United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

Jonathan Edwards said:
The problem with X is that if you don't use it there is no access.

Not sure what Valerie ES is suggesting.
Or where money comes in to it.
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2/ There is already a small informal group that assists in cases such as Millie's and they do brilliant work. However, my proposal would be for an expanded team with a formalised structure which could carry out rapid responses when necessary (DoLS, sectioning, safeguarding etc.).

3/ The team would consist of a network of medical, legal & advocacy ME specialists coordinated by an admin team. There shd be proper funding made available for expenses plus fees for the involvement of local specialists where necessary. NB Anything worth doing WILL involve costs.

4/ The historical shortage of experienced & knowledgeable experts is a problem & needs to be addressed urgently. However this cd be partially mitigated by forming networks of local experts, particularly for legal issues (medical ignorance is separate issue too long to cover here)

5/ The loading on the current informal group has been grossly disproportionate. It needs a complete overhaul & update. However, this cd only happen using existing infrastructure of the recognised ME institutions & with their public endorsement + publicity around any new system.

Previous thread

#BringMillieHome
1/9
There has been much recent media coverage/discussion about the case of Millie McAinsh. Millie is a young woman who has been diagnosed with #SevereME. She was admitted to the Royal Lancaster Infirmary some time ago as she was unable to ingest/digest food.

2/ The 2021 NICE guideline for this illness references the need for tube-feeding in cases such as Millie's. However, #ME, especially in its severe form & particularly in young women, is an illness which inhabits a world of widespread cultural and medical ignorance and prejudice.

3/ As a result, Millie & her family are being subjected to a nightmare set of circumstances all too common in this kind of situation where the illness is not given essential life-saving credence/treatment.
NB: my knowledge of this case comes solely from public social media posts.

4/ So what needs to happen now? According to social media, Millie is subject to Deprivation of Liberty Safeguards (DoLS). IF this indeed is the case, then the route for appeal is to the Court of Protection. Legal advice/representation would be required.

5/ Apparently, Millie/her family have a lawyer although it's not clear for what purpose. It is to be hoped that it is someone familiar with ALL available legal options and with the challenges faced by far too many patients like Millie with #SevereME


6/ Beyond this case: the #ME charities shd use some of their combined reserves to fund & set up a crisis team for just this kind of situation which happens all too often. Yes it would be quite a complicated process but it shd have happened years ago (it's a mystery why it hasn't)

7/ Bigger picture: it must be accepted that the international #ME patient community has yet to change an entire culture and worldview. Fighting individual fires (such as Millie's) does not change entrenched attitudes and prejudices in populist/media/medical cultural thinking.

8/ Like many before me - and, no doubt, many yet to come - I am utterly disheartened/burned out by years of trying to address this problem. However, a summary of my thinking & proposals for tackling these issues is in the link below.

9/ The above proposal for a charity-funded crisis team should be considered (or reconsidered, if they have previously done so) by a collaboration of eg. @MEAssociation @actionforme @MEActNetUK.
#BringMillieHome highlights the need for this yet again.
Thank you for reading. END
 
Jonathan Edwards said:
The problem with X is that if you don't use it there is no access.

Not sure what Valerie ES is suggesting.
Or where money comes in to it.
Click to expand...
I assume you just join i.e. create an account - user name password & the post --- all free --- I joined years ago but only really used it recently. However, as someone who uses it (& will probably continue) you have to ask what the value is (I don't - so I continue to use it!).
Once you've created an account then you can e.g. do a search for a post/click on a link (like the one above) & respond.
 
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Amw66 said:
Thank you for reading.
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Thanks @Amw66.

I can see why Valerie suggests this but I am not sure that it is workable in present circumstances. ME/CFS related charities have no authority to challenge professionals caring for patients unless they have criteria that are accepted by professional or regulatory bodies. The professional bodies have not even indicated that they accept the NICE Guidelines as yet. NICE provided implicit guidance for management of severe cases but there are plenty of loopholes.

I think we need a protocol that specifically raises the points of argument that keep coming up in these cases and gives clear reasons why certain forms of management are unethical. Everyone is talking about this but as far as I am aware there is no protocol to refer to. And I have recently had conversations with several of the people most closely involved. If anyone knows of one please say so.

I think the protocol needs to be written in such a way that none of the Royal Colleges can disagree with it without implicitly denying basic legal rights. Even if they procrastinate, if a document is in the public domain and has been brought to everyone's attention in the media, there would be something for advocates to refer back to that would stand as unchallenged.

I will be in contact with various charities again this week.
 
Jonathan Edwards said:
Thanks @Amw66.

I can see why Valerie suggests this but I am not sure that it is workable in present circumstances. ME/CFS related charities have no authority to challenge professionals caring for patients unless they have criteria that are accepted by professional or regulatory bodies. The professional bodies have not even indicated that they accept the NICE Guidelines as yet. NICE provided implicit guidance for management of severe cases but there are plenty of loopholes.

I think we need a protocol that specifically raises the points of argument that keep coming up in these cases and gives clear reasons why certain forms of management are unethical. Everyone is talking about this but as far as I am aware there is no protocol to refer to. And I have recently had conversations with several of the people most closely involved. If anyone knows of one please say so.

I think the protocol needs to be written in such a way that none of the Royal Colleges can disagree with it without implicitly denying basic legal rights. Even if they procrastinate, if a document is in the public domain and has been brought to everyone's attention in the media, there would be something for advocates to refer back to that would stand as unchallenged.

I will be in contact with various charities again this week.
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I think, only think mind you, that I may have discovered a route to what's needed.

I've been doubling down on my research covering the legal aspects and contra-indicated practices based on the evidence based NICE Guideline, during this weekend. There have been a number of reviews and reports from the CQC, the PHSO plus the Cumberlege Report, the Paterson Inquiry and various others, ALL saying the same thing.

Patients voices on harm caused are not being listened to and never events are too often the result, with the processes of complaint being impossible to navigate.

The Select Committee for Public Administration and Constitutional Affairs reviews the work of the PHSO annually. In the written evidence to the 22-23 review, I also discovered a letter from a law professor in Administrative and Constitutional law which might be helpful. The trouble is, it's the one that Wragge has just had to resign from as Chairman, so I don't know if they have one at the moment.

For example, the CQC said this in it's 2018 report :

CQC calls for a change in safety culture across the NHS to reduce avoidable harm - Care Quality Commission

"NHS staff do a remarkable job to keep patients safe. But despite their best efforts, never events and other patient safety incidents continue to happen. In theory these events are entirely preventable: in practice too many patients suffer harm.

“Staff know that what they do carries risk, but the culture in which they work is one that views itself as essentially safe, where errors are considered exceptional, and where rigid hierarchical structures make it hard for staff to speak up about potential safety issues or raise concerns.

“We know there is a strong commitment to patient safety within our NHS and we must support staff to give safety the priority it deserves. NHS Improvement’s vision for a new patient safety strategy is a welcome development in achieving this aim.

“Everyone – including patients – can play a part in making patient safety a top priority and the recommendations we make today aim to achieve that. But there is a wider challenge for us all to effect the cultural change that we need, to have the humility to accept that we all can make errors – so we must plan everything we do with this in mind.​

3 deaths from Anorexia Nervosa prompted the Select Committee to conduct a rapid review and this resulted in instructions to the Royal Colleges to sort it out. Various position statements and policy documents were issued by the Rcpsych and that is what the hospitals are following. So the pressure to follow it is strong from a medico-legal point of view.

In June 2019, a review in the House of Commons found little progress on these recommendations and stated:


“We found there is a serious lack of training for doctors about eating disorders and recommend that the General Medical Council use its influence to ensure medical schools improve outcomes in relation to eating disorders.” (House of Commons Public Administration and Constitutional Affairs Committee, 2019) The need for improved training was also reinforced by the UK Government’s response in August 2019: “We conclude that there is a serious lack of training for doctors about eating disorders and the treatment of eating disorder patients, as evidenced, for example, by GPs relying on BMI as a sole indicator of whether people can access treatment for eating disorders, contrary to published guidance… While the number of hours spent in training does not on its own determine the competence of clinicians, two hours of training on such a complicated topic is insufficient”. ​


– Department of Health and Social Care, 2019

I've just finished the research today, and hopefully, if my capacity allows, will have a written document, no more than about 4 pages long highlighting the issues, together with human rights breaches and criminal offences involved. This would be for lawyers to use as a brief on background to the specific problems with malnutrition in ME/CFS which the medical experts can use as a primer to add their own necessary information to. This document is designed for lawyers to use only.

On the other question of publicising, we need a campaign to force the Select Committee to consider this on the basis that: the NICE Guideline is being ignored, it has previously caused harm and deaths, and one death currently has an Article 2 HRA 1998 inquest due to be heard in the summer. You don't get more serious than that, Article 2 is the right to life. I have an idea about a campaign, easy to get the numbers up and force a safety investigation on this whole question which could also conclude an investigation as to why none of the Royal Colleges have acknowledged the Guideline.

Something like a really simple template letter with a blank comments box to be downloaded so that everyone can fill in their own details and personal experiences in the box. Thousands could submit those. Like a massive thunderclap on facebook but straight at the HSSIB. The HSSIB will accept evidence from experts on the topic being complained about, so the everyone can be involved in forcing a substantial investigation. That's what we need initially.

Health Services Safety Investigations Body (HSSIB)

They'll be required to investigate that many complaints. If that doesn't get their attention then nothing will, except a legal case of institutional abuse, and that won't just involve the NHS - that'll be across the board.

Does this sound like it might fit the bill?
 
Maat said:
3 deaths from Anorexia Nervosa prompted the Select Committee to conduct a rapid review
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Maeve Boothby-O'Neill comes to mind .
I wonder is someone like Sajid Javid could be recruited/asked to raise this with the relevant Westminster (Parliamentary) Committee? Another thing to keep in mind is whether that [Select Committee to conduct a rapid review] is the most effective route to getting people the nutritional support they need?
Jonathan is much more aware of what is necessary [policy to ensure people get nutritional

JemPD said:
thank you so much for this @Jonathan Edwards its incredibly kind of you to give so much time & effort for us, we are all so grateful for all you do
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Yes, humbling to think people are left without the support they desperately need - thank you (and those you are working with) for working to deliver that.
 
FMMM1 said:
Maeve Boothby-O'Neill comes to mind .
I wonder is someone like Sajid Javid could be recruited/asked to raise this with the relevant Westminster (Parliamentary) Committee? Another thing to keep in mind is whether that [Select Committee to conduct a rapid review] is the most effective route to getting people the nutritional support they need?
Jonathan is much more aware of what is necessary [policy to ensure people get nutritional


Yes, humbling to think people are left without the support they desperately need - thank you (and those you are working with) for working to deliver that.
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Even with the rapid review it still took more than a year for a statement of position to be released by RCPSYCH, so no, not quick enough.
 
Maat said:
Does this sound like it might fit the bill?
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That sounds excellent @Maat.

I think this is all about health care professions coming to understand that ethical behaviour has to be based on reliable evidence. Clinicians have the right not to follow guidelines strictly but if they do not and that involves either exposing patients to unevidenced treatments they would not wish to have, or failing to provide life saving care, it is negligence.

We could discuss this all in open thread but I think I will set up a conversation. Some of what needs to be discussed impacts on individuals and may be best kept private.

I have been concerned that trying to write something for public use simply isn't practicable for all sorts of complicated reasons but in the last week or so I have been getting input suggesting that we all know roughly what is needed. It just needs to be written down logically.
 
FMMM1 said:
Maeve Boothby-O'Neill comes to mind .
Click to expand...

I have been in conversation with her father. This is relevant.

Maat said:
Even with the rapid review it still took more than a year for a statement of position to be released by RCPSYCH, so no, not quick enough.
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I think a document needs to produced and made public within a month or two. There are ways to do that. An official government commissioned document will be needed in time but I think there may be ways to get an unofficial document into an 'official' information stream, with the advantage that it would not be seen as competing with the official process.
 
I'm trying this multiquote thing, so if it goes completely wrong please don't judge as my brain feels like it's in a black hole at the moment!

In complete agreement with this:

Jonathan Edwards said:
That sounds excellent @Maat.

I think this is all about health care professions coming to understand that ethical behaviour has to be based on reliable evidence. Clinicians have the right not to follow guidelines strictly but if they do not and that involves either exposing patients to unevidenced treatments they would not wish to have, or failing to provide life saving care, it is negligence.

We could discuss this all in open thread but I think I will set up a conversation. Some of what needs to be discussed impacts on individuals and may be best kept private.

I have been concerned that trying to write something for public use simply isn't practicable for all sorts of complicated reasons but in the last week or so I have been getting input suggesting that we all know roughly what is needed. It just needs to be written down logically.
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Jonathan Edwards said:
I have been in conversation with her father. This is relevant.

Maeve was in my mind, and the two young ladies currently in hospital.

There is also two cases being heard together today at the Supreme Court involving end-of-life care for extremely young children. The majority of issues in the case have been dealt with. What the cases have been referred to the Supreme Court today for, is lifting of the Reporting Restrictions to name the doctors, because the parents, one set of which are both doctors themselves (the father a consultant), want to whistleblow on how they were treated by NHS staff. He ended up being arrested and handcuffed as he was holding his daughter's hand at her bedside. The man referred to in this article from 2020 is the Consultant father. I know who the Trusts are but obviously can't say, at least at the moment.

Father dragged away from ill child's bedside - BBC News

I think a document needs to produced and made public within a month or two. There are ways to do that. An official government commissioned document will be needed in time but I think there may be ways to get an unofficial document into an 'official' information stream, with the advantage that it would not be seen as competing with the official process.
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OK, that's no problem. I'll chat with you later, if that OK, today's Post Office Inquiry is about to start and, and then my carer is due to arrive. I want to see what legal aspects they're covering today. ,
 
Well that didn't quite work. :banghead:

This is what's missing from my attempt at multiquoting.

Maeve was definitely in my thoughts as i was completing my rsearch on this, as were the two young ladies currently in hospital.

In the Supreme Court today is a hearing involving this case. Father dragged away from ill child's bedside - BBC News

This man and his wife are both doctors, he's a consultant. There is another similar case and both have been joined together to be heard at the Court to decide whether the Family Court Reporting Restriction on annonymity of the treating doctors can be lifted. There is a clash of human rights involved and a public health interest issue to be decided. This Consultant wants to effectively whistleblow on the attitudes and treatment he and his wife were subjected to in two separate hospital trusts. All our girls' - past and present - parents and families will relate, as will the majority of patients with ME/CFS. Decision won't be for a month or two, but worth watching.
 
Amw66 said:


Article in The Canary
https://www.thecanary.co/uk/analysis/2024/04/16/severe-me-carla-west-middlesex/

What on earth is going on ?
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I've just seen the news item on the Channel 5 news on Carla's situation.

This should be reported immediately to the CQC as a serious breach of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 by the Trust.

Ignoring the NICE Guideline on ME/CFS with the specific disabilities listed is evidence of failure to take all reasonable steps to comply and act with all due diligence. When this results avoidable harm or significant risk of harm it is a notifiable event. The CQC can bring a criminal prosecution against the Trust.

I know the psychiatric profession believe they are the only profession who do not have 'never events', but the UNCRD knows that such a delusion is not true. This is a 'never event'.

Offences - Care Quality Commission (cqc.org.uk)
 
11. Need for consent: care and treatment may only be provided with consent.

12. Safe care and treatment: care and treatment must be provided safely.

13. Safeguarding service users from abuse and improper treatment: sections 13(1) to 13(4).

14. Meeting nutritional and hydration needs: service users' nutritional and hydration needs must be met. This applies where accommodation or an overnight stay on the premises is provided or where meeting a person's nutritional or hydration needs is part of the care and treatment arrangements.
 
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