Weird NHS ME clinic referral form

I just remembered this...

Last year, I was given a referral to the local NHS CFS/ME clinic. They sent me a massive questionnaire to fill out. I never had an appointment with them in the end, because I left the area to move in with my parents. (I'm glad now I never saw them because I'm sure it would have been damaging.)

The questionnaire was mostly about symptoms, but there were some odd bits at the end... It asked whether you think that your condition is physical, psychological, or both! When I was filling it out, I thought they genuinely wanted my opinion on it... but now I am doubtful, haha. Is it their way of trying to find out whether patients are going to be resistant to the BPS method? Is it common practice for these clinics to ask this in questionnaires?

 

I actually think I do have it somewhere! Will look later.

I'm so glad I never got to the point of sending it in - I definitely wrote things on there, out of naivety, that would not have served me well to say at a BPS clinic.

 

@Sarah94 those questions on the form about what you attribute your symptoms to are well sneaky if you ask me
Not ok.

I'm glad you didnt go there

 

Found it.

It's loooong.

A load of questions about symptoms, which I think is mostly based on Fukuda criteria.
"Describe what happens if you push yourself too hard"
"Are there any other symptoms which worry you?"
Questions about mental health history - have you ever experienced depression? If so what triggered it?
Question about any other past medical history.
"Do you think you have CFS/ME?"
Do you feel that this illness is physical?
Do you think that this illness is a mental problem?
Do you think it might be a mixture of both physical and mental?
Option to write your thoughts regarding this.
What would you most like help with? (Options including: confirming diagnosis, relief of specific symptoms, advice on managing the illness...)
Space to write further comments about this.

Note: it was around May 2018 that I got sent this questionnaire.

 

My guess is that they ask this because older studies have claimed those who attribute their illness to a solely physical cause won't recover. It's an old idea.

 

Well, here's one way to respond...

https://www.youtube.com/watch?v=LbzaDt0IbF4

 

I got this at St Helier as well. And it asked other odd things Too but can’t remember

I also had to fill out the anxiety and depression questionnaire think it’s called GAD? The one usually used in hospitals / clinics. I had a high anxiety score because I have high anxiety which I’ve had lifelong, it’s not related to M.E but in my case they used that as a reason why I was ill.

 

That question is part of the 3Ps model. They don't use it to look at patient resistance but might use it to delve into irrelevant areas and excessively focus on psychological / social factors, or to focus on your (assumed to be incorrect) belief that a virus caused your illness. Basically linked to CBT.

 

I went through this face to face at a clinic. I was actually too ill to answer so many questions.

The extremely hostile occupational therapist appointment was a requirement for me to receive any treatment at all.

I just refused on the questions and said it is not relevant to the treatment.

The 3Ps form which the occupational therapist completed by verbally asking me the questions would have have way easier to complete on my own, but I was expected to identify "predisposing" factors as well as "perpetuating" factors - as if I was actually doing something to allow the nasty disease to continue.

I basically declined to answer which did not go down overly well but sure saved me some energy. Perhaps unsurprisingly that particular "clinic" only included a single doctor appointment - the one for diagnosis - which he messed up by inventing a term I had never heard of when I actually fully meet the ICC.

 

Well done for standing your ground @daftasabrush - it can be tough standing up to the kind of pressure they'll exert.

This is why I fill in the forms but in such a way as to make them useless, otherwise they'll try to fill it in for you on the spot. That's even worse - as they'll rephrase what you say.

 

Sounds to me like the various forms mentioned on this thread are just intended to give the therapists and doctors justification to continue gaslighting the patients. They certainly won't try to actually treat anyone.

 

Wonder how much these forms will change after the new NICE Guidelines?

 

I would imagine that they will probably change drastically, be a different colour and everything (once the old stock runs out).

Maybe even a different ID number.

But the questions, they were designed by 'experts', or at least approved by them, and seem unlikely to be changed without years of research, funding permitting.

Cynical? Me?

 

The old double interpretation con always works a treat.

A question that the patient can interpret in several ways.

If the patient answers it the wrong way then the therapist can interpret it in the way that best suits the clinics goals.

An excellent con worthy of the double glazing industry. Or estate agents.

 

i always put n/a next to obvious mental health fishing questions on hospital forms . the way they are worded just shouts bs to me .

 

I like to fill the space up. Depending on the space n/a is a good answer, other favourites are "ambiguous - do you mean xxxx or yyyyy?" , along with "absolutely none of your business" if there are questions about my sex life.

I also like to make sure they know I have a copy. By bringing it and going through my copy as they go through theirs. Just so they know there is a record of what I actually wrote.

 

I don't remember a questionnaire but at my first appointment at the CFS clinic a couple of years ago, the OT asked me in person if I thought my illness was psychological or physical.

I could tell that she wanted me to say psychological and I didn't want to be confrontational or difficult so I tried to explain that I think this question is quite complex. Is the notion of a mind-body divide outdated? I think so. Is there really any such thing as a wholly physical or wholly mental illness? Probably not. But at the same time, do we exist in a system in which 'physical' and 'psychological' labels are used and do these labels make a difference to our care? Of course.

If cancer, MS, heart disease etc. are considered 'physical' then it makes sense to label ME as physical. So, yes, I do consider my illness to be physical. But, I experienced trauma prior to onset and I can't rule out the possibility that that was a triggering factor (alongside other purely physical factors including a virus and a genetic predisposition). I acknowledge that stress can sometimes impact my symptom severity (as it can with other 'physical' illnesses). And I acknowledge that my mental health will affect how well I am able to manage and cope with my illness.

When I tried to explain this to the OT in a calm and reasonable way but she wasn't at all interested. She didn't care how I think about my illness, she just wanted me to say that it was psychological. I told her that I've had a lot of counselling and I consider my psychological health to be quite good. She said, 'You need to recognise that there's an emotional element to this illness if we're going to work together'. There is no evidence that this is true yet I knew that if I asked for evidence I'd be deemed a 'difficult patient' who didn't want to acknowledge my illness was psychological. It's a complete catch-22. I didn't say it was psychological, I think I said it was complex and she begrudgingly agreed to accept that.

I find it shocking that people who aren't even trained psychologists are in these positions of power and can make such sweeping statements the mental health of a person they don't even know. It's dangerous and also just incredibly ignorant. The OT wasn't able or willing to think critically about her position or even to explain it but demanded that I agree with her. She had much less experience of the illness than me but was not at all interested in listening to my perspective.

In the end over the course of several sessions I think I convinced her I wasn't 'difficult'. I expended a lot of energy showing her that I am a reasonable, sensible, maybe even likeable adult and so I 'earned' the right to talk a bit about my actual belief about the illness in a very tactful and sensitive way. I was the one who was doing the emotional work getting her to a place where I could gently begin to address, only slightly, the actual experience of this illness, without eliciting a defensive response from her.

She wasn't a bad person, I actually liked her a lot and she did help me in some ways once we'd agreed to disagree. Unfortunately, it was clear that her training was severely lacking and she'd become very attached to the one model of the illness that she'd been taught. We really need patients to be involved in training for people who work in these centers.

 

I believe that a 'correct' response, to the initial question, is to ask them why they believe in mind body dualism and whether or not they allow this belief to impact on their clinical decisions.

Then to allow yourself to be carried out of the building by security.

After all 'we' are accused of a false belief in mind body dualism, why should 'they' be allowed to get away with it, and implicate 'us' in their outdated belief system