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UK: University College London hospitals (NHS)
- Thread starter Suffolkres
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Sly Saint
Senior Member (Voting Rights)
job ad
Highly Specialist Occupational Therapist
Employer
University College London Hospitals NHS Foundation Trust
Highly Specialist Occupational Therapist
Employer
University College London Hospitals NHS Foundation Trust
https://healthjobs.bmj.com/job/197436/highly-specialist-occupational-therapist/
BazzaBoyle
Established Member
I've just been seen at RLHIM and have finally got a diagnosis of CFS and Fibromyalgia. It was quite a long phone appointment with lots of scientific guff I couldn't understand. A lot of it sounded like pure quackery to be honest. And now I've been sent on my way with referrals for Physio, CBT and Acupuncture. I really don't know what to make of it all.
Jonathan Edwards
Senior Member (Voting Rights)
It's a disgrace. And I am sorry that it has happened in my university centre.
RLHIM made it clear that they were just going to do their own sort of quackery in a mission statement not long back. How it is justified within the NHS I have no idea.
josepdelafuente
Senior Member (Voting Rights)
Ahaaa I think your instincts are right about some of it being pure quackery.
Don't feel any pressure to go through with any of those referrals if they feel too useless to you. Which doctor did you see? We can chat more on private messages if that's better
Peter T
Senior Member (Voting Rights)
Give the NICE guidelines should an English institution that is part of the NHS be making a diagnosis of CFS rather than ME/CFS?
livinglighter
Senior Member (Voting Rights)
I wonder if RLHIM, as well as many other parts of the NHS, has determined CFS is persistent chronic fatigue R53.8.
BazzaBoyle
Established Member
To be honest, I had half expected the approach to be a bit quirky, having read around about RLHIM, but even I was shocked. It was a 60 minute appointment, and 55 minutes of it was pure "scientific" waffle without ever getting to the point. I literally had to interject at the end to ask what he was diagnosing me with!
If I have the strength, I think I would prefer to "play ball" and at least give these things a try so that I can definitely say that I've tried and it didn't work. Some doctors can be really trigger happy with the "Patient declined treatment" attitude in letters which could be really detrimental if I need to use them as evidence for DWP. But I certainly won't do anything that will make me crash.
I don't want to go into too much detail here in case the consultant in question happens to be on the forum. But I'm happy to PM with anyone who wants to know what the consultant had to say.
My brain was so scrambled by all the nonsense he was spewing that I didn't have the energy to challenge him. Also, as I have co-morbid Anxiety and Depression, I was worried that he might try to lump everything under mental health, so I was kinda just happy to get any diagnosis.
If the NHS is funding "Physio, CBT and Acupuncture" i.e. for MECFS/contrary to NICE Guidelines then surely they are not using NHS funding as intended? I'd suggest contacting the UK charities i.e. asking them to raise a query with NHS England - NHS funding provider.
@livinglighter has posted - this may be a bit of the jigsaw I'm missing - e.g. you haven't been diagnosed with MECFS and therefore, fall within another NICE Guideline [which recommends "Physio, CBT and Acupuncture"]?
Peter T
Senior Member (Voting Rights)
It is so hard both to deal with the stress of such situations and the inherent power imbalance. My comment was not intended as a suggestion you should take action @BazzaBoyle , rather it was directed at the wider forum as a discussion point. At the time all you can do is focus on achieving you main objective, ie getting a usable diagnosis. Sorry if my comment felt like additional pressure.
I get what you’re saying @BazzaBoyle about doing the recommended treatment so it doesn’t mean you’ve got negative letters on your medical record with a view to dealings with DWP. I did the CFS clinic course in 2016 so my employer couldn’t say I wasn’t getting available treatment & had to give me time to try to get back to work.
I would make 2 points from my experience.
If they (therapists you’re working with) expect you to do stuff that’s too much you don’t have to actually do what they suggest. And you don’t have to tell them you didn’t or only did a bit of it. Some white lies to preserve yourself are valid in a situation that’s verging on coercion.
second be alert that underlying all of the old approach not just anything tagged as exercise or physio is getting people to do more activity overall it’s not always obvious though. In fact just adding those appointments on to a normal week is an increase in activity. I had to reduce other activity (part time work) to be able to do the course day.
Stuff about setting your personal priorities and making a plan to do stuff towards those priorities is one to watch out for. Decluttering my house was my priority - I did do some at first but dropped it without alerting the therapist
I did keep attending the course without doing any more than that and a letter to the GP went to say that I’d completed it.
eta I did the decluttering a couple of months later on my own pace when I had got back to my normal after attending the course
I would make 2 points from my experience.
If they (therapists you’re working with) expect you to do stuff that’s too much you don’t have to actually do what they suggest. And you don’t have to tell them you didn’t or only did a bit of it. Some white lies to preserve yourself are valid in a situation that’s verging on coercion.
second be alert that underlying all of the old approach not just anything tagged as exercise or physio is getting people to do more activity overall it’s not always obvious though. In fact just adding those appointments on to a normal week is an increase in activity. I had to reduce other activity (part time work) to be able to do the course day.
Stuff about setting your personal priorities and making a plan to do stuff towards those priorities is one to watch out for. Decluttering my house was my priority - I did do some at first but dropped it without alerting the therapist
I did keep attending the course without doing any more than that and a letter to the GP went to say that I’d completed it.
eta I did the decluttering a couple of months later on my own pace when I had got back to my normal after attending the course
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BazzaBoyle
Established Member
No I didn't take your comment that way. And you're absolutely right, I just wanted to get a usable diagnosis and didn't want to rock the boat.
BazzaBoyle
Established Member
Yes I agree. I'll be going into it with my head screwed on (other than the brain fog) so I'll scrutinise every appointment and request to make sure that I'm not being coaxed into something harmful. Fortunately they are telephone appointments for now so I should be able to cope.
I currently have LCWRA and PIP, though they were previously assessed based on my Anxiety and Depression diagnosis. I've seen so many bad experiences for pwME with DWP so I want to ensure my case is iron clad when it comes to reassessment.
All the best with it @BazzaBoyle feel free to message me if you need a sounding board while you’re going through the appointments 
livinglighter
Senior Member (Voting Rights)
I can understand acupuncture being provided for unspecified Chronic fatigue R53.8. But not for Chronic Fatigue Syndrome G93.32. It seems as though clinical care is based on something completely different.
I suspect it might be the missing piece of the puzzle based on my own irrational experiences within the NHS, plus the inability to acknowledge PEM and all the controversies surrounding PEM being explicitly included in the new ME/CFS guideline.
Chronic fatigue R53.8. doesn’t have PEM and for a very long time, BPS fanatics have been calling it chronic fatigue syndrome as well.
I’ve noticed the term ME/CFS isn’t even being used within the NHS and specialist-led activity management is still being recommended as a way to prevent deconditioning as a treatment.
It now comes across to me as if some health professionals are diagnosing, treating and communicating about a completely different illness.
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It is deliberate obfuscation. One of their oldest and most persistent and effective tactics.
In order to treat, someone they need to fall within a descriptor and that descriptor needs to have a treatment pathway. I'd be inclined to ask the UK charities to get to the bottom of this.
livinglighter
Senior Member (Voting Rights)
These assumptions may need its own thread, but I think it could be part of why the NHS won't include PEM on its website. Are NHS staff even diagnosing pwME with ME/CFS? My diagnosis reads standalone Chronic Fatigue Syndrome……
GPs tend to refer patients to fatigue clinics based on patient reports of persistent fatigue. They seem uninterested or bewildered by the many other symptoms.
My experience of fatigue clinics was the whole thing is about fatigue/stress/maladaptive coping management. The staff were uninterested in or didn’t understand many of the other symptoms. Sometimes, it seemed as if the protocol was to listen to a patient complain of symptoms and provide a listening ear or reassurance and answers that meant symptoms were not caused by physical pathology. Something that you might expect to take place in a FND clinic…..
I think it is also part of the reason why there is a typical pattern of pwME being seen by other specialities then having their CFS diagnosis questioned. ME/CFS symptoms are not the same as CF symptoms and the devil is in the detail, which other specialities are familiar with.
GPs tend to refer patients to fatigue clinics based on patient reports of persistent fatigue. They seem uninterested or bewildered by the many other symptoms.
My experience of fatigue clinics was the whole thing is about fatigue/stress/maladaptive coping management. The staff were uninterested in or didn’t understand many of the other symptoms. Sometimes, it seemed as if the protocol was to listen to a patient complain of symptoms and provide a listening ear or reassurance and answers that meant symptoms were not caused by physical pathology. Something that you might expect to take place in a FND clinic…..
I think it is also part of the reason why there is a typical pattern of pwME being seen by other specialities then having their CFS diagnosis questioned. ME/CFS symptoms are not the same as CF symptoms and the devil is in the detail, which other specialities are familiar with.
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