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

I received a reply from my MP today:

 

Now this I do know - letters and opinion pieces (op/ed or columns) are just reasonably held opinion - and are presented as such. They are not “news”.
There is really no way of arguing back at a “newspaper” that the information presented is incorrect if it is the opinion of the writer. Well, you can argue but they don’t have to listen or do anything.

 

Yes exatly, but collectively we've all had to learn this stuff over the decades. How many of the public or GPs untrained in ME, Care Workers, Social Services etc who read this will? The parts of society who impact our daily existence. It looks very much like a strategy for themselves rather than concern for this illness group, but that's just my opinion.

Hence the start of the chronology today, (which I was going to have to do some time), to provide context for the specific years involved in the published reviews referred to earlier in this thread.

 

The delayed ME/CFS consultation summary of responses, and to the Plan itself, and this letter in response to George Monbiot's article reminded me of the delay the publication of the NICE Guideline in 2021 and this situation

Public Letter to RCPCH: DwME Associate and Neurodisability Paediatrician Dr. Ben Marsh calls for explanation - Doctors with M.E.

What the Royal Colleges etc did to constantly delay the revision and publication of the NICE Guideline is being repeated again in this cross party delivery plan.

They've done it before and they're doing it again, and again.

 

Well, that’s the whole model of newspapers, I wish the public understood that they’re not much better than a printed social media account, and never have been.

 

Posted by the ME Association this morning.

Long Covid health workers pushing for trial date | Nursing Times

 

All reports by the Health Services Safety Investigations Body (HSSIB) and it's predecessor can be accessed and are publicly available.

For example, this one published September 2024 titled
Recommendations but no action: improving the effectiveness of quality and safety recommendations in healthcare
Recommendations but no action

The Health Services Safety Investigations Body has just issued a new report which has been reported on today, but it is not yet available on the HSSIB website. Today's media report Mental health hospitals ‘re-traumatising patients’, charity warns

My bold

 

Yeah this is why they wrote it as a letter, which aren't fact-checked. They cite themselves from a letter they wrote themselves. As examples of disagreement. About their own work. Which they mostly self-reference with one another. Bearing giant reputational and financial conflicts of interest, which aren't declared. This is the opposite of real journalism.

Same thing that happened during the information tribunal over PACE trial data. They made accusations for years of horrible threatening behavior, and asked by a tribunal they admitted there is nothing to back it up. Most likely they do have some, they just don't support the claims of dangerous radicals they have made to malign us all. They only succeed when they are lie to lie and cheat. In a formal process nothing they claim stands up.

 

Working draft chronology has been updated.

 

In the same way that I looked back at the Judicial Review 2009 mentioned earlier in this thread, I am now in the process of taking a further look at the case of Page v Smith [1995] UKHL 7 (11 May 1995). This was a case involving a person with CFS involved in a motor accident in 1987. It was taken to the House of Lords on Appeal which resulted in this decision. I can't do better than Valerie Eliot Smith's summary for the layman Page v Smith explained | valerieeliotsmith.

The House of Lords was replaced by the Supreme Court in 2009. This case was decided some years before the UK Human Rights Act 1998 which came into force in 2000.

I may be some time, while I await a response to my complaint.

 

As it’s the end of Black History Month, I decided to check out its representation in Parliament as there is usually a debate. This may not appear immediately relevant to some, but for me it has personal relevance.

There is a Minister for Women and Equalities and has been for a while.

Minister for Women and Equalities - GOV.UK

There was a House of Commons debate on 24 October 2024. Black History Month - Hansard - UK Parliament A very interesting read, I thought.

Minister of State for Equalities Seema Malhotra MP, when on the opposition benches earlier in the year tabled a number of questions of the Secretary of State for Health which can be found here https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-33#post-528836

Contribution from the Minister of Equalities (Seema Malhatra) in the debate:

A New Equalities, Race and Disability Bill is being worked on by the Government.

Imagine what it is like as a young woman in hospital with this illness from an ethnic minority background.

Now imagine that’s a young man from an ethnic minority.

ETA: Referencing the Government's PSED to PROMOTE equality please specifically take note of this suggestion of where research needs to go next when considering this area of the ME/CFS Delivery Plan, prior to publication. https://www.s4me.info/threads/ignor...he-conversation-2024.40762/page-3#post-562773

 

I shall now be including NHSE and it's arm's length bodies when seeking specialist legal advice.