Better Care for adults with CP

BeccyJ

Hello everyone

Just catching up with this.  I’m sorry I wasn’t able to make the meeting.  I was interested to read the summary provided by @forgoodnesssake

I actually asked for a copy of the minutes.  I haven’t received them yet but hopefully soon!

I thought @Stayce made some interesting points.  After all, the whole crux of the matter lies with the lack of research into CP, particularly in adulthood.  Providing information and advice without supporting research projects is , I think, fraught with danger on all sorts of levels.  Anecdotal evidence on its own is insufficient.

The issue of “signposting” people with CP to other charities also presents potential pitfalls and could add frustration for people already under significant stress.  For example:

@Stayce mentioned the Ataxia society so I had a look at their website and put myself in the position of a parent whose child had just been diagnosed with Ataxic CP.

This is the information I found.  Source material: Ataxia.org.uk. PDF file “Ataxia:What’s That?”

“Is there a link between ataxia and other conditions?

“Ataxia can also be a feature of other conditions, such as multiple sclerosis and cerebral palsy. However, most of Ataxia UK’s services and information are only relevant for the group of progressive cerebellar ataxias. If you want to find out more about these conditions you may find it particularly helpful to get in touch with the organisation for the specific condition concerned.

“Web: www.mssociety.org.uk Tel: 0808 800 8000

“Web: www.scope.org.uk

“Tel: 0808 800 3333”

Putting myself in the position of a parent of a newly diagnosed child I would find it incredibly frustrating to have been signposted by Scope to the Ataxia Society only for them to send me straight back to Scope again!

As that parent, who do I turn to for specialised help and support?  It’s not Scope but it is not the Ataxia Society either?  Where do I go?  Who is going to help me?

The information provided by the Ataxia Society does, however, support one very crucial point.  CP is a unique condition with its own unique challenges.  The Ataxia Society clearly distinguishes Ataxic CP from progressive Cerebellar Ataxia and Ataxia caused by MS.

So, The Ataxia Society doesn’t claim to have expertise in Ataxic CP.  Their reasoning appears to be that Ataxic CP is a separate condition in its own right.

Who does have expertise in Ataxic CP?  The Ataxia Society clearly signposts people to Scope.

Scope’s argument that the needs of people with CP can be met solely by a pan-disability charity is therefore one that would not seem, in my opinion, to be supported by the Ataxia Society.  

But Scope argues that people with CP only need the generic support of a pan disability charity.

@forgoodnessake has said that Scope admitted to having let its CP expertise slip but won’t be getting involved in medical campaigns or research projects.  Where is the expertise going to come from?  The Ataxia Society doesn’t have expertise in CP.  If the expertise doesn’t originate with the charity existing “especially” for those with CP, where is it coming from? 

Where will Scope find the expertise with which to “update and improve” its CP “information and advice”?

The information provided by Ataxia Society also confirms that people are being signposted to Scope as being the CP charity when it itself claims to be interested in being known as a pan disability charity.  A clear message needs to be sent out to clarify what exactly Scope will be focussed on.

There are certainly a lot of issues here that I feel need serious consideration on the part of all involved.

@quinrah any comments or feedback on Scope’s perspective here would be welcome.  May I also have a copy of the minutes of the recent meeting.  Many thanks

forgoodnesssake

Absolutely and @emmaliv in particular made, or at least tried to, this very point at the meeting but no answer was forthcoming...and in fact when "signposting" was mentioned we both said "but to who?"   and again no useful answer.

quinrah

Good morning,

The notes from the meeting have been emailed this morning and I've also pasted a copy below. During the discussion it was acknowledged that Scope must become better at sign-posting stakeholders – including those conducting consultations and research – to other charities where it is not in a position to provide expertise or support. More generally, it was acknowledged that Scope must be transparent about its position on cerebral palsy to allow the full range of stakeholders - including those that may look to signpost to us - to understand better where it is and is not positioned to engage.

Best wishes
Lisa

Notes from Discussion on Scope’s position on Cerebral Palsy 5 February 2018 Present: Jenny Herd Derek Livingstone Emma Livingstone Scope staff present: Mark Atkinson, Chief Executive Steven Maiden, Company Secretary John McLachlan, Director of Delivery Lisa Quinlan Rahman, Executive Director of Customer Strategy and Experience Background and context Mark Atkinson welcomed everyone to Market Road noting that this meeting was an opportunity to have a face-to-face discussion about issues recently highlighted on Scope’s Online Community. The focus of these discussions has been Scope’s position as a pandisability charity and how it retains a particular interest in cerebral palsy. By way of context, it was clarified that Scope’s move toward being a pan-disability organisation is not a recent change. It has been a gradual move that has been driven forward by successive trustee boards and arguably began in 1994 with the name change from The Spastics Society to Scope. However, a definite change was signalled and formalised in the constitution in 2008 when Scope’s charitable purpose was amended by the Membership to state more clearly the commitment to promote equality, diversity, independence and health of all disabled people. Nonetheless, Scope retained a focus on and expertise in cerebral palsy which remains within the charitable purpose in the form of; “especially those with cerebral palsy”. It was acknowledged that there is a tension between a pan-disability and impairment-specific focus but this was a tension that Scope’s Board was currently not seeking to change. Cerebral palsy is integral to Scope’s history and there remains a need for impairment-specific support and expertise. Scope continues to believe it in a position to address these needs. Scope’s current strategy, its developing suite of services and its continuing expertise in cerebral palsy constitute what the board of trustees believe is the most effective way of achieving the charitable purpose in its entirety. Discussion During the meeting, the following points were noted: • Concerns were raised that Scope’s move toward pan-disability has left those with cerebral palsy without a dedicated national charity. This has left gaps in a number of areas including: o Pushing forward medical research which is needed in a time when cerebral palsy and ageing is a growing, under-research area of concern. Specific examples were given including the lack of understanding from medical professionals on how to treat people with cerebral palsy and the under funding of research. o The need for a national voice campaigning and influencing specifically on the behalf of those with cerebral palsy. Examples were given of consultations in which Scope had not engaged but could have considerably influenced such as the recent NICE consultation. It was suggested that cerebral palsy was the only major impairment that did not have national charity dedicated to it. o There remains need for cerebral palsy-specific services and support especially those dedicated to transition to adulthood. There was reference to the dramatic fall off of support for some people with cerebral palsy as they left the education system. • Scope acknowledged that the current impairment-specific offer was currently not of a high-enough standard. Work is underway to bring in additional resource to improve in this area and to map out where needs are and how Scope can best meet them. • This mapping will be led by a new, dedicated member of staff who will build on existing knowledge from across Scope. This will be an ongoing development process that those who have taken part in online discussions are invited to contribute. • It was also acknowledged that Scope must become better at sign-posting stakeholders – including those conducting consultations and research – to other charities where it is not in a position to provide expertise or support. • More generally, Scope must be transparent about its position on cerebral palsy to allow the full range of stakeholders to understand better where it is and is not positioned to engage. Next steps and actions There were a number of actions agreed that the meeting. These were: • Scope will invite all of those who have taken part in online discussions to engage in the review of Scope’s cerebral palsy information and support outlined above. Attendees suggested as a starter, that communication should be a focus over the coming years in addition to the three themes of the strategy that it has already identified; getting the best start in life, living the life I choose and financial security. • Should there be appetite from attendees or from those on the online community, regular meetings similar to this one can be arranged. • Mark Atkinson with investigate whether Scope continues to engage with the Communications Trust and what involvement Scope has had in the current NICE consultation.End of Notes

forgoodnesssake

I have just seen that Richard Luke @speedincaesar is the new community advisor on CP.  We were told in the meeting more than a month ago that he would be getting in touch once he started to work on CP stuff but so far I have not been contacted.  Has anyone else?  Not sure when he actually started but I would have thought that he might have been directed to this thread if he had not already seen it (he has CP)
It would be really good to hear what his actual remit is...for example is it just on the Community or wider?  I feel that we were led to believe that it was more than just a "community" role, but I may be wrong.

BeccyJ

@forgoodnessake I haven’t heard anything directly either.  I agree that there should have been some kind of formal announcement explaining exactly what the role of CP specialist advisor entails.  I had been expecting one and am quite surprised that nothing has been forthcoming.  From reading the discussions started by @panther and @karenlane on the CP forum it looks like he will be “build(ing) upon what Scope already offers” which is all very vague.  What does that mean exactly?  

@panther also reiterated a lot of what had already been expressed here, confirming that the feeling of being neglected, if not completely sidelined, is widespread among those of us with CP.  She also questioned whether we can expect anything more than just one “specialist” officer, which is something I feel needs to be addressed, but as far as I can see that question remains unanswered.  The meeting minutes would suggest that one specialist officer is the full extent of what is now being offered, but leaving it unclarified could add to the general impression of vagueness.  

Given the way that this has been handled so far, it certainly gives the impression of being potentially rather a token gesture with no particular aim behind it.  I am not saying that I think it is a token gesture.  I hope it isn't and that it is instead the start of something positive.  I certainly want to make constructive suggestions and contributions. The comments I am making now are offered in that spirit and I don't wish to suggest that anyone who is involved in this would not want it to succeed or result in the creation of something meaningful.

However, I would have thought that if this genuinely is the beginning of a project Scope is taking seriously, there would be some kind of publicised statement / plan of action with clearly stated goals and which gives everyone the opportunity to take part.  It shouldn’t be something that is vaguely mentioned in passing to those who have questioned Scope’s disregard of CP, and the group of people it claims to “especially” represent.

In raising these concerns I am thinking particularly of people who may wish to be involved / have something to contribute but are unaware of what has been discussed here.  They should at least be given an opportunity.

On a slightly unrelated issue, I have mentioned a few times here that Scope has been the top result if the phrase "cerebral palsy charity" is googled.  

I note that this is (rather interestingly) no longer the case, at least when I last checked!  Is it a coincidence or not?

Is this something Scope could clarify please?  Is it a coincidence or part of a wider conscious decision?

(Scope is however still the top result if cerebral palsy charity is googled without the quotation marks or another search engine is used - or at least it was when I last checked).

JohnMcL

Dear All,

I can confirm that Richard started his new role at the end of February as planned. He is currently settling in and completing his induction. We are keen for Richard to get the best possible start and will ask him to formally introduce himself to you all shortly.

Richard’s role is broad, he will be providing specialist support to various aspects of our work including the Helpline, Community and our CP Information. Richard will be working with the wider team here at Scope to develop our CP offer within the context of our wider strategy.

Richard is beginning to map out our CP work (as discussed at the meeting) and will in due course invite members of the community to contribute.

Kind regards,

John 

(John McLachlan - Director of Delivery)

Anni

The attitude of Scope towards CP is very worrying. Since they have turned themselves into a ‘pan disability’ charity, there is now no CP charity. All Scope seems to be able to offer is the online community, and while this is helpful in terms of feeling you’re not alone, it is full of people understandably feeling just as scared and frustrated with their CP as I am. What we need is help, campaigning, someone to fight our specific corner. At least when it was The Spastics Society, I knew it was CP centric. (And yes, I hate the S word as much as you, and no, I don’t want to go back to that name!)

Bubbles83

Hi Anni, this is an opinion shared by many of us on this site, as we keep coming back to this very conversation, no matter how hard the CP community shout we are not heard, its very frustrating and i feel as though i'm in danger of sounding like a broken record, as i keep hearing and saying the same things again and again, if you read the link above you will see that we've have tried to raise awareness, but it seems to have being completely over looked by the charity that was supposed to be in our corner

Bubbles83

the comments above sorry, not link  

BeccyJ

@Anni

Thank you so much for your support here.  I agree with everything you say.  Certainly, the forum has been useful in that it helps us to know we're not alone and I'm so sorry to hear you've been having a hard time too.

In some ways, though, reading about our shared experiences and concerns just reinforces the feeling of being ignored.  We are all saying exactly the same things and all struggling to get anyone to listen.  I know it's something @Bubbles83 and everyone here will agree with.  

Reading the guest blogs has been very interesting but in themselves they achieve very little.  I've read them but that doesn't mean I'm any more likely to be able to get the medical support I need or that the necessary research will be commissioned that will allow suitable treatments and services to be developed.

In particular, I concur thoroughly with what you say here: "What we need is help, campaigning, someone to fight our specific corner."

I wonder what, if anything, will actually change as a result of the recent guest blogs. Certainly, with Scope unwilling to help us with the concerns we've raised, the likelihood is that they will achieve nothing, apart from the confirmation that adults with CP feel extremely concerned about their future but, with no one willing to represent their concerns, also they feel ignored.

I replied to @Ram quoting sine information I read in Wikipedia's Spastic Cerebral Palsy article under Prognosis.  Wikipedia isn't a source I would normally quote but I think what has been written there summarises the whole issue very succinctly and I thought it was worth reporting here.

"Cerebral palsy, including spastic cerebral palsy, is notable for a glaring overall research deficiency—the fact that it is one of the very few major groups of conditions on the planet in human beings for which medical science has not yet (as of 2011) collected wide-ranging empirical data on the development and experiences of young adults, the middle agedand older adults. An especially puzzling aspect of this lies in the fact that cerebral palsy as defined by modern science was first "discovered" and specifically addressed well over 100 years ago and that it would therefore be reasonable to expect by now that at least some empirical data on the adult populations with these conditions would have long since been collected, especially over the second half of the 20th century when existing treatment technologies rapidly improved and new ones came into being. The vast majority of empirical data on the various forms of cerebral palsy is concerned near-exclusively with children (birth to about 10 years of age) and sometimes pre-teens and early teens (11–13). Some doctors attempt to provide their own personal justifications for keeping their CP specialities purely paediatric, but there is no objectively apparent set of reasons backed by any scientific consensus as to why medical science has made a point of researching adult cases of multiple sclerosis, muscular dystrophy and the various forms of cancer in young and older adults, but has failed to do so with CP."

JohnMcL

Hi All,

As promised Richard has now introduced himself 'formally' to the Community. Please follow this link; https://community.scope.org.uk/discussion/43299/hi-im-richard-ask-me-questions-about-cp

Richard has begun the process of mapping out our current information and support offer related to cerebral palsy. Alongside this Richard will seek your views to help us consider what more we can do, support and where appropriate when we should signpost to others.

Whilst Richard is still in the early days of his work with us, we see him as crucial to the development of our future work with regard to cerebral palsy. 

Please do chat with Richard (@Richard_Scope) who will keep you informed of our work on CP.

Kind regards

John