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

[MrMagoo]

I think the document tries to pinpoint a role who has responsibility for the patient, more than what treatment the patient should receive.
They don’t want to put in writing that they should use a 5% incline for feeding, for example.
It’s like they can’t say what to do, but a couple of special roles have the secret knowledge and can (probably? Who knows) be relied on to do the right thing because they’ve been verbally told what the process is.

 

[Sasha]

PwME as in-patients

This, from Section 1.17, 'Care for people with severe or very severe ME/CFS' seems to be the key bit in the NICE guidelines about what to do about PwME going into hospital as an in-patient. It seems to rely heavily on a 'care and support plan'. I don't know whether a very severe PwME would have such a thing, since they seem to come from the fatigue clinics, who presumably never see such patients, but maybe they can also come from other sources - I don't know. This doesn't look great to me.

Hospital care
1.17.7
When planning hospital care for people with severe or very severe ME/CFS:

• discuss with the person (and their family or carers, as appropriate) what to expect when they come into hospital
• aim to minimise discomfort and post-exertional malaise during transfer to hospital, for example by planning the route in advance, avoiding noisy areas and admitting them straight to the ward on arrival
• discuss the person's care and support plan with them, including information on comorbidities, intolerances and sensitivities, to plan any reasonable adjustments that are needed
• aim to provide a single room if possible

keep stimuli to a minimum, for example by:

• seeing them one-to-one
• using calm movements and gestures
• not duplicating assessments
• being cautious about the pressure of touch
• keeping lights dimmed
• reducing sound
• keeping a stable temperature
• minimising smells.

 

[Sasha]

PwME as out-patients

I couldn't find anything on how to deal with severely ill PwME as out-patients in the NICE guidelines. I've been unable to access care for non-ME issues because of the NHS's failure to adapt to what I need. For example, I couldn't attend a unit that has every patient show up at 8am and stay there most of the day until the process of investigation and treatment is finished, because I'd have ended up on the floor; and I had to leave another clinic because they were running so late that I'd exhausted myself in the waiting room by sitting upright, and they refused to be flexible by moving me up the list because God forbid that the only patient in the room who is too sick to wait any longer is allowed to queue-jump. Just dealing with the waiting is an absolute killer if you have OI, and the staff have usually never heard of it.

[Edited to add]Also, nothing about how housebound PwME can access consultant care if more needs to be done than just talking.

 

[Nightsong]

I couldn't find anything on how to deal with severely ill PwME as out-patients in the NICE guidelines. I've been unable to access care for non-ME issues because of the NHS's failure to adapt to what I need.

Section 1.8 ("Access to care and support", p95+):

1.8.1 Health and social care organisations should ensure that people with ME/CFS can use their services by:
• adapting the timing, length and frequency of all appointments to the person's needs
• taking into account physical accessibility, such as how far the person has to travel, whether there is suitable transport and parking, and where rooms are for appointments
• taking into account sensitivities to light, sound, touch, pain, temperature extremes or smells
• providing care flexibly to the person's needs, such as by online or phone consultations or making home visits.
1.8.2 If a person with ME/CFS misses an appointment:
• do not discharge them for not attending because it could be due to their symptoms worsening
• discuss why they could not attend and how the multidisciplinary team can support them.
1.8.3 Be aware that people with ME/CFS are unlikely to be seen at their worst because:
• debilitating symptoms or the risk that their symptoms will worsen may prevent people from leaving their home
• cognitive difficulties may often mean people wait until they feel they can speak and explain clearly before contacting services

 

[Sasha]

Section 1.8 ("Access to care and support", p95+):

1.8.1 Health and social care organisations should ensure that people with ME/CFS can use their services by:
• adapting the timing, length and frequency of all appointments to the person's needs
• taking into account physical accessibility, such as how far the person has to travel, whether there is suitable transport and parking, and where rooms are for appointments
• taking into account sensitivities to light, sound, touch, pain, temperature extremes or smells
• providing care flexibly to the person's needs, such as by online or phone consultations or making home visits.
1.8.2 If a person with ME/CFS misses an appointment:
• do not discharge them for not attending because it could be due to their symptoms worsening
• discuss why they could not attend and how the multidisciplinary team can support them.
1.8.3 Be aware that people with ME/CFS are unlikely to be seen at their worst because:
• debilitating symptoms or the risk that their symptoms will worsen may prevent people from leaving their home
• cognitive difficulties may often mean people wait until they feel they can speak and explain clearly before contacting services

Thanks, @Nightsong.

I wish any of that addressed the issues of PwME who need to lie flat! Or even that the key bits actually happened.

 

[Sasha]

Section 1.8 ("Access to care and support", p95+):

1.8.1 Health and social care organisations should ensure that people with ME/CFS can use their services by:
• adapting the timing, length and frequency of all appointments to the person's needs
• taking into account physical accessibility, such as how far the person has to travel, whether there is suitable transport and parking, and where rooms are for appointments
• taking into account sensitivities to light, sound, touch, pain, temperature extremes or smells
• providing care flexibly to the person's needs, such as by online or phone consultations or making home visits.
1.8.2 If a person with ME/CFS misses an appointment:
• do not discharge them for not attending because it could be due to their symptoms worsening
• discuss why they could not attend and how the multidisciplinary team can support them.
1.8.3 Be aware that people with ME/CFS are unlikely to be seen at their worst because:
• debilitating symptoms or the risk that their symptoms will worsen may prevent people from leaving their home
• cognitive difficulties may often mean people wait until they feel they can speak and explain clearly before contacting services

In fact, I wonder how even these inadequate guidelines are meant to be activated if a PwME need to go to a hospital department. Is the PwME supposed to flag up that there are NICE guidelines that should be applied? What if the department then says they can't make any adaptations?

 

[MrMagoo]

In fact, I wonder how even these inadequate guidelines are meant to be activated if a PwME need to go to a hospital department. Is the PwME supposed to flag up that there are NICE guidelines that should be applied? What if the department then says they can't make any adaptations?

Yes I think this is important. I’d like to see a dramatisation or under cover film of”what actually happens”

Even a flow chart (excuses map)

“discuss your care and support plan” > don’t have one > produced by MECFS service > cannot access service as do not provide services to severe ME

“try to make adaptations” we can’t let people skip the queue > requesting in line with NICE > it’s a guideline we don’t have to follow it >request for reasonable adjustment > we make lots of adjustments for disabled ppl we have letters in braille, everyone here has to wait, even that man in the wheelchair

 

[Lou B Lou]

Not sure if this is the right thread as this is not about hospital admissions/stays, but is part of the Royal Devon Guide for ME - though in the guide they call it chronic fatigue.

chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.royaldevon.nhs.uk/media/texncszo/5-session-2-the-foundations-of-activity-management.pdf

Session 2: The Foundations of Activity Management




https://twitter.com/user/status/1867981084300099839



Tweet KatyB
"There are many dangerous mistakes & assumptions in the Royal Devon & Exeter's #ME guide 1 which stands out, in the jug metaphor they claim 'laughter & having fun' & 'enjoyable activities' improve 'energy supply' Who will be calling them out on this?"


https://twitter.com/user/status/1867982427697868878



Tweet Paul Keeble ME/LC:
"None of their "Improving Energy Supply" actually works other than rest and even that has "relaxation" which is not the same thing. Sleep doesn't work in ME/CFS, achieving things only costs energy and laughter and having fun is ridiculous. This is really messed up."



https://twitter.com/user/status/1868008229126713813


Tweet Penny #ME:
"Those things would only work if you didn’t have ME. If you do have ME they are often not possible or cause PEM. It suggests written by people conflating ME with stress depression or burnout."

.

 

[bobbler]

Not sure if this is the right thread as this is not about hospital admissions/stays, but is part of the Royal Devon Guide for ME - though in the guide they call it chronic fatigue.

chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.royaldevon.nhs.uk/media/texncszo/5-session-2-the-foundations-of-activity-management.pdf

Session 2: The Foundations of Activity Management




https://twitter.com/user/status/1867981084300099839



Tweet KatyB
"There are many dangerous mistakes & assumptions in the Royal Devon & Exeter's #ME guide 1 which stands out, in the jug metaphor they claim 'laughter & having fun' & 'enjoyable activities' improve 'energy supply' Who will be calling them out on this?"


https://twitter.com/user/status/1867982427697868878



Tweet Paul Keeble ME/LC:
"None of their "Improving Energy Supply" actually works other than rest and even that has "relaxation" which is not the same thing. Sleep doesn't work in ME/CFS, achieving things only costs energy and laughter and having fun is ridiculous. This is really messed up."



https://twitter.com/user/status/1868008229126713813


Tweet Penny #ME:
"Those things would only work if you didn’t have ME. If you do have ME they are often not possible or cause PEM. It suggests written by people conflating ME with stress depression or burnout."

.

Geez how can some people be so bone-headed when it comes to learning

I’m so fed up of this utter stupidity

 

[Suffolkres]

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.

List below.written up from my notes of Coroner's question and answer session September 27th which concluded the inquest proceedings, where Coroner Deborah Archer asked Dr Hemeley for the Royal Devon to develop a Pathway for her?
Is the 'Guide' released this week by them it??

PERSONAL NOTES
Critical Needs which Services should Address for ME and CFS Services to satisfy the Coroner's Regulation 28 Report and Recommendations following inquest of Maeve Boothby O’Neill in 2021

Date 27th September 2024 Exeter Coroner and Dr. A Hemsley
- Exchange between Exeter Coroner & Dr Anthony Hemsley
- Notes from Coroner’s questions, in the total absence of NHS England Guidance or interest to whom Coroner has written.



Answers given by Dr Anthony Hemsley. Medical Director of THE ROYAL DEVON UNIVERSITY HEALTHCARE NHS FOUNDATION TRUST Royal Devon University Healthcare NHS. Foundation Trust Eastern Services. Barrack Road. Exeter EX2 5DW.

Transcrpted from notes taken from session audio;

• Compare with other conditions; care and treatment options like for MS1.

• Protocol for those Severely affected or in acute need.

1. Personalised Care, closer to home
   
   
2. Do not underestimate lack of knowledge of clinicians re ME (Education & Training needs)
   
   
3. Domiciliary and patient treated and seen at home (overseen by specialist medically led MDT implied)
   
   
4. Training for ALL staff involved
   
   
5. Understanding of safe to safe training needed
   
   
6. Individualised Care & Support Plan
   
   
7. Bespoke plan and management
   
   
8. Bespoke nature may need to go outside common practice and outside policy
   
   
9. Care Planning : Hospital – Home specialist feeding
   
   
10. Care Coordinator (or Matron) for Safety?
    
    
11. Accept the complexity and difficulties to resolve - Use Red Flagging for at risk patients
    
    
12. Staff Education and Knowledge to be addressed, as well as attitudes and awareness
    
    
13. Specialist Services Provision - Feeding etc
    
    
14. Accept all patients’s complexity (comorbidity)
    
    
15. Hence Bespoke Needs and Care Plan
    
    
16. Code of Practice needed (developed by MDT)
    
    
17. National Pathway must be forthcoming and this will need systemic change
    
    
18. National Pathway BUT flexible bespoke to each patient
    
    
19. Good E Learning as NHS and recently developed is problematic
    
    
20. Good reliable data and Electronic Records

Footnote

1 The Conversation offers informed commentary and debate on the issues affecting our worldhttps://theconversation.com/ignored...he-origins-of-a-modern-medical-scandal-241149

Professor Chris Ponting Chair of Medical Bioinformatics and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Cancer. DecodeME - the world’s largest genetic study to understand ME/CFS.Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical ‘scandal’ Published: October 21, 2024

‘The extent of scientific disinterest in ME is clear: so far this year, there have been 17-times more publications mentioning “multiple sclerosis” than those mentioning ME or CFS, despite MS being rarer.’

 

[Suffolkres]

"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/

What is this CSF.... referred to In document linked to BACME?
British Association of Clinician in ME/CSF https://bacme.info/wp-content/uploads/2022/05/BACME-An-Introduction-toDysregulation-in-MECFS-1.pdf

 

[Jonathan Edwards]

What is this CSF.... referred to In document linked to BACME?

I can't see that.

 

[Jonathan Edwards]

List below.written up from my notes of Coroner's question and answer session September 27th which concluded the inquest proceedings, where Coroner Deborah Archer asked Dr Hemeley for the Royal Devon to develop a Pathway for her?
Is the 'Guide' released this week by them it??

So it is not just me confused it seems.
It looks as if this recent document is it. But then Hemsley's reply is also pretty vague and makes no reference to feeding support (or nothing specific). Nothing in either addresses the lack of support for very severe cases.

And yet Hemsley was supposed to have a specific protocol for such support, including IV saline infusions if I remember what I heard!

 

[Jonathan Edwards]

One thing that may be relevant is the suggestion that Hemsley was thinking in terms of a private contracted service for feeding support outside the NHS. But I cannot see how that is going to happen.

The reference to 'bespoke plans' going outside policy seems pretty peculiar. If you are devising a policy it will define its own limits. Maybe Hemsley's original plan rather unravelled?

 

[Sasha]

Nothing in @Suffolkres's list looks like an actual plan - it seems too top-level. It's like the 'concept of a plan'.

 

[Suffolkres]

How right you are...
A concept- something conceived in the mind : thought, notion
2 an abstract or 'generic idea generalized from particular instances',
which are surely, principally;

• demonstrated need
• safety
• access
• equality
• legal entitlement

Plus since 2014 Health & Care Act, for NHS Commissioning legal requirment to listen to patients and carers and transform and co produce services with them as equal partners.

Surely the culprit here is NHS England?

They are breaking the law re ME and CFS In my view.
The buck stops with them, and Debra Archer's knows that!
They are failing ICBs, failing us and abdicating responsibility.
It's a Human Rights and Equalities issue as well as a breach of The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

 

[Suffolkres]

So it is not just me confused it seems.
It looks as if this recent document is it. But then Hemsley's reply is also pretty vague and makes no reference to feeding support (or nothing specific). Nothing in either addresses the lack of support for very severe cases.

And yet Hemsley was supposed to have a specific protocol for such support, including IV saline infusions if I remember what I heard!

Correct Jonathan, but he is not the decision maker, the ICB are!

 

[rvallee]

I think the document tries to pinpoint a role who has responsibility for the patient, more than what treatment the patient should receive.
They don’t want to put in writing that they should use a 5% incline for feeding, for example.
It’s like they can’t say what to do, but a couple of special roles have the secret knowledge and can (probably? Who knows) be relied on to do the right thing because they’ve been verbally told what the process is.

Verbally told is a critical point here. One main lesson from the inquiry is that as long as what's written doesn't explicitly say what they say out loud, everyone can get away with doing nothing and pretend like there's nothing they could have done differently, even though it's explicitly their narratives and beliefs, which they only vocalize but don't put in writing, that is the problem.

Plus you can always use the excuse that there's always so much to do and everyone is so busy, plus no one really knows what to do here anyway, if it's pointed out how little has been documented, especially compared to what has been said, in secret, behind closed doors.

And more than anything it shows how none of this is accidental. The intent and purpose of systemic negligence is reaffirmed in a "when the president does it, that means it's not illegal" kind of way. This document may as well be entitled "There will be future deaths and we don't mind all the ones that already happened".

 

[Suffolkres]

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.

Quote! November 2024 after Prevention of Deaths Reg 28!

'There is no funding or commissioned service to provide management to patients with severe/very severe ME/CFS. The trust has a Community-based ME/CFS Service to support patients with mild to moderate disease in accordance with the NICE Guidance 2021 (NG206 - Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management). Delivery of this service provision is in accordance with a locally devised service Standard Operating Procedure (SOP) and supports patients with mild to moderate symptoms who have been identified as likely to benefit from therapy. This service is currently delivered by Occupational Therapists.!

The other document precedes the Coroner's inquest dated 2023.
So the Devon ICB is at stalemate, as is NHS England.

 

[Suffolkres]

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.

At least their Interim Medical Director tried to progress matters.

But if the IC Board do not make this an emergency and a priority within their commissioning cycle, his pleas will fall on deaf ears. As will David Strain's.....