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.

 

[forestglip]

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.

It's great that that exists, but it's hard to imagine all staff being willing to read through and absorb this long document.

Maybe the document could be the basis for a publicly available video, which would be more absorbing, and would also be great for non-professional caregivers.

It wouldn't be as easy to update a video as text, though, so it'd be important to make sure everything is high quality from the start. [Edit: Maybe too much risk of something low quality being made and then it being difficult to replace?]

 

[Felis Catus]

I'm raising again the need for thorough medical letters explaining the effects on daily life and functionality. ME/CFS services could have template letters for different severities and personalise them on a case-by-case basis.
Also, help with applying for benefits. If not for all, then at least for those who are severe and very severe.

I am severe and I really really need a medical letter explaining clearly and loudly that I am not able to deal with admin stuff which requires more than a signature, no matter how much time is given to me, and that I do not have paid staff who could do it for me. I am facing this problem even with high profile doctors who are caring for ME/CFS patients. I have been repeatedly told that I could take more time and do it bit by bit or ask someone to do it for me, and I have repeatedly said that I COULD NOT DO IT and that my caregiver had a massive workload with a full time job, caring for me and maintaining the household. Then they chase me months later, give the same advice and I give them the same response.

I had to go through a legal process when I was moderate and that was a nightmare. I was given more time but again, no one seems to understand that 3 weeks is nothing when you are so ill. I don't know how I would deal with it at this level of severity and I obviously can't prove to anyone that I am simply not able to do very basic tasks expected of me.

 

[bobbler]

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

There was debate about how much detail is worth trying to work in to any proposal. The general feeling seemed to be that even if the DHSC was not actively engaging in dialogue on this that having a detailed proposal of what patients want was worth having, partly because the DHSC proposal at present seems quite broad in what might be fitted within it by commissioning units.

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.

In relation to that I have a practical question for all members. It is easy to identify things like making a diagnosis, explaining the dangers of tyring to push through, and providing feeding support for those failing to get nutrition. What i less clear to me is what people thin would be reasonable to ask for in terms of domiciliary services for the severe and very severe in terms of ongoing support for coping with daily activities and symptoms. Specific examples would help. I think the ForwardME people are also uncertain as to exactly what is reasonable to ask for. Comparison with something like provision for MS may be helpful.

I'm bottom end of severe and, despite really needing home care as I'm mostly bedbound (and can't rely on when I can do the next thing, other than extreme planning to get to eg a medical thing) but.. even hair cut at home needs it not dirty (catch 22 washing it harder when it is long) and me able to sit for long enough so gets postponed by energy taken on medical appts I call on the day when I'm well having recovered from medical appts I've had to prioritise vs each other even if they are by phone.

but this one (the domicialliary) is hard and has been hard for me for a number of years because:

Whether I let someone in my home/sign up depends on what it is - as that in itself comes with energy needs that vary massively and could be a 'burden' even if 'help'.

the detail of who might turn up, when (ie if there is control over that - as even being on a list where it might be an appointment in a list where they are an hour late or 15mins early is only weatherable on the one-off appointment basis if I need to be using my top function to think and talk) vs what basis.

And each journey is different - 5mins round the corner for a 5min appointment done on time at the same time with minimal walking is very different to the further away and waiting and louder/brighter situation with longer appointments. So different that the latter I might scrape to but very rarely and takes a huge amount of recovery and I have to be clear that if they need me in person they won't get me being able to think and answer questions (which I could by phone at an allotted time).

makes the 'do without but have peace the follow my body rest wise' vs having help a completely different balance on anything that involves people coming into my home. Once something goes into the 'ongoing care' side of things this balance becomes really key because of the cumulative aspect of having to set an alarm and plan my week around any exertion because I have so few good hrs and just being awake, then functional, then half-presentable (and that comes in different shades because not having greasy hair or being unshowered or having brushed teeth are all things I have to plan in and be well enough). I emphasise that latter point because until an HCP says explicitly to me, and I can trust them, that I won't get notes written about me and they are OK with me being smelly then I'm terrified of the implications of this whether at home or elsewhere.

I will repeat this later but the joined up thing @Kitty talks about of an MS nurse sorting the admin that takes all my energy but I get blocked with even just getting simple equipment if it involves something beyond my GP, and making it not as difficult to not end up with someone inappropriate as 'help' for anything I try - just advocacy, lifts, care/PA stuff, getting wheelchairs would stop me from being buried and made worse by 'that' which is made impossible even if I had energy and just the label ie isn't to do with my lack of tenacity and is everything to do with how damaging the misinformation allowing others to play games and block help has made things at this level. Even in accessing things I'm willing to pay for but need it to be done via home visit and/or needs heard and understood.

I know this doesn't sound medical - and my next post starts with that - but it is as this affects my ability to live and access things I need and take the tiny bit of life I have and not go backward but others act like a foot on neck without having someone else telling them its serious.

 

[bobbler]

In relation to ME/CFS stuff (not from a clinic). I have a regular on-time short, local 5min nurse appt which is made as easy as possible (I think they have this as a pathway for other chronic illnesses) vs even if I was offered at home that might be much better if it was the same just 'at home' and wouldn't quite use all my energy, but not if I'm 'sat' waiting for any old person to turn up (and what do they think of ME/CFS or my debility? paranoia) whenever. Except there will be days I actually can't make the former and it is something that makes a huge difference to me so I can't miss. NB if this wasn't booked by them then previously trying to ring up at the right time (and sometimes it was before it was on the calendar so ring back) to get something fortnightly itself crushed me along with the prescriptions - and then I'd have a different time/day so couldn't plan my week and lifts as easily when it varies, so without that it would have to be home visit but I don't think that alternative would be offered for that (and would that be at a regular time etc).

I've had (private) consultant appointment at home and wouldn't have been able to do that any other way at that point. Then via video/phone. I've had other specialisms where offering phone options when its an appt it is appropriate for is the norm (vs waiting in clinic) too. They write letters to GP and this actually 'doing something' part is pretty vital.

GP-wise I have adjustments of when I book an appt I can decide on the day to make it phone or if in-person needed I check-in then wait in car rather than waiting room. And try and get the same GP consistently (my effort) as they get my communication needs and just the usefulness of picking up where left off. The admin staff are brilliant compared to other places (I can't emphasise how important this is) in doing what they can to make finding and booking appts doable (flagged me I think), within the limits of whats available but I don't push my luck for home visits etc. but there will be a time I'm ill with something that can't be done on phone but I can't get there and I don't know til then. I'd like the service to solodify this to not being just good GPs (decades I had before I found one, and conscious they are within a practice so its precarious if other partners object, they might leave, system doesn't back-up those who try etc) that I at least feel safe with whoever anyone lands with because notes make things more clear. And that the conversation is easier and I'm brave as not risking losnig goodwill asking for home visits if/when needed (particularly if emergency appointments) etc.

I would say that having something which could be ME/CFS specialist properly ('gets it' and can advice GPs etc) I'd love to have something along the MS model @Kitty mentions that can spider-web (I've been buried just trying to organise the medical-equipment/wheelchairs/care/other healthcare ie getting a sustainable life overlap), but also advising both me and other medics in a way that they don't use against me regarding other things that come up.

And then things that might be more a doctor/ consultant and/or nurse. For example if I have an operation needed how to organise it to minimise impact and be able to do the above, or even whether to not risk it with my ME/CFS where it is and battle thru with alternatives. And then making sure if I'm more ill after for x time that what I need to get through that isn't me trying to persuade others so people know how precarious it is during that time.

Atm even non-NHS options after an op vs home come with the usual pros vs cons (quiet rest, set up as I need) short-stay without training meaning I know anyone near me 'gets it'. So that. And getting short-term added care similar risks of who do you get and the exhaustion of training/providing a list that might be energy to no avail - so there is that of the ad hoc but planned domicciliary needs having that could inform and help with getting in place (as they can be the expertise noting the needs).

I've also had a lot of other findings that have come up over the years from different depts and that bigger picture stuff going back to a consultant looking at overall ME/CFS and how those impact it would be useful as said depts just do their dept bit and I don't feel comfortable going over ME/CFS with them so it would need to work the other way.

This regular (I'm talking once a year when things are settled or more) updating is an important aspect going back to Gps I think too. But then there are admin or health things that crop up where being able to slot something in 'ad hoc' to do with those, but also stop the story in update from getting so long I can't remember.

Delivery of and straightforwardness re: prescriptions made the difference between life being survivable vs dominated every week just by that (and yes that had a significant impact on my me/cfs). Tiny things like there was a time I'd have to myself calculate how many pills for each med I had (and couldn't order more than 5 weeks before or for more than 4 weeks worth) and that made just ordering beyond my cognitive exhaustion (I'm mathsy, but it broke my brain to not being able to speak or see each time just enduring those questions and giving answers) so a pathfinder got put on, and now the app has set amounts.

I had to find and pay for home phlebotomy and I think this is an area thing as even cancer/haemotology patients are having to. It's not just the money (and the prices from different places vary hugely as they become businesses eg £55 for some) but finding someone as you are vulnerable in your home.

And this is where we start to get into the difficult turf of it then not just being about the obvious, specifically 'ME/CFS appointments' but accessing healthcare in general. Whether other things need investigating or comorbidities lets just say that very hard and has huge impacts and has been interesting to experience.

It is all the other appointments that mean I'm never out of PEM and always have something others think is urgent (nevermind dentist I mean medical appts I have to prioritise to tick thru). And for some of those as above their service is going what they can (eg phone when possible), but my life for a long time has only been about trying to keep up with the medical stuff, or admin trying to sort making attending those or living less impossible (like equipment).

I haven't even sorted helpers. All the generic services have processes that are impossible for my illness and trying to ask for adapations so I can even access the assessment or chat involved an uphill discussion/writing I can't do. That's before I try and get them to understand my illness re: the thing I've contacted them about in said '20min max at a time no direct, compelx questions, please read things before'.

So there is a lot that could change my health medically by taking the foot off the neck and putting some grease in/take the work out re: battling with correct information being heard on needs (even where it is being asked for eg in an assessment that is work and more work dependning on how they ask for it to be provided) where it can make a difference in the 'wider stuff' too.

Main hospitals are the tricky part they really do take it out to the level people talk about, I can't even imagine being there weeks on end given you need full rest for it not to be cumulative.

 

[Robert 1973]

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

Good question. I’m struggling to think of specifics beyond what’s been suggested in this thread. It is perhaps easier to specify for very severe patients who may have more obvious nursing needs. **

After I was discharged from hospital in 2019 (following unexplained extreme CRP) a community nurse came to see me regularly (weekly then monthly) for about a year to take blood to test my CRP until it has gone back to normal levels. She was there to take blood but she was also just generally supportive, and I have missed that sort of in person support from a medical professional since.

My GP is kind and now phones me 3 or 4 times a year just to check up on me. Sometimes there are specific issues I need help with but I find it helpful just to have regular contact with a medical professional. (And yes, I know I’m lucky to have such a kind and supportive GP.)

None of this really answers your question. I hope others may be able to come up with some more specific suggestions, and I will give it some more thought. When is the deadline?


** This reminds me of an issue which I think I may have raised before. An anomaly of my ME/CFS has been that I have never had any pressure sores. Even when I was bedbound for 7 years and hardly moved all day I never had even the slightest pressure marks. My guess is that this may be a clue to the physiology of my ME/CFS and that it may be common feature of some severe ME/CFS. If there were specialist nurses visiting people with severe ME/CFS, these are the sort of observations that could be recorded. As far as I’m aware there is no literature about it but I’ve not done a search.

If pressure sores are an issue for some people with severe ME/CFS that would be something for visiting nurses to advise on and treat.

 

[bobbler]

On the urgent stuff I'm adding this in as a start because it could be a GP note to give some idea of having 'emergency plans' (that will be best-fit, but better than nothing): I was incredibly lucky I suspect that the last emergency I had (where I knew hospitals were unsafe so didn't know what I'd do as it fell between all other options I'm lucky to have) with the component parts of my GP srugery. I rang in the afternoon and reception said it was an A&E thing. I said but what is the wait as I have an illness that makes that undoable (I think there are notes too backing it up generally even for admin). I think they knew I'd need minor injuries but that a GP letter made a difference (2hrs vs 12hrs+ and different waiting spaces, I sat in A+E at first and it was very bad to sit in) and even tho they had no GP appointments squeezed me in at the end of the day (so I had a few hours to get help to get there). It still knocked me sideways and was lucky to get thru it but had that change not been offered I don't know what.

I don't know too what someone can do when emergencies happen and if I hadn't lucked out with family help being able to take me (and sit, talk) etc. I know carers are on set hours. I don't know if there is something to add if there is any other illness that has solutions to this that could be drawn on for offering options in emergencies.

I know this isn't the bread and butter but the impact is so big anyway, but different things as a prep could make huge differences in outcome/what is possible

 

[Nightsong]

In terms of the individual needs that severe & very severe patients have there are very few existing resources - as far as I am aware the only ones out there (of mixed quality) are:

* Stonebird's (link) 'notes for carers'
* "Pflegeanleitung für schwer- und schwerstkranke ME/CFS-Patient:innen" (mentioned in this thread)
* The NHS Severe ME/CFS e-learning module
* "Severe ME/CFS - A Guide to Living.pdf" (Emily Collingridge's book; includes much on aids & adaptations for the severe & very severe)

If FME are serious about this it might be worth reviewing all of these for ideas that may well help inform a service plan.

Also, a curiosity - in my search alerts today, there is a job vacancy for a clinical nurse specialist for "ME/CFS/FMS" at UCLH: BMJ link. Perhaps their existing nurse is leaving?