Annual reviews for ME/CFS

First posts copied and others moved from
UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023
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Most people with a 'proper' chronic illness have an annual review, don't they? I have them for two different conditions, neither of which impact me nearly as much as ME.

Might it make sense to recommend people are reviewed annually by their GP practice rather than by ME/CFS clinics, which substantial numbers will never have attended in the first place?

If treatments the person has had are captured, it would provide something of an evidence base for the long-term outcomes. Most of them will be on the person's medical record, it's not a case of individuals needing to remember the dates or details. And a short series of questions about any recent treatment and their current work/ education/ training/ parenting/ caring status could be completed quite quickly by phone or online, at least for people who are not severely ill.

 

If those are trained well, and not from some guideline eg put together by Clare Gerada, then it gets around clinics being able to claim they can't do long-term impact because they don't do long-term care (ridiculous). I think only doing short-term measures and claiming it must be that way 'because clinics just do short term' or suggesting it ends if someone drops out either because the clinic is so poor in what it offers or someone gets iller and there is no remote options is also unacceptable.

I just don't think it is right that there shouldn't be a proper clinic because that in itself is causing oppobrium towards patients probably by overworked GPs. And if you compare it to a clinic where there is a proper biomedical clinician, as there should be for ME/CFS there is noone they look up to and would respect the instructions of.

Maybe putting it as some sort of proper KPI (QOF? Ie like asthma has payment attached to eg x% completing a yearly review) theoretically might change things, but would we trust the GP power situation and controls to not use this opportunistically? How does all of that work, and when you think about the hierarchy and workload/career for those feeding into it then is it still far too early on in what is know regarding the condition and importantly getting a decent staff base together to even think about that - because I suspect the asthma guidelines were developed with asthma consultants behind it, and not 'the head of GPs' or the like.

Is there also an issue regarding research if we don't have measures that push clinics to start taking responsibility for patients and proper medical care and decent biomedical research, that we won't have that basis for eg someone to spot similarities and try out things that might work and maybe even get ideas for trials etc?

But I'm not sure from a political perspective of there should be long-term care in clinics, and said clinics should have ways with GPs of spotting when someone is at a 'moment of truth' point eg might be about to take a big nosedive unless adjustments are quickly rushed through and be able to have urgent appointments.

I really don't think the format of offering a course is of much use, and is just used to hide resources and time from professionals which would be better spent on eg writing letters to suggest adjustments that are needed.

Most importantly it relates to a sense of responsibility for the long-term care and outcome of patients. If you only have to see mild people short term you don't know what the condition is and begin lumping them in with treated cancer patients and other different things. So it is circular for education and the false beliefs issue for HCPs.

Sorry... lots of questions

 

Once a year review in primary care is the NICE recommendation
https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#review-in-primary-care

 

Maybe there should be an annual review PROMS

 

My GP practice does both my reviews, even though I'm also reviewed by the rheumatology team. I think it's quite normal for primary care teams to do them. Also, taking them away from the ME/CFS clinics (as they're currently set up, at least) might remove any incentives to manipulate data in order to justify the clinics' existence. A traditional annual review continues as long as the patient has the condition; there's no cutoff after a year or 18 months, to rule out the possibility of inconvenient outcomes like people failing to recover or getting worse after treatment.

If it were set up so that it runs on rails, the reviews could easily be done by practice nurses. That's how it works with asthma clinics—the nurse takes people through a set series of assessments and questions, and if there's any concern or a need for a different prescription, s/he will ask them to make an appointment to see the doctor. There's nothing to stop people making a GP appointment between reviews, either, if they've got something they need to discuss.

A similar model might work for routine ME/CFS monitoring, particularly for capturing those long term outcomes. Reviews could include the FUNCAP questionnaire, as well as how they're coping with work etc. It doesn't need a lot of interpretation—if someone was working or studying full time before they got ill and can now only do it part-time or not at all, that's pretty clear.

Thank you, I'd forgotten about that.

 

Yes, I was thinking it could be done by a practice nurse, like the diabetes, asthma etc

 

I am finding the idea of discussing the pros and cons /potential catches (my biggest concern is understanding the power base behind GP stuff ) really worthwhile. Am getting tired but that doesn’t mean there isn’t more than I write now to add to this thread of thinking as it comes to me!

I like your pros

I also know my asthma review at a new GP focused on ‘what to do when you have…’ eg an asthma attack, and then it won’t go, and other things plan to go through.

I realised my previous gp surgery had never done that. And that it was really important.

and that sort of thing - particularly thinking about the Bateman Horne resources (for crash days) but also how to put in a better way of stepping up checks if someone might be relapsing - sound like prime fodder for this

but it would need the ability for resources that are appropriate to be triggered in good time for this. Eg liaison with those who would update employers or school, social care support (but without that just being added work just as someone getting ill and adjustments taking a long time)

and of course with this is having biomedical clinical advice and referral at some point. Although I like it being logged with both.

100% agree that there shouldn’t be marking own homework

100% agree that if ICBs with GPs on then will be deciding where resources go then having framework for ‘what actually mayters’ in ME is useful and key too ie so those measures would show up to them and not ‘cover’ pointless offerings or gaslight the GP because a patient has had 6weeks brainwashing in ‘hope and push’ and comes back raving about it using toxic positivityvterms then is seen as ‘low’ when the crash happens etc


On the other hand the worst nightmare is a plan where people are taught to treat PEM like a panic attack or hypersensitivity or just ‘so remember for next time’ when it was probably unavoidable eg due to work or caring responsibilities or being eg stranded at a station and no taxi

So if it was a broad brush as it gone up or down this year, med changes etc

and it was combined with getting the right coding ..

 

Not necessarily PROM specifically - as those just measure delivery of something

but something simple and more appropriate annually that could indeed pick up on trends eg show up if after these courses people were more disabled 3yrs on..

I think there would indeed need to be a disability scale measure and and trend chart so that it is long term and under the chart a big red warning that for any treatment you look at 3yrs on and not ‘6 months’ where measures are subjective (placebo affect etc)

 

I think that's rather different to annual reviews, which are by definition routine.

They're not designed to manage a change in someone's level of severity, or address new symptoms or a relapse. Acute issues like that are dealt with in standard GP consultations.

Reviews track long term trends, check that medication is still doing its job, etc—they're to make sure patients who're unlikely to request appointments are seen regularly. Otherwise, people whose illness lacks treatment options or is reasonably stable can disappear from view for years at a time. (The last time I made an appointment to see a doctor about ME was in 2012, and that was only for a fit note!)

I don't think there's much liaison with external agencies either. Providers outside the NHS might not be used to getting referrals through GPs, though I guess doctors might be asked to provide medical evidence. People who need social support or adaptations usually contact their local authority, and work and education are dealt with via the fit note system. Not that it wouldn't be fantastic to have joined-up provision like that!—but we have to deal with what's in place now.

 

I was being somewhat facetious, they wouldn’t care for reported outcomes 3 years after last being seen in the clinic. The PROMS are to confirm the effectiveness of the clinics intervention.
Any PROM analysing annual reviews would find that nobody is getting an annual review.

 

Nope, my asthma yearly review specifically includes a plan, and written so you take it away, for when you have an asthma attack. And the different possibilities. e.g. all the way up to when to call 999.

There is also part which notes how is the medication /condition ie is it getting worse and is there anything else to bear in mind (allergies or triggers)

So it doesn't seem irrelevant (and certainly didn't the first time when I changed surgeries because I realised I'd never been told what to do if things 'escalate') because that plan might change as the condition changes. Or your inhaler (eg max number of times you can take it).

I can see the map-over in this particular aspsect, as well as the other bits of review, to ME/CFS because at least it flags eg if someone is working or at school and has a particularly bad PEM incident, but also might help for partners or family. Just to have it more annotated

If your function level is changing then what you need when you have PEM or a crash might also change? But also it might be knowing when to go back to GP if you are in a slow deterioration or long crash (of course there would need to be something that could actually be offered then for it to be worthwhile)

 

I love it then! apologies for being slow there

 

To be honest, having a chat with a professional might just be what you need. I knew I was in trouble for a few years, but work, mortgage, life, you have to keep going. Maybe an action plan session of “this isn’t working, you’re getting worse, the risks are x, y, z what changes will you make?” Would have helped.

 

Yep. And also if they took the opportunity to have this bit in then it might mean those who have difficult people at home at least have something written down to take. Plus it might force the GP/nurse/reviewer to understand what PEM actually is for that person, and how bad for them it needs to be for them to take eg time off work or school. And a chance for GP to cover the 'not just ME stuff' and give people the actual OKAY to come in if they suddenly get dizzy spells, or a new unexpected symptoms that 'isn't on this list' type thing.

And that, combined with an annual review could perhaps help given the annual leave vs disability leave thing you get. Or future issues on asking for adjustments. I'm slightly conscious the pattern of PEM can be problematic for the algorithms used for sick days. eg if someone collapses by FRiday, or gets through the week by pushing and the dream of spending the weekend in bed (hoping it will recover them) and due to when PEM hits and the extended time of that if you've really overdone then might end up being Monday they still can't move.

These things won't need a doctors note but over time if you have lots of days here and there recording/reporting it and authentication for work, but also for health, might be a useful note on the plan if the GP surgery is so minded. In the end if you get some sort of extended sick leave or capability process they might get dragged into it anyway.

You might not ring up the GP every time that you have PEM (every reason, including how ill you are), or a crash, but might note down when it was that bad you had to miss something important. SO have a total for the annual review. Or the GP might suggest that if it happens x times or starts becoming y bad then they'd like to hear about it, just to authenticate or discuss - or not of course, we all know that might be quite rare.

At its most extreme it might solve the issue of something getting to a point where they can't come in (and request a home visit) or end up in hospital is my translation to the asthma thing. And yes the complex bit is that I assume with asthma they can and do refer to some sort of medical clinic if things are getting worse, and the emergency plan is important because it can be life-threatening and could involve hospital A&E etc. plus I guess the 111 or whatever lines and chemist vs GP vs other places does change frequently enough it's worth telling people so they aren't finding out these changes mid-attack.


And all of this info could be more simple and usefully coded to describe patterns

 

If you wanted to push it and get really proactive then it could be used by better GPs to signpost help and when to think of it. The things I'm thinking of are more along the lines of:

Sometimes it is simple issues like a car park or office moving and that additional walking adding up - which a GP knowing can actually make a difference for in either applying for different parking options or discussing with employer?

Or if someone is getting seriously worse symptoms over time because of eg change in ways of working, or overworking, then some might go in anyway but it might be useful to (given how vulnerable many of us feel, and worried about how GP might react) note it down like a 'deal'

Some GPs now have links with or in-house OT and other services. So if it is small things there they might prefer someone got ahead of the game with a rail or raised loo vs dealing with a fall. So a yearly review might want to note to pwme the 'tipping point/health flags' for doing that request in the plan if someone is 'on the edge' of certain mobility issues (we won't do OT referral now, but will note downward trajectory or worse due to eg recent flu, if x starts to happen then email to request OT type thing).

But in the absence of that them covering their backs by having pointers to Bateman Horne advice and something to those they live with that forcing them on a hike or up a ladder when in PEM might lead them to the GPs door might seem worthwhile to them?

 

Just to go back to the question that started me on this train of thought: are people asked about capacity for work/ study/ etc in other contexts at annual review? Are there any issues with asking patients about it?

It struck me last night that, unless I've requested fit notes, nobody ever has asked me that. It might only be that it didn't come up, but it's probably best to avoid suggesting that primary care clinicians ask about things they usually consider none of their business or somehow "un-PC" (brain's still knackered after last night's music, and I can't think of a better word!)

 

I wouldn’t really expect a review to ask about work, but I would have expected a review of my ME to end up with me talking about work as that was my main issue when I was Mild and deteriorating. An annual review would have had a few years of me a) deteriorating and b) having a job which didn’t allow for adjustments, so perhaps a nurse warning me I could be headed for a severe crash/deterioration/bedbound might have helped me.

 

I know what I was trying to think of, but couldn’t. Emotional Labour? Mental load?

Mental load is usually described as the unseen/behind the scenes work a family member does (usually female) to run the family, but it’s similar to us managing our health on our own

- anticipating needs
- identify how to meet the needs
- making decisions
- monitoring progress

https://townsvillepsychologist.com.au/managing-the-mental-load/

wouldn’t it be nice if someone could have a bit of a monitor with us, one a year?

 

Indeed and we have it on another level when you have both physical and cognitive energy thresholds and have to calculate how to do what needs to be done that day when you can only do the stairs twice, sit up for x minutes and can’t compensate for it with hours on the phone or computer.

you then layer these strait jackets with the complexity of the illness, complexity of health system for illness (different depts) and bad job that has been done in our adjustments needed being laid out (so no Go knows you can’t spend hours calculating how many of c pills you’ll need that month or chasing prescriptions).

And then the bigotry or ‘thinks they know’ so are starting from minus 200 not even zero knowledge when explaining … and that explaining comes out of your energy and is made harder because no one thinks we deserve to be heard or takes it seriously to be noted becythe energy of doing so we wouldn’t have ‘spent’ just fir someone to do nothing with it etc

 

I have an annual asthma review and am asked "does your asthma stop you from doing any activities"

To which my answer (often said in unison with the previous asthma nurse who had known me a long while) "no, but my ME does"

My practice as a whole understands/ accepts that I have ME, mostly because I had life threating problems that precipitated it (but seem confused that I have ptsd) but are quick to shrug and tell me that there is nothing that they can do.

Given that DecodeME has shown that symptoms get worse with age, an annual review would make the most difference, especially if there was support to access things like social care.

Unfortunately with an already completely swamped NHS this is an impossible ask, which is deeply wrong on multiple levels.

It is somewhat circular, as without this support people get worse and the illness isn't taken seriously and there is no data gathered about long term impacts.