UK: University College London hospitals (NHS)

I haven't looked into it, but there will be a health commissioner who should investigate systemic failure to implement NICE Guideline --- NHS policy!

 

job ad
Highly Specialist Occupational Therapist
Employer
University College London Hospitals NHS Foundation Trust

https://healthjobs.bmj.com/job/197436/highly-specialist-occupational-therapist/

 

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.

 

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.

 

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

 

Give the NICE guidelines should an English institution that is part of the NHS be making a diagnosis of CFS rather than ME/CFS?

 

I wonder if RLHIM, as well as many other parts of the NHS, has determined CFS is persistent chronic fatigue R53.8.

 

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"]?

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.