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!?!

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