The future and funding of UK ME/CFS charities

Dx Revision Watch

Dx Revision Watch

Senior Member (Voting Rights)
This thread has been split from
https://www.s4me.info/threads/jk-rowling-donates-£15-3m-to-edinburgh-ms-research-centre.11260/

Cinders66 said:
...I feel a problem is i’m not sure mea really Want to be a full coverage large scale campaigning & comprehensive support organisation (eg including issues around social care) on top of their basic support and research position...
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And as I've said in another thread, since 2004, the MEA has been run by a small and relatively unchanging Board of Trustees who determine its policies and have considerable control over the organization's direction. There may be some key members of the BoT who might not welcome the type of staffing structure required to support a larger organization with a broader remit. I doubt it's solely a matter of lack of funds that has seen the MEA running without a CEO or equivalent senior position since Val Hockey took a redundancy package back in 2004.
 
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Dx Revision Watch said:
And as I've said in another thread, since 2004, the MEA has been run by a small and relatively unchanging Board of Trustees who determine its policies and have considerable control over the organization's direction. There may be some key members of the BoT who might not welcome the type of staffing structure required to support a larger organization with a broader remit. I doubt it's solely a matter of lack of funds that has seen the MEA running without a CEO or equivalent senior position since Val Hockey took a redundancy package back in 2004.
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Thanks for your comment and your replies elsewhere. I agree. As someone who is no longer a member or “supporter” as charities now call us, I’m not up to date with how democratic or transparent or aspirational they seem to members. The thing is, what does seem evident is that it is the charities as well as the illness community itself who are the ones who need to pull us into a better place of more reach, more community effort and fundraising etc and more campaigning.
 
Well, as someone who was denied membership of the ME Association, twice, in 2004, firstly via "Chair's Action" in between meetings of the Board of Trustees, and for the second application, following discussion of a minuted agenda item regarding my application at a Board of Trustees meeting, in which it was decided I was not a fit person to be admitted into membership of the MEA, I'm perhaps not the best person to comment.
 
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Dx Revision Watch said:
Legacies
In 2018 we received over £11.9m from generous supporters who left us gifts in their wills, which was £0.4m higher than 2017. For the third consecutive year we have been grateful to receive one particularly large legacy, meaning legacy income has maintained its high level over the last three years. We are very grateful to everyone who remembered us in their will.
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This is an area where we could do a lot better, I believe, without all the challenging issues of running shops and the like.
 
Dx Revision Watch said:
Well, as someone who was denied membership of the ME Association, twice, in 2006, firstly via "Chair's Action" in between meetings of the Board of Trustees, and for the second application, following discussion of a minuted agenda item regarding my application at a Board of Trustees meeting, in which it was decided I was not a fit person to be admitted into membership of the MEA, I'm perhaps not the best person to comment.
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Why were you denied membership???
 
Out of interest I looked up Parkinson’s uk who have income of about £35m/ year.

fundraising results
.....
Legacies contributed 42% of our total income
in 2018 and continued to be our single largest source of income at £14.8m (£17.7m in 2017). However we had a significant slowdown in receiving expected income from a small number of large estates. And we had no legacies of £250,000 or over in the year’s first half, compared to 11 in the first half of 2017. Legacies accounted for just over £2.5m
of our total shortfall.

Support from charitable trusts and foundations, high net worth individuals and corporations, often with multi-year commitments, allows us to plan long-term charitable activities. In 2018, they contributed a transformational £4.1m (£5.2m in 2017). We were thrilled to continue our partnerships with the National Garden Scheme and Aberdeen Standard Investments Charitable Foundation. And we benefited from new support, including the UK BioIndustry
Association, Paydens Group and easyHotel, as well as securing three new partnerships for 2019 and beyond. In total, however, philanthropic gifts and corporate fundraising brought in less than we’d projected. This accounted for £1.9m of our total shortfall.


Developing local fundraising and volunteering was a key target. In 2018, our regional and local groups’ fundraising (including income from legacies), underpinned by thousands of local supporters and volunteers, raised a combined £8.1m (£8.8m in 2017).

Running, walking and cycling continued to be popular with our fundraisers, as did challenges and events from skydives to comedy nights. High participation levels, with some additions to our events programme, helped us raise over £3m (£2.6m in 2017) for the first time. This included our first long distance walk in Northern Ireland – the Causeway Coast Challenge – and our corporate, committee-led gala, the Big Comedy Shake Up, bringing us a new audience.


Support from individual donors continued to underpin our income. We received over 115,000 gifts totalling £4.9m (£4.7m in 2017). This included £405,000 (£423,000 in 2017) from membership and through our appeals programme, regular giving products, general donations and in memoriam giving.
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It is interesting to see how they spent £39m in 2018.


Like MS society they spent millions on raising funds, but more £10m on research, and significant funds on support and services :


Resources expended
We spent £39.1m on our charitable activities during the year. This was £4.9m more than in 2017, and funded by accumulated reserves.
In line with our strategy to deliver a ‘faster cure’, we increased our investment in Parkinson’s research, funding projects that we believe will have the most life-changing impact. In 2018, we spent £10.5m on developing better treatments and a cure – a £2.5m increase on 2017.......


We continued to engage health and social care professionals across the UK, spending £5.2m (£4.6m in 2017) on our quality services work, targeting support and resources where need is greatest. This included grants of £235,000 for Parkinson’s nurses, funding three nurses in 2019.


We’ve continued to invest in activities to empower people to take control, providing crucial information and support services to more people affected by Parkinson’s. In 2018, we invested £15.5m (£14.3m in 2017) in local and helpline support, information resources, volunteer-led support programmes and raising awareness.


To continue growing in difficult fundraising conditions, it’s vital that we keep protecting, diversifying and growing our income base. In 2018, we invested just under £7.9m (£7.3m in 2017) on raising funds (including trading, merchandising and investment management costs) – an increase of nearly £600,000 year on year.
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Sarah94 said:
Why were you denied membership???
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(Unofficially) because the then Chair of Trustees and at least one member of the Board of Trustees had considered at the time that I was a political threat to the stability of the organization and under their Mem & Arts, the MEA has the right to deny membership to anyone whom it deems unsuitable to admit to membership.

I was however given no written reason(s) for their decision to twice reject my application and although I requested under the Data Act, copies of all information held about me by the Association on which they had relied when deciding whether to approve my application, this request was ignored. I was the first person to be denied membership of the Association.

(Note that applications for membership would normally be dealt with by the MEA's office admin staff and not considered by the Board of Trustees either between meetings of the Board, or placed on the agenda for discussion at a Board meeting, or via a "Chair's action" decision.)

The MEA subsequently made changes to its Memorandum & Articles of Association which govern how the charity conducts its business, via a membership postal vote and EGM, which included changes that would permit the Board to decide whose names would and would not go through to the ballot paper in its annual Trustee elections. They also changed the Mem & Arts so that in order to stand for election to the Board of Trustees, a nominee would need to be a member of the Association. (Whereas previously, non members could stand for election, but would be expected to become members if they were elected onto the Board.)

So now, if you are denied membership of the Association, you cannot stand for election to the Board.

[Edited to insert text: The MEA subsequently made changes to its Memorandum & Articles of Association which govern how the charity conducts its business, via a membership postal vote and EGM, which included changes that would permit the Board to decide whose names would and would not go through to the ballot paper in its annual Trustee elections.]
 
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I know from someone involved in a local Parkinson’s group that it’s not all rosy in those charities and there’s tension over the funding between local and the head office. However in my opinion the difference between level of support for ME national charities and MS/Parkinson’s is because MS and Parkinson’s do have a local presence and are involved in supporting patients. In ME the local situation is ok in some areas with effective groups like Sheffield having very good local charities that can bid for funding and get support to people in their areas. In other areas it appears to be a complete wasteland in terms of any M.E. support group presence. Facebook Groups are all well and good for sharing information and individual peer support. But ineffective in advocacy and leveraging support from local authorities and influencing CCGs.

AFME are piloting individual advocacy service which I think is a positive move.
MEA seem to be making some progress on at least getting meetings to lobby DWP, medical colleges
Nina Muirhead May be at the start of some positive influence on medical education.
NICE review was due to lobbying and publicity raised by Millions Missing and MEAssn petition.

In order to get more people with ME involved they need to be engaged locally. I’m not saying usurp existing local charities but where there aren’t local charities get behind local informal groups to provide the organising support needed, where there aren’t local groups look to generate them. I can’t believe I’m saying this but if AFME could build on individual support/advocacy provision and get alongside local groups with ME Association focussing on lobbying government and medical professions and on funding research. I think there could be an argument for merger of AFME and MEA into a new more effective mainstream ME charity. Which could be a better focus for fundraising for support and research.

There needs to be more effort put in to local activity because if there is any positive shift in NICE guidelines that’s only the beginning in getting any shift whatsoever in practice on the ground. That isn’t going to change unless there are people locally demanding it from their CCGs. It needs huge advocacy effort nationally and locally otherwise its going to be stonewalled.
 
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NelliePledge said:
I think there could be an argument for merger of AFME and MEA into a new more effective mainstream ME charity. Which could be a better focus for fundraising for support and research...
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A merger was mooted in the period following the MEA's funding crisis during the 2004 post Val Hockey era, when it was touch and go whether the MEA could be kept afloat or would need to fold.

Not a cat's chance in hell, I would wager, of Dr Shepherd agreeing to a merger with AfME. The MEA is run by its Board of Trustees - they control its policies and direction and Dr Shepherd has been a Trustee/Director since 2003.
 
Realise there are issues arising from history that might make it difficult to impossible. I still think it could be a practical option to improve the situation at some time in the future. If it could be seen as creating a new organisation taking forward positive elements and leaving behind negatives.
 
NelliePledge said:
Realise there are issues arising from history that might make it difficult to impossible. I still think it could be a practical option to improve the situation at some time in the future. If it could be seen as creating a new organisation taking forward positive elements and leaving behind negatives.
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Tbh when dr S leaves, retires, because they don’t have a ceo structure, the chance of mea finding someone else and to work for free (I think that dr S was able to make up an income elsewhere but few can do that & Also even want to, dr s has ME himself ) are small. There was another group (yes another 1) called CFS foundation or something that folded when it’s lead passed away, obviously AyME folded too (to be taken in by its sister who always clsomec they wre separate) I suspect there might be a merger then but we need professionalism and growth and volunteers but Also an inspiring field and a campaigning field, very quickly. I don’t want to just keep on plodding on.

There are alternative possible mergers such as MEA & TYMES & meruk

There’s currently lots of essentially single headed groups 25%, TYMES, MEA, MERUK, BRAME some which also have small number trustees, all advancing in age, that have been going on the same for years.
 
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With regard to legacies I think that Parkinson’s And dementia especially are in a much more favourable position than us because they are more end of life illnesses, they are degenerative ie you are going to die in a potentially bad state and as you decline in your 70/80s you might think about where to leave that wealth & house you built up in your healthy youth.
I’m an example of someone who’d got very severe by my twenties, have never worked seriously, live in a council house, won’t die possibly for years but will have nothing to leave anyway.
Obviously there are other many scenarios for cases and It’s worth Encouraging people in our community but our potential is less afaic.

AFMEs Facebook & Twitter seem to revolve around a hundred and one ways through any medium for the newly ill to explain that we are more than tired.
 
NelliePledge said:
Realise there are issues arising from history that might make it difficult to impossible. I still think it could be a practical option to improve the situation at some time in the future. If it could be seen as creating a new organisation taking forward positive elements and leaving behind negatives.
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One would also have to consider that although there will be some overlap in membership between AfME and the MEA, there will be members of MEA who would not be prepared to join AfME.
 
BRAME is essentially Christine and her daughter and BRAME does not run consultation exercises with patients and as far as I can see, when Christine or Tanya are present as reps of BRAME at meetings, like Forward-ME, or local services they are representing themselves.

The BRAME website doesn't appear to have been update since 2005.
 
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