To be so annoyed with bloody paternalistic NHS

[MyKindHiker]

I am a lifetime migraine sufferer and as I'm getting closer to menopause they are getting worse in frequency and severity. At least half of all days I wake up with some form of aura, go through packs of nurofen and sumatriptan. Anyways it's been years since I considered any intervention other than just taking meds when one coming on (not necessary as not that frequent through adulthood), but I gather from talking to others there are some really effective meds available now which can prevent them entirely.

Go to GP who looks at recent bloodwork done to check my hormones and says as I'm still fertile and having periods, he can't prescribe in case I get pregnant while on them. I explain I have 2 kids and don't want more. In fact, can't technically have more anyway due to birth injury with second. And husband has had vasectomy to prevent accidental pregnancy as due to birth injury I could get pregnant but couldn't carry baby to anywhere near term. Which is beside the point as I do not want any more kids anyway.

Anyway doc says I still can't have the meds and the rule is for women of childbearing age the rule is they need to go to a special clinic with a 12 month waiting list and do all the steps first (elimination diet etc... I have TRIED THIS OVER 30 YEARS) and prove I'm not pregnant.

I mean what is with these people? If I was a man, I would have just got the meds to prevent a very debilitating condition. But because I'm a woman I can't have the meds 'in case' I become pregnant as though I'm just a uterus on legs who can't think for myself and decide not to become pregnant? Why is my word not enough that I will not have an affair with a non-vasectomied man and get myself up the spout. Ridiculous.

You could consider a Mirena IUS.
Prevents pregnancy, safe in migraines and also licenced for use in menopause.

I suppose it's because if you become pregnant then there would be two people involved (your unborn child). The NHS would have a responsibility to the baby as well.

I had the same issue and ending up getting the pill prescribed and not taking it. I’m a grown woman who has suffered terribly on the pill. I won’t take hormonal contraception again. It’s ridiculous to expect me to take medication that actively harms me in order to take other life changing medication. I’ve tried multiple pills and each one has been awful. I know I’m just particularly unlucky, but it didn’t change the fact I was told that the non hormonal coil was unavailable. So I lied, and past asking to see my prescription, they didn’t ask.

If I had gotten pregnant, I would have gotten an abortion. I also took monthly pregnancy tests and used condoms with good practice. If pregnancy had occurred, I would have gotten an early term abortion. To me, that would be far less distressing than a) having continuing health issues from not being able to access medication or b) taking the pill which seems to cause havoc for me (whether it be the mini pill, IUD, patch, whatever.)

It also seems pointless to insist on being on the pill when I know so many woman who have gotten pregnant on it from taking it haphazardly and don’t even realise that XYZ destroys its efficiency.

Is it Topimirate or sodium valproate?

If it's Topimirate, in some health authorities a GP can't start the medication for men or women unless this has been requested by a neurologist or specialist migraine clinic.

And you've just proven why GPs have reason to suspect people lie to them so have to take every measure to ensure they're adhering to the prescription guidelines.

It's not GPs being paternalistic or misogynistic or not trusting women in particular, it's knowing that people lie. Particularly to get what they want.

To add: the way I view it is that it’s a very lazy, bureaucratic measure to tick a box. Absolutely no flexibility for the individual woman, and a gesture that whilst I understand the aims of (preventing conception of genetically mutated foetuses), ends up harming women and is most likely decided under a significant amount of paternalism. I’m not against the aims or the harm it seeks to counteract, more that the overarching purpose is so strong, it disregards woman who are suffering here and now.

On top of that, these measures often feel like a half hearted, “oh look, we’re doing something.” My autonomy and status as a grown adult woman who is capable of using condoms properly is thrown out the window, yet if I show them a prescription for the pill, I can access the same medication without even any education on the pill, or them even asking me I actually take it. That’s what’s annoying.

There’s no flexibility, very little regard given for autonomy, and on top of that, it felt more standardised theatre to prove they did it.

Are there really that many woman going around who want to conceive genetically mutated foetuses? Is this risk substantial larger than the amount of women who don’t realise what mitigates the pills efficacy? I know several women who have gotten pregnant on the pill and genuinely had no idea that throwing up within the first few hours of taking it could impact it.

I’m going on a bit now, but to sum it up, of course I have no issue with the harm they’re trying to prevent. But is the inflexibility.

Maybe other doctor’s are not as bad. But mine was. And that medication ended up changing my life, and I wouldn’t have taken it if I had to take the pill as well, because multiple forms of contraception that were hormonal ruined my life in other ways. I ended up lying about taking the pill as it was the easiest option, but that shouldn’t have to happen in the first place.

Probably. But it’s not really “taking every measure” if all I had to was present a prescription I then didn’t take.

I got told no non hormonal prescription was available. End of. This was a few years ago, maybe it’s better now. If there was some flexibility offered in the first place, I wouldn’t have lied.

My recent encounters with GPs have been telling them what type of skin condition I have from Googling it because they didn’t recognise it, pointing out alternative (edit: as in similar available prescriptions, not natural remedies) medication with no side effects that was just as successful, and also diagnosing my dad’s wrongly diagnosed arthritis. Again, from Google.

I’ve also lived in other countries with socialised healthcare and it was no different, ironically. I don’t think it’s a UK issue specifically. I know they work hard, I know they’re just like the rest of us. But when it comes to my health, I find increasingly more and more that they slap on the first convenient label and send me on my way until I come back and we repeat the process.

Main point: if my choices were not a) take medication and be on the pill and suffer from being on the pill or b) not take medication, suffer and then not be on the pill, I wouldn’t have lied. No alternatives were offered. If they had provided a third option rather than expecting a standard measure to accommodate everyone, then that wouldn’t have happened.

And I’m sure this happens to men. I’m sure they are also victims of standardised systems which are supposed to fit all men. However, pretending that the healthcare system doesn’t have misogyny in it, especially when it involves contraception, is ridiculous. Even healthcare professionals admit this now. It’s important to recognise, because that’s how we fix it.

This thread is mind blowing.

Of course it's paternalistic.

Funny - they give men who drive lorries for a living high dose painkillers becuase... wait for it.... they expect those men to listen to and understand the risks of operating machinery while on these painkillers, and to a) put things in place to manage those risks and b) accept responsibility if they don't.

But the moment there's a potential foetus in the picture... no no, women can' tbe trusted.

If you tell me that my meds might be bad for any potential foetus I might find myself pregnant with, then my choices are to a) not get pregnant b) If I am pregnant abort the foetus or c) carry to term and accept the risks accordingly.

Well, yes it was taking every measure per the guidelines. You said you were prescribed something and were taking it, you provided the evidence of the prescription and the GP has to go on that.

And it covers them in terms of litigation because no GP is able to prove someone is taking something they're prescribed short of extensive and expensive blood tests which even then may not prove or disprove due to individual metabolism.

What other measures do you think they should take? Ask you to send a video of taking it every day?

If you want to lie to your GP to get what you want, that's on you because if the worst happened, the GP is covered in terms of you trying to litigate because they followed the pregnancy prevention programme.

You and others on this thread also seem to think abortion is risk-free and it isn't. So all the 'I'd have an abortion so there'd be no risk of a child with birth defects' are missing the point that abortion carries risk of infection, PID, uterine damage, even sepsis so if a GP prescribed without all the safeguards in place to protect you and them, there could be a terrible outcome from an abortion for both the individual and the GP.

Nope.

It's because it is the legal responsibility of everyone male or female to not drive if they have legal or illegal drugs in their system.

https://www.gov.uk/drug-driving-law

The legal responsibilities of driving while taking medications that impair their driving are on the driver, not the GP.

And the legal responsibility fo rensuring a foetus is safe is on the woman carrying that foetus. And it's her decision on whether or not she wants to put the effort in to keep that foetus safe or not, or even keep that foetus.

Doctors should tell us risks, but we are perfectly capabel fo deciding how to manage those risks. And the health of a fictional, unwanted and extremely unlikely to ever happen foetus certainly does NOT trump the health of a woman who is actually alive and real in this world today.

If anything were to happen, they’ve fulfilled their part. They’re protected. My GP, in all of this, is just issuing guidelines they have to follow. They don’t make them. My issue is the fact that my GP is given so little to work with- they can’t help me if the framework they’ve been given doesn’t allow them to help me in the first place.

My issue is that I have to lie in the first place, not with every single GP following procedure. My individual GP might not be paternalistic, but the guidelines they have to follow are. That’s where my issue lies.

And that goes back to my original point: the inflexibility and absolutely no regard these guidelines give for an individual woman’s health. There should be a third option. Other options.

I know abortion isn’t without risks. Pregnancy has many risks in general. However, the side effects of the pill are also harmful to me and the main issue to me is that there was no way around that.

I can’t take the pill, I use condoms. In general, the chance of me getting an abortion is higher. But that doesn’t change just because I’m taking medication that causes foetal abnormalities. If I got pregnant, I’d get an abortion regardless of whether I’m taking medication or not. That risk is always there- taking that medication didn’t specifically increase it. In general, as a woman, it’s my right and an autonomous decision to weigh up the risks and decide the side effects I get from hormonal birth control outweigh the added security/further chance of preventing pregnancy. Taking medication doesn’t change that.

I’m not disagreeing with you. I lied. But that’s a symptom of a poor system, not the main problem. The issue of people lying is caused by a much larger issue, which is the more important one. That’s the right thing to focus on. If I hadn’t lied, I’d still be in pain. I refuse to believe that that’s the lying is the most important, overarching issue.

I lied “to get what I want.” Aka, a pain free existence. I lied because the standardised measures failed me. I don’t see how lying is the big issue, not that I had to lie because I was suffering and there were no other options. That is quite literally misogyny.

And that might work if there weren't numerous examples of litigation which absolutely back up why GPs can't and shouldn't prescribe dangerous medications outside of the guidelines which are based on all the catastrophic outcomes that occurred when the guidelines were not in place.

And as I said before, abortion is NOT risk free. What if a GP prescribed outside of the guidelines which is what OP wants, and has an abortion which she says she would have to have anyway results in her becoming seriously ill from sepsis? Or even dying.

In that case OP or her DP if she died would be able to litigate for medical negligence or malpractice because the GP did not follow the prescribing guidelines.

The guidelines are in place for many reasons including because too many GPs took the word of patients saying they wouldn't get pregnant or couldn't who then did and then sued the provider.

Google sodium valproate or topimirate solicitors - there are many.

Also, there are many women who can get pregnant at any given time and will decide to get an abortion, regardless of being on other medication. Many women may choose to avoid hormonal contraceptives/stick to condoms and ‘risk’ an abortion. Pregnancy itself is risky. Contraceptives and the combination women take/ the option to have an abortion if necessary is a risk women decide for themselves everyday.

I guess my point is that in this scenario, an abortion isn’t specifically a risk associated with taking a medication that causes foetal abnormalities. It’s a risk many women choose to take regardless, as is pregnancy, as is the pill. These choices are our reality, regardless of medication. The important part is being able to have that choice.

@BeAmberMember

The issue is that the risks can and should be explained - THAT's the guidelines. If the risks are NOT explained then of course the GP is at fault. But if the risk is explained and then the woman still chooses to go ahead and do it, taking on that risk, then no, that is NOT the GP's fault. If te GP wants to protect himself by making the woman sign something to say she accepts that risk, so be it.

Instead, in this one case, GPs are saying that they don't trust women to believe them about risks so they won't let them have it at all.

And that IS the same as prescribing strong painkillers. A Gp does so, and warns the patient that if they drive under the influence of these drugs they will be at risk. if the doctor does NOT mention this risk, then they may well be considered to be at fault. But ifthey yhave, the risk is then taken by the person taking the meds.

ETA: if the problem is that women are suing GPs all over th eplace because of this issue, then the issue is how the guidleines are being implemented. And I would argue strongly that any strong medication with strong side effects needs the patient to specifically and formally acknowledge those risks right up front.

Honestly, I would just go to a different doctor and lie and say you’re post-menopausal. There’s no way for them to know. If you’re sure that a possible pregnancy is the only reason why they wouldn’t prescribe these drugs?

Look at it from a wider angle as well.

I think the point about abortion risk is being overstated, because the possibility of getting pregnant and the possibility of choosing an abortion are not risks created by this medication. They are part of life for anyone who is sexually active and not using birth control all the time. Many women choose not to be on the pill for personal or medical reasons, and many who become pregnant choose not to continue the pregnancy for reasons that have nothing to do with fetal exposure.

Your argument assumes that these women would otherwise keep the pregnancy and that the only reason they might consider an abortion is because of the medication. That simply is not the case for many people. Some do not want a baby regardless, and if they became pregnant even without this medication involved, they might still decide on an abortion.

With this logic, then all women who do not want to be pregnant at all times should be on birth control constantly, and that is not realistic. The medication does not introduce a unique or special risk of abortion. It only affects the potential reason someone might choose not to continue a pregnancy, not the fact that they might make that choice anyway.

Ahhh, Toprimate really helped reduce the amount of migraines I had until a different GP refused to prescribe this to me. I cannot have hormonal contraception as I have Intracranial Hypertension. I cannot risk getting pregnant again due to having a c-section rupture several years ago during labour as I was told I wouldn't manage to carry full-term. I am long-term single and carrying for disabled children so have no interest, or time, in another relationship. It did lead to many, many months of severe migraines due to the Toprimate being stopped. Other various meds were tried but I reacted badly to them. I have recently had a med prescribed which has only recently become available on the NHS. It has helped but I find Toprimate worked better. I am terrified still, that the same GP will refuse to prescribe these and I will end up in the same state I was previously. I don't know what else to say, but I'm so sorry you're going through this. Logically, I can understand your frustrations, but I can also understand the position that GPs find themselves in as they do need to be wary when there is always a potential for action against them. At the same time, if only they would think about that the rest of the time when they do tend to make so many other mistakes! (I could be cynical due to the amount of issues I have encountered over the years and the fact my child has had issues since the rupture was dismissed on the maternity unit)

Oh, meant to add, that despite me pointing out that I couldn't have the various forms of contraception they kept offering me, they still continued to do so! I cannot have a coil at all due to the ruptured uterus but that was still always offered, also. It felt like I was banging my head against the wall.

People have Botox/ neuromuscular injections for migraines- is this something that’s been explored?

I know it gets used as a mood stabiliser and and for epilepsy, my DS has epilepsy and has been on it. I was on it about 15 years ago, maybe a bit longer and I had to have a coil put in to be able to get it back then. I wasn't on it for long to be honest and even back then they tried to avoid using it as lots of people complained of weight gain and hair loss and it was kind of a last resort even back then. I personally had a degree of both and it didn't help my migraine either, it was a horrible drug for me. However it always does depend on the patient and for some it really helps across a range of conditions that are otherwise hard to treat.

Your doc sounds unreasonable you have a right to a ‘ second opinion - is there someone else at the surgery ?

You're quite right OP.

They do treat us women like we're nothing more than baby machines, goodness forbid we might do anything that affects our chances of reproducing and our lady parts belong to them no matter what we might say to the contrary, or argue.
Are the declining birth rates something to do with this, I wonder?

Get a second opinion, I used to get migraines as a teen so I get how it can be.

Maybe go and see a Private Consuitant as a last resort at somewhere like Spire Health

Could be expensive but worth it.

I also suffer from migraines but not as serious as you. Really find that Sweet Marjoram Essential Oil helps

Hope you can get this problem sorted soon

Sounds like hell.

Good Luck.
🌻🍀🤞

@Paganpentacle The OP doesn't need any form of contraception - her husband has had a vasectomy.