UK: University College London hospitals (NHS)

According to the UCLH website, they refer to the condition as ME/CFS so I anticipated that I would be treated as such. But I wasn't asked once about my symptoms, other than a brief mention of the GPs referral letter.

Basically the thrust of the diagnosis was that I was an overthinker so my brain was overworking and exhausting my energy supply and breaking down my cells (Apoptosis?) and creating "toxins" (RONS?) that were damaging my body and causing my symptoms. I can't say it was a discussion, because it was more like a lecture. I didn't know whether to laugh or cry by the end.

And after all that, there was no multidisciplinary care plan or proposal of how to move forward. Just these handful of separate referrals and a couple of book references. I think the UCLH service is swamped, and it feels like a factory production line where they get you in, give you a quick diagnosis, and then boot you out the door. I didn't feel there was any quality in the consultation.

 

So sorry about this @BazzaBoyle

Reports from the paediatric service there are just as bad.

I've haven't heard any evidence that the rate of apoptosis (programmed cell death) is affected by worrying, or altered in ME. Your body needs to kill off old or damaged cells and produce new ones all the time.

ROS, reactive oxygen species crop up from time to time as hypotheses for ME, but it sounds as though they are trying to link ME to psychological causes, ratherb than the physiological changes which are not fully understood.

 

In my experience, even in mental health services, they take the time to ask about your symptoms to ensure they reach the correct diagnosis regardless of the GP referral.

I'm struggling to understand how that's possible can anyone provide any explanation? @SNT Gatchaman @Jonathan Edwards
Is this something like burnout, which happens in response to overactivity?

I'm sorry this has been your experience. It doesn't sound like a service aligned with a debilitating chronic medical condition.

 

That is simply quack pseudoscience. It does not surprise me, unfortunately. RLHIM seems to have made it clear it is a quack outfit and proud fit and nobody has questioned it.

I don't think it has much to do with being swamped. It is more that ME/CFS is considered so unimportant by the medical profession that it is delegated to people who would struggle to cope with a serious medical commitment. Moreover is such a low priority for primary care purchasers that they do not mind if they are being sold garbage.

 

I did a preliminary search on Google and apoptosis has been linked to major depression. It's almost like pwME are BPS guinea pigs.

 

I recall thinking that when the NICE ME/CFS(?) Guideline was revised to reflect the (low/very low) quality of the evidence; there was a case to revise other NICE Guidelines i.e. which were based on similar (low/very low) quality evidence. Seems some/many(?) clinicians are protecting their career by moving folks between categories?

 

I can say from personal experience that Dr Jo Begent was an absolute disaster in our case. We are in the process of filing a formal complaint about her, but suffice to say that she appeared to simply not care. In and out of appointments on her phone, brushing off questions about possible experimental treatments, and implying that ME symptoms were actually caused by neurodiversity. She promised all sorts of referrals, then simply disappeared. No reply, no follow-up, no referrals, nothing. We hear from others in TRACCS that she is famous for not showing up to appointments, which may be a blessing in disguise (!)

 

I learned today (from a clinician working in TRACCS) that they apparently haven't implemented the NICE guidelines "due to a lack of resources". This was in the context of NICE-recommended care and support plans, which they said were not being prepared for pwME seen by TRACCS. This seems very problematic to me, and it makes me wonder what other aspects of the NICE guidelines are simply being brushed aside or ignored by clinicians who are obviously more comfortable with GET (or some slightly softer version of it) and deconditioning-based "treatment" models.

If they are openly saying they aren't implementing the NICE guidelines even 2.5 years after introduction, does this warrant an official complaint, or am I being naive to think UCLH would care?

 

It's BS - if it was lack of resources then 2.5yrs in they would 'only be able to provide 50% of what is needed' (or some other figure, and that would show either in numbers of patients or what they can offer to them)

No resource issue dictates you must enforce GET programmes and BS cfs-CBT onto patients.

 

I hope that they begin getting called out for thinking they can hide behind using that old chestnut even when it is a lie.

 

I think it is reasonable to say that there are no resources to implement care and support plans. If that means regular home visits over the duration of the illness it is way outside what any budget would cover. That sort of service, as for domiciliary care for anything else, has largely disappeared from the NHS. It is a much much bigger problem than ME/CFS.

The UCH team do continue to believe in the 'challenge' model of getting people better, but I think that is a separate issue. A major issue, yes, but not to be confused with lack o money to provide long term care.

The present situation really started in the 1980s, when hospital based domiciliary services were axed and taken over by community health authorities, now trusts or whatever. In 1982 as a hospital doctor I could visit patients at home and could ask occupational therapists and physios who had training in care of arthritis to visit too. That all stopped and care was transferred to GP surgery staff and community rehab units, despite the fact that traditional rehab units in the hospital system were being dismantled for not being evidence-based.

Things are not going to improve any time soon for people with long term disabling conditions requiring care from staff with special expertise. Labour are at least as keen on the GP centred model as Conservative. It is supposed to be justified by being more cost effective but it is the opposite because there is no effective care.

The world seems to be full of people making money rather than looking after each other. Everyone has shiny big cars but people are dying on trolleys in hospitals.

 

What worries me even more about both parties' NHS policies is the plan to increasingly "augment" GPs with unregulated physician assistants with a mere 2 years of training - unless they are very carefully supervised a lot is going to be missed and already anecdotes of dangerous practice are filtering into the media.

This. So much this.

 

And we're putting up with it, instead of marching through the streets.

 

Of course, we are living in times of endless budget cuts and there really aren't funds for anything above basic services (and often not even that). What they were saying was that even following the NICE guidelines to prepare a patient-led care and support PLAN was impossible, and this seems like pure obfuscation and, to be honest, deceit.

Even BACME has clear, if imperfect, guidelines and a template for preparing such a plan, which would at least allow pwME to be involved in deciding what they need and what will actually help them, and prevent the kind of gaslighting that seems the standard of care these days. The "challenge" model, gradually increasing activity (which is somehow not GET according to them), and endless hints that you just need to convince yourself that you can get better and you somehow will, this is what we are seeing.

A question for everyone here: If a young person with ME has managed to find a way to improve their own quality of daily life, reduce chronic pain and at least function in education (albeit mostly online), is it reasonable to demand, based on the NICE guidelines and principles of patient-centred care, that medical staff back off on their demands to increase in-person school? It seems verging on medical malpractice for medical caregivers to oppose such a demand, but that is what we are seeing.

 

Completely transparent BS. Not even bothered with coming up with a credible excuse. An average dog has better excuses in his head for why he ate out of the trash.

Some of it can be excused with this, such as home visits, but most of it is actually cheaper to implement than the old guideline, since it involves stopping to do things that are either useless or harmful, hence require fewer resources. At least 90% of the updated guideline requires no new resources.

It's general practice where it would require more resources, but even then only because the right to competent and appropriate health care has been systematically denied, which is of course cheaper, but immoral and technically illegal. Other than that, for hospitals it's only for taking care of the most severe patients, but even that is supposed to be covered generally, health care services are not supposed to let people starve to death.

Either they really don't think much of the intelligence of patients, or know they can BS without consequences so they don't bother, probably both.

 

I think they are counting on people being desperate, and too tired to fight them. I think they are going to find out the hard way that they messed with the wrong patients. I'm not letting this go away, and not letting them hide behind BS excuses.

Of course, it may be us that find out the hard way just how difficult it is to fight, but I'm not going to make it easy for them. I spent the better part of a decade in a totalitarian country fighting for people's health rights, and winning quite a few of the battles, so TRACCS doesn't scare me.

 

I am not sure that I have any confidence that a 'care and support plan' is of any use other than as a tool for healthcare professionals to manipulate the situation. I never gave patients a care and support plan, I just explained what I thought might help based on reliable evidence. Plans change all the time as things happen, but each time a proposal for care is made it should be recorded as a 'plan' that is desired by the patient. (The key point being that at no stage is a plan legitimate if it is not what the patient has asked for. We are long past the days when care was what professionals thought was good for people.)

But to an extent I think health care staff are morally and maybe legally obliged to provide a clear account of what their plan for care is and to have made sure that this is what the patient has asked for. Normally at least a summary of the plan would be the main content of a letter to the GP in response to referral.

In other words they are obliged to say what their plan is and, if asked, what the reliable evidence is for it being useful. And that does not include 'we have found it useful in our experience'.

Staff have no legal right to demand anything in terms of schooling. The most they can do is recommend increased in-person schooling, with, if asked, the evidence base for that recommendation. I am not sure what the 'demand' consists of by I would suspect it comes as 'you should do this' statements. That is not legally acceptable unless the evidence is presented. (And of course there isn't any.) Staff can reasonably suggest that in their experience people benefit from things like more in -person schooling but the decision as to what to do lies entirely with the patient and family.