To be furious at GP surgery?

[Lilyxxxx]

DD (23) has had hormonal issues over many years. A few years ago a blood test threw up possible PCOS so a scan was arranged but then she was told she didn't have it. No further follow up although something must have been amiss for the urgent scan?

She has terrible acne, massive mood swings who started at puberty, very heavy painful periods and gets abnormally tired. We have family history of hormonal disturbance including high testosterone and hypothyroidism.

She has asked for a referral to an endocrinologist several times but this has been refused. Her latest blood test shows borderline results for high FSH, hypothyroidism and high testesterone but GP still will not refer for further investigation, just gave some gel for the acne and was very rude when she tried to press for a referral.

This the same Surgery who insisted for years I was not hypothyroid until I suddenly was severely!

We cannot afford a private referral. What can she do?

Change GP.

Yep move practise

You can press for a second opinion.

And you can also say you insist on a referral. Very quietly but in a tone that equals no argument. Womens' issues are ALWAYS sidelined, you don't leave the surgery until they agree to refer your dd.

This nonsense about women just having to put with hormonal problems has to stop. If you have a google around you may find some NICE guidelines or similar that may give you you more ammunition.

was very rude when she tried to press for a referral

you can also complain to the practice manager about rudeness

In your position I'd change surgery - they don't seem to be taking this as seriously as they could be and with the history of missing your severe hypothyroidism I'd be looking to see what a different GP made of your DD's medical history!

Change gp. I get a private consultation free through a health package at work. Check if you have one of those.

There are a number of options. You could change GP surgery- but this doesn't necessarily guarantee a different response and you really shouldn't have to. You could write a letter of complaint to the Practice Manager or take your complaint straight to PALS. What reason did they give for refusing your DD's request for a referral?
A bit of a side note, but has she been referred to a dermatologist for her acne? This is best practice if the acne doesn't respond to oral antibiotics (assuming she has tried those?) or if it's severe enough to cause scarring. I had horrendous cystic acne following the birth of my first child. I had to see three different GP's before it was taken seriously and treated as an actual medical problem.

In the meantime, for her acne and testosterone imbalance, she could try asking for Dianette? I was in her position about 18 years ago and 6 months on it cleared my skin and helped with the hormonal imbalance

you must push for a referral. What on earth is their reasoning for not giving one?

generally she needs a different GP. Have you complained to the practice manager?

She's 23
Why are you involved? It must be stressing you out.

I have PCOS and hypothyroidism and its a long road of trial and error to get the right treatment. Thyroid UK have useful forums.

I'd say change surgery too BUT choose a new surgery based on recommendation from people with similar issues.

There are 2 corrupt/incompetent reasons why this is happening and happens to women and girls but also some men and boys all over the country in my NOT humble opinion.

1 medical misogyny - it's only just starting to hit the news cycle in recent years but thankfully it finally is. Google it and the gender pain gap too. Girls and women's pain and suffering is not taken as seriously as boys and men's not even by women medics. There's also the issue of medical training where hcps are taught "typical presentation" of conditions based on how men present with them unless of course they're women only conditions which are barely covered in medical training at all. I noticed this when training as a nurse over 20 years ago and what I am hearing from ex colleagues and reading on forums currently training hcps are posting on not much has changed.

2 gps never fully assimilated into the nhs they didn't want to be for mainly financial motives (Google nye bevans comments on this iirc 'stuffing their mouths with silver') and again little has changed. Gp surgeries are to all intents and purposes small private businesses who are contracted by the nhs to provide the service they do. One of the factors in this is that specialist referrals come out of their own money, that is to say the pockets of the partners so as a result they are often very reluctant to make referrals. Obviously they have to tread a line avoiding outright malpractice or neglect but basically they don't like spending the money unless they really have to. In my opinion this is corrupt and unprofessional.

I'm actually surprised at one thing missing from the op based on decades of personal experience and that of friends/family and many posts/threads on here. That you don't mention your dd being pushed to have mirena could or contraceptive implant? Very common with gynae issues and again due to financial motivations - GPS get a bonus for 'selling' these to patients

Don't be fobbed off persist in getting that referral, I wish I knew then what I know how and maybe then I wouldn't have lost 3 babies to mc.

Good luck and stick to your guns.

Your daughter should try going to her appointments accompanied by a male relative or someone who is clearly an acquaintance.

I found that tends to make doctors listen to women. Unfortunately going with your mum, sister or a close female friend doesn't work.

I meant mirena coil obviously. Stupid autocorrect.

Sadly colafreezepop is right. Is her dad around? I had a long running thread on medical misogyny and a few posters noted that a make presence especially older males did seem to help. Shouldn't be like that unfortunately that's the reality.

I would ask for a second opnion. This sounds similar to what i had. Have had acne since i was 15, especially areound the chin (Hormonal) mod swings, constatnly tired and really painfull heavy periods. My GP actually said you are just a person who needs a lot of sleep, Really? Ended up going Private nad was finally diagnoised with endoemtrios. It changed my life, Had a laparoscomy and they found 3 cysts plus burned everything off, got the mirena coild fitted in and this has really helped my periods and mood swings. Unfortunatly the tiredness is a side affect so i manage by forcing my self to do exercise and resting when i can. Iron tablets help. I am very lucky i have an understanding paratner who help a good bit. The acne is still here though and i manage by making sure look after y skin and controlling the flare ups with cream. Hope she gets this sorted soon

Argh! Autocorrect. MALE presence obviously.

She's 23Why are you involved?

What? It's called being a supportive parent. When my daughter has something I'm the first person she calls for advice and a hand hold and she's 22. What do you think I should do say " fuck off youre 22 and this is stressful for me?"

What an odd thing to write.

Definitely see a different gp for another opinion. If you dont get anywhere with that, id see about another surgery.

Graphista. you are talking utter bollocks specialist referrals haven't come out if individual GPs budgets since fundholding about 30 years ago. The referrals done have no impact on income. Yes practices get hauled over the coals and publically named and shamed by the CCG for 'over referral' due to government pressure to decrease healthcare costs but that is NOTHING to do with practice income. Please stop peddling anti GP shite that is fundamentally wrong and scares people. It is also insulting to those GPs who put patient care first. There are good and bad in any profession.

To OP it is entirely reasonable to try and see another GP who your dd trusts and ask for an endocrinology referral. Demanding and getting aggressive is unlikely to help anyone. Rudeness is never acceptable and if go was rude a letter to the practice manager is reasonable as well. There may not be an easy answer to your dds problems but even being taken seriously and understanding the reason for symptoms goes a long way and an endocrinologist may be able to help.

Wow! Definitely get a 2nd opinion, whether that is from another doctor within the practice or at a new practice. Maybe call your practice to specifically book in with a locum to ensure you see someone new and hopefully not as prejudiced?

You can also make a complaint to the practice manager.

Not sure if this helps but here is Camden’s pathway which is guidance for GPs to follow for PCOS and if you scroll through here you’ll be able to see the referral criteria of many CCGs for PCOS referrals. Hopefully you’ll be able to find your own trust’s criteria and see if you daughter should be eligible for a referral or not and if your GP has followed guidance?

It is NOT bollocks. Having some "technical issues" here and can't find the articles I normally refer to on the matter.

Gps no longer pay for a&e referrals - not necessarily a good thing as lots of non emergency patients are now being sent to a&e as well as those who should be in a&e. That's a fairly recent change I believe (2015?)

There are good GPS I am not anti gp I am anti bad gps (of which there are far too many in my personal experience of having over 30 due to moving around a lot) and anti poor practice and poor treatment pathways.

Current guidelines and practice is far too reactive and not preventive - an ethos which actually costs more long term not just in terms of direct healthcare but in lost work days, higher welfare costs and social care costs.

If patients got diagnosis and treatment as easy as CLINICALLY possible it would save both those patients and the country a lot of money. And save patients unnecessary suffering of course.

Ok......but everyone thinks CCG is same as individual GP surgery. It really isn't. It's run for a cluster of GPs yes BY some GPs but the individual practices have pretty much NO say. Do you work in one/run one or do the accounts for one ? or do you base your ire (which is entirely understandable by the way if you've had bad care) on articles ?? Anyway I think I'm out as you can never get anything across on theses threads as no one wants to hear it. The general practice that people want and most GPs want to deliver disappeared years ago amidst unreachable targets, undeliverable promises to patients from the government and increasing complexity of medicine outpacing the NHS and the current GP model so no one wants to do the horrible job that's left. I don't blame patients for feeling pissed off either. It sucks on all sides.

I don't think ccg is same as individual gp practices I'm well aware of the difference thanks.

My opinion is based on a combination of personal experience (both as a patient/friend & relative of patients and as an hcp working in both nhs and private sector - residential care, don't even get me started on older women trying to get healthcare!), Discussion with other hcps including rare honest gps, practice managers and yes published articles not only in the general press but industry publications too.

I'm aware of the frustrations good hcps also feel with the system but gps have a significant collective voice the govt does listen to but generally rarely use it for the benefit of patients where such action would affect their income.

Gp care is generally pretty poor in this country and has been for decades.

And yes I've suffered as a result. Current gp is better than most but still toes the party line on several issues.

Over the decades myself and loved ones have been repeatedly ignored, dismissed and fobbed off until a condition reached crisis point. That's unacceptable and doesn't actually even save money it costs money.

14 years my textbook classic symptoms of endo were ignored and I was literally laughed at on several occasions and repeatedly told even with fainting and a&e admissions that 'some women just have worse periods than others'

I've asked drs repeatedly on this board even on ama posts how much all the gp appointments a&e visits and 4 surgeries that became necessary as a result of my NOT getting a CLINICALLY timely referral cost vs what the cost of my getting that referral and early diagnosis and treatment would have been.

NOT ONE has ever had the guts to even attempt an answer.

I understand your frustration and anger I really do and I'm sorry you had poor care. I don't think you have got an answer about funding because GPs would not know the cost of surgery etc although I'm sure you are right. And yes endo is often badly managed and 'women's problems' under estimated - especially but not always, by men. Hopefully this is changing.

PCOS issues are roundly ignored on the NHS unless you want have a baby and then you get offered drugs. It’s shit. I was offered the pill at 20 when I was diagnosed and have had no help since. No preventative help; just told to lose weight. Complain but it’s pretty soul destroying