For those who kindly read and replied to my previous post about my disastrous gp appointment over a week ago...
I've just received a letter from my GP which basically says that he's thought about referring me to the pain specialist at the other local hospital but he thinks for now I should just carry on with the "pain management programme" my current consultant has me on.
To recap, this "programme" he has me on is to decrease my oral morphine from 540mg a day to zero within 6 months, by adding in drugs I've tried before and which didn't work. He's put me back on pregabalin - I previously stopped taking this because 25mg was causing me serious fatigue (I also have ME). This guy started me on 75mg a day and said I should increase to 300mg within 4 days. So far I'm up to 150mg and this morning I nearly got my husband to take me to A&E because I couldn't keep my eyes open, I was slurring my speech and I had such a bad headache I thought there was something really wrong. He's also added in a low dose of voltarol and tramadol. It was my first appointment with the consultant - he didn't read my notes, didn't look at me, clearly didn't understand my condition and didn't ask me anything about my pain. My appointment lasted four minutes. When I asked my gp how much I should reduce my morphine by, he said to decrease it from 4ml to 3ml each dose - that a reduction of 120mg a day, a quarter of my dose. When I was under my excellent pain specialist in London, she told me not to reduce my daily dose by any more than 10mg a day, and to maintain that dose for at least a week before reducing again. The reduction my GP suggested is frankly dangerous - if I don't end up in a state from withdrawal, the pain would be horrendous.
Whilst doing some research, I found out that the other local hospital (where I see my gynaecologist) is now a specialist endo centre - personally I don't think you could call any of the gynaes I've seen specialists, but they do have an anaesthetist / pain consultant who specialises in chronic pelvic pain and works with lots of endo patients. No doctor ever mentioned to me that this service existed. When my GP referred me to a pain consultant, that hospital wasn't on the choose and book forms so I didn't have the option of going there. Obviously if there's someone locally who specialises in my condition then it's in my best interests to be treated by them, especially since their site states that they offer tons of services that are not available to me under my current consultant - my GP should have referred me there in the first place, and shouldn't be refusing to refer me there when I ask.
After the appointment last week, I decided to register with a new GP practice - when I looked into it and read reviews, all of the surgeries I'm in the catchment area for have dreadful reviews. Funnily enough, mine is rated the best of a bad bunch. There was one GP at my practice who was fine but she's now on maternity leave. There is one other I can try but I'm waiting to have my mirena coil out - my current surgery can't do it until 22nd March because it needs a double appointment with a doctor and a nurse. The new surgery say the same thing so I would probably have to wait longer if I moved now.
I want to write back to my GP and send a copy to the practice manager explaining why he should refer me, and asking for an actual reason as to why he has refused in the first place (I know it's financial but I wonder what excuse they will give). When I first asked, he said no, it wouldn't help. I said it would help to have a consultant who understands my condition and who can offer me more treatment options. He said they wouldn't be able to offer me any different treatment so I pulled up the website which listed the pain management options they offer (everything from accupuncture to implantable nerve stimulation devices). He wrote down the details and said he would look into it - he had been checking his watch through the whole conversation so I guess he just said this to get rid of me.
However, I want to find some information first which I'm struggling to track down.
Do any of you work in the nhs, or know someone who does, and can maybe give me some info on choose and book, and on second opinions?
With the choose and book, does the doctor have to list which hospitals you can choose between? If not, how is this decided? When the same doctor referred me to gynaecology, both hospitals were there to choose from, but for the pain consultant there was only the one hospital.
Secondly, when I moved from London, my pain specialist in London told me that I could stay under her care because they're a national referral centre even though I live two hours away. When I asked my new GP, he said this wasn't the case and I had to transfer to a local hospital. Is that true?
Finally, I seem to remember something about having to send you for a second opinion if you ask for one. Is that right, or just one of those myths that goes around?
If you have any information for me, I'd be really grateful.