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?

Actually I’m going to NC just to escape you

I would tell them I've reconsidered and will go on the pill. Pick up the prescription and put them in the bin.

Too much stress and aggravation. The GP sounds like a cunt with the way they have handled this, they should be willing to have a professional discussion with you before refusing anything.

Thank you for seeing this from my perspective. It does very much feel like that at the moment.

At this point it seems like the GP cares more about hypothetical outcomes for a non existent foetus, than he does about very real outcomes for me, when I am the one that actually exists.

I know several people are going to flame me for this, but I am not convinced that it's even about mitigating risk or following guidelines anymore. Let's be honest, if it were about that, then the GP would follow the NICE guidelines for topiramate, inform me of the risks of birth defects and advise me to use an effective contraception. Following that he would then make a decision based on my medical history and personal circumstances as per the guidelines. He would then offer to let me sign a waiver stating I understand the risks and take full responsibility. And after all of that, if he still felt uncomfortable prescribing, then if it was really about mitigating risk, he would contact neurology about another medication option or at least let me seek an opinion from another GP. But he's refusing to do any of that, instead he's choosing to block any option other than a copper coil.

At this moment in time I feel like I've been blocked from doing anything other than getting the copper coil because I've questioned the GP and now I'm seen as a non compliant woman who is refusing to do "what's best" for the GP and a non existent foetus. He's now blocked off all access to other GPs at the surgery, and he won't communicate with me because he isn't open to any other options. He's got me in a position where I either to live with debilitating migraines or get a coil I don't want or need. I'm sorry but it's basically medical coercion at this stage.

I work as a Fetal Medicine Midwife and we get quite a few referrals each year for women who have conceived on teratogenic medications. The recommendation for the majority of these medications is to prescribe to women of child bearing age with effective contraception. I do appreciate that you have extenuating circumstances regarding this but I do feel that the GP is showing due diligence in refusing to prescribe. They themselves have not had the conversation with you, its third hand information. They are responsible for their own prescribing and they can't use the defence that another doctor told them to do it if something went wrong. The system is also at fault here at a you should be able to make an appointment to see them for a consultation easily so you can discuss your individual circumstances. I hope you manage to consult with them and get the prescription you need.

He got the pharmacist to tell me he's no longer allowing the pill because it's clear I won't take it meaning the risk of a pregnancy and potential harm to a foetus is too high 🙄

I actually spoke to the practice manager yesterday. She's asked the complaints manager to call me urgently when she's back in the office either today or Monday. She advised me to log a complaint because the GP has broken the practices shared decision making policy. The policy basically states that GPs are meant to work with patients. GPs are meant to support patients by providing accurate information, and making sure patients are aware of and understand all available choices and the risks and benefits of them. They're supposed to give the patient support and guidance while they think about what is most important for them. The GP is then supposed to work with the patient to come to a decision about care that they are both happy with.

They also have another policy that states the healthcare providers should always consider the patients perspective.

Unfortunately none of these policies have been followed.

Is it accutane? When I went on it I was told I needed to be on contraception. I happen to have the mirena coil for endometriosis so that was all good, but I happen to also be a lesbian..I asked about this but it was still a legal medical requirement for me as a woman of child bearing age

I do understand this, and I'm not complaining about the refusal to prescribe in general. I'm complaining about the refusal to communicate and the approach that's been taken. I'm complaining about his refusal to risk assess based on me as a patient. Because his only reasoning is I have a womb so could.get pregnant. I was even informed I could get pregnant by another man 🙄

It's not the system preventing an appointment, it's the GP. Half my complaint is about the GPs refusal to discuss all options with me. I had him removed as my named GP and said I don't consent to him treating me anymore. Rather than have another GP deal with this, he got the pharmacy to tell me that he's working collaboratively with another GP because I won't engage with contraception.

I also disagree that his refusal is due diligence because if it was about due diligence then this would extend to all risk factors including the risk of prescribing a contraceptive pill without informing me of what pill or medically assessing me if it's one with risks around higher BMIs such as the combined pill. Although this is no longer an issue because he's decided there's too much of a risk I won't take the pill and put an imaginary foetus at risk.

I think it's utterly barbaric to treat me like this. It's clear that he doesn't see me as a patient. He sees me as a uterus. If he saw me as anything more he would be willing to communicate, and treat me like an actual human being with reasons behind my refusal.

No, it's Topiramate. It's not a legal requirement to be on contraception and all guidelines state doctors should speak to the patient about their medical history and circumstances, inform them of the risks of pregnancy and advise effective contraception.

If there was a law I would accept it and either take the contraceptive or request an alternative medication if there was one.

I don't know why the doctor was "beside himself". Presumably he had made the lady fully aware of the risks and she chose not to use contraception. That's her decision. Insisting every woman in the future has to have birth control as one woman's decision went wrong for her, is infantilising. Most women are quite capable of making their own informed decisions once risks have been explained.

Obviously if he didn't explain the risks to the woman concerned then he should be bloody more than "beside himself" because that's a horrendous error. But insisting all women in future are on contraception is not the answer, clearly outlining the risks is.

All of that is completely irrelevant. The possible effects on a foetus that doesn't exist yet and may never exist should not under any circumstances outweigh the current health needs of a woman. She is capable of making an informed decision.

It's absolutely disgusting that foetuses that don't even exist are prioritised over real women who are suffering. Taking contraception isn't nothing, and having a coil put in is often agonisingly painful and it affects your periods. In your situation in particular, there is no good reason (that doesn't involve infantilising women and treating them as incubators) why you can't sign a waiver indicating that you know the risks. I'm actually shocked how many people think that the idea of a foetus which couldn't even be conceived due to the OP's husband's infertility is a legitimate reason for the GP to behave so appallingly. The GP should have to explain and justify his conduct to be allowed to continue working with women of childbearing age, as he sounds completely blinkered. Women are people not vessels.

You'd have to be pretty twisted to say that it's better for a child to be born with a neural tube defect than for its mother to continue to suffer migraines, and indeed no normal mother would take that view. The point is that It isn't prioritising the interests of foetuses; it's basically saying fine, let's get rid of your migraines, but let's also make sure that there's no possibility of a damaged baby.

But nobody has said that have they?

In fact, as I said further up the thread, my husband has Spina Bifida. He's one of the 75% of men with the condition that are infertile.

I live with the impact of Spina Bifida every day. And when I say that, I'm not just talking about infertility. I'm talking about the days where spina bifida leaves my husband so exhausted, he can barely stand up. Pressure sores from the straps on his splints, that plasters and knee length socks don't protect against. Having to massage his legs and feet because they go purple due to a lack of circulation. The difficulties with coordination, and the lack of feeling caused by nerve damage. Checking his feet daily for sores and cracks because he can't feel his feet nor move them to check due to a lack of ankle mobility. The effects the spina bifida associated brain damage has on his memory. The damage to his self esteem that his disability has caused. The impact of a lack of knowledge around non traumatic spinal cord injuries amongst medical professionals. The impact that having to catheterise and do hour long bowel wash outs has on everything from planning a day out, to planning when we can be intimate because everything has to be scheduled around those things. The impact of a lack of bowel care policies or specialist bowel nurses for people with spinal cord injuries in and out of hospital. The trauma caused by years of surgeries and hospital admissions. The impact of planning our future and having to plan financially for the fact that DH will likely become a full time wheelchair user within the next 20 years, and having to save up so that when we're closer to that point, we can buy a bungalow and have it adapted if need be. The emotional impact knowing that no matter what he does to protect his kidneys, one day DH will most likely die from kidney damage caused by NLUTD.

I am probably more informed about the long term impact of neural tube defects on a person and their wider family than most, if not all posters on this thread. If there was any chance of conceiving and becoming pregnant I would be on contraception. As it stands, there isn't.

@Sconesandgravy the more you post, the more frustrated I am on your behalf that the GP refuses to engage in any sort of conversation with you.

Unfortunately the reality with many many women is that they will listen to the need for contraception, sign a waiver and then end up pregnant despite circumstances at the time of signing being such that it was not possible. Some have also subsequently claimed they were not fully informed and did not realise the implications. This is where the strict guidelines are derived from but we as HCP have the ability to use our judgement and from reading your posts with the clear insight you have into your circumstances and the potential consequences, I would definitely be using a waiver if I was treating you.

Do you have to give a reason for appointment when requesting one with GP? In our practice, we can request an appointment without giving reason, we only have to say why if it for an urgent one so they can triage. Is it at all possible to just book an appointment with another GP without stating what it is for?

Thank you for being able to see this from my perspective, and for being able to see why I'm so frustrated.

Unfortunately I have to give a reason for an appointment, and this GP seems to be making it impossible for me to get an appointment. When I explained my husband has spina bifida (myelomeningocele) to the pharmacist she said the risk is still too high. However, I'm going to call back, explain the situation and see if the receptionists can do anything. They're lovely and very supportive.

As I've said before, I really feel like the GP has focussed so much on my uterus and a hypothetical foetus that will never be able to accidentally come to existence, he can't or won't see anything else. I just wanted to be able to have an honest conversation with him, so he could see that there are very specific circumstances surrounding my decision to refuse contraception.

When the complaints manager calls, do you think it would be worth explaining everything I've explained in here about how I recognise why he doesn't want to prescribe, but that there needs to be a conversation about this because as well as being infertile, my husband actually has spina bifida, so I'm well informed about the impact and risks of neural tube defects because we live with it every day?
I know a complaint can't force the GP to prescribe, but maybe it will mean that there is conversation about seeing the whole patient and not just part of them.

Who are you?

@Sconesandgravy if the practice manager goes into detail then yes definitely outline the specifics. The primary reason for complaint is that the GP is completely and totally unwilling to engage in any sort of conversation with you directly and insists on going through another person no matter how many times you ask. You can then go on to explain your unique circumstances which can only be presented to the GP if they enter some sort of a conversation

How strange, I take Topiramate and I've never had an issue with it being prescribed (I'm not on any contraceptives). The only 'warnings' I get is the odd NHS text message and on my prescription it mentions Topiramate can harm an unborn child.

Current requirements for pregnancy prevention for women being prescribed topiramate are strict. Contraception needs to be 'highly effective' - see links below for details. This is a hot topic and as there are alternative agents for migraine it is very difficult to justify ignoring the guidance. The GP is not unreasonable to require 'highly effective' contraception to be in place. Any arguments about this being paternalistic/ patronising/ invasion of privacy for your husband should be directed to the MHRA (government medicines licensing body) they make the recommendations. Your GP could a) cause a child to be born with preventable serious disabilities and b) lose their entire career - why would they risk it?

https://www.gov.uk/drug-safety-update/topiramate-topamax-start-of-safety-review-triggered-by-a-study-reporting-an-increased-risk-of-neurodevelopmental-disabilities-in-children-with-prenatal-exposure#topiramate-and-current-pregnancy-prevention-requirements

https://www.gov.uk/drug-safety-update/medicines-with-teratogenic-potential-what-is-effective-contraception-and-how-often-is-pregnancy-testing-needed

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1092865/July-2022-DSU-PDF.pdf

The GP is not unreasonable to require 'highly effective' contraception to be in place. Any arguments about this being paternalistic/ patronising/ invasion of privacy for your husband should be directed to the MHRA (government medicines licensing body) they make the recommendations. Your GP could a) cause a child to be born with preventable serious disabilities and b) lose their entire career - why would they risk it?

And if the GP only bothered to speak to her, he'd know that the OP's husband is 100% infertile. Why on earth would the GP lose their career? Surely that's what medical notes are for? A waiver form?

Again, this requires effective communication from the HCPs. Expecting women to concede and take hormones or have an invasive procedure to have an IUD fitted is bonkers. Refusing to prescribe in this case is essentially taking away a woman's bodily autonomy.

"Any arguments about this being paternalistic/ patronising/ invasion of privacy for your husband should be directed to the MHRA"

But it is all of those things. Because all guidance says the patients should be informed/advised of risks and the need to use highly effective contraception. All guidance says to take personal circumstances into account.
From the middle link:
"The likelihood of pregnancy is not constant and can vary with changes in a woman’s circumstances during treatment. Therefore, the likelihood of pregnancy should be assessed before each prescription of a medicine with known teratogenic potential"

The GP is refusing to do this. He is refusing to make an assessment based on me as a patient, despite all guidelines saying this should be done. The risk of pregnancy hasn't actually been assessed beyond the fact I'm of childbearing age and the GPs opinion that I could fall pregnant to another man. He clearly cannot see beyond the fact I have a uterus and would rather I suffer than actually follow guidance and assess case by case.

What the GP should be doing is communicating with me about my circumstances, and making a decision based on that. He should not be making a decision based on the opinion that because I have a uterus I could have a hypothetical foetus from a hypothetical affair.
Circumstances that should be considered:

1. I haven't had a child in 10 years, due to always being on some level of contraception.
2. My daughter is medically complex, has a heart defect, has had multiple open heart surgeries, and will need more within the next 5 years. She also has ADHD, ASD, moderate learning difficulties and I am her full time carer.
3. The fact I'm chronically ill, and undergoing regular invasive tests to diagnose. I'm also on another medication that isn't safe to take in pregnancy.
4. I give a lot of support to my husband who is physically disabled
5. My husband is infertile.
6. My husband's disability is caused by a neural tube defect. I know the impact and risks to life they carry. I went into further detail about what we go through up thread. Any decisions I've made are informed because how can I not be aware when we live that life as a family every day.

If after that the GP still felt the risk was too high after assessing the risk based on me as a patient, rather than the fact I have a uterus, then I would disagree with his decision but not make a complaint because it would be a decision he made fairly after being presented with all information. But he hasn't done that, because he can only see me as a vessel to carry a child.

MHRA do literally simply consider any woman with a uterus under 55 years to be potentially fertile. I don't agree with this and your GP may not either, but that is the guidance from the medicines regulator.

When you last had a child has no impact on future fertility from a medical point of view, ditto your daughter's circumstances. Women can and do become pregnant by men who aren't their husbands and it would be very naive of your GP to say 'ok you say your husband is infertile and you will never cheat or split up and have sex with another man to here's the topiramate'.

The GP is following the guidance which is very clear. They are not the one to direct your anger at.

Up to 45% of pregnancies are unplanned. GPs have to be extremely careful if asked to make a judgement call about this . It's not paternalistic it's safety

ukhsa.blog.gov.uk/2018/06/26/health-matters-reproductive-health-and-pregnancy-planning/

‘I feel like I killed my son’: epilepsy drug sodium valproate link to death

www.thetimes.co.uk/article/c0071fa6-78b0-11ed-b756-a5744446c41f?shareToken=0220498cbcecbfeabcdb0efd3e77b62f

It should be a woman's informed choice to make, not a GP's.