If I make a complaint about my GP refusing to prescribe medication

[Sconesandgravy]

My neurologist asked the GP to prescribe a medication to help with a medical condition. The medication is one can cause birth defects. I spoke to the pharmacist this morning who called to say she was putting the request through to the GP. The pharmacist messaged that afternoon to say the GP has refused to prescribe unless I go on hormonal contraception or the copper coil. He has claimed that guidelines say he can't prescribe if I refuse the above types of contraception.

I want to complain about this for several reasons:

• My husband is completely infertile. He had multiple samples of testicular tissue biopsied and it was confirmed he has a condition that means his sperm count will always be 0. The only way I'm getting pregnant is with a sperm donor. I obviously can't do this by accident. The pharmacist made the GP aware of this because she called me this morning and said contraception is recommended, so I said I'm not on contraception and disclosed about my husband.

• I checked the guidelines myself. NICE guidelines state the need for effective contraception must be expressed. The BNF says effective contraception must be advised. On gov.uk there is a 2022 safety review of the medication that states health care practitioners "should fully inform the patients of the risks and advise them of the need to use highly effective contraception". Nowhere specifies what contraception should be used, and none of the above bodies specify that medication should not be prescribed if long term contraception is refused. The only thing I can find is that alternative medications can be offered if the medication is long term and the patient doesn't want to use any form of contraception.

• Condoms and abstinence are also effective forms of contraception. If I were a man these would be recommended as they're the only available form of effective male contraception. It seems discriminatory to suddenly decide they're not considered effective contraception just because I have a vagina.

• I'm an adult with full capacity. I have the right to make an informed decision about what I put into my body.

In all honesty it just feels a bit like the GP has refused my prescription and intentionally given me misinformation about the guidelines to try and coerce me into going onto a contraceptive that he deems the most effective, rather than allowing me to make an informed decision based on my own personal circumstances. I know this is dramatic and I won't put that in my complaint but I just needed to get that thought out of my system

AIBU if I complain?

@Sconesandgravy My daughter was offered Topiramate recently for headaches by GP. She was warned that Topiramate makes the pill less effective. No discussion or warning about birth defects or the need for any other birth control. Just told her pill wouldn’t work as effectively.

You're assuming that every woman will get pregnant, and want to keep the baby. What about lesbians? What about infertile women? Women who have been sterilised? Women who adamantly don't want children? It's this kind of patriarchal infantilising of women that's sets us back decades!

It's not like she just looked it up on google and demanded her GP prescribe it! Her neurologist recommended she take it!

This is untrue. If I was in a position where I could fall pregnant accidentally, I would take the contraception.

But seeing as it's been surgically confirmed my husband has a syndrome which means he doesn't have the germ cells that make sperm, and my wedding vows actually mean something to me, accidental pregnancy is physically impossible unless I'm the new Virgin Mary and just don't know it yet.

I'm only against taking contraception because I can't fall pregnant without medical intervention. I wouldn't be stupid enough to refuse contraception if there was reason to take it.

I think you’ve got another step which is speak directly to the gp first before complaining.

I mean in fairness... Several GP appointments over the course of a year, a neurologist appointment, a nerve conduction test, a MRI, a lumbar puncture, another neurologist appointment, two EEGs, 6 standard blood tests and 8 specialist auto immune blood tests have decided I need the medication. I haven't just googled and made the decision for myself.

Put a complaint in and see if you can get him sacked.

I’d do this too. I’d hate wasting resources but you need those meds

good luck

@Sconesandgravy
by ‘they’ I didn’t mean you specifically I meant patients in general as I’d seen your post re your husband.

I fully appreciate this is a very stressful experience for you and incredibly frustrating.
It’s unfortunate you’ve had such a bad experience with the specialist who should be responsible for this prescription, especially one with such high risks. And the GP is perfectly in their rights to be cautious and not rely on indirect information from you and wait to see you face to face.

maybe worth asking the surgery to make a note that if any patient cancels an appt to ring you to fill the spot if it’s closer than 3 weeks?

I wouldn’t. Just ring them up and ask again explaining why. GP’s are having a shit time at the moment

Thank you. I have to be honest this doesn't sit well with me, but it is good to understand that (for once) men aren't being treated differently.

Of course, I'd still like to know if a man would be treated any differently if explained his partner was infertile.

It’s hard to tell now but the post wasn’t targeted at you. It was a response to another poster who was ranting on about GPs refusing prescriptions because they are on some sort of power trip or trying to save money, neither of which are the case.

I still stand by the fact the neurologist is entirely at fault here. It is not usual to request for a GP to initiate specialist drugs - guidance states the specialist should initiate, stabilise and then the GP take over prescribing when at a stable dose. I can see why you’re annoyed but it’s directed at the wrong person

I'm not assuming anything! I'm pointing out that men and their drug exposed sperm are not necessarily equal to women and their drug exposed eggs.

I had the same issue with topiramate for migraines. I just told them my husband had a vasectomy and they prescribed - no problem. He hadn’t actually had the vasectomy at the point I said it, but I knew he was going to soon and I was confident I could avoid an accidental pregnancy and didn’t feel the need to tell the GP all the details.

Y

This

The thing is, a GP can’t force someone to take medication, but neither can a patient force a GP to prescribe them medication.

Not read everything. However I think you are right to be angry, they have advised you if the risks and you wish to take the medication.

*Oh believe me I am angry with the neurologist. For many many reasons.

I did ask him to prescribe the first month of medication. He refused and said it's the GPs responsibility.

In fact, the neurologist has been an absolute nightmare from day one. Last year he didn't tell me about an abnormal brain MRI nor that I needed an urgent lumbar puncture within 4-6 weeks. I found out about both four months after my MRI when my husband told me there's a new app where you can access hospital records. There was a half written report stating all of this. When the lumbar puncture came back clear, he refused all requests from the GP to expedite my next follow up claiming it was trapped nerves and that lots of women get them. It took me emailing videos and threatening PALs to get him to see me.

He saw the videos I sent and said I needed to be seen the next day because he was concerned. I had other episodes and the GP requested he do a spine MRI. Neuro rejected it. I was rushed to hospital last week due to a medical episode and a registrar contacted him to request a spine and neck MRI as he's in charge of those and she figured he'd accept from her. He's also refused those because he disagrees with both the registrar and the GP about the cause of the issues, even though they both agree it's the same thing despite not having communicated with each other and having seen me weeks apart.*

To be fair, you can see why the GP is reluctant to take his prescribing advice....!

Hi OP, I was on topiramate, prescribed for me by the GP for a long time before I ever got to see a neurologist. TBH it did fuck all except give me appalling side effects, but I am aware it works for other people.

My DH is also infertile (bugger all sperm in the samples, absolutely nothing capable of swimming - what was in the sample was either dead or so mutated it couldn't actually move in any direction) due to being a premature baby and subsequent issues with undescended testes so everything was literally cooked.

If I recall correctly, I also lied and said we'd use condoms and a diaphragm with spermicide :-) Then used nothing as usual.

I do actually have the Mirena coil now to deal with perimenopausal symptoms, and to try to see if it helps with my chronic migraine (nope, but I'll try anything!).

So my advice is lie to the GP. The BNF guidance on women of childbearing age and topiramate states "Manufacturer advises perform pregnancy test before the initiation of treatment—a highly effective contraceptive method is advised in women of child-bearing potential; patients should be fully informed of the risks related to the use of topiramate during pregnancy."

https://bnf.nice.org.uk/drugs/topiramate/

I'd go back to the surgery with that link, the quote and your description of your (imaginary) contraceptive plans.

Whatever happens, please please check the list of side effects and be aware of them - I was an absolute zombie after 2yrs, it nearly cost me my job and my marriage because I was such a mess. The GP was worried I had blood cancer or something but we finally worked it out..... I'm not allowed it again!

For hemiplegic attacks, it was actually Botox (via neurology) that got on top o those for me. I'm down to a couple a year from two a week....

Thank you for clarifying, and I'm sorry if my response came off harsh.
I personally don't think it's a money or power thing. I think it's specifically this GP because I've had a similar issue with him before. Except that time he rejected an Econsult request for prescription strength antihistamines saying guidance says I have to buy OTC for hayfever, and then refused to see me or acknowledge the note in my records stating that I should be prescribed those antihistamines as I've got severe hayfever and OTC ones don't work. I had to request to see another GP and wait weeks to get my prescription.

I do recognise it's also a safety thing, but this GP has form for hiding behind guidance and then refusing to communicate

You can still buy OTC and just increase the dose?

Thank you for this. I've heard the side effects can be nasty but I'm in such a horrific place with hemiplegic attacks that I just need some sort of relief. To be honest I'm considering being referred elsewhere before taking anything.

It doesn't work. The prescription ones I have are a different medication to standard antihistamines. I've been on them for years because it's the only ones my allergies respond to

@Sconesandgravy Can you afford to speak to the National Migraine Centre?

https://www.nationalmigrainecentre.org.uk/migraine-clinic/funding-your-appointment/

I'm on CGRP injections (long story, technically off them at the moment due to a mammoth fuck up by neurology but awaiting my next appointment) which have been life changing. At one point I was down to a max of 4 migraines a month (from 28 a month on topiramate) and zero hemiplegic attacks in 8 months. I was no longer in bed most days, I was back to myself and only taking to bed maybe one day every three months for a blinder of an attack.

Things are not so great now so I want to discuss alternatives. I'm also running out of triptan options, so want to see whether they'll prescribe me the new gepants.

They will probably make me try one more CGRP (I've had Ajovy and Aimovig).

My hemiplegic attacks also cause cyclical vomiting, so I have scopolamine patches prescribed for that and I flit between frovatriptan tablets and zolmitriptan nasal sprays depending on how vomity I am.

All the sympathies in the world. Just lie to the GP :-D