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Governance under scrutiny: identities revealed in charity complaint

January 20, 2022

This blog deals with issues relating to law and health, due process and civil society. This post follows on from a previous post regarding the handling of a complaint that I made to a major ME charity in the UK and my subsequent appeal to the Charity Commission.

I have lived with the discrete illness myalgic encephalomyelitis/ME (sometimes referred to, confusingly, as “ME/CFS”) since 1981. I work independently and I am not affiliated to any organisation or group in the ME communityI am a barrister. For more information see About.

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Re-cap

In my recent post on 10 January 2022, I published an account of my complaint to a major ME charity

Storm over City

Storm clouds over the City

about two emails that I received from a senior officeholder at the charity. The main text of the previous post is repeated at the end of this post [scroll down to access]. It sets out in full the background circumstances and text of the emails.

In August 2021, I had been invited to contribute a group email discussion which was started by a senior member of an ME collaboration (not the sender of the subsequent emails). Arising out of this group thread, I received the two emails, sent to me as the sole recipient, which gave rise to my complaint.

The email discussion had been commenced on a professional basis. I had been contacted via my public academic address. The sender of the offending emails was using his official charity email address and was therefore acting in his capacity as a senior representative of the organisation. This was an abuse of his position as an officeholder of the charity.

The complaint

In September 2021, I complained to the charity, summarised as follows:

“During the course of a group email exchange, Mr AB sent two emails which were inappropriate, threatening, intimidating and sexist. They were also intended to shut down legitimate discussion about the current situation regarding the ‘paused’ publication of the NICE guideline for ‘ME/CFS’ [contrary to a stated aim of the charity]. These actions call into question Mr AB’s fitness to continue in the role of X.”

The charity dismissed my complaint. The next stage in the appeal process is to the Charity Commission. In December 2021, the Commission dismissed my appeal.

The public interest 

Since publishing the first post on this topic, I have received a number of messages, both public and private, expressing considerable concern about both the conduct of the sender and the organisation’s dismissal of my complaint. I have been asked to identify the organisation and officeholder by many people, particularly those who donate to ME charities.

As a result of these enquiries, I have decided to identify the charity and the officeholder. Those who donate time, money or other resources to charities are entitled to know how the charity’s representatives conduct themselves and what behaviour is deemed acceptable by the organisation.

Taking all the circumstances into account, the public interest falls overwhelmingly in favour of identification.

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Identification

The charity concerned is the ME Association. The officeholder is the Chair of the Board of Trustees, Neil Riley.

I contacted the charity for comment before publishing this. Their response was as follows:
[ETA: Rick Osman, as Vice Chair of the Board of Trustees at the MEA, undertook the internal investigation into my complaint and responded to my request for comment on this post. He was not the sender of the emails; that was Neil Riley, Chair of the Board]

Dear Ms Eliot Smith, Thank you for your email of 17 January 2022. We are sorry that you felt upset by the exchange of emails and, with your agreement, the MEA’s complaints procedure was followed to investigate your grievance. Neither that review nor your subsequent complaint to the Charity Commission found any grounds to uphold your complaint and we consider the matter closed. Yours sincerely,Rick OsmanVice chair

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FROM THE FIRST POST ON THIS TOPIC:

10 January 2022

The background

In August 2021, the international ME community was thrown into a state of consternation and confusion by an unprecedented “pause” in final publication of the new NICE guideline for “ME/CFS“. After a stressful and chaotic few months, the guideline was eventually published on 29 October 2021 with some ex post facto amendments.

The complaint

During the initial period of chaos immediately after the publication was “paused” by NICE (the English National Institute for Health and Care Excellence), I was in contact with various organisations and individuals. I was invited to contribute a group email discussion which was started by a senior member of an ME collaboration.

Arising from this group thread, I received two emails which were sent to me as the sole recipient. These are the emails which gave rise to my complaint. The sender was – and still is – a senior and longstanding official in his organisation, a major ME charity.

In September 2021, I made a formal complaint to the charity, summarised as follows:

“During the course of a group email exchange, Mr AB sent two emails which were inappropriate, threatening, intimidating and sexist. They were also intended to shut down legitimate discussion about the current situation regarding the “paused” publication of the NICE guideline for “ME/CFS” [contrary to a stated aim of the charity]. These actions call into question Mr AB’s fitness to continue in the role of X.” 

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The emails which are the subject of my complaint

The first email was sent in response to a blog post I had written about the current situation with, and contents of, the “paused” publication. The email read as follows:

So, three years of long days in committee for our ME/CFS experts and patients on the Guideline Group. Giving up their time and energy for people with ME
They change the use of CBT, stop CBT [sic] and improve the previous Guideline hugely………….and you dismiss their achievement as “rubbish”!
Clearly that makes a good blog grabber but I would have expected a more measured and thoughtful approach from a public commentator.

I replied, in an email which I sent separately from the group thread:

Thank you for your frank response, AB. I appreciate it. 

I share your frustration, having spent the last ten years wrecking my own health researching and writing, as well as providing information, advice and support, both publicly and privately, often to desperate individuals. I accept, like you, that there is a huge physical and emotional toll in doing this work.

I am also grateful to you for having the courtesy to reply directly to me. So far, as you know, I am only hearing from xxxxx in the group email. I am therefore unable to gauge reactions to my contributions or answer questions and address the very real concerns that group members will have. 

Incidentally, the full context of the quote you mentioned gives a rather different tone to what I said:

“It’s rubbish. It still contains far too much latitude for abuse of patients. However, it is less rubbish than the existing guideline from 2007. It is a significant improvement on that and it is the best we are going to get for the foreseeable future.”

Please feel free to share the contents of this email with any other members of the group.

Thank you again for getting in touch.

The following day I wrote another short blog post. [ETA: This post is entitled “A debt of gratitude“. In this post, I explained about the email I had received, acknowledged the work of the guideline committee and thanked them for their service.] Later that day, I received this response from Mr AB [ETA: Mr AB was not a member of the guideline committee]:

Hi Valerie

My response was not ‘frank’. It was extremely diplomatic.

When I do ‘frank’, you will know about it.

I did read carefully the parenthesis that you gave to the ‘rubbish’ comment but that did not. I feel, ameliorate the whole strident tone of your blog. Still, that is what blogs that seek readers seem to favour.

You might care to read that very old book “How to win friends and influence people“. That phrase has, regrettably, come into disrepute. But the book shows a deep understanding of  people and how you can influence them. Shouting at them rarely works.

I like the fable about the wind and the sun in their attempts to divest a man of his coat. Bluster from the wind, failed. But the warmth of the sun, worked.

I think the future for ME patients…..lies in research and the development of  medical education as to how we can be best treated. The new Guideline contains some positive advances in that area. We need to make sure they are brought into general practice.

I think we do that by using our expert knowledge of the illness coupled with our diplomatic skills.

AB

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The substance of the complaint

This is the relevant extract from my Statement of Complaint to the charity:

  1. At no time, have I ever had any contact with AB, other than during these exchanges.
  2. The two emails he sent are offensive per se. In other circumstances such as random or anonymous comments on social media, I would have ignored them. However, in the context of an email conversation between a group of professionals, this is unacceptable behaviour.
  3. AB’s conduct renders him unfit to continue as X of YZ [charity]………

ACTION REQUIRED IN RESPONSE TO THIS COMPLAINT

  1. A full, transparent and independent investigation should be carried out into AB’s fitness to continue in his current office as X at YZ [charity].

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The outcome

Two months later, I received a decision from the charity. An internal (not independent) investigation had been carried out and no further action would be taken in response to my complaint.

I appealed this decision to the Charity Commission (a rather cumbersome process). On 2 December, I received a response saying that the Commission would take no further action.

Where do I go from here?

Both decisions were as I had expected – a sad indictment in itself. However, given the nature of the emails I received, combined with the high-level position of trust held by the sender and his abuse of that position, I decided that the complaint should be made so that it stands as a matter of record.

The next stage in the process would be an application for judicial review of the Charity Commission’s refusal to take any action. However, I can say with some confidence that my complaint would be unlikely to meet the threshold of seriousness required for such an application to succeed.

Conclusion

Whilst this was very far from being amongst the worst examples of offensive online behaviour, nevertheless it will remain as a stain on the reputation of both a major ME charity and the sender of the emails. It also contains one of the most absurd instances of “mansplaining” that I’ve ever come across.

In failing to take any action, both the charity and the Charity Commission have tacitly condoned inappropriate conduct by an officeholder of an ME charity towards an ME patient-advocate.

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One Comment leave one →
  1. January 20, 2022 19:13

    They will end up wishing they hadn’t been discouraging from the beginning.

    Liked by 1 person

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