UK: Royal Devon University Healthcare Trust: Planned and unplanned admission process for severe or very severe adult ME patients - clinical guidance

"The purpose of this paper is to provide guiding principles to support patients with severe or very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) accessing emergency medical care or a planned admission to an acute Royal Devon University Healthcare NHS Foundation Trust (RDUH) setting. This guidance covers the Royal Devon and Exeter Hospital (Wonford, Exeter) and North Devon District Hospital (Barnstaple). "

Direct link to PDF, https://www.royaldevon.nhs.uk/media...-me-patients-clinical-guidance-v1-0-b-007.pdf

Linked to from https://www.royaldevon.nhs.uk/services/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs/

 

It doesn't seem say any more than the NICE Guideline - try and reduce noise etc.
There is no mention of how to manage nutritional failure as far as I can see.

 

It makes several references to the local Community based ME/CFS service which is provided by OTs. Does anyone know how good this is?

 

There seems to be no plan for a physician led service.
It refers to

• Admitting Consultant (will depend on reason for admission/ward
  
  identified for potential admission)
  
  
  The assumption seems to be that admissions will not be related to ME/CFS itself or require a physician with special expertise in ME/CFS.
  
  The amazing local plan we were told about seems to have evaporated completely.

 

I thought that it was fairly good, apart from a few small errors, e.g.

"4.7.2...The Community-based ME/CSF Service"

I wonder whether Plymouth (Derriford Hospital) has anything similar - it's where I have been sent a few times, and where apart from one nurse no one seemed to be familiar with ME.

I'm trying to get through posts at the moment so can't check.

 

Well, I've had a quickish look for what Derriford say, and am not impressed.

Derriford Hospital says on https://www.plymouthhospitals.nhs.u...tis-chronic-fatigue-syndromepdf.pdf?ver=22330 in reply to a Freedom of Information Act question:

"Has University Hospitals Plymouth NHS Trust implemented the NICE
guidelines [NG206] on Myalgic Encephalomyelitis/ Chronic Fatigue
Syndrome: diagnosis and management, which were published on 29
October 2021? If the NICE guidelines [NG206] on the diagnosis and
management of ME/CFS have not been implemented, what is the
intended timetable and deadline for implementation?"

Adult services

No; this guidance is not applicable to our organisation as we do not provide
ME/CFS Specialist Services. This service is managed by Sentinel Healthcare
CIC.

https://www.sentinelhealthcare.co.uk/sentinel-healthcare/nhs-services/chonic-fatigue-syndrome/

https://southwest.devonformularygui...n-management/plymouth-chronic-fatigue-service

The Sentinel page says:

"The specialist ME/CFS service is available 3 days per week from Monday to Wednesday, covering the West Devon area. We are a small team consisting of a part-time Administrator, two Medics working 6 hours per month in total, and two part-time therapy staff.

It is for this reason we are unable to keep patients within the service long-term. Instead we are able to offer patients a set number of hourly telephone consultations, providing energy management advice, with the provision of written resources for future guidance following discharge. These sessions are designed to provide an individualised, person-centred programme that aims to support personal goals based on the patient’s preferences and priorities."

I can't see how seriously-ill patients will be able to manage an hour-long phone call. In fact, although I am only mild-moderate, I couldn't manage that. And what happens on the other 4 days?

At least they say "Graded exercise programmes are no longer recommended."

 

I wonder how sentinel feel about the responsibility for keeping alive and monitoring all me/cfs patients in the area - whatever their needs without any hospital to send them to if procedures or emergency care needed

 

I just had a quick skim for the need of many PwME to lie flat and couldn't see anything. This is the thing I always have to fight for in any hospital appointment. I note the guidance is 13 pages long - longer than the MEA document that we thought would be so useless because of its sheer length.

 

I think this is a an area where S4ME could usefully contribute something better.

 

I agree. I have obviously put some thoughts into Qeios articles with a different purpose and format but I think it would be a nice idea to try to produce a succinct proposal for hospital needs from the forum. As much as anything it needs to be free of all the usual professional platitudes that constitute most of these documents.

 

Great! There is such a need for this. How do you think we should move forward on it? We recently had a discussion on the forum about the lack of progress on the Larun review situation and a small working group produced a letter that was then voted on by the forum and sent as being from S4ME. Would that be an appropriate model (discussion --> working group --> forum approval) or do you have something else in mind?

 

Yes, I think a discussion thread would be useful for generating lots of ideas and relevant references/materials, but it would need a smaller group to collate and condense into something useful.

Would there need to be a fuller review or background information piece for policy makers and those interested in more detail and something very much more concise for admitting hospitals and patients/advocates?

A big problem would be having something that is sensible on the basis of our current level of ignorance along the lines of @Jonathan Edwards ’ Qeios article being acceptable to medics who are unable to step back from their current beliefs. Would it need to be endorsed by the ME charities or would we find some means of patient endorsement beyond a poll here?

 

@Jonathan Edwards, would you like to start a new thread, if you're interested in being part of taking this forward? I'd start one myself but if you do it, I think it will get more attention!

 

I am not very well placed to start a thread just at the moment, with other things in the in-tray.

What I think needs a decision is the scope of this. If it is just advice on how to minimise problems for people with ME/CFS when they come in to hospital for any reason then NICE probably covers that.

I was expecting something a bit different from Devon and Exeter - a protocol for what to do about very severe ME/CFS itself. That is what the coroner said was missing. It would involve feeding support but very much bound in with the other issues about environmental stimuli, as threats to achieving necessary support.

You might say that just the environmental issues should be tackled but I have a suspicion the response will simply be that the resources aren't there to be so accommodating. If it is pointed out that this is not something negotiable in very severe cases and can impact survival fobbing it off is a bit more difficult.

 

Those resources can sometimes be mobilised in the care of very frail elderly people and babies. It doesn't always happen, and they may die or be harmed as a result. But when the system's working, staff put in the effort because it's so obvious those patients have significant extra care needs.

It's no less obvious that very severe ME/CFS is in a similar category, if you've seen it for yourself or been educated about it. I don't know the best way to get this across.

 

My sense is that the only way to get it across is to point out in the same document that people like Maeve die if it isn't sorted.

 

Little information on eating and nutrition. That's shocking given Maeve's case and outcome from her inquest.

Also absent is capacity assessment, why and when and how to go about this sensitively and appropriately given the patients level of debility. And when it is clearly not appropriate to assume lack.of capacity. I think this is not covered by NICE and could be an enormous extra strain on patient and family under already straining circumstances.

It's baffling these two areas are not clear. It reads like purposeful avoidance. Not helpful. These areas can cause a lot of unnecessary distress and stress. They cause patients harm.

 

Fair enough! You are already doing a ton of stuff.

Good point about scope. I had been thinking about something that those of us who struggle with hospitals could clutch in our paws if we went into hospital in an emergency but actually maybe there are several levels of this.

I'm not suggesting that we do all of these, but do we need:

• A document to persuade our GPs to put something on our notes so that when we go into hospital and ask to lie on a couch instead of sit in the waiting room, that will get taken seriously.
• A document for a planned hospital consultation.
• A document for an unplanned trip to A&E.
• A document about how to deal with people with severe ME/CFS (in hospital, or generally?).

And if we need all of these but can only do one or two, which do we pick? I'd say that saving lives comes first, but that a document for any of the other things could be a quick job.

Here are the latest NICE guidelines (October 2021). At first glance, I don't think they're helpful in that form and I'm not sure that they cover some crucial things that need covering. I'd like to read them properly before I say much else about that.

Incidentally, the terminology is awkward. You'd think that those of us who are housebound and for whom hospital visits are very difficult would be considered 'severe' and that those who are really not functioning would be 'very severe', but that's not the case and maybe conveys to doctors that those not classed as 'severe' don't really have access problems that hospitals need to think about.

 

Absolutely!
It's OT therapy based business as usual..
I bet Dr Anthony Hemsley is sick to his stomach.
I have my notes from his Coroner's session.
I will upload what I noted. It's in a list.