General tips for pwME when registering with a new GP in UK

[josepdelafuente]

Hey all,

I've recently moved to Hastings, my last GP practice in London were completely useless, I really had to fight every step of the way and very insistently request blood tests / referrals based on my own research, I was always seeing different locum GPs who were all similarly uninterested in really knowing anything or doing anything about my ME - when I registered there in 2018 and had an inital check-up with the practice nurse I told the nurse about my fatigue symptoms etc, and in my first appointment with a GP after that, I did the same, but it still took me really chasing the practice a lot and eventually spending a load of money on a private Harley Street endocrinologist, who made a diagnosis and wrote to my GP, for me to finally get an 'NHS' diagnosis from the GP (tbh I need to go back and check what the GP actually wrote on the fit notes). That was in 2021.

All of which is not to complain per se - more to say that I'm planning to register with a new GP here in Hastings, and not really sure how to approach it! I almost want to ask straight off the bat - "do you understand ME as a biopsychosocial illness" or something like that... but not really sure how to word it, who to say it to, how it would go down etc...

Also a part of me would like to do some more investigations (following on from some of the discussions in other threads on differential diagnoses), but again not sure best way to approach that with a new GP practice etc...

Any thoughts / tips / experiences welcome!

Thanks!

 

[Trish]

Perhaps ask whether they have read the new ME/CFS NICE guidelines. Also find out whether there is a local ME group who can advise on which local GP's are supportive.

 

[InitialConditions]

You might be best seeing a few different GPs in the practice before settling on the least worse! I was once thinking of changing practices and so rang the potential new place and asked if any of their GPs had experience or interest in ME/CFS. The answer was of course 'no'.

 

[Andy]

Sadly I have never found any GP to be of any use (in regard to my ME). The best I've found is one who comes across as sympathetic enough, but who is extremely wedded to the GET/CBT model and who can't understand the concept that to maintain what level of functioning I do have I currently have to remain almost exclusively home bound. Fingers crossed everybody else has better luck than me.

 

[Florence]

I'm fortunate in having a GP who is broadly sympathetic.

If I ever had to change GPs I would approach a new surgery well-prepared and with specific expectations.

At an initial appointment I would present them with the NICE guidelines and copies of key relevant medical reports. I'd ask them if they had previous experience of patients with ME. If they seemed unaware of the issues I would point out key parts of the guidelines, perhaps those that say that there are no treatments, that patients are often disbelieved, and which lay out the principles of energy management and the dangers of not following them. I would explain that I am not expecting miracle cures from them or anyone else but need to be supported in the management of my condition and may also periodically require specialist referrals. I'd make my judgement on whether to register based on their response.

 

[JemPD]

I would explain that I am not expecting miracle cures from them

I must say that every medical interaction i have had in which i have made a point of STARTING with that, has gone better than where i haven't, so i can certainly second that advice.
We shouldnt have to tiptoe around their insecurities & ego, but what should be & what happens in reality are usually not the same, in any area of life.
My best medical relationships are ones where i have approached with a 'look i know you havent got a miracle cure/magic pill/magic wand' etc, but i was hoping to get your support with _____

good luck.

Also recommend finding the local support group ask them who is good/who to avoid. The MEA have a list of groups & cntact details on their website

 

[hinterland]

Whenever I’ve moved to a new GP practice I’ve always asked if any of the doctors have a special interest in ME/CFS. That might have been a mistake — it’s becoming apparent that an uninformed (but kind) doctor is better than a misinformed one.

An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis

The audit raises serious issues regarding the ability of doctors to correctly identify, diagnose and manage patients with ME/CFS. It is alarming that 98% of doctors believed Graded Exercise Therapy (GET) is a suitable treatment. The few doctors who had expressed confidence in diagnosing or dealing with ME were found to be wholly wrong in their understanding of the nature of ME, its diagnostic criteria and its treatment. Also concerning is the fact that none of the doctors who had had teaching on ME, or experience of ME patients, knew that ME is purely a physical and not a psychological illness, compared to 40% among those who had never received such teaching or experience. This begs the question of what they were being taught about ME.[unquote]

 

[JemPD]

Whenever I’ve moved to a new GP practice I’ve always asked if any of the doctors have a special interest in ME/CFS. That might have been a mistake — it’s becoming apparent that an uninformed (but kind) doctor is better than a misinformed one.

An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis

absolutely, a GP with 'special interest' could be a dangerous nightmare. Since most of the medical education/info out there generally is pretty heinous, i'd far sooner have kind, supportive, ignorant. Than so-called well informed.

 

[hibiscuswahine]

I am not in the UK, so things could be different, but I would suggest once you have found a “recommended” one, that you take a summary of all your blood tests, the current MEaction’s (Dr Shepard’s) list of differential diagnosis (or NICE) and talk about whether your bloods have excluded all of them. Also to get an explanation about any that are mildly abnormal like ANA’s, platelets etc

This is at least the minimal requirement from a GP (imo as a non-GP doctor in NZ). Time is a big factor in consultations so this could be the first step to getting to know one another and important these are all excluded. It is also useful to have a physical examination to exclude things like POTS or OI.

If these have been done and once some rapport/collaboration built, then show him/her the research and conditions you are concerned about, what symptoms you share and their history (including travel) and allow for a physical examination so he/she can consider referral to an appropriate specialist.

I tend to write everything down before seeing my GP in a small summary as my cognition is not good and I like to jot down what she says and her findings.

 

[bobbler]

You might be best seeing a few different GPs in the practice before settling on the least worse! I was once thinking of changing practices and so rang the potential new place and asked if any of their GPs had experience or interest in ME/CFS. The answer was of course 'no'.

Agree with this.

Worth doing one appt anyway at least when you are first in to check they've got all your repeat prescription meds and flags/dropdowns that you might need sorted/signed off. So you can perhaps suss someone out then without really needing to mention/dwell on the ME bit.

I've tended to go for the younger ones in a perhaps misguided guess at maybe they might be less 'old guideline' and importantly noticed the newer GPs you are more likely to get the same person if you want to build up a relationship (fewer oldies who've been seeing them for decades queuing for them, potentially more hours seeing patients vs CCG or partner work).

That might be nonsense of course. I have absolutely no clue in telling whether I can trust anyone in reality and have historically been completely unable to spot the nice to your face people in any context.

I wouldn't worry about the special interest bit as it goes both ways, and if you want to look into other things anyway.. if/when you need to ask for ME-related things I find it easier if it comes from the consultant and then talk to that, and it probably works better not having a GP that thinks they know better at that point but is learning about 'your specific condition' anyway.