Guidance for commissioners of services for people with medically unexplained symptoms - 2017

[Jonathan Edwards]

In the Netherlands we have SOLK clinics.

Ah, but I can imagine a Dutch clinic might be very civilised and friendly. Not much chance of that in the UK. Interesting though - I wonder how many people do go to these clinics and for how long.

 

[Esther12]

It wouldn't surprise me if many patients valued these sorts of clinics as a way of mitigating the sort of social problems caused by these clinics (and the work which leads to their creation).

Just being able to say 'the specialist I'm seeing advised me that...' can be a useful thing for people, or even just 'I've got another appointment with my specialist' can be signifier that one's health problem is in some way 'legitimate'. (I think that CAM can also be valued in this way, although in both instances the way in which this is interpreted will depend on how well informed others are). Having people in the medical profession act as if they respect you and want to help can be a powerful thing. Many patients have been so poorly treated and marginalised that even stigmatising quackery can be seen as valuable and a big improvement on what has come before.

 

[Valentijn]

Ah, but I can imagine a Dutch clinic might be very civilised and friendly.

Obviously you haven't met very many Dutch people

Generally speaking, you can expect a lot of practicality from a Dutch fatigue clinic (I didn't go to blatant a SOLK clinic), but not a lot in the way of friendliness. My experience was the Dutch clinics are pretty bad, because they are privately run to make money. The fee is paid before treatment, for 6-18 months of treatment at the one I went to, and they go to some lengths to deceive their desired customers before they sign up, such as by claiming to use the CCC for diagnosis (they don't).

When it was obvious that I would have no improvement to report, due to deteriorating enough that I had to cancel my further appointments, they responded by un-diagnosing me with ME and replacing it with a diagnosis of obesity, presumably so that I wouldn't muck up their claimed success rate. They also were doing some research there, which I had agreed to participate in, though I think it only involved a sleep study.

 

[Solstice]

Obviously you haven't met very many Dutch people

Generally speaking, you can expect a lot of practicality from a Dutch fatigue clinic (I didn't go to blatant a SOLK clinic), but not a lot in the way of friendliness. My experience was the Dutch clinics are pretty bad, because they are privately run to make money. The fee is paid before treatment, for 6-18 months of treatment at the one I went to, and they go to some lengths to deceive their desired customers before they sign up, such as by claiming to use the CCC for diagnosis (they don't).

When it was obvious that I would have no improvement to report, due to deteriorating enough that I had to cancel my further appointments, they responded by un-diagnosing me with ME and replacing it with a diagnosis of obesity, presumably so that I wouldn't muck up their claimed success rate. They also were doing some research there, which I had agreed to participate in, though I think it only involved a sleep study.

The people at Het Roessingh where I went to were friendly, untill one of the patients started opposing the treatment because it made her go bad quickly as opposed to lucky me where it took some time. The gloves soon came off and she was painted as someone that didn't want to get better trying to set off the other patients against her too(we were in groups of six). Didn't particularly like the atmosphere at that place anymore after that. But didn't realise the scope of the harm they were causing untill way way later.

 

[Invisible Woman]

I wonder how many people do go to these clinics and for how long.

Indeed. I wonder how they, and clinics here, classify people who drop out & simply disappear. My guess is if people just disappear they happily record that as being recovered. Rather than acknowledge that any benefits of going were quickly outweighed by the effort involved in attending , assuming there were benefits in the first place.

This would of course serve to make their clinic and treatment appear more effective than it actually is and sucker more patients into attending.

ETA typos

 

[unicorn7]

Ah, but I can imagine a Dutch clinic might be very civilised and friendly. Not much chance of that in the UK. Interesting though - I wonder how many people do go to these clinics and for how long.

I think I have the same view of the British, always very posh and polite

I really wonder too. Maybe they see different kind of patients, different illnesses, lots of burn-outs probably? I think such a centre is actually a good idea if the problem is more a "management" illness. You get psychological help, ergotherapist to help with energymanagment, physiotherapist etc. all bundled in one centre, with a doctor to oversee the process.

I did a rehabilitation within an academic hospital at the neurological unit. I really believed at that time that with proper rehabilitation from square one, I could get back in shape I got 5 sessions with a physiotherapist, who didn't listen to anything I said (and it cost my insurance 2400 euro). After those 5 sessions I was suddenly good enough to follow an out of hospital rehabilitation. I had one last talk to the rehabilitation specialist and was very honest about my disappointment and then of course she was not very nice anymore

 

[Inara]

In the Netherlands we have SOLK clinics. It means somatic unexplained bodily complaints

I saw one of those online. I think it was linked to Per Fink...

 

[Indigophoton]

Indeed. I wonder how they, and clinics here, classify people who drop out & simply disappear. My guess is if people just disappear they happily record that as being recovered.

They sometimes blame the patient. One of the other patients at my local NHS clinic dropped out because they wanted her to give up a private clinic she was finding helpful. She subsequently saw a letter written to her GP by the NHS clinic that failed her, and blamed her, for opting out of their services.

 

[Invisible Woman]

They sometimes blame the patient. One of the other patients at my local NHS clinic dropped out because they wanted her to give up a private clinic she was finding helpful. She subsequently saw a letter written to her GP by the NHS clinic that failed her, and blamed her, for opting out of their services.

And that's a nasty little revenge for some of 'em. You don't improve, you won't even just say you've improved and they write to your GP telling them you just didn't put the effort in, or its purely psychological in your case etc etc. This follows you for the rest of your life.

I know of one woman who decided after a year or so that therapy (she was paying for) wasn't actually making much difference. She thanked the therapist and explained she had decided to quit. Her therapist promptly wrote a revenge letter to her GP, unnecessarily including some extremely personal & sensitive information. When she complained, she was told that she had no grounds as she had given the therapist her consent to contact her GP, if necessary, at the start of treatment.

 

[chrisb]

She thanked the therapist and explained she had decided to quit. Her therapist promptly wrote a revenge letter to her GP, unnecessarily including some extremely personal & sensitive information.

Well what does one expect? The main purpose of therapy is to satisfy the financial and emotional needs of the therapist.

 

[JamBob]

I think these services won't fail because they deliver on their primary aim: to rid GPs of their annoying "heartsink" patients whose problems they can't explain.

The focus in the literature seems to be on the cost benefit and time-saving gains for GPs who refer to these services. As GPs run the commissioning groups I'm sure more and more of them will be all over these clinics.

The MUS clinics run by the Tavistock in London (Camden and Hackney) seem to be really popular with NHS GPs on social networks like twitter. I often see them sharing the details about MUS, MUS conferences and how common MUS is in their patients. GPs on Twitter also seem to really like Jon Stone's Neurosymptoms website and share the site with each other so that they can use it to "explain" MUS to their patients.

This is an example of the kind of "training" London GPs are getting on MUS (not a recommend obviously! )

https://static1.squarespace.com/sta...1840777398/MUS+training+for+GPs+TH+030817.pdf

 

[Jonathan Edwards]

I think these services won't fail because they deliver on their primary aim: to rid GPs of their annoying "heartsink" patients whose problems they can't explain.

The focus in the literature seems to be on the cost benefit and time-saving gains for GPs who refer to these services. As GPs run the commissioning groups I'm sure more and more of them will be all over these clinics.

The MUS clinics run by the Tavistock in London (Camden and Hackney) seem to be really popular with NHS GPs on social networks like twitter. I often see them sharing the details about MUS, MUS conferences and how common MUS is in their patients. GPs on Twitter also seem to really like Jon Stone's Neurosymptoms website and share the site with each other so that they can use it to "explain" MUS to their patients.

I am sure that is spot on in terms of popularity with GPs. And no doubt for a while it will work. I may be wrong but I just have a feeling that sooner or later when enough stand up comics have made jokes about MUS clinics that the whole things will collapse. Of course they may then be replaced by something with a slightly cleverer name on so on.

 

[Sly Saint]

I just have a feeling that sooner or later when enough stand up comics have made jokes about MUS clinics that the whole things will collapse

or people who are actually ill start to deteriorate or die

 

[Viola]

I actually think this guidance will fall completely flat. No patients are going to want to be referred to a clinic for MUS. Moreover, no psychologists or OTs are going to want to work in a clinic for MUS. Visiting and working in an ME clinic at least gives some sort of sense of purpose.

I don't they would have any major problem recruiting people to work at a MUS clinic. It might not be most serious clinicians first choice, but we know there are plenty of idiots/careerists out there who don't really care and if there is a career to be made out of MUS they will be like flies to shit.

 

[Wonko]

or people who are actually ill start to deteriorate or die

Won't that just highlight their effectiveness? As it's unlikely they (the people that die) will have MUS on their death certificates, so every patient dying will be assumed, officially, to have recovered, in the only sense that matters, to government, as in no longer needing "treatment".

Or am I just too cynical?

 

[chrisb]

Or am I just too cynical?

Never let it be said.....

 

[Viola]

I think you are too optimistic. The government introduced "fit to work" assessments that have found terminally ill and severely disabled people fit to work and taken away benefits. Thousands have died having been found fit to work. I haven't seen much in the way of outrage from the media. I know there has been some but it's like any news. If the government can survive it appearing in the news for a few days the media moves on and the deaths of sick and disabled people become yesterday's news.

I agree that I don't think the policy would necessarily fail quickly, but the misdiagnosis issue would affect a much broader range of the community, I think, than the benefits issue, and I think there would be a greater scandal around it.

The benefits issue will mostly impact on poorer people, and better off people can say to themselves that it won't affect them. But a misdiagnosis issue could affect anyone or their friends and family (though with the privatisation of the health system some people will be able to spend money to get away from crap doctors, but I still think the misdiagnosis issue will affect most people than the benefits system).

 

[unicorn7]

I think we are underestimating the appeal psychosomatic approaches have on people. It's not just crazy doctors or an easy way to get rid of people.

I have friends who think every illness is linked with a certain emotion. I know people who think they can beat cancer with the right mindset, yoga or meditation. The theory that trauma "comes out" as a physical ailment, doesn't sound crazy to a lot of people. And I'm surrounded by university schooled people, primarily doctors and psychologists.

It is actually a very popular approach in alternative therapies and a lot of people like the total view/holistic approach. I only think most people would like it offered as a complimentary service or a service offered because there is no real solution yet, not as a cure.

Even the people who think meditation and yoga are critical in cancer treatment, don't want that as their only treatment. If you would give them a choice, I do think they would take the chemo over yoga

 

[Arnie Pye]

I read this on another forum today - a thyroid forum. The post was not written by me. It describes perfectly, far better than anything else I've read recently, what tactics are being used to deny patients treatment. No doubt the author will be denied treatment for her thyroid condition or will be told she needs help for MUS eventually. I've had many appointments like the author of the post describes, and I can only assume that doctors get training in how to deny the patients' reality, keep them off balance with random dismissals and insults, and above all, resist, resist, resist helping the patients. Perhaps @Jonathan Edwards could comment?

I've put in paragraphs. The original post was a very long wall of text. I know some members won't be able to read it because it is so long.

These observations and comments are timely - I was wondering about what to do about my experience during last week's New Patient appointment. To make the most of a 20 minute appointment, I made typed notes (1+half A4 pages) to give to my allocated doctor.

On entering the surgery, the first thing he noted and commented on as I sat down, was that I wasn't wearing dirty trainers. In his view, healthy patients wore dirty shoes because they took exercise. The analogy I get. What he didn't get was that I was wearing a new pair of boots for the first time, bought in the January sales to cheer me up after a rotten Christmas, to coax me outside - Hypo symptoms being aggravated by by stress of moving house.

Once I was sitting down, the doctor refused to take my notes but made me read them out loud to him, after which he told me, 'the problem is, you're fixated with Thyroid. It's not your Thyroid. It's something else'. He wouldn't confirm what the 'something else' was, but confirmed the only reason he was following up my request for an Endocrinologist appointment was to prove to me I did not have a Thyroid issue.

He then wrote me a Sertraline, antidepressant prescription, which I refused, confirming this was the second time in six months I had refused a Sertraline prescription and it was on record I do not want to take antidepressants. Sertraline is generally not recommended to patients taking Levothyroxine, which includes me.

2017 blood test results and prescribing outcome are on my records, I can't understand how a GP could ignore my record of diagnosis in March 2017, when my TSH was 5.5 and I required a loading of B12 injections. This new doctor claimed, 'Oh, your B12 was OK', yet when I confirmed my symptoms included arm tingling, dizziness and palpitations, he told me: 'Well, you would have done,wouldn't you.'

Prior to moving house, my last TSH record was 1.04 in August 2017. I am having my first blood test tomorrow following a break between GPs. T4, T3, TSH, B12, Folate and Ferritin have been approved - I asked for Vit D, but don't think it's included. Following tomorrow's tests, I revisit the surgery on February 8 to discuss results. In the meantime, I think it would be sensible to arrange a full thyroid profile privately through one of Thyroid UK's recommended labs as a comparison.

Last week's appointment was a shock and upsetting setback. The following day I decided it would be best to change this allocated doctor and enquired after a lady GP. She had places on her list and fortunately there was a cancellation. I saw this lady doctor on Monday, only to be told her list was full - though she is happy to go through test results with me on 8 February.

I've never felt as isolated or frightened for my health since underactive thyroid was first diagnosed last March. 2 junior GPs said they lacked authority to prescribe Levothyroxine - one suggested she doubted I'd get it. I saw three GPs before a Partner prescribed a starting dose, but she was part-time and inevitable gaps between appointments occurred. Meanwhile, I researched and the facts were scary, I continued to feel under medicated and I was having to fight for treatment when I least felt like it.

Along the way, I've experienced upsetting GP appointments; bullying surgery receptionists who argued against providing me access to blood test results; pharmacists blaming me for incurring additional costs to them by my requesting specific generic brands. On one occasion a pharmacist could only produce 2 single 100mcgm Actavis Levothyroxine tablets to dispense to me, despite having received my prescription on Monday - I was collecting on Saturday. Finally my suggestion of accepting the prescription in 50mcgms rather than 100 mcgms was accepted, but my unnecessary stress was witnessed in public.

In my experience, availability and general supply of Levothyroxine appears to becoming a real issue in places like the small Gloucestershire town where I lived last year and Dorset, where I now live. I wonder if anyone else has had the same problem. I have left one national pharmacy as they no longer stock Actavis and joined Boots, where the pharmacists have been really helpful and understanding.

Originally, it was bad enough to discover T3 is no longer routinely prescribed at GP level, to then experience resistance and serious setbacks in acquiring Levothyroxine is a serious concern and must be contravening a code of ethics when a drug is essential and for life. At nearly 65, I recognise I'm a patient who comes at a cost. Now I've had time to reflect, I fear I might be facing a new strategy employed by the GP I met last week: 'You're fixated with Thyroid. It's something else.' I dread to think what's on my record. He didn't take my blood pressure. He didn't once ask how I was.

The original post came from this thread on another forum :

https://healthunlocked.com/thyroiduk/posts/137157916/epidemic-of-useless-endos-and-gps

The forum has many posts discussing people being taken of Levothyroxine. One woman went into myxoedema coma because she wasn't supplied with any meds for two months after having her thyroid killed off with radioactive iodine. Lots and lots of people who have been on Levo for many years are having it taken off them so that doctors can discover how much thyroid function the patient has left. It only ever seems to happen to women, and they are being treated like lab rats to save a few quid.

 

[Inara]

Won't that just highlight their effectiveness? As it's unlikely they (the people that die) will have MUS on their death certificates, so every patient dying will be assumed, officially, to have recovered, in the only sense that matters, to government, as in no longer needing "treatment".

Or am I just too cynical?

Just great @Wonko!