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

[Jonathan Edwards]

I think there should be specialist nurses as the main point of contact for patients, providing a range of ways to communicate including online, phone and home visits. That way even the sickest patients and their carers should be able to get quick access to someone knowledgable who works directly with the consultant and can flag up problems hopefully before they become acute.

I think we more or less have that in the suggestion but I will review it.

In terms of nutritional assessment, maybe the crucial thing is that a central ME/CFS nurse specialist contact should be trained in the MUST protocol. I don't think it is that complicated - no more than giving chemotherapy, which has become a standard nurse specialist practice.

 

[Robert 1973]

The ForwardME service subgroup are going to work on a suggested service format and seem keen to capitalise on the S4ME material.

That sounds encouraging. Are we allowed to know who is in the FME service subgroup?

I thought I might look again over the next few days at how much detail we have in the S4ME draft and see if there are areas where more might make sense.

I’m wondering if any of the recommendations need citations.

With regard to the domiciliary service, I agree that it should be mostly based on and coordinated by specialist nurses. I think there also needs to be the provision for physicians to see patients at home in the first instance, and when needed, if possible.

It should perhaps emphasise the benefit of patients seeing fewer people (ie specialist nurses) more often rather than teams of different people seeing the patients fewer times each. This is a much more efficient use of patients’ limited capacity, and would be better for patients’ general wellbeing. Depersonalisation of medical services has become increasingly common but IMO we need individual nurses who can build relationships with patients and take responsibility for their patients’ overall care. This would also enable the nurses to build a better understanding of the individual patients and increase their ability to understand ME/CFS in general, which should benefit research.

Caroline Kingdon would be a good person to ask for input if she’s not already been consulted.

I suspect and hope that if/when an appropriate service is rolled out, the knowledge that is acquired through experience may enable the services to evolve to some extent. It would be important to prevent experience being used to prescribe unevidenced therapies, but provided appropriate guardrails were put in place I would hope that the experience of specialist nurses seeing severe and very severe patients on a regular basis would increase their understanding of what is needed in terms of care.

 

[Jonathan Edwards]

Are we allowed to know who is in the FME service subgroup?

No.

 

[Jonathan Edwards]

Caroline Kingdon would be a good person to ask for input if she’s not already been consulted.

I don't think Caroline has ever provided a service herself but might have ideas, I agree.

 

[Jonathan Edwards]

This would also enable the nurses to build a better understanding of the individual patients and increase their ability to understand ME/CFS in general, which should benefit research.

OK, but what exactly are these individual needs, in terms of services that can reasonably be asked for?

 

[Utsikt]

Can you be more specific? What aids would help with ADL? I can think of shower seats, shower conversions, wheelchairs, stair lifts? What aids are there for personal hygiene in bed?

Jus throwing out ideas:

Day bed with adjustable back and leg section, reclined wheelchair.

Are blinding curtains considered aids? Solutions for cooling in high temperatures? Cooling mattress?

Those mattresses that move you to prevent bed sores (don’t know if the most severe could tolerate that).

Inflatable hair washing basin.

Those tables on wheels.

I agree that a standard OT could provide these but my thought is that a nurse specialist almost certainly could too and an ME/CFS dedicated nurse is likely to be much better value than an ME/CFS dedicated OT.

I agree.

That is a useful list. I was thinking about being more specific about what therapeutic enthusiasms patients and carers need protecting from (diaries etc.).

Diaries, pacing up, off-label treatments, «natural» treatments (are considered safer by some for some reason), CBT.

Realistic prognosis.

Focus on improving QoL, you can’t improve the underlying disease yet other than by luck.

Yes, this seems central but the question is how best to ease the burden. Some good suggestions.

The nurses and staff need education about ME/CFS, and they need to understand that you can’t compromise with the standards. Mine are very hit and miss, but luckily they only help with food when my carers can’t so it doesn’t impact me too much.

 

[forestglip]

The nurses and staff need education about ME/CFS,

I wonder if nurses working with an ME/CFS patient long-term could be required to watch a well-made instructional video/documentary about ME/CFS, with a test afterwards, to be sure they know what it is, what a patient may need, and what a patient does not need. One good video might be less expensive and more consistent than trying to make sure every person explaining things to patient-facing staff is well-informed.

 

[Chandelier]

I wonder if nurses working with an ME/CFS patient long-term could be required to watch a well-made instructional video/documentary about ME/CFS

The university of Vienna produced a pretty good manual (auto-translated by @Grigor) for carers of very severe pwME.
S4ME thread.

Joachim Hermisson, the main author, is a math professor and carer for a very severe child.