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.
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I hope that some of the girls here will know more than me to direct you for any further process with NHS.
If you can afford it, why dont you go private in an endo gynae, make a fresh start and he will refer you to the pain management clinic (NHS again) you want to go. Or he might have another solution for you.
This is exactly why me and hubby decided to pay for private health insurance, to avoid the NHS chaos.
You're having such a hard time hun, you deserve much better healthcare and some doctors that actually care.
I can't really afford to go private - I had to give up work and now my husband supports us. I have my own small business but that's close to going under. There's not really anything an endo specialist could do for me at this point - surgery doesn't help and I've tried all the hormonal treatments available, all I can really do is manage the pain and try to cope with the fatigue.
I'm pretty much at the end of my tether - I don't think I can cope much longer. I'm really struggling with everything and it doesn't feel like anything is going go get better.
I'm sure I'll be fine - I'm just having a bad day. Thanks for taking the time to reply.
I was followed at a different hospital from the one I lived but with moving out, I have been transferred to a new rubbish one. I am going back on Monday to my gp to try to bg referred there again .
I'm so sorry to hear about the difficulties you are having accessing hospital treatment. To answer your questions...
Your GP should give you the list of hospitals in your area that he can refer to on choose and book. If the hospital you would like to go to is on that list then you're well within your rights to opt for that particular hospital. Just make sure that the referral goes to the named specialist. Some GPs just do what's called a 'Dear Dr' letter which means you will be put on the waiting list for any consultant in the team with the shortest waiting list. You must give the GP the name of the consultant you would like to see ok?
If the consultant or hospital is not on choose and book options then again under the NHS contstitution you have the right to go to any hospital but this can be more difficult to request. Patient choice technicly extends to any NHS hospital so armed with the right information you may be able to persuade your GP to make the referral.
Unfortuatley the NHS changes going through at the moment mean that sometimes as you say there are financial considerations to be made when making referrals. If your GP genuinely feels that local management of your pain is the right thing for you then he/she will need further evidence of why it's not appropriate. This part probably doesn't help you, I know
Different parts of the country have slightly different ways of referral management so if you need specific advice relevant to the area you live in then contact your local Patient Advice and Liaison service (PALS). They won't be able to discuss clinical stuff with you but they should be able to explain your rights in terms of patient choice
Thanks very much for your advice - it directly conflicts with what my GP told me and suggests that he is at fault for not referring me to the hospital i would like to be seen at in the first place.
Basically, the hospital I'm currently being seen by and the one I would like a referral to are pretty much equidistant from where I live - they are the two local hospitals. When he referred me to a gynae, both hospitals were on my choose and book form. When he referred me to the pain consultant, only my current hospital was on there, so I didn't get to choose anything. I wondered why only one hospital was on there - from what you're saying, this was decided by my GP so I have grounds to complain. I wish I'd known at the time that the other hospital had specialists there so I could have kicked up a fuss, but I just accepted the referral to my current hospital.
I've made it clear that the treatment I'm getting at my current hospital is poor, and that the other hospital has a specialist and more treatment options. He also knows that I am currently housebound 90% of the time and that things are dreadful - I don't know how much more of a reason he would need or I could give.
If its true that I can be treated at any NHS hospital then he outright lied to me when he told me I couldn't continue being treated by my specialist in London. That's another area for complaint.
When I asked for this referral, he told me that he cannot refer to a named consultant, that he can only refer to a department. Is this incorrect?
I actually emailed PALS explaining the full situation and asking for the information about choose and book, what my rights are etc. I've had a lot of help from them in the past but their only response was that I should discuss it with the practice manager (who I know from previous encounters is useless - she actually told me off for emailing her directly after I managed to obtain her email address when I had a complaint previously!) and they can tell me my rights, and that I can change GPs if I want to. Not very informative!
The letter he sent me said I should continue with the "pain management programme" by current pain consultant has set out, which is not a pain management programme but rather a drug reduction programme. To "help", he's given me additional medications which I made it clear have not helped me in the past, and at much higher doses which are exacerbating my fatigue and making me very unwell. He had zero interest in doing anything to improve my pain, he didn't even ask about my pain or read my notes, he just asked for my current morphine dose (which is very high, despite the fact that I've already reduced it by half, even if this has taken a couple of years) and said I must get my oramorph down to zero within 6 months. It's unrealistic and frankly not possible.
Thank you for your help and advice - it gives me a good starting point for my complaint. Do you work for the NHS? If not, can I ask where you found this info so I can read through it?
The only advice I can give you is my own experience, 3 years ago I had a clear lap and various other tests for Endo under a well regarded Gynea consultant. He said there was nothing Gynecologicaly wrong with me and signed me off his list.
I went back to my GP still not convinced I asked for a second opinion. He agreed with me and gave me a selection of other consultants based at various different hospitals.
I choose a female consultant as I thought she would be a bit more sympathetic. I was wrong! However I have now had a sub total hysterectomy. The best thing I have done!
I asked for a second opinion and chose who I wanted to be referred to, and it wasn't in my local area. I thought it was the case that we are entitled to a second opinion and can chose anywhere in the country to be seen x
I guess its on the doctor, some of them they are so reluctant to give referral even when money is not involved. My GP in the beginning, didnt even want to give a referral for me to go private!!! Hello??!!! I'm paying!!!
Some doctors think that they know everything so no other doctor will give better treatment etc. and this is so bad.... x
Why don't you contact the London pain specialist directly? Being a national referral centre she probably knows how it works better than your GP. If she is prepared to continue treating you and you are prepared to travel to see her surely that would be the best option all round?
Yeah, I've written to her and I'm waiting to see what she says, but I believe the GP would have to agree for me to be treated by her. I'll see what she says.
You should definitely be entitled to a referral. I was appalled with my treatment locally, I did some research and found a fantastic consultant about 2 hours from me, I just asked my GP for the referral and she was happy to do it. I find it disgusting you've been led to believe this isn't possible, it may depend on where you're being referred to but it's your right to choose and I don't believe they have any right to refuse.
I really hope you have the strength to keep fighting and I'm so sorry you're having to go through this. I'm absolutely certain you will get there
Thanks for the support and the advice, I really appreciate it.
The frustrating this is that I'm not even asking for a referral out of area - I just want a referral to the other hospital where I live, and where I'm already under a gynae. This pain specialist works closely with my gynae and is a sub-specialist in chronic pelvic pain so it is obviously in my best interests to see him rather than a general pain consultant who shows no interest in my condition or my case. It seems I should have had the option to be referred there two years ago when I got my choose and book form, but my current hospital was the only one on there so I had nothing to choose between! I didn't know until a couple of weeks ago that the other hospital even had an endo centre, let alone a pelvic pain specialist, so I didn't know at the time to insist on a referral there. Surely GPs should know about what services are available at their local hospitals and refer to the most suitable place.
What makes me most angry is that I could have been referred there nearly 2 years ago and they might have been able to help, but instead I've been gradually getting worse and feeling like I have no support from any doctors.
Apart from him checking his watch throughout the appointment and saying he'd look into referring me just to get rid of me, the thing that annoyed me most was when he checked the letter from my gynae - it said that they only found mild endo and that my uterus and tubes etc appeared normal. He actually said "I think the gynaecologist was shocked to see how little disease you actually have, given how much morphine you take" (the letter didn't say anything of the sort). I explained to him, again, that I have mild endo but severe pain whereas others have severe endo and mild pain, and that this is common. He pulled a face like I was full of horse poo and then changed the subject. Grrr! I know that I've had this disease a long time and know it inside out and I'm not expecting any gp to know as much as I do - but come on, I can't be the only endo sufferer he's ever seen so he should know the basics, right?
Sorry to go on - as you can tell, I'm pretty angry about all this.
Thanks for the link - I've been through the constitution and the supporting handbook in great detail but cannot find the information I need.
The only relevant section is the one on choice, and all it says is that I have the right to choose which nhs organisation provides my consultant-led care before my first outpatient appointment - I guess this wasn't met as I wasn't given any choice, there was only one hospital on my choose and book, when there are two more hospitals locally that have pain management departments.
However, although it says I have the right to choose, it doesn't say whether there are any restrictions on this (eg does it have to be local etc) and it doesn't have any information about second opinions etc. It's possible that by accepting the initial referral to one hospital (because that was the only option given), I've scuppered myself - I was uncharacteristically naive about it, and when I got the choose and book through with only one hospital on it, I assumed this meant that this was the only hospital locally that had pain consultants. If I'd done some research, or if I'd been given the choice and looked them up, I would have found out that the other local hospital has at least one specialist in my condition and would have tried to get a referral there.
The letter from my gp said that he wants me to stick with my current consultant and his so-called "pain management programme" and that if that doesn't work we can discuss the possibility of being referred to the other hospital. The only possible good outcome of this course of action is that I reduce my morphine dose and save his practice some money - they're not doing anything to improve my pain. So even if that happens, I'm still going to want to be referred somewhere with a specialist who can offer possibly treatments - its just that, instead of going on the waiting list now, it could be 6 months to a year before I go on the waiting list, if he ever refers me at all. It's unacceptable and I'm not going to take it lying down.
I've emailed PALS again saying I don't want to speak to the practice manager until I have more info and asking again about the referral process within my PCT. hopefully they'll respond with some info.
Sorry - this rant wasn't intended as a reply to you, i am just updating
You have every right yo request to be refered where you want to be. I'm a nurse and have been given the run around plenty of times but keep at it it's your right xx
I would suggest finding an endo specialist by name you feel can meet your needs and making your case to the Gp or head of practice, why this consultant is best for you. good luck. I have mentioned to my Gp that I feel a particular endo specialist would be better for me and my Gp said it was possible to refer me to him. I have yet to do it as I am scared stiff as I know this particular endo specialist is known to be brilliant but having attended a meeting where he spoke. I know he favours an aggressive approach (ie radical hysterectomy with probably bowel ressection) to deal with complex cases of endo and adhesions. I will eventually find my courage but I thought I would tell you it is possible.
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