UK: Official Complaint Lodged with the DHSC re: Discrimination in the ME/CFS Delivery Plan Process

Copied post from Maeve Boothby O'Neill - articles about her life, death and inquest | Page 89 | Science for ME (s4me.info)

I've just popped in from a six month absence due to severe PEM to let you all know that I have written to my MP. Wasn't sure where to post it, as it covers the missing report summarising the responses from the My Reality consultation a year ago, the Coroner's Regulation 28 Prevention of future deaths report and questions to be raised on my behalf to the Secretary of State for Health in the House of Commons. So I decided to post it in this thread out of respect for Maeve Boothby-O'Neill.

Here is the content of my letter to my MP mailed this evening:

 

I have today filed an official complaint with the DHSC as follows:

It is a three stage complaints procedure, each lasting 20 days and being capable of escalation at each stage if unhappy with the response. This should conclude at the end of the first week in December.

Complaints procedure - Department of Health and Social Care - GOV.UK (www.gov.uk)


If, still dissatisfied, the final stage is to request my MP to escalate the matter to the Parliamentary and Health Service Ombudsman.

Complain for change: helping you make your complaint | Parliamentary and Health Service Ombudsman (PHSO)


Obviously, I am currently too ill to pursue this without consequence to my health and quality of life. This impact is well known to the Department, even before a patient is forced to initiate any complaint in order to enforce their rights.


Formal legal redress following completion of this process remains available regardless of the outcome of this complaint procedure, and in any event, as a result of the additional harm suffered following an intentional breach of the Equality Act 2010 and the Human Rights Act 1998.

 

Well done. Ithink we could have just started an ECHR case on the simple fact there are no NHS services to care for Severe ME as stated by Dr Helmsley.

 

... and so it begins.

 

Whilst we are still signatories .

 

Can you take a case ECHR, or do you have to go through the British courts first?

 

No idea what the route is butI’d have thought you can’t just say “well, we don’t have any provision (or any beds in the NHS anywhere) for x group of disabled people but we do for everyone else” It’s very clear that it disadvantages pw severe ME

 

I'm no expert in law, last I worked in the law was 26 years ago. Which is why I shall be taking legal advice after receipt of the first stage response to the complaint, ie end of October/Nov. This was all the research I did at the beginning of this year which caused my massive crash, which I'm still in.

My plan is then to lay out the advice received and various legal options available for discussion here. There are a number of them, including the route to public Inquiry.

I shall also post the responses from the DHSC for discussion as and when received before each next step.

The quickest is a Judicial Review and which is legally aided. Think publication of the NICE Guideline. This is almost exactly the same situation.

Once you realise that, everything becomes clear.

 

I would double check that Judicial Review, ' is publically aided'. I.e. legal Aid?

It was but things changed in 2015 2016.
I took a JR to court in 2016 (Planning) .

Only funding support was by way of a Protective Cost Order which Government solicitor tried to block!

Took into account my son's DLA & ESA benefit to family and husband's carers coffers and allowance....as my 'family' income!!!!!

We persisted in challenging and got it. But at double liability of £10,000....

 

Judicial Review tests.....

'There has been criticism of the extreme formulations of the test but it remains the case that it is difficult to bring a successful judicial review on the basis of irrationality or unreasonableness.'

 

I'm glad you persisted.

Discrimination cases are, in fact, human rights breaches deriving originally from human rights legislation.

Where that discrimination is against the disabled it also contravenes the UN Convention on rights of disabled persons.

As such, are considered on a different level of seriousness, for which legal aid is currently available, albeit means tested, as you experienced.

https://www.gov.uk/legal-aid

From the complaint:

Direct discrimination is unlawful per se:

"6. Due to the protected disability characteristics of ME/CFS patients, it is unnecessary in this case of discrimination to provide a “comparator”. ....​

However, I have applied a belt and braces approach to evidence gathering:

...."Nevertheless, for emphasis, a comparator taking place at the time this process was announced in Parliament, was just concluding called the “Womens Health Strategy for England” consultation and policy document 2021/2022 – details set out in the letter emailed to my MP dated 7 October 2024.”
​

I cannot see any defence against it, but that's for the specialist lawyers I've picked to advise on.

However, I'm fully prepared for the strength of push back we usually get.

 

I am so glad you too persist!
JR- It's a minefield !
I have sat through 3 .....
The Doug Kev challenge to NICE
My friends against Government, she won in 2008 on Public Health risks to residents from crop spraying....
But it got overturned by some behind rhe scenes manipulation....
No clear path or certainty at all.

My case was Local Authority errors in law.
Told by Judge I was right, but not right enough for reversal of Planning Inspector's decision .
So we lost.

 

Good luck!

 

For Information

I should probably say before going further, that nothing in this thread constitutes any form of legal advice/opinion. All posts are for general discussion purposes only and to enable members to follow the progress and contribute towards the outcome of the complaint.

If I receive advice suggesting a legal course of action of some description is available, I shall create a new thread for it.

For the present at least, in the initial stage of obtaining advice on the options, I’m flying solo with the complaint. In a similar way that Alem Matthees’ simple FOI turned into his legal battle.

When it comes to pursuing any legal action outside of the complaint, it may be the case that a few claimants would be sought to represent a spectrum of representative patients as was the case in the 2009 Judicial Review, or a larger number of patients as part of a group litigation, or the entire illness group in a Statutory Public Inquiry. It is often gruelling and take years.

I have to say that complaints that the NHS is on it’s knees, other priorities etc., is falling on deaf ears as far as I am concerned.

That’s where this illness, and human beings who suffer it, have been placed for 55 years.

 

1 of 3 posts


Now that’s out of the way, sorry for the delay in replying.


Yes, Judicial Review is a freaking nightmare and figures I’ve seen estimate that only about 50% are successful. My attitude is that this represents pretty good odds in anything to do with ME/CFS from the patient perspective!

The 2009 Judicial Review of the 2007 NICE Guideline clearly did not go well, resulting in the Judgment it did. It was brought on the grounds of

1. Irrationality

2. Bias appointment to the CGC and conflict of interest, which was added later by the Claimants solicitors. This late addition may have been because numerous expert evidence from Claimants experts on the biomedical argument of aetiology, and the effect such treatment would and does have on patients, thereby arguing why harm would be likely to occur in properly diagnosed patients, was excluded.


It did not:

1. include specific reference to any human rights breaches, in respect of the Human Rights Act 1998 and related case law up to 2007, nor

2. deal with the issue of newly diagnosed patients and the very real risk of lack of informed consent on the question of harm which may result from the NICE Guideline treatment in 2007, which appeared to be informed by the ongoing PACE trial at the time, and the York Review.

I don’t have access to a transcript of the hearing, and I have limited information regarding previous hearings on the evidence allowed and reasons for exclusion of numerous other statements (mainly many of the Claimants experts). So, my comments are limited in that regard.

That said, in particular, I haven’t seen any reference at all to Patient Safety as specifically set out by the World Health Organization in 2004.

‘Patients for Patient Safety’ produced by the World Health Organization 2013 refers:


https://cdn.who.int/media/docs/default-source/patient-safety/pfps/pfps_brochure_2013.pdf

Certainly, in 2007 and 2009 the Royal Colleges would surely have not been unaware of the WHO Resolution and initiative of 2004, or the World Alliance for Patient Safety.

Yet the Judge makes no reference to it at all. He does make reference to part of Tanya Harrison’s resignation letter, and a passing reference to the Claimants specific concerns on this point. This makes me question whether it was brought to his attention by the experts whose statements were allowed.

It is not the function of a Judge in a Judicial Review to adjudicate disputed science or etiology and they rely on experts to advise.

In the 2009 Judicial Review Mr Justice Simon stated:

In the Introduction:

No significant change there then, despite the revised Guideline.

Well you’d think so, wouldn’t you?

Under the heading ‘Chronology’:

I think, apart from the science, research funding, education and public awareness, this remains one of the core problems in the sphere of attitudes. They have to LISTEN to the patient voice but many don’t really want to bother.


This 2022 commentary from Mark Vink and A Vink-Niese highlights something, which turned out to be critical in terms of evidence not placed before the 2009 Judicial Review:

Vink, M.; Vink-Niese, A. The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS. Healthcare 2022, 10, 898. https://doi.org/10.3390/healthcare10050898

Edited to disentangle comment from quote

 

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A potential Judicial Review brought on the grounds of breach of the public sector equality duty (PSED) resulting in disability discrimination, with substantial complaints concerning the added lack of informed consent, which in my case has led to substantial and long-term harm is a different beast altogether.

To show you what I mean here is an overview of the human rights legislation and case law developing it further using an overview prepared in 2019 by a, then, QC at Garden Court Chambers. Leading public law barristers | Garden Court Chambers | London, UK

Although the document is titled ‘Compensating discriminatory acts: public law claims under the Equality Act 2010 and Article 14 ECHR’, the compensation referred to is not monetary.

While we’re on the subject, the ‘secondary gain’ (that we have been unjustly accused of in the past) in this case is the restoration and protection of human rights.

1625050118-compensating_di.pdf (gardencourtchambers.co.uk)

Although a long read, it sets out in plain English the various duties and case law up to 2019 as applied in the example given. The legal basics however apply to any situation of discrimination. In the five years since this was written there will be a number of other cases which will have clarified the law further.


A snippet

 

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It’s worth emphasising that human rights have to be observed and applied across ALL public sector bodies and society at large.

This is the NHS Constitution (updated 17 August 2023) The NHS Constitution for England - GOV.UK (www.gov.uk)


Extracts :

There is the matter of discrimination over the last 20 years, at least, in not granting biomedical research applications which needs to be acknowledged and addressed! The Chief Medical Officer’s Report 2001 evidenced the need for biomedical research. What was funded was, of course, the PACE trial.


The £3.2m MRC funded DecodeME study begun in 2022 (if I remember rightly), whilst long overdue, cannot be said to equate in value to the £5m PACE trial begun in 2005.


That is just principle 1. There are many similar examples throughout the Constitution where we have potential claims all of which I shall also be seeking legal advice on.

 

Watching with interest - not a lawyer but more comfortable with all things “law” than Science!

 

Question raised in the House of Commons today

https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-34#post-559872

Ben Spencer Shadow Minister (Health and Social Care)
To ask the Secretary of State for Health and Social Care, whether he has had recent discussions with the National Institute for Health and Care Research on support for research into (a) care and (b) treatment for people with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

 

There’s the problem with using me/cfs

we want it to work by staying as an acronym like MS or CJD isn’t spelled out

but it isn’t operating like that

and the slash is even being interpreted by the person saying it as and, or, slash and numerous other freedoms like changing the order

the first thing if we are to get any use for the real illness from the guideline is Nice to enforce all have to say me/cfs like me cfs. In that order. And will beggars playing games have to stop playing antagonist with the ‘I don’t know what that is ‘ lie to force you to eventually say chronic fatigue syndrome. It’s plain obvious mind games (motivational interviewing or whatever technique).

that the number one jn attitude change. It needs some telling off.

then we’ve got to be brave enough to put a description of the PEM cycle and deterioration from this cumulatively happening as what THIS illness is

then state we’ve a massive problem because clinics seem to try and offer treatments that harm this on the basis of claims for ‘anything but’ this illness that can be defined by not operating like anyone would expect normal ‘fatigue’ to.

you couldn’t force a fatigued healthy person to overdo it or do their bs self-help cruddy things like sleep hygiene and ‘control your boom and bust please’ to the point of near death. This is particular to both the illness me/cfs and the terrible approach and attitude they’ve had levied at them as a hostile environment for reasons not due to them .

it’s like a clinic supposed to treat psoriasis (isn’t it ‘too much skin’ ie it not sloughing off enough) instead excluding harming then making unsafe by labelling as mad those with psoriasis by only offering shades of grey on skin hydration self help and doing a speak to the hand not the face when putting on moisturiser regularly doesn’t work assuming they are lying about keeping up the routine .

Then when pulled up on it finally instead focusing on changing the measures to silence real patients do they are ONLY now allowed to tick boxes that relate to moisturising dry skin and symptoms that are only fir dry skin and itchiness due to that up not anything happening in the form of psoriasis so de exists it. And forces any psoriasis patient to tick the ‘half applies’ boxes describing an ezcema itch.

because they’d been allowed for it to be called psoriasis/dry skin in an answer on both, the combined, or either or ie make the question what you want. So the slash allowing gif people to answer a question fir psoriasis patients only as if it had been asked fir ‘dry skin’


All of this is allowing each plan or PROMS or clinic to choose which question / illness they want to answer about ‘from the long list of choices to do with ME or/and/slash CFS’ as they reframe which disease they fancy meaning

it isn’t working yet without discipline for the term and that’s an issue for accountability