Just been to visit my GP. (A primary care doctor, for those not in the UK – basically the “family doctor”). He is the one I have (had) settled for from the three available at my local doctor’s surgery to be “The One”. So I went in and tried to talk to him about what to expect from a GP and ask him if he is willing to be “The One”. He turned it around and asked what I want from a GP, and I said I wanted someone to have a broad overview of my situation and I wanted to be able to discuss symptoms even if there was no obvious treatment, and that I wanted to understand my symptoms as well as possible. Also that I was not looking for a drug for each thing, more the understanding. This may not have come out very clearly, or actually be the coherent description of what I do want/expect, but I was not prepared for the question, or feeling very articulate. I still don’t know what he feels he can offer, but I am getting an inkling.
He basically responded by saying that he cannot help me with the understanding and needs to refer me to the specialists for that. He says my muscle issues sound like ME so I need to see the ME/CFS specialist for that. That is fine, but I voiced my concern that he would only want me to go back to the CFS Lifestyle Management Group and that I do not want to go back, as I felt I had taken what I could from it and going to appointments is hard. He gave me a long lecture on being open-minded (including an analogy to driving a car and building up bad habits). I tried to clarify my experiences (as surely I know more about them than he does!) but to no avial. He just wants me passed on to someone else, it seems.
He also said that this CFS specialist can refer me to the Pain Management Clinic (PMC), as if he (GP) does it and I just turn up they will not know what to do with me as general approaches won’t be specific to my condition, but if the CFS specialist refers me it will be different (I am not sure about this logic – it’s just a referral letter). Seeing as the suggestion came from the POTS specialist, that means I am now seeing three people before getting to see that PMC. Wierd.
He did not really respond to me wanting someone to have a broad overview of my condition. When I was trying to answer his question about expectations, I gave him the example of my nerve pain and he cut me off saying he wanted general, not specific expectations. Hello? Let me finish my sentence. Try to understand what I am saying. Understand that I have cognitive issues. Stop trying to rush me into conforming to your model of what the conversation should be.
This was not helped I think by the fact that we had booked a double appointment but the receptionist had obviously not registered this so we had the impression we had longer than he thought. He started talking about booking a double and we said we had and then he said we needed to repeat our request to make sure (another lecture given) as if it was our fault, when my partner says she was very clear about it.
I also got the lecture I have had before from GPs as I mentioned I had seen nerve pain talked about in relation to POTS on a forum. Instead of trying to understand why I might use the internet, or giving me credit for being an intelligent person and being able to distinguish opinion from fact etc etc, I got the patronising talk about the dangers of finding information on the internet. If he is so uninformed (says he does not know that much about ME) when where am I supposed to go? Eh doc? I think GPs should know more about such a common condition and frankly, they should go online and read some recent research, as they are obviously not getting very good info from the BMJ/NICE.
He did say he was happy for me to give him supporting info when he had to write reports for benefits etc so that he has an idea of my situation, and instead of saying he would like to know more about it in person, he started on about the double appointments, how many hours he works, how he is not always available! Ok then.
So I have a referral to the CFS specialist and I am to go back for a double (repeat DOUBLE!) appointment in a month. While I think he is happy to see me more often, he certainly has his own communication style which is not supportive or condusive to building the kind of relationship I would like, you know, where I am listened to!?!
9 comments
Comments feed for this article
October 23, 2010 at 4:04 am
alvason
What a pickle! Sorry for you with all this Ashy! Best wishes as always!
Adam
October 23, 2010 at 5:44 pm
ashysheela
thanks adam
October 23, 2010 at 5:42 pm
cusp
Is there NO-ONE else you can see at your GP Practice ? He sounds so intolerant and narrow in his view — even worse than my GP.
I think it is true that most GPs respond to PWME with a sigh….of desperation, resignation, exasperation ….because they just don’t know that much, and since the whole situation around M.E. is so problematic and full of arguments and indecision, and GPs have so many other conditions which they feel they CAN do something about, they’d rather concentrate on those. In brief, in a system that’s so pressurised, they’d rather take interest in people who have conditions they feel they can do something about. M.E. is just too much trouble.
I don’t know if you/we will ever find a GP who will have or be interested in having a ‘broad overview’ The allopathic model just doesn’t work like that. GPs seem to be trained to look at symptoms seperately…compartmentalised with a drug or whatever to solve that particular problem rather than looking at how one symptom relates to another or how a symptom can be one part of a much bigger inter-related system/picture.
Ever looked in the cupboard of an elderly person ? Ever seen the amount of drugs that many older people take ?: one pill for this, one pill for that, one pill to counteract the side-effects of the first pill and so on and so on.
This is the reason that I have kind of given up on allopathic medicine for my symptoms because there just doesn’t seem to be an understanding of M.E. in particular or, if looking at symptoms, the way one relates to another or the way environmental or emotional issues may impact on one’s general condition.
In the meantime, from reading this post I’d suggest you look around for someone else who will at least understand that you need time and sympathy, respect and a GP who is interested in what you say and what you might discover about your own condition even if s/he will or cannot. I do at least (most of the time) get that from my GP…which is why, in the end, I have stuck with him despite the difficulties
October 23, 2010 at 6:00 pm
ashysheela
No, there is his wife, who assumed my partner was my mother and pissed me off as well as being quite like him in approach; then there is one other doctor whose tag line seems to be “ooh i don’t know” or ” that sounds complicated”. While she is sympathetic she comes across as having no knowledge and is not willing (able!?) to learn (I had to use half of two consecutive appointments explaining POTS to her – and while much time passed between said appointments, I feel that was unnecessary really once there is a patient with a condition at the practice, they should learn about it).
I would sincerely like to give up on all these appointments and just focus my energies on other things, but certain symptoms have just been so severe that really I have had no choice but to turn to them. I think you are right about the overview, and that they just focus symptom by symptom. I am also concerned that my last DLA application was scuppered largely due to my GPs input (or lack of it) and I would like to find someone who will gain enough understanding to write something better next time. If they can’t help us be well, it is the least they can do.
It is interesting to know what people feel they get from their GPs as it helps me to voice my own needs (to myself so far!) and also get expectations into perspective, and really I feel that I am not expecting miracles and am being fairly realistic. Your list is inspiring – i am certainly not getting much sympathy, respect or interest shown. I would take that!
I am going to have to move surgeries, and aim to try to talk to them before signing up. While hard to judge before getting to know them it is all I can do really. Thanks for your comment, it will help me articulate myself when I talk to them – I am writing a list of things I would like to get from a GP in preparation…
October 24, 2010 at 1:55 am
Dominique
My gut was just tightening up when I read your post! Errr! I was thinking at my last appointment when I told my doctor I could take the medication he mentioned because it caused SEVERE leg cramps and pain (even in my toes and ankles). His response was, its your legs or your lungs.? I was like, uh…no. Then he told me this horrible story about a woman who took some herbal product and ended up in the emergency room on a ventilator. When I left, I just thought, how stupid do these doctors them I (we) am (are)?
I’m so sorry you had to deal with this. It’s odd to me but this lack of compassion seems to be growing in the medical field everywhere?
October 25, 2010 at 10:10 am
ashysheela
yes, I think the good ones are a dying breed…
October 31, 2010 at 12:43 pm
Susie
Hi Ashy,
I am Australian but lived in the UK for several years and was diagnosed with CFS while living in London. I have had so many similar experiences with GPs – it’s incredibly frustrating.
I’m not sure where you are in the UK – if London is accessible for you and you’re being referred to a specialist I would whole heartedly recommend Dr Gabrielle Murphy at the Fatigue clinic at the Royal Free.
Don’t hesitate to email me if you’d like more info or a general chat 🙂
Susie
November 5, 2010 at 8:33 pm
Maija Haavisto
Doctors suck. That’s just how it is. 95% of them are assholes.
I think you should show your doctor my book, http://www.brokenmarionettebook.com Just don’t tell him you found it on the Internet, say it was in a bookstore…
September 17, 2014 at 10:46 pm
Sandy
Oh, I really empathise with all the posts I’ve read! The GP visits (and the patronising lecture to stay away from research on the internet) , the complete wiping out after a psychologist visit, the frustration and the grief.
I did read Jon Kabat-Zinn’s book ‘the full catastrophe’ and gained a little from it, Toni Bernard’s book ‘how to be sick’ helped more.
I spend my energy on massages, infra-red saunas, yoga classes and seeing friends – all things that ‘give back’ energy. After traipsing round at specialists and trying acupuncture, kinesiology, etc, I haven’t given up hope, just trying to live a little better.
Hope you are having a good day.