your previous statements and raises questions about why you failed to mention it until I drew it to your attention.  

    As Scope is a charity relying on public support and donations, these discrepancies need to be addressed .  For example:

    When I first asked what Scope is doing to promote better care for adults with CP, I was told that “(Scope addresses) common barriers faced by disabled people in society, rather than focus on a particular impairment or condition group……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.”

    This is clearly at variance with Scope’s own charitable objects which state that Scope exists “FOR THE PROMOTION OF EQUALITY, DIVERSITY, INDEPENDENCE, AND HEALTH OF DISABLED PEOPLE, ESPECIALLY THOSE WITH CEREBRAL PALSY.”

    As the comments made by various contributors to this thread demonstrate, the discrepancy between these two statements (unsurprisingly) causes a great deal of unease to many of us affected by CP -  and also to members of the public who have have been supporting Scope to benefit “especially those with Cerebral Palsy”.  

    Money and time has been donated to Scope on the understanding that your charitable objects are a true and fair reflection of your daily activities.  If you say you are acting “especially” for those with CP, your supporters have a right to expect that the resources they donate are in some way “especially” benefitting those with CP.  

    Yet, by Scope’s own admission, you “do not offer any services or campaigns that are specifically aimed at CP.”

    You have later contradicted this statement by saying that Scope has a “particular interest” and “retains expertise” in CP.  However, you have never actually given any indication of how you express this “particular interest”. 

    Moreover, you rather surprisingly failed to mention that Scope is a stakeholder in the upcoming NICE guidance.  Having been prompted by my post, you now acknowledge that you are a stakeholder but speak only in terms of what you may in future contribute, should Scope feels it has the expertise, not what you have already done or are doing - which could suggest that you are yet to make any contribution at all, even though this guidance has been in progress since at least 2016 and it appears that the final scope of the project has already been finalised.

    In view of the fact that Scope has been receiving public donations on the basis that it exists “especially” for “those with Cerebral Palsy”- and for the sake of clarity and transparency - these discrepancies need to be addressed.  Please clarify:

    1. Which statement is true: Is it the statement that Scope “doesn’t offer any services or campaigns specifically aimed at CP” or is it the statement that Scope has a “particular interest” in CP?

    1b.   Can you please explain the reason for the contradiction in these two statements?

    2. If the latter statement is true and Scope is still genuinely interested in CP, What does Scope actively do, week in week out, that demonstrates this “particular interest” and that uniquely benefits those with CP?  Who is tasked with representing people with CP?  What are their expertise?

    3. Surely if Scope is actively involved in the development of the upcoming NICE guidance, either you or one of your representatives would have immediately drawn my attention to it when I first emailed you and posted my question on your forum.  Instead I was led to believe (by several of your representatives) that Scope no longer had any CP specific remit.  

    Your initial reply to @emmaliv on 13.06.17 would also have been a good opportunity to draw our attention to the NICE guidance.  But instead I was left to find out about it by sheer chance - and that was because it was mentioned by a forum contributor, not any Scope representative.  

    As I have said, you now speak about what you may in the future contribute to the NICE guidance, not what you have already done or are doing, suggesting that you are yet to make any contribution at all, even though this guidance has been in progress since at least 2016 and it appears that the final scope of the project has already been finalised.  What you may contribute in future is also vague and non specific, (“if there is expertise (Scope) can share”) leaving me to reluctantly infer that you may never actually contribute anything.  Surely a longstanding charity with a particular interest in CP should definitely have expertise to share n this instance.

    3A. Therefore can you please confirm why you did not advise me of the upcoming NICE guidance?

    3B. To date, have you made any contribution to the NICE guidance?  If not, why not, when it has been in progress since at least 2016?

    3C. As I am sure you can see, the creation of specialised NHS services for adults with CP is something that is important to many of us.  I think it would be a small step towards reassuring many of us that Scope is taking the NICE guidance seriously if you confirmed:

    I. Who exactly at Scope is tasked with reviewing and contributing to the NICE guidance.  

    II. Who are they and what are their expertise?

    These questions are asked with genuine concern, not out of any malicious intent.  If I donate to Crohn’s and Colitis UK, I expect the money I donated to be utilised in a way that benefits someone with Crohn’s/colitis.

    If a charity claims, in its charitable objects, to represent “especially” those with Cerebral Palsy, I expect the money I donate to be used to benefit “especially” (or uniquely) those with Cerebral Palsy”.  

    If I ask that same charity how they actively live up to their declared object and tangibly benefit “especially” people with CP, I have the right to receive a clear, straightforward and detailed answer, not contradictory statements and vague, unmeasurable commitments.  This thread proves that many expect the same and feel aggrieved that over recent years Scope has done little, if anything, to represent CP specific issues in the public forum.

    As @forgoodnesssake has said, if Scope no longer actively represents people with Cerebral Palsy as a unique group (not just as a part of “the disabled”), then, please, be clear about that now so that people who been supporting you can decide whether they've wish to continue to do so.

    If, by contrast, Scope does genuinely still have a “particular” interest in CP then this is your opportunity to publicly and clearly correct any misconceptions, get the record straight and set out how you actively demonstrate your interest in CP specific issues on a daily basis.

    Thank you in advance for taking the time to address each of these concerns individually.

  • quinrahquinrah Member Posts: 24 Courageous

    Hi @BeccyJ

    In my earlier responses I clarified that Scope remains a charity with a particular interest in cerebral palsy. Our policy team are tasked with responding to government consultations which would include consultations from NICE where appropriate.

    Our helpline team are specially trained to support people with CP  and as I said I’m excited that we’re going to be refreshing our information and support, investing in more advanced training and adding more resource to our helpline and community this year. We’re likely to be at the stage of seeking people’s input on our project early in the new year.  I’m happy to contact you directly when we’re at that stage so you don’t have to keep checking back. It’s great that you’d like to get involved.

    Best wishes
    Lisa

  • Bubbles83Bubbles83 Member Posts: 28 Connected
    @BeccyJ good to see you're still going :smile: and continuing to highlight the issue weather you're been listened to is a different matter, you certainly no your stuff (and i though i knew a bit) but its really good to see and makes a refreshing change, you should take your knowledge to someone in power ...sometimes it only takes one individual to make that real change provided you can speak to the right people unfortunately i dont think scope are the right people, from what i've seen anyway. i hope you are well and i'll check in soon 

    takecare 
  • BeccyJBeccyJ Member Posts: 59 Courageous

    Nice to hear from you!  I’ve been thinking about it and I have to agree with you. 

    I’ve tried to find answers to what I believe to be basic, but crucial, questions.  Were they unreasonable questions?  For comparison’s sake, I have asked similar questions of Arthritis Research UK.  Could they answer my questions about how they act as champions for people affected by arthritis?  

    Admittedly, Scope and Arthritis Research are different charities with different objects.  However, they are both charities that exist for the benefit of the disabled; one with a focus on Arthritis and the other “especially” for “those with Cerebral Palsy”.   Anyone offering financial support to either charity has the right to know how that charity meets its objects.  

    How would Arthritis Research UK answer these questions?

    Question 1: Arthritis Research UK’s charitable objects state that it exists  “TO ADVANCE THE STUDY OF AND RESEARCH INTO THE CAUSES, TREATMENT AND CURE OF ARTHRITIS.....AND DISSEMINATE THE USEFUL RESULTS OF THAT RESEARCH, (2) TO RELIEVE THE NEEDS OF THOSE SUFFERING FROM ARTHRITIS……BY (I) PROMOTING THE TEACHING OF MATTERS RELATING TO, AND THE FURTHER UNDERSTANDING OF, ARTHRITIS…..AMONG…..PERSONS INVOLVED IN THE TREATMENT OF SUCH DISORDERS, (II) IMPROVING THE TREATMENT AND CARE OF PERSONS SUFFERING FROM ARTHRITIS….(3) TO ADVANCE THE EDUCATION OF THE PUBLIC IN ALL MATTERS RELATING TO ARTHRITIS….INCLUDING THOSE PERSONS SUFFERING FROM SUCH DISORDERS”.  How does Arthritis Research meet its objects?  What does it do, day in day out, for those with arthritis?

    Answer: “Arthritis Research UK invests in breakthrough treatments, the best information and vital support for everyone affected by arthritis.  We believe that by harnessing the power of exceptional science we can overcome the pain, isolation and fatigue arthritis causes. Our work has already uncovered breakthrough treatments, and we’re dedicated to uncovering new ideas to help people push back the ways arthritis limits their lives”.

    Question 2: Money is being donated to Arthritis Research on the basis that your charitable objects are a true and fair reflection of your daily activities.  How do you use that money to benefit people affected by arthritis?  How much is being invested in Arthritis research?

    Answer: “Your donations to Arthritis Research UK support vital research programmes that provide answers about the causes of arthritis and result in better treatment for people living with arthritis. Our longer-term research programmes aim to find a cure for all the many forms of arthritis and musculoskeletal conditions, including osteoarthritis, rheumatoid arthritis, osteoporosis and arthritis in children.

    “Our research committee considers around 400 applications for funding every year. Each application is assessed against our research strategy to ensure that money is being used to provide answers today and tomorrow in the most effective way. Awards can be made for up to five years and progress is expertly monitored by the research committee. 
    “Recent grants awarded by Arthritis Research UK include: 

    • developing anti-TNF therapy for rheumatoid arthritis beyond existing treatments Identifying the genes linked to the disease in patients with osteoarthritis 
    • developing longer-lasting and durable prostheses, and researching the causes, effects and treatments of infections in joint replacements Improving the treatment of brittle bone disease in children 
    • developing tissue engineering techniques in osteoarthritis by using patients' own cartilage Looking at ways of better targeting drug treatment in arthritis in children and teenagers 
    • examining the role of therapies such as acupuncture and yoga on osteoarthritis and back pain.

    “Accounts for 2014-15: Total expenditure in the year amounted to £35.6m (2014: £33.6m). The majority of this expenditure was on Charitable Activities, including Research (£23.0m) and Information and Awareness (£4.3m). This expenditure continued our significant investment into the cause, treatment and cure for all forms of arthritis through a wide variety of projects.”

    Question 3: Who at Arthritis Research UK has the expertise to represent Arthritis specific issues when, and where, it matters most?  What is their expertise?

    Answer: “Dr Karen Walker-Bone is the director of the Arthritis Research UK–MRC Centre for Musculoskeletal Health and Work, and an associate professor in occupational rheumatology at the University of Southampton.

    “Professor Brigitte Scammell was the first woman in the UK to become a professor of orthopaedics. She was a founding member of the Arthritis Research UK Pain Centre.”

    As a member of the public, with friends affected by arthritis, I am genuinely encouraged by this information.  I am pleased that those with arthritis have such focussed, expert and determined support.

    As a person with Cerebral Palsy, I have to ask “Who is there to act in a similar way for me?”   

    I google the phrase “Cerebral Palsy charity” and Scope is the first in the list of results.

    How will they answer my questions?

    Question 1: Scope’s charitable objects state that it exists “especially” for “those with Cerebral Palsy.”  What does Scope do, day in day out, that especially benefits people with CP? (See post dated 5/5/17, 25/5/17, 9/6/17, 12/6/17, 21/6/17 and 11/9/17)

    Answer: “We don’t offer any services or campaigns that are specifically aimed at CP”.  This was later amended to “Scope has a particular interest in CP”.  To me, this statement is no more than a re-wording of Scope’s charitable object.  I’m still unclear about what, if anything, they do to express this particular interest, beyond providing some information about CP on their website.  Scope admits this information is basic and in need of improvement.  How much this information improves over the coming year remains to be seen.  

    Is providing information about Cerebral Palsy via their website and helpline Scope’s definition of having a “particular interest” in Cerebral Palsy?  There are many websites that provide information about CP.    Surely a charity which “retains expertise” and has a “particular interest” in a certain condition should do more than just provide information about it.  Arthritis Research UK is certainly expressing its own particular interest in more pro-active ways.  If Scope would like to provide more detail and clarification, then I would be grateful.

    Question 2: Money is being donated to Scope on the basis that your charitable objects are a true and fair reflection of your daily activities.  How do you use that money to benefit “especially” those with CP?  How much is being invested in CP research? (See post dated 9/6/17 and 11/9/17)

    Answer: I couldn’t find an answer, beyond the statement that Scope has a “particular interest” in CP.  If Scope would still like to clarify this, again I would be grateful.

    Question 3: Scope is the charity most associated with CP, an area in which it claims to “retain expertise”.  Who at Scope has the expertise to represent CP specific issues when, and where,  it matters most?  What is their expertise?  Who is reviewing and contributing to the NICE guidance, for example? (See post dated 21/6/17 and 11/9/17)

    Answer: “Scope remains a charity with a particular interest in cerebral palsy. Our policy team are tasked with responding to government consultations which would include consultations from NICE where appropriate.”  I’m still not sure who on that team has expertise in CP and what their expertise actually is.  Again, if Scope would like to clarify this for me I would be grateful.

    Re: post by @forgoodnesssake dated 3.9.17. I note that Scope has not made any comment at all about its involvement with the Communication Trust.  This genuinely surprises me.  Is Scope happy for future readers of this thread to potentially interpret this as tacit agreement that it does not have any active involvement?  

    The detail provided by Arthritis Research UK is in stark contrast to the information provided by Scope in reply to my questions.  Having carefully considered all of this, I have to agree with you @Bubbles83.  I would like to think Scope will be using its extensive resources on our behalf but, sadly, I remain to be convinced of it.

     I don’t know of any other organisations that we, as adults with CP, can turn to.  At the moment, I can only think that anyone with concerns about the lack of support for adults with CP would be best advised to contact NICE directly to see if there is anything that they can contribute.  

    I would like to thank everyone who has added their support to the issues and concerns I have raised.  That so many of us feel the same way proves that these issues are genuine and need to be addressed.  Anecdotal evidence proves that many adults with CP are struggling and being ignored.  Unfortunately Scope, while claiming to have a “particular interest” in CP, shows, in my opinion, no real indication of actually listening.  Scope claims to exist “especially” for those with CP but, as @derekliv has said: for adults with CP “ Without the basic medical support, the social agenda that Scope is pushing is a waste of time and far too late.”




  • emmalivemmaliv Member Posts: 17 Connected
    Hi
    firstly I wanted to say how wonderfully articulate you are and how happy we all are to have you speaking out in this way. 

    Secondly I have been a little quite on here of late in part due to manic school holidays Andy also dealing with some of my health issues. However I would love to update you on some of the things  am trying to do.  I haven't Been totally idol. 

    please bare with me till tonight and I will fill you in  


  • RegReg Member Posts: 27 Courageous
    Good to hear from you again. 

    In my June post I mentioned a CP- Exit. I was not being totally tongue in cheek as we all seem to agree that we need ''the CP society '' charity  as the change of name  from spastic society coincided with the whole change in focus from CP to a generalist disability charity . We do need a charity to champion disability but we also need a charity to focus on CP research and the specific needs  that arise from CP.

    I was told by a GP about the benefits of cannabis for muscle spasms. I was a bit surprised but when I went online I saw research into cannabis use and MS and authorisation of a cannabis based medication for MS users but nothing about advocacy for use with CP muscle spasms. That is despite the fact that MS sufferers and people with CP both use baclofen , botox etc. 

    That is just another example / anecdote of why those with CP need a charity dedicated to help and research. I did wonder if advice from a charity lawyer was the way forward as  we are saying is that SCOPE isn't following one of its charitable objects  and so they either need to do so or , as I suspect most would say , we need a specific charity for CP. Just like Arthritus UK or the MS Society.

    I am not sure anyone want to be Theresa May of the CP-Exit though I suspect we would have a few Boris Johnson volunteers?

    Some of the many lawyers who make a very healthy living off CP claims against hospitals may be willing to give advice on charitable objects query and the consequent referral to the charity commission or to put their name /support behind a new venture.   Just a thought ...
  • emmalivemmaliv Member Posts: 17 Connected
    Hi All

    Reading all the above posts completely re-affirms my belief that there is much to do to improve the plight of adults with CP and that Scope (despite being given lots of opportunity) are not willing for one reason another to put the needs of the CP community ahead of their pan-disability social agenda. And it is reassuring (though frustrating) that I am not alone in thinking this, even Private Eye have picked up on this!

    Not that I want to hijack this forum, but I wanted to fill you in on some of the projects and conversations that I have been having of late in order to both keep you in the look and in the hope that some of you may have some time to support me.

    One of the key things I found from having conversations is how little awareness of about the size of the CP population and the lack of services to support us. I have been doing my best to change this in some small way. This is a link to an article that was published in my local community paper.

    This has also helped to increase the signatures for my petition for NHS England - please continue to share and sign. The more signatures gathered before we submit it, the more chance we have that it will be listened to.

    As @Reg has pointed out, there is very little research being carried out for adults with CP. Although there is some recognition of the degenerative impact of living with the long-term condition, it seems the medical profession are ignorant of how to treat it. There simply is not the research either here or abroad that is definitive and therefore we have a chicken and egg situation - without research, the medics are at a loss and without the medics calling for the research, none is being funded.

    Excitingly, I have been able to make some good links with a researcher at Brunel university who is really interested in CP. In fact she would like to become a professor specialising in this area (wouldn't that be amazing). Together with Brunel, I am hoping to start a project which will focus on collecting anecdotal life stories of adults with CP.  I am hoping that by collecting people's life stories (such as are shared in this forum) we can begin to raise the awareness of people in the wider community of our experiences and demonstrate the need for further research. At the same time, under the auspices of Brunel university, use these life stories (data) as a piece of qualitative research in itself. So if you are happy to share your life story, please please get in touch.

    I also want to find a way of bringing together professionals across disciplines who work with adults with CP and could share their knowledge and experiences to support each other and provide better care. I am arranging an evening with a friend and colleague who is a physio for physios and OTs who have experience treating and working with an adult with CP. My hope is that in doing so we can encourage professionals to share information and provide a forum where knowledge can be shared. When we have set a firm date and venue I will happily share this here for you to pass on to anyone you think may be interested.  

    Lastly, like you, I feel saddened that an organisation, such as Scope, is not championing our needs specifically, as without this our voice is lost. I am looking in to this as well and please feel free to contact my via my facebook page.

    @BeccyJ
    @Reg
    @forgoodnesssake, @Bubbles83 @derekliv @DanielWearne @quinrah @Nasmamu @clairek5
  • BeccyJBeccyJ Member Posts: 59 Courageous
    Thanks again for the support everyone.  It really does sadden me to see how little Scope seems to care about this issue.  But, as has been pointed out, there other options.  The issues that have been highlighted here shouldn't be ignored and all avenues need to be explored.

    @emmaliv thanks for the update.  I'll be in touch as soon as i can to see if there's anything i can do to help
  • emmalivemmaliv Member Posts: 17 Connected
    edited October 2017
    Hi @BeccyJ
    Lets do it. Get in touch when you can.
    Emma
  • gemma69gemma69 Member Posts: 1 Listener
    Hi I'm 25yr old with undiagnosed CP,my nanna has  tried for all my adult life unsuccessfuly to get it diagnosed, living in Wales there is absolutley no services whatsoever and although I have many disabilities the Brick Walls are too many and I have been left to struggle & get on with it. Thanks to all those involved in this thread, I feel for each one of you,,and it's given me a little comfort to read of your strength  and determination to fight on regardless. Much love from Gemma xx
  • Bubbles83Bubbles83 Member Posts: 28 Connected
    Hi everyone i hope you're all well , just checking in to see if there has been any developments?
  • forgoodnesssakeforgoodnesssake Member Posts: 364 Pioneering
    Got some time to catch up with things at last and have just re-read the above thread.  So articulate and well argued and determined, esp. @BeccyJ
    TBH I feel as if we are all being made mugs of, and given that I have another, not unrelated, "situation" building with another national disability organisation I have got my letter writing (boxing) gloves on now! 
    Just written a 2 pager to both the CEO and the Chair of Scope, raising many of the above issues from our particular perspective but also quoting him (CEO) back to himself from a rather cringily corporate interview he gave to Third Sector back in Aug or Sept. Not so much "nothing about us without us" but rather "nothing about us...at all"
  • forgoodnesssakeforgoodnesssake Member Posts: 364 Pioneering
    oh joy ...I have just been notified that i have earned 5 points and a "name-dropper badge"    Give me strength!
  • BeccyJBeccyJ Member Posts: 59 Courageous
    edited November 2017
     forgoodnesssake said:
    oh joy ...I have just been notified that i have earned 5 points and a "name-dropper badge"    Give me strength!
  • BeccyJBeccyJ Member Posts: 59 Courageous
    edited November 2017
  • BeccyJBeccyJ Member Posts: 59 Courageous


    Hello everyone

    I am really sorry but I have a lot going on at the moment and can’t give this as much attention but I was interested in your post @forgoodnesssake.  Please let us know the response you get.

    Are these the articles you meant

     https://www.thirdsector.co.uk/scope-plans-cut-two-thirds-staff-reduce-income-40-per-cent/management/article/1440185

    and

    http://www.thinknpc.org/publications/greater-scope-for-greater-impact/

    So Scope is “refocusing on doing less”.  

    This is of great concern to those of us with CP, especially considering that Scope is already doing very little if anything that is “especially” for those with CP.  Indeed the only reference to CP in either article is made in reference to Scope’s historical context.

    I was also very concerned to read that the CEO of an organisation that exists “especially” for “those with CP” should state that he is “thankful” that the charity he heads is not named “The Cerebral Palsy Society” or “Action Cerebral Palsy”

    At best, this is an extremely poor choice of words.

    @quinrah.  Can you please ask Mr Atkinson to explain his statement.

    @quinrah.  Can you also explain how Scope’s “expertise” and “particular interest in CP” will be affected in Scope’s vision of refocusing on doing less.  
  • BeccyJBeccyJ Member Posts: 59 Courageous
    edited November 2017
    BeccyJ said:

    I was also very concerned to read that the CEO of an organisation that exists “especially” for “those with CP” should state that he is “thankful” that the charity he heads is not named “The Cerebral Palsy Society” or “Action Cerebral Palsy”

    At best, this is an extremely poor choice of words.

    @quinrah.  Can you please ask Mr Atkinson to explain his statement.

    @quinrah

    In connection to my request for clarification on this point, I would like to add that Mr Atkinson goes on to say that “spastic’ had become a term of abuse often bandied around the school playground.”.

    In its proper context, this was his statement

    ”In 1994, the organisation changed its name to ‘Scope’—thankfully rejecting the alternatives on the shortlist including ‘Cerebral Palsy Society’, ‘Action Cerebral Palsy’ and ‘Capability and Action Disability’. The change of name was symbolic for two reasons. First, ‘spastic’ had become a term of abuse often bandied around the school playground. There was therefore a risk that the brand may be a negative rather than positive force for change.”

    This implies that he sees the terms cerebral palsy and spasticity as being synonymous, which he should know they are not.  Spasticity can affect people with other neurological conditions like MS and is just one form of cerebral palsy.  Cerebral Palsy, according to the NHS, is “the name for a GROUP of lifelong conditions that affect movement and co-ordination, caused by a problem with the brain that occurs before, during or soon after birth.”  

    Futhermore Scope is an organisation that campaigns for equality for the disabled, improving understanding of disability, and to help the public “see the person”.  Surely a key part of that should be aiming to re-educate people regarding the term “spastic” and its true meaning.  By shying away from the term “spastic” (and even, apparently, the term “cerebral palsy”) Scope could be said to be tacitly accepting spastic as being a term of abuse - when it should be campaigning to change people’s attitudes.

    Therefore I think Mr Atkinson needs to explain his statement
  • forgoodnesssakeforgoodnesssake Member Posts: 364 Pioneering
    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...
  • BeccyJBeccyJ 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.


  • BeccyJBeccyJ 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!
  • BeccyJBeccyJ 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.
  • dereklivderekliv 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
  • Bubbles83Bubbles83 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!
  • quinrahquinrah Member Posts: 24 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

  • Cheese2323Cheese2323 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?

  • Cheese2323Cheese2323 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


  • BeccyJBeccyJ 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.

  • Bubbles83Bubbles83 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 
  • quinrahquinrah Member Posts: 24 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

  • forgoodnesssakeforgoodnesssake Member Posts: 364 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. 
  • quinrahquinrah Member Posts: 24 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

  • forgoodnesssakeforgoodnesssake Member Posts: 364 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!
  • Bubbles83Bubbles83 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 :)


  • forgoodnesssakeforgoodnesssake Member Posts: 364 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...





  • Bubbles83Bubbles83 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
  • forgoodnesssakeforgoodnesssake Member Posts: 364 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...
  • StayceStayce Member Posts: 406 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






  • Bubbles83Bubbles83 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 
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