Why are pwME not offered an annual review/checkup in UK?

I have just received a notification from my GP for an annual review of 'Long term conditions'.

This is actually nothing to do with ME, but for heart and blood pressure issues that arose last year.
In 24 years as a pwME I have not been offered any kind of official regular review for ME/CFS.

Did this issue not come up in the NICE guidelines discussions?

I see that for MS patients
"NICE guidelines and NHS England state that every person with Multiple Sclerosis (MS) are offered a comprehensive review once a year."
although in practice apparently this doesn't happen as much as it should.
Navigating the comprehensive review of the MS… | Neurology Academy

I know we don't have the 'specialist' services we need, but surely just a basic check to ascertain if the patient is coping, or has got worse etc etc should be just as important for ME patients as for those suffering from other LTCs. We are after all included in LTCs when it comes to CBT.
And other basic tests to check that nothing else is going wrong would also seem sensible.

thoughts?

 

We need to have much better knowledge of ME/CFS within GP services and then yes much better ongoing support and monitoring for non-ME conditions.

I’ve asked for this multiple times. And sometimes feel I’m making progress then staff change and you have to start again. Then despite my severe condition and being housebound for a decade they seem to regularly forget and ask me to book appointments for standard check ups like the one you mention.

To me these are signs of individuals and a system that just doesn’t recognise ME/CFS.

 

This.

I suspect part of the reason they think they have nothing to offer is that there are no gadgets. No monitors, weighing scales, blood tests or thermometers that will say anything objective about ME/CFS, so they'd just have to listen.

That might be more or less true for me, since my needs are mainly social. But they have no way of knowing that. I might easily have progressed to severely ill, need routine screenings and checkups at home, and would have difficulty accessing a face to face consultation even for an urgent issue. That's where they really ought to be stepping up.

[Edited to tidy up]

 

I always find it comforting finding others experiences so similar. Also infuriating of course, but at least if we face the same problems there can be the same solutions

 

Because while ever they believe it to be functional/psychosomatic there is no need for one. (From their POV I mean)

it’s irrelevant what it says in NICE GL if the GPs think it’s a psych issue they would never allow practice funds to be wasted on us,

Even more insidiously, they wouldn’t want to risk reinforcing our abnormal beliefs that we’re ill by suggesting we have a condition that would need an annual review.

 

I don't get annual reviews on any of my conditions nor medication. Annually they take my medication off repeat, I discover this when I need to order a prescription ... then they get the GP to review and put it all back.

I have personally asked to be sent back to cardio to be reviewed and told I would hear back and haven't.

 

Sure, but even then they also emphasise and research all the existing negative impacts of deconditioning and similar, so they should have to deal with those impacts even if they believe the patients "brought it all upon themselves", just how they put a cast on somebody that fell of a skateboard. So in some sense especially if a GPs thinks that ME/CFS is a functional/psychosomatic then there is a need for getting this patient assessed. Independently of that, pwME are human beings, who just like other humans beings develop health problems. If their current health problems and the situation at clinics or similar is a hinderance to them getting an assessement for their health problems, that for me initself would justify a change of practice.

I think what Trish has encountered would sound like a decent solution for the time being: As long as there are no specialists (at least none that deserve said name) and there is no knowledge that would be beneficial to treating ME/CFS, perhaps pwME getting something akin to a yearly invitation to a full check-up with a GP so that at least other issues, if they exist, can be dealt whilst the theorising and beliefs around ME/CFS are left out of the equation doesn't sound like a bad start to me.

Now there are of course problems with accessibilty to such services for pwME and them being unaccessible for many pwME and I may be extremely naive, but perhaps if there is a program inviting patients to GPs then there might be more accomodation to make such appointments or home visits possible, rather than just the classical "it can't be done" and people not seeing a doctor for several decades.

But how would this even work in regards to patient registries and data privacy?

 

Same way it works in other conditions we're monitored for, I guess? You're offered a regular appointment, but there's no obligation to take it up. You could accept it at the time but change your mind later, and you could also ask to be taken off the screening invitation list.

It's hard to think of potential privacy issues that don't apply to every other kind of interaction / ongoing relationship with healthcare providers.

 

Within this document it says:
"Objective
To develop a document for a comprehensive review that would identify any care, social or other interventions that a service user may need, easy to use, self-explanatory with questions, prompts and problem solving adjuncts included."

If we could come up with something like this for pwME/CFS it might be a good place to start.

 

Yes, but are there any accurate patient registries that would make any of this sensible? If there is a such large array of diagnostic inaccuracy then you might not end up inviting those that you want to invite in the first place and for example rather those that are on some list because they already regularly see a doctor... I guess overdiagnosis shouldn't be a problem here in principle but might still invite complaints...

 

I dont disagree, but I was responding to the title question - asking why we dont get reviews.

 

No, but that's not how it works in real life anyway. Patient registries would be a terrible option for most conditions, as the data would start to go out of date within months of being compiled. Maybe for rare genetic diseases, but not for something as common and as easily misdiagnosed as ME/CFS.

The data, the knowledge, would be held by the physician who is the patient's first port of call. In Britain at least that would be the GP.