I live in London, UK. I have been suffering from T N for nearly One year.
My GP is not very helpful and it is quite difficult to change doctors now-a-days.
I am in real need of help for someone to support and help me confront my GP.
Can anyone help? please
Keep in mind most GPs only have a general knowledge (if that) of TN. Even some neurologist have a basic knowledge.
What are you wanting from your GP? Use the resources here to find different medications, surgeries and other info helpful for your cause.
Don’t be afraid to tell him what you need, but don’t be upset he doesn’t have a vast knowledge of our condition. I think we all expect doctors to go above and beyond for us. Times have changed. Should they, yes… But do they, no. Patient loads in the US for GPs are typically 20-30 patients per day. I imagine it may be higher there. So keep that in mind as well.
Have a plan - write it down and discuss it with him at the next visit. It’s worth a shot right?
I hope you get help soon.
Btw - some doctors do go above an beyond for patients sometimes. I’m just saying that GPs have higher case loads because their cases are supposed to be “general”.
Specialists have less patient loads and a better knowledge of your disorder.
There are so many wonderful, caring doctors in the world and I didn’t want to seem crass.
Amol have you been referred to a Neurologist yet? I had to keep on asking but did finally get a referral. Are there more then one GP in your practise and one GP may be much better then another. Good Luck xxx
Elstep,
Thank-you for your reply. No she is refusing to refer me to a neurologist, she says she is sure Amitriptyline will work, it has not worked so far. She says, "wait until after X-mas." I guess she will then increase the dose.
There are other doctors in the surgery, but all referrals have to go through her.
Thank you.
Nalini
Amitriptyline helped for me for sleep but you may need a something more or a mix. It is difficult to get a referral because of cut backs they try to deal with it in surgery. You will have to pester saying that a Neuro may be able to suggest a cocktail that may help as you cannot cope anymore. Let me know how you get on xx
Thank you Elstep, I will let you know. Someone called Cindy Ezell sent me a UK site. I think I will get help from them. Thank you Cindy.
Hi Amol, I have also had difficulties with my GP - he has only ever treated one person with TN before, and that was some time ago. Rather than a neurologist I was referred to a pain clinic. Luckily I saw an anesthetist who had experience of treating people with TN and he has helped with advice on medication and what my other options may be.
There is NICE guidance for NHS doctors on treating neuropathic pain (which includes TN as far as they are concerned). These have helped me dealing with my doctor. One is a guide for patients on what to expect and the other one is the guidance for doctors. These might help your GP. My GP often says that he is not a specialist and needs a specialist to help him deal with TN - this might help you to get a bit more treatment. After discussing this with them I was prescribed tramadol to help with the pain in the short term while I waited for the appointment with the pain clinic. It helped me, although I know it doesn't help everyone.
Info for patients - understanding the NICE guidance on treating nerve pain with drugs http://www.nice.org.uk/nicemedia/live/12948/47958/47958.pdf
Info for doctors - guidance on treating patients with neuropathic pain http://www.nice.org.uk/nicemedia/live/12948/58253/58253.pdf
My GP was sure she could deal with it. I asked to be referred she refused saying no need. I then saw a younger GP in the practise and I was in tears because of the pain. She took pity and when I asked for a referral she wrote it for me. When I eventually saw a Neuro I was not longer in pain, but it was good to talk to someone who knew a lot about it. I must admit he repeated a lot of what my GP said but it was good to hear it from someone who has dealt with it a lot before. Now I have met him, he assured me if it comes back he will see me again.
Ruth,
Thank you for both NICE guidance; I have read both now and they are boh helpful.
Thank you
Hi Amol, I have also had difficulties with my GP - he has only ever treated one person with TN before, and that was some time ago. Rather than a neurologist I was referred to a pain clinic. Luckily I saw an anesthetist who had experience of treating people with TN and he has helped with advice on medication and what my other options may be.
There is NICE guidance for NHS doctors on treating neuropathic pain (which includes TN as far as they are concerned). These have helped me dealing with my doctor. One is a guide for patients on what to expect and the other one is the guidance for doctors. These might help your GP. My GP often says that he is not a specialist and needs a specialist to help him deal with TN - this might help you to get a bit more treatment. After discussing this with them I was prescribed tramadol to help with the pain in the short term while I waited for the appointment with the pain clinic. It helped me, although I know it doesn't help everyone.
Info for patients - understanding the NICE guidance on treating nerve pain with drugs http://www.nice.org.uk/nicemedia/live/12948/47958/47958.pdf
Info for doctors - guidance on treating patients with neuropathic pain http://www.nice.org.uk/nicemedia/live/12948/58253/58253.pdf
Amol, your GP does not understand TN if she sent you to a psychiatrist rather then a Neurologist. What did the psychiatrist say? I was hoping he would refer you to a Neuro? Go on to the UK group and ask the question how did others get referred? I did look into paying myself but it costs about £200 to £400 for the initial appointment after that you can go back to the NHS. I am not sure if changing GPs is a good idea? Or making an official complaint? I dont know enough about those procedures to help you. xxx
Elstep,
Yes I think she does not understand TN and she does not want to admit it either. In regards to psychiatrist, I was in a shock, but it was a blessing in disguise; I did not walk out of the interview, but instead I demonstrated to him that I was cool and collective, but I over and over iterated to him that my GP has made a big mistake and that I really need a Neurologist. In conclusion, he asked me, as they always do, if there was anything I wanted to come out of that meeting I told him that he should write to my GP telling her the truth, that I am very disappointed that she had referred me to him and that I am in pain, I am not imagining all these. He promised to do that.
I then went to my GP's surgery and spoke to the practice manager, who was also shocked. She phoned me after two hours saying that my GP is denying that she ever referred me to a psychiatrist!!!!!
Some one did!!!!
So I have now put in a formal complain, but I really do not want to side track; I am in pain and I need help.
Amol
Amol, you have handled this situation much better then most. Your notes will say who referred you. I would write again to the Office Manager and make a further appointment with your GP to ask if you can now be referred to a Neuro and see what the response is. I would say now it has been discovered that the pain is not in the mind but is a physical disorder that is not being solved with just Amitrip can you now been referred to a Neuro who is an expert in this fieldl. I think it may help if you if you put this request in writing to your GP and copy it in to the Office Manager. xx
Elstep,
Thank you for this. I was wondering how to progress this, cause if I saw her face-to-face she would fob me off, but you are right I must write to her. I think your 'good wish' will do the trick.
By-the-way, I live in Wembley in London.
AMol
Hi Amol, my son lives near you in W9 Kilburn Lane, I am near the coast in Kent. I think to be fair to GPs they are under pressure not to refer patients to consultants but to treat us them selves. This is all well and good for certain conditions but not for this one when you have suffered for so long. Persevere, put it all in writing, keep calm and polite, keep copies and state the reasons why you need to see a neurologist (because the treatment you have been prescribed is not relieving your pain) I wish you well, keep in touch. xxxx
Thank you Elstep,
Sure, I think I need be polite t achieve a constructive outcome.
Do you visit your son. If you want, we can meet up when you visit your son. I drive to Kilburn a lot as I have a good friend who lives there.
Thank you for support.
AMol