Could an exemplar specialist unit be set up for severely ill PwME?

There's been so much over the past few weeks about the horror show that is the NHS's approach to severely ill PwME. We've heard about a lot of cruel, stupid and awful practice. Patients are dying.

Is there really no one in the NHS who has the knowledge and skill to set up an exemplar unit that could demonstrate how it should be done, and that could be used to educate NHS staff from within?

Just as we now have @PhysiosforME, don't we have any Doctors for ME?

 

I worry about this a little because people with severe ME don't tolerate travel well. If doctors are understanding, it's better to care for them in their local hospital than in a central location like London. It's probably necessary if it means better care though.

 

Given at present we are talking about symptom management rather than curative treatment and that the practical skills necessary to undertake any direct intervention in the case of non oral feeding already exist in most districts, is a central specialist inpatient unit what is needed?

Obviously long term a recognised medical specialism taking responsibility for heading up our care is would be ideal, but to kick start local services recognising the sensory issues, the existence of PEM and access to non oral feeding for the very severe that need it is a better first step.

Stop trying to bully the very severe better, listen to them and their carers and provide sensitive access to local services that already exist. Then worry about consultant posts and specialist nurses.

[edited to add the last sentence, and some subsequent correction of typos. I wish autocorrect would stop changing carers to careers.]

 

I think it is, simply because just telling staff to be more considerate about light and sound is not enough. There needs to be a deep understanding of the problem. It has taken me ten years on the forums to get to grips with the reality. No local staff will be in a position to care for one of these very severe cases if they encounter one a year, and with staff turning over quicker than that.

I am quite sure we want an exemplar unit - Templar being a good word. And it should have outreach as a major part of its timetable. In fact we could do with 4-6 of these.

The really difficult issue is finding anyone who would be motivated enough and understand enough to make it what is needed, rather than either a GET-lite shop or, just as bad, a micro-clot centre.

I have talked about this with researchers who want to set up centres of excellence in the context of needing a solid clinical base. Last time we spoke I had to admit that I didn't think the clinical base we need will emerge until a research lead comes up that makes it an attractive proposition for a talented young academic physician.

 

This is the nub.

 

I agree, but what I'm suggesting is an exemplar unit, with the aim of demonstrating best practice so that other doctors could be shown it - maybe even visit it to drink in the ethos - and roll it out in their local hospitals.

 

I think that visiting would be important. One of the main things I want doctors to learn is attitude - of the kind that doesn't result in patients being left lying on the floor because they couldn't crawl far enough to 'earn' their food.

[ETA] I want doctors to leave that unit with a sense of horror about how badly ME patients are treated elsewhere and to feel as though their brain has had a cleansing shower that has removed all the BPS propaganda from it. I want them to see other doctors thinking and behaving the way they all should have been from the start.

 

It is worth remembering that the current UK specialist ME/CFS services were justified on the basis of many of the arguments raised above and that BACME is part of this legacy.

That the current specialist services completely ignore the severe and very severe, and indeed may have added to their number through their role as a GET/CBT production line which they struggle to evolve from despite the new NICE guidelines, is part of the reason that the very severe with feeding issues are suffering so badly under the NHS today.

 

I feel like well done place for people with very severe ME would actually take more of a nursing home type setup than a hospital.

 

Traditionally it was the norm. We all know the centre names: Brompton, Queen Square, Rheumatic Diseases at Bath, Birmingham Accident Unit, Royal National Orthopaedic. Almost all trainees in a specialty wanting to become consultants worked for a year or more in these exemplar units.

Then in the 1990s medical training had to be made 'fair', which, like all these things was a con. Consultants in the provinces wanted dogsbody juniors to help them out so training was spread everywhere - with catastrophic results. Now nobody understands that we are always learning, always making use of very partial information, not just churning out pork pies according a 100 year recipe.

Recent politics has abolished the whole idea of exemplar clinical facilities. There are some regional centres but that is based on small demand, not learning. The only hospitals that still serve the original purpose are the half dozen paediatric hospitals that provide specialised training for paediatricians who will go to district hospitals.

When I set up B cell depletion for autoimmunity, I was at the very end of the time when that sort of thing was possible within a government health care framework. Soon after rules forbad anything so adventurous.

 

Are there still any HIV/AIDs clinics? Would they be useful to copy in any way?

 

I wonder if MND (ALS) services might be worth looking at. My knowledge is very out of date, but domiciliary services for people with MND improved dramatically in the 1980s and 1990s including non oral feeding. Neurologists were more clearly the lead consultant. Historically doctors were very ambivalent about the condition thinking there was nothing they could do for a deteriorating condition and it was not uncommon for patients not even to be told what they had, because it was seen as counter productive to destroy individuals’ hope.

However once it was seen what could be provided with managing feeding and introducing non oral feeding or electronic communication aids care improved exponentially. This was spurred on here in the UK by the fantastic network of MNDA welfare offices who were brilliant sources of information, ensured more coordinated care between community and hospital and encourage timely referrals. I suppose also IT developments meant some much more was available at that time. I aware things have changed since 2000 when I stopped work but hopefully improvements in care have continued.