Better Care for adults with CP

forgoodnesssake · September 2017

I see Scope's change of directionhas made it into Private Eye...not really a badge of honour (back pages, investigative not humorous)

BeccyJ · September 2017

@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?

BeccyJ · September 2017

@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.

quinrah · September 2017

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

Bubbles83 · September 2017

@BeccyJ good to see you're still going

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

BeccyJ · October 2017

Hi @Bubbles83

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.”

emmaliv · October 2017

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

Reg · October 2017

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 ...

emmaliv · October 2017

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

BeccyJ · October 2017

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

emmaliv · October 2017

Hi @BeccyJ
Lets do it. Get in touch when you can.
Emma

gemma69 · October 2017

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

Bubbles83 · November 2017

Hi everyone i hope you're all well , just checking in to see if there has been any developments?

forgoodnesssake · November 2017

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"

forgoodnesssake · November 2017

oh joy ...I have just been notified that i have earned 5 points and a "name-dropper badge" Give me strength!

BeccyJ · 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!

BeccyJ · November 2017

BeccyJ · November 2017

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.

BeccyJ · 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

forgoodnesssake · November 2017

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...

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