AfME staffing and structure

Barry

Barry

Senior Member (Voting Rights)
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Cinders66 said:
JD is excellent. The program was informative, even a lady severe but not in the worst severity was able to show without energy, we have no life. Unfortunately it seems in AFME and other charity interests to present a rosy progesss picture. Whilst it was progress for enough MPs to care and get this debated in parliament with quite a high level of knowledge the outcome of the debate, which AFME know because it was discussed on their page , from the the minister involved was nothing, same old defence and justification of status quo. I’d prefer compete honesty to get a patient uprising for the millions missing protests,

Regarding #MM this year it’s about biomedical research funding...great. What will AFME be doing? I see mea are doing an awareness week stressing it’s real and physical which I thought had been done hundred times before ..l
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Why do I worry that AfME seem to have a "business model" that, to me at least, seems to put their own self-promotion and eminence ahead of the real science that is needed to help pwME.
 
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As a NGO, are budget reports for AfME available online?

Re MM campaign - 2019 is the 50th anniversary of WHO designation. Possible idea for campaign...

(Don't know the actual date of WHO designation, but after 50 years maybe not absolutely crucial for a campaign.)
 
DokaGirl said:
As a NGO, are budget reports for AfME available online?

Re MM campaign - 2019 is the 50th anniversary of WHO designation. Possible idea for campaign...

(Don't know the actual date of WHO designation, but after 50 years maybe not absolutely crucial for a campaign.)
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Here are their accounts for 2017/18

http://apps.charitycommission.gov.u...teredCharityNumber=1036419&SubsidiaryNumber=0

[And here is their annual report and accounts on their own website https://www.actionforme.org.uk/uploads/2017-2018-trustee-report-accounts.pdf ]
 
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Four full time staff on fundraising! I know charity ceo wage can be quite high but that’s often In the context of recruiting fine talent to drive the charity forward in its aims {???} and being in charge of large multi million resources and teams of staff
 
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We can’t expect everyone in charity work to work for free, iime are run by a very small team of volunteers, dr Charles Shepherd As a dr was able to derive a meaningful income through private medical practise I think whilst he contributed time for free or low cost for MEA.. I would not mind a small ME charity full time CEO getting the wage of an average head teacher £55,000 or £60,000. I don’t think more than that should be paid unless it’s really exceptional talent, in the way for example I thought that zaher Nahle was exceptional. I don’t think sonya C has proven exceptional, mean though it sounds to say, or even good enough.
 
DokaGirl said:
As a NGO, are budget reports for AfME available online?

Re MM campaign - 2019 is the 50th anniversary of WHO designation. Possible idea for campaign...

(Don't know the actual date of WHO designation, but after 50 years maybe not absolutely crucial for a campaign.)
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Given what has gone down with the WHO since early 2013, during the development of ICD-11, I would not recommend making a big thing of WHO designation...
I've just spent the last six years fighting for retention of the G93.3 legacy categories in the ICD-11 Diseases of the nervous system chapter.
 
It is worth doing a general search on charity CEO salaries.

Here are some articles discussing CEO salaries:
This is an old survey (2003) but it does enable comparison between different charities:

Harris Hill recruitment specialists say

The myth of the typical charity executive being paid six figure salaries is just that - a myth. Of the 168,237 charities registered in England and Wales as of 31st December 2017, just over 0.5% of them had any employees earning £100,000 or more, according to official figures from Charity Financials.
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I must admit reading round the subject, I am now more confused about what constitutes a fair salary for a chartity's CEO, but it does seem worrying the percentage of AfME's income that goes on staffing if that is not also including significant time spent in forwarding the aims of the charity, rather than just keeping it going.
 
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Thank you, @Dx Revision Watch, good point. Can't recall where the WHO process is at. Do you have a link to info on this? I have read updates on this in the past.

Thank you for your tremendous work on this. Terrible, but predictable this would be an issue too.

ETA: OK, I found an update on MEpedia; ME remains as a nervous system disorder.

So, your feeling is drawing attention to this classification will jeopardize where ME is categorized? In other words, don't poke the bear?

Maybe better for a discussion under Advocacy heading.
 
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Cinders66 said:
They have a poor business model that pays the ceo a high wage for being invisible
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Actually, I expect they have quite the up-to-date savvy business model. The problem is the business culture is to do all to protect the business. Corporate culture does not really mix with a primary mission to work on behalf of clients whose needs do not align with status quo mandates.

"Good" business models like to support power not work against it. There are always those businesses that break the mold and you would expect a charity to be one of them. Sadly, it's often not the case when the internal dynamic is corporate culture.
 
Unless something has changed recently having investigated CEO salary on the other site I remember it came in at £60,000-70,000 PA. For a charity this is quite usual.

There needs to be a change in how charities receive money I'm guessing. Salaries and projects need to be paid for so the charity feels beholden to donors who often don't give without strings attached I expect.
Though I don't think that's the only problem or that charities can't do better anyway. But often the people involved just have imbibed corporate culture and all the suggests into how they operate without trying to do anything different as per the needs of the people supposedly being served.

Edit: my mistake. The 2014/15 report (pg 28) states one salary between 70-80,000.

https://www.actionforme.org.uk/uploads/pdfs/trustee-report-and-accounts-2014-2015.pdf
 
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Snowdrop said:
Unless something has changed recently having investigated CEO salary on the other site I remember it came in at £60,000-70,000 PA. For a charity this is quite usual.

There needs to be a change in how charities receive money I'm guessing. Salaries and projects need to be paid for so the charity feels beholden to donors who often don't give without strings attached I expect.
Though I don't think that's the only problem or that charities can't do better anyway. But often the people involved just have imbibed corporate culture and all the suggests into how they operate without trying to do anything different as per the needs of the people supposedly being served.

Edit: my mistake. The 2014/15 report (pg 28) states one salary between 70-80,000.

https://www.actionforme.org.uk/uploads/pdfs/trustee-report-and-accounts-2014-2015.pdf
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Yes that’s roughly what I heard and i think that is too much for a charity CEO without scientific expertise, with staff levels around the size of a school, without a huge income to manage who’ve said they in the past they don’t have resources for social care advocacy support whilst previously deciding issues around this was a hot topic.
 
Peter Trewhitt said:
It is worth doing a general search on charity CEO salaries.

Here are some articles discussing CEO salaries:
This is an old survey (2003) but it does enable comparison between different charities:

...
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I’d tried to look up figures before and it’s hard to find more recent in table form. They are most with an income of £5m /year plus. It’s interesting the ratio of salary versus income. So the only charity there with a comparable income to ME charities a Methodist charity, had a CEO wage of £33, 000 with a wage per 1000 pound income score of 19. The next vaguely similar income, princess Diana charity with a £4m income, had a CEO wAge of £78 000 had a score of 19 but many wealthier charities are having a score of around 2. Obviously there’s going to be an expected wage level so poorer charities will have a higher score but prior to this year, AFME were with income around £0.5m yet a high CEO wage so a wage per 1000 pound income score would have been around 40. It’s still quite shocking how little ME charities can fundraise in context.
 
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