A thread on what people with ME/CFS need in the way of service

[Kitty]

Many of the UK specialist services don’t offer a diagnostic service, but only accept referrals once the diagnosis has been made.

Which makes sense, but it's clear that in at least some places it's the other way around: GPs refer suspected cases on to their specialist clinic for diagnosis.

 

[NelliePledge]

Also if there’s actually a medic and nurse specialist practitioner role presumably that gives the GPs a source of advice.

 

[Jonathan Edwards]

Yes, I just see this as normalising the communication and learning pathways for everyone in line with other 'real' diseases.

 

[Robert 1973]

I think it’s looking good, particularly with the changes that have been made following feedback.

There appears to be near consensus here but it would be useful to hear from anyone who would not support the proposal in the current form.

I suspect that the recommendation not to prescribe off-licence drugs may be the part that is most likely to meet resistance from some patients – even with the longer explanation and caveat about withdrawing medications that have already been prescribed. But I don’t have a suggestion about how to avoid that other than to make the rationale even clearer.


Typo in bold:

Neurology seems most relevant but rheumatology has accommodated a number of conditions the do not easily fall into a specialty category, such as chronic pain and muscle disease, especially where there may be immunological features.

Rogue comma:

It may be possible to cover some of the needs for assessment and care at home through primary care staff such as , including

 

[Michelle]

Also, I wonder if a peer advice project would be useful, where people who've been ill quite a long time could contribute paragraphs about the journey they went on. For instance:

• clinging to the belief there must be something that helps, followed by trying anything and everything to no avail;
  
  
• suspecting they may have made their illness worse by trying too hard to keep up their lives;
  
  
• discovering there are patients who've been harmed by inappropriate advice, which was given to them by reputable healthcare institutions and medical professionals;
  
  
• learning that most ME/CFS research ranges from useless to fraud-adjacent, and it doesn't take long to get the hang of how to spot it;
  
  
• realising people who claim to be experts usually aren't – real experts admit they know almost nothing;
  
  
• grasping the sheer scale of crappy alternative medicine that is thrust in our faces at every turn, most of which is useless and some of which is risky;
  
  
• the whole internet thing – misinformation from other patients, private doctors offering expensive and unproven treatments, the mushrooming of so-called syndromes.

[...]
[/QUOTE]

That's great Kitty. I'd like to see something like that incorporated into the S4ME website. Perhaps it could be achieved by paragraphs of experiences illustrating each point, contributed by members.

OMG This!! For years I've been wishing I was healthy enough to start doing something like this here at S4ME. There is so much I wish I would have known 25 years ago when I was first getting sick enough to start reading the Internet. Oh the money, testing, and ER visits that would have been saved! Oh the campylobacter infection from drinking raw goat's milk I would have avoided! (Yes...yes I really did do that...) And so many other things.

There is so much collective knowledge here---both 100s of years of "lived experience" and specialized information (how trials work, basic biology, and especially hearing from health care providers about the challenges in treating patients w/ME/CFS). And it's heart-breaking watching all the Covid-to-ME/CFS patients going through the same bullshit.

 

[Jonathan Edwards]

I am minded that time is ticking by. Do forum members think that it would be appropriate to send the draft as it is (in first post) to the ForwardME working group interacting with DHSC?

We discussed drawing up a service specification on the working group and I mentioned that something had been started here. I do not think anything polished is needed, just something to feed in a rough model for discussion.

 

[Jonathan Edwards]

I have added this sentence:

A central need for people with ME/CFS is validation; a separate, ringfenced, ME/CFS service is the most powerful invalidation of all.

 

[Robert 1973]

I am minded that time is ticking by. Do forum members think that it would be appropriate to send the draft as it is (in first post) to the ForwardME working group interacting with DHSC?

Depending on deadlines or time pressures from ForwardME, I’m thinking it might be a good idea to wait a day or so to see if anyone else wants to suggest any changes. But I would be happy for it to go to ForwardME as it is.

 

[Sasha]

I have added this sentence:

A central need for people with ME/CFS is validation; a separate, ringfenced, ME/CFS service is the most powerful invalidation of all.

That's a very interesting point and not how we're used to thinking about the problem. I think it underlines that most patients (me included) have no idea how the health service works or thinks.

 

[Trish]

Maybe give us another day or 2. I haven’t been able to keep up with this fast moving thread and was hoping to do so this weekend.

But I'm sure it's excellent anyway with so much input. So ignore me if you need to get on with sending it. We can work on an S4ME fact sheet version later if members think it is useful.

 

[Jonathan Edwards]

Maybe give us another day or 2. I haven’t been able to keep up with this fast moving thread and was hoping to do so this weekend.

Sure, I was thinking within the week, more or less.

 

[Jonathan Edwards]

That's a very interesting point and not how we're used to thinking about the problem. I think it underlines that most patients (me included) have no idea how the health service works or thinks.

My impression is that members of the ForwardME group may see it like that too.

 

[Lou B Lou]

This is shortish as I am not very 'with it'.

I do agree that focus should be on severe/Vsevere. But, over the last 2 decades so many pwME are on record stating that they were not severe until they were 'prescribed' graded exercise, or as its now called, graded activity/Pacing up/Increasing your Baseline etc. The mild/mod/severe/vsevere categories are not fixed, in that people can move between them, but most often to a worse health category.

I do think it's vital that Drs, HPCs and pwME are warned that people who are now Mild or Moderate can and do become much more sick, become Severe/VSevere with mistreatment (which is preventable), or from over-exertion due to life situations, even hospital appointments. Otherwise pwME who are currently Mild or Moderate could be left out of safety considerations, when they need to be included for necessary adjustments considerations at medical appointments/or when in hospital for anything.

Some of the Mild and Moderate pwME of today will become the Severe/VSevere patients of tomorrow.

Sorry, that's a bit garbled, I'm sure you know what I mean.
.

 

[Jonathan Edwards]

Good point. I have added something in about self-re-referral.

 

[Peter T]

I do not understand how the NHS at the appropriate level works so am more than happy to be guided by others, primarily @Jonathan Edwards, over the next steps and timings. However having got this far I feel we probably want as many of the appropriate people possible to read it with an open mind before the usual suspects start lobbying against it.

I also agree with the suggestion that it would be useful to reformat this service model as an S4ME handout that would be useable for advocacy in other countries rather than just the UK. If volunteers are sought a drafting group, I would be happy to help out. I do not have enough cognitive ability to draft new material but feel I could contribute to any editing process.

 

[BrightCandle]

The service as described is useless to me, I am too severe to be travelling into hospitals as I have stated repeatedly. I also have an obstructive GP that refuses to refer me or diagnose me. It would not help me at all, infact it would entrench existing prejudiced treatment I am receiving and further isolate me as I would not be suitable for the existing pathway. I don't need support either I need medication for my symptoms and consequences of my disease, medications other diseases receive when they get these symptoms.

I am disconcerted I have had to repeat myself on this so many times and been dismissed and ignored. I think S4ME is driving a very dangerous direction here and one I want no part of. You are about to do immense harm.

 

[Jonathan Edwards]

The service as described is useless to me, I am too severe to be travelling into hospitals as I have stated repeatedly. I also have an obstructive GP that refuses to refer me or diagnose me. It would not help me at all, infact it would entrench existing prejudiced treatment I am receiving and further isolate me as I would not be suitable for the existing pathway. I don't need support either I need medication for my symptoms and consequences of my disease, medications other diseases receive when they get these symptoms.

I do not understand this. The proposal includes domiciliary visits and telehealth and includes severe and very severe services. The current DHSC proposal says nothing about domiciliary care and expressly excludes the severe and very severe. If a GPs refuse to refer or diagnose then there needs to be better recognition of ME/CFS as a real disease needing care. That is only likely to come if there is specialist physician- based service as for other real diseases.

Medication can be prescribed at domiciliary visits.

I am sorry that you feel this is unhelpful but it is hard for me to see why this proposal should do harm. It includes provision of a service for people with severe disability which currently does not exist and is not being proposed by DHSC.

 

[Peter T]

Is it worth including within the document that if there is any question, the presumption should be in favour of a domiciliary provision?

My experience has been that to get a GP to visit I have to get someone else to wring on my behalf, it seems to be the assumption that if I am well enough to make a phone call I am well enough to attend the clinic. I have previously had to turn down consultant referrals for potentially serious issues when I was not well enough to get to outpatients and my GPs have failed in the past to get district nurse visits for blood tests or to administer any injections. So for me when I have been more severe health provision was more or less inaccessible. So I think for the severe and very severe to feel confident in these proposals domiciliary aspects need to be stressed more.

 

[Trish]

Should there be some option of self referral for specialist domiciliary care for people with severe ME/CFS whose GP refuses them care?

 

[Felis Catus]

My experience has been that to get a GP to visit I have to get someone else to wring on my behalf, it seems to be the assumption that if I am well enough to make a phone call I am well enough to attend the clinic.

I can't get it even that way. They "don't do home visits". I wonder if there is something in some guidelines I could refer to. They have me coded as housebound although I'm aware it's within their power to come up with a reason to remove it if I start insisting on domiciliary care on the basis of being housebound.

Should there be some option of self referral for specialist domiciliary care for people with severe ME/CFS whose GP refuses them care?

This would be amazing.