GP refusing to prescribe me anymore pregabalin after 1.5 years of taking it (HELP)

[danielleh_]

Hello!

I am in pretty dire straits at the moment with my NHS surgery and I am desperate for advice. Really, really desperate.

Long story short: when I was 17 I used to see a private psychiatrist (via my father's health insurance (under-18 children are covered) due to the length of the CAMHS waiting list), and I was prescribed Pregabalin back in January 2015 to deal with my anxiety after trying numerous SSRIs. Over a period of time I was gradually brought up to 250mg bi-daily, and I have been taking it ever since. My GP on the NHS refused to prescribe it at the time, despite my psychiatrist's wishes, citing the fact that I was under 18. Yet, when I turned 18, my GP still refused to prescribe it as my "BMI is lower than average", and therefore we came to a compromise: they would prescribe it to me if I agreed to attend an eating disorder service (I don't have an eating disorder, I am just underweight!!), and they have been prescribing it for 6 months since then. However, unfortunately the eating disorder clinic assigned me an appointment on the day of one of my A-Level exams, and I was therefore unable to make it. They then (apparently!) sent me an opt-in letter, which I didn't receive for whatever reason. As I didn't receive it and therefore didn't reply, they took me off the register.

So, I received a voicemail on Monday from my GP who said the surgery would no longer prescribe me Pregabalin as I had failed to attend the appointment and that was that. My mum, on my behalf, then tried for the next two days to get through to them on the phone, to no avail each time. Desperate, because at this point I had run out of medication, the receptionist at my surgery said it would be easier to make an appointment with the GP, so we made an appointment for that evening (yesterday).

Annnnnnywaaaaay, as I have gained a little bit of weight since the last time, the new excuse was that she was not prepared to prescribe Pregabalin as it is supposedly "off-license" (it's not - I've checked the NHS website). She said she would prefer to consult the senior practitioner "tomorrow", and that "you'll only be without tonight's dose" in the meantime (is this even legal? She has a duty of care - sudden withdrawal from Pregabalin is very dangerous!).

So, the senior practitioner got back to us today and said he would not prescribe it anymore under any circumstances, and that I will have to go private. I said I would be happy to come off Pregabalin if that is what it takes, but I need the surgery to wean me off it. Despite this offer, he still refused. So, he's left me with a week's supply to "give me time" to go private.

I can't get a private prescription. My mum and I don't have much money. I don't know what to do. I'm desperate. The last thing I want to do is to suffer that Lyrica Withdrawal Syndrome, as just one missed dose is enough to cause my anxiety/depression to relapse and it takes me days to feel some semblance of normalcy again.

They have been prescribing me 250mg of Pregabalin for 6 months and now they are prepared for me to experience withdrawal, despite their duty of care.

So I am asking: what on earth can I do? Is there an authority I can contact to complain? Are they within their rights to stop me so suddenly and allow me to suffer withdrawal?

Please help. I don't know what to do. I am so scared.

Thank you so much in advance to anyone who can offer any sort of advice.

[SmilingAlbert]

Sorry to hear this - it doesn't sound like you're being treated properly.

Are you in the queue to see an NHS psychiatrist? if not, get on that ASAP.

Also, I think it's your legal right to change GP, and in this case you would need to change your GP's surgery.

http://www.nhs.uk/chq/Pages/1088.asp...CategoryID=158

Don't know how easy this is - easy in a big city, not so easy in the country - but that would be the first step. Maybe ask around your friends etc. to see if they can suggest a sympathetic doctor to move to. Then meet them and explain your situation.

Some GPs are MH experts, and it would be useful to find one, as they are much more familiar with the meds.

As you Preg is on-label for anxiety, certainly in England, and is the official third-line med after SSRI and SNRIs:
http://www.nhs.uk/Conditions/Anxiety...Treatment.aspx

Re complaints, there is a useful guide here:
http://www.which.co.uk/consumer-righ...-or-gp-surgery

But that could take a while - you are better off finding another.

Best wishes,

Albert

[MyNameIsTerry]

Do you mind telling us which County you are in? I ask because there is a lot of information online from local NHS trusts so it may be possible to find something to support your case.

[danielleh_]

Do you mind telling us which County you are in? I ask because there is a lot of information online from local NHS trusts so it may be possible to find something to support your case.

No problem! I am in the South East - West Sussex. I have checked the Southern Health NHS guidance, and Pregabalin is listed, as you can see below, as a second option for pharmaceutical treatment. I have also checked the NICE guidance and this also corroborates the NHS website and the Southern Health advice. What should I do with this information?

preg.JPG
nice.JPG

I can only conclude that this a financial issue, as Pregabalin is a rather pricy drug. That surely doesn't give them license to play with my mental health like this, however.

[SmilingAlbert]

It's now available as a generic for this condition so quite a bit cheaper now, so might not be the whole story. In my experience a lot of doctors are not as clued up about MH and MH meds as they should be, and don't like prescribing things they don't understand.

Preg is a relatively new med, and some docs are set in their ways - "anxiety? have an SSRI, like I've always prescribed in the past 20 years"

Try and find a new GP, who is ideally a MH specialist.

Albert

[danielleh_]

Sorry to hear this - it doesn't sound like you're being treated properly.

Are you in the queue to see an NHS psychiatrist? if not, get on that ASAP.

Also, I think it's your legal right to change GP, and in this case you would need to change your GP's surgery.

...

Don't know how easy this is - easy in a big city, not so easy in the country - but that would be the first step. Maybe ask around your friends etc. to see if they can suggest a sympathetic doctor to move to. Then meet them and explain your situation.

Some GPs are MH experts, and it would be useful to find one, as they are much more familiar with the meds.

As you Preg is on-label for anxiety, certainly in England, and is the official third-line med after SSRI and SNRIs:
...

Re complaints, there is a useful guide here:
...

But that could take a while - you are better off finding another.

Best wishes,

Albert

Thank you so much for your advice. It is very helpful!

I am not in the queue to see an NHS psychiatrist as my GP recommended against it, and continued to insist on the "eating disorder" route as they supposedly take a "holistic approach".

What I didn't specify is that I have changed GP several times in my surgery. It is the order from the 'power that be' - from the senior practitioner - which remains unchanged each time. My ex-psychiatrist (and ex-psychologist) actually urged me to change practice a number of times, but I have yet to do it because there is a long waiting list in my area.

I am going to write a strongly worded letter to the senior practitioner, perhaps in vain, and then I will take it from there I suppose. I will tell him that if he does not reconsider even weaning me off Pregabalin, I will take this to a higher authority. Does that sound like the appropriate route to take?

[Sam100322]

Hey danielleh I sent you a message hope it helps X

[pinnor]

This is awful! I'm so sorry you've been so badly treated.

I would definitely complain but it will take a while before anything is sorted. You are definitely in the right so eventually they will get in trouble, which is what they deserve; those GPs are dangerous and should not be seeing patients. I would also change surgery, are you sure that every surgery in your area has a waiting list which is too long for you to get treatment there?

In an absolute emergency, if you are feeling terrible remember that you can get to A&E and they will at least give you diazepam to tide you over some of the withdrawal symptoms.

[Nella131]

I am also shocked and saddened at what you are going through - agree that changing GP's must be worth investigating in the long term (I have just had an issue with a GP not wanting to prescribe it at my usual practice - my psychiatrist has recently put me on it - but have switched practice and had no trouble at all with the new one).

NHS England definitely list it as a valid second line treatment for GAD, and this should be honoured.

As for the low weight/ED thing - the psychiatrist I see is within an ED service as I have anorexia (though very recently weight restored). I know of at least one other patient with anorexia who has been prescribed it for anxiety, and she was at a very low BMI. My consultant says she has been using it for a decade with people with eating disorders, so it is not contra-indicated in people with eating disorders (whether or not you have one).

I don't know of course what your BMI is, but even at a lower than normal weight, it would just be a question of managing the dosage appropriately - it sounds to me as if your current GP just doesn't have enough MH knowledge to manage this, and fears making mistakes...yet has ended up choosing the worst possible option.

Others here have already given good advice, so I just wish you well and hope you find a way to get the prescription you need without too much time and struggle. Going to A&E might at least get you seen by a duty psych who I would think only too happy to prescribe something you've had before, and clear you from his caseload with enough supply to last until you can sort out changing GP practice...