ME/CFS services in the United Kingdom

job ad

https://www.jobs.nhs.uk/xi/search_vacancy/?action=search&master_id=127294

 

Thanks for heads up on this!

 

I think that this job stuff is important to keep an eye on as it does provide insight as to where services are heading when you read the detail of the descriptions. However, for a few of these links I click through to a page with lots of listings/more of a search page - which will disappear with time. For posterity would it be worth pasting the text along with the direct link to the actual JD doc within the ad itself (which is less likely to disappear)? We can also use bold or something for any relevant parts as I know some are a bit wordy

 

I've had a situation with a different consultant where appts a number of years apart it was /quite different/like a different person, not picking up from where it left off. Don't know how much to include but often wondered what was going on behind the scenes re: these kinds of things.

 

With my Suffolk Youth & Parent Support Group hat on, as a NICE stakeholder for LocalME and now involved in drafting Pathway for ME NICE Service Implementation for Suffolk and N E Essex NHS Alliance and Integrated Care Services.,
I am most concerned about Children's Rights to Education and Education and Health Care Plans( EHCP) ,(SEND) and Fii matters/ Social Care Multy Agency Safeguarding Hubs inappropriate interventions/ (as well as 'rehabilitation matters, MUS, FND and IAPT!!!!)


( Suffolk and N E Essex NHS Alliance has an MP Under Secretary for Health in Colchester) Will Quince,.
I and others locally are tacking the problem of getting the NICE message out to Local Authorities and Education including Alternative Education.

He is citing I only respond to constituents malarkey!

Ministers and Local Government Councillors need to understand their obligations and their responsibilities for those with ME, as they are failing to fulfill the law with ME medical cases spectacularly locally!

This was the thrust of my submissions throughout the NICE process 2017-2021.
This needs spelling out through the NICE GRIP and Implementation Process as well.


In 2018 and more recently, NICE started to address this in their forward planning and development, unbeknown to me and may others so I am writing up a resume. (see pdf to help frame the argument)


Not read this yet but needs looking at re Young adults up to age 25 CYP, children with moderate/severe ME

https://apcp.csp.org.uk/news/2022-0...children-young-people-25-severe-complex-needs
https://www.nice.org.uk/guidance/ng213
https://www.nice.org.uk/guidance/ng213/informationforpublic (easy read summary)


Perhaps Physios with ME might look at this and point out it's relevance to CYP? with ME?

 

.....By the end of this assessment, a plan will be made based on the goals you would like to work towards. This may include further appointments within the ME/CFS service, ........'


Hummmm...goal setting...I don't think so!!!!..
same as ,'targets' in Education and Health Care Plans EHCP..

Non compliance with NICE?
Denial of reality of ME?
Denial of possibility of harms?

So damaging an approach to morale to be measured against something possibly dangerous at best, counter intuitive and unattainable.....

How about, ' making sure you operate within safe, sensible energy levels?'
Reward enough to attain stability and no exaccerbation of symptoms.

 

job ad Cornwall NHS

https://www.nhsjobs.com/job/UK/Corn..._TherapistAllied_Health_Professional-v4207059

 

So Cornwall must be no longer part of England, and therefore not covered by the NICE ME guidelines?

 

Didn't the person running the service change in the last few years? If so I'd assume they got in someone who has no idea what they are doing and are ignorant. What is happening? Is it just deliberate subversion? the CFs/ME is even new to them so I suspect so - and that should be enough to lead to them being sacked of the position and let someone new in.

Is this a blueprint of exactly who shouldn't be near patients?

I find this frankly unforgivable and beyond unkind

 

well they're calling it graded activity not exercise, what more do you want? Surely that's all thats needed, just change the word and carry on as before

 

Peter on here, who was asking about 25% stat?

 

I've been trying to find a thread to post this on, it's UK-centric, but seems at least generally relevant to this, as you can easily tell this will be applied on ME and may leave many without any GP support. Haven't seen it and seems really significant to pwME in the UK.

https://twitter.com/user/status/1528673377849954305

 

considering i avoid doctors like the plague i do not think they could de register me on the basis of overuse .I have no idea about the actual number of m e patients who still have any tolerance for false sympathy from eye rolling medical professionals who have clearly avoided any kind of further education in m e or other post viral illnesses .

 

When I saw this I thought "I'm next"! But I read it properly and it has to be extreme, which is also the case in terms of any abusive type behaviour in which cases they have to register incidents with the police in order to also bar a patient. Rules for barring one for unrealistic expectations will equally need strong justification.

That said, I'm not sure the rules did or will get in the way if a surgery wants to bar you. My mum got barred from my GP surgery when I was 13 for arguing with a doctor, who belittled the fact that I had an infection in my foot and couldn't walk for six weeks, GP didn't want to fast track me for a very minor procedure. "Well it's not cancer" she said. Mum was very assertive, and cross, but didn't shout and wasnt abusive in any way. They just barred her but they didn't bar me (how strange?). Then another GP at the same surgery offered to do the procedure the next week for me and said he didn't agree with the decision.

I wonder where people stand if they have with severe mental illness or just straight up distress caused by lack of adequate support or iatrogenic harm, and they become "unreasonably demanding". I was seriously distressed last year and sought help repeatedly for my mental health, which they were slow to grant, then when I finally had a psych assessment they were dragging their feet for weeks on the prescription that I really urgently needed. I was demanding, angry distressed, and they didn't like it, and I'm not even somebody who suffers from severe mental illness or learning disabilities...I dread to think how they are treated!!

 

I have DM’d Peter, via Twitter, to alert him

 

Any rules based system that isn't properly policed will always impact most heavily on the most vulnerable but we have see this in the context of what is happening in the UK where almost every system of social and health support is under immense pressure with the inevitable result that the good folks at the coal face are getting the force of the public's dissatisfaction directed at them. This isn't just about Doctors, it's the support staff, the nurses, therapists etc as well who are getting abuse and threats on a daily basis.

 

I guess that's why the rules are being clarified, and updated. Clearly abuse is never acceptable, * and * (not 'but') power dynamics need to be carefully considered where subjective judgements can lead to reduced access to services


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