To go to A&E? Please help

[Adviceneededpls1]

I absolutely know I need to get real medical advice and that’s not what I’m looking for here I guess I’m seeking reassurance here.

My DD is 15 and currently on her way home from school with her Nan, I’m on the train home from work and going crazy with worry.

She has had severe heavy periods for a couple of years and has tried mefenamic acid, the mini pill and now the full pill continuous without breaks. She started the full pill in October as she was enduring a 4 week long period. She stopped bleeding for about 5 days and has since been bleeding heavily again non stop for approximately 18 days. She is dizzy, pale, lethargic, complaining of bone and stomach pain. She’s also got clots of blood.

She’s autistic and struggles to communicate pain so when she does I know it’s severe, she’s having paracetamol and ibruprofen every day for pain relief on her tummy. Her recent blood test revealed serum ferritin level of 16 which she has been prescribed a low dose iron supplement for. However the GPs just don’t listen to my concerns, I’m beyond frustrated with their care, refusing to refer her to gynae and not joining up symptoms for example one doctor printed out leaflets on stretching and said that’s why she was feeling weak and had painful bones!

Anyway, I’ve tried to get another GP appt and there aren’t any. What do I do now? My DD is crying in agony, she looks so withdrawn and weak, she has stopped her weekend hobby which was her only real form of socialisation and it’s now impacting her GCSEs. Would A&E just send us away? For context I had a full hysterectomy at a very young age due to severe endometriosis but even that isn’t taken into consideration.

Please help, I think my gut is telling me to take her but any advice to get me through this train journey home would be great!

I would first phone round the local hospital gynae departments and check if they see teenagers. Then I'd try those a bit further away. If you can afford a private referral or a private abdominal ultrasound scan or both go for it.

The change in advice on the iron tablets will be because the situation has evolved. Daily rather than alternate days gets her more.

It’s different advice for a different situation.

Lack of eye contact and scrolling is usually because they’re looking for and checking the relevant prescribing guidelines. Out of hours work without access to full notes so it is generally a patch up the immediate issue approach.

In your health trust it may not be possible to make a direct referral to gynae for under 18s. Health trusts have varying protocols. It’s pretty common for all under 18s issues to go via paediatrics.

In addition to the iron supplements, it’s worth working hard on dietary iron. British dietician association have good info sheets.

Not necessarily at all. The every other day advice improves absorption, but is relatively new research. It hasn't got through to all doctors, some of whom still incorrectly think that bunging in more iron will up levels faster.

Scrolling and no eye contact is simply bad communication and a failure to reassure.

I am absolutely devastated that care for girls and women is still this poor. I am sick to death of seeing GPs and medics on shiny TV sofas, earnestly telling women to “go to your GP”, to “advocate for yourself”, to “get checked”. All while, in reality, so many of us are met with rushed appointments, blank stares, and a complete lack of curiosity or care. These soundbites feel hollow when your dd is sitting in front of a doctor, pale and in pain, and they can’t be bothered to even look at her properly or ask a question.

Not surprise - I've had it on here have you though of going to a GP - went to many over the yeras to get shoved on pill and told side affects including serves anxiety weren't related to it - then taken off when break though bleeding happend and nothing more. I was lucky spent years pg and bf and afterwards I was normal.

You could try writing to the Practise manager - saying she meets the NICE guidelines for referal on but you keep being told this isn't possible due to her age - and can they put that in writing for you - (so you can complain higher if needed) or so a referral gets put in. Though private would likely be quicker if possible.

I really feel for your daughter, and for you OP, it is so difficult trying to advocate for our DDs when faced with so many challenges.

I ended up taking my DD privately after the GP ran out of ideas. She had a mirena IUD fitted under general anaesthetic in the end after other methods failed. It hasn’t fully resolved things but has helped.

I can highly recommend the private female gynaecologist we saw if you are in the north west. She does run an nhs clinic at Alder Hey too but I believe the waiting lists are 18-24 months.

I hope you and your daughter can get some support.

Also, consider changing GP surgeries. You are free to do that at any time. Sounds like your current practice isn't great. You can do it online.

The op needs to push for her dd to be referred to paediatrics. They will then involve relevant specialists.

100% OP. I hear you. It's unacceptable.

For iron have a look at tissue salts. Its one of the best ways if not the best way to supplement iron. Used to be available in Boots or Holland&Barrets and similar places.
https://www.newerashop.co.uk/products/new-era-no-4-ferr-phos-240-tablet

I've been following the thread with shock. I know UK gynaecology care is a disgrace, but this is so beyond my comprehension. Its exhausting just to read about your experience. Its normal to expect basic level of care for yourself or your suffering child.

To give some perspective - I come from a post-communist country, ie. whats called Eastern Europe in the UK. Its considered normal to be able to get an appointment with your gynaecologist if you have an acute problem within a couple of days. Also there are out-patient gynae offices in hospitals where you can turn up and be seen that day. Every gynae has an ultrasound so you get that done as part of any examination without hesitation or delay. Teenagers 15+ get seen by normal adult gynae drs.

I am really really sorry to read what you are experiencing, its utterly ridiculous!!

Snacks and pillows are really good advice for A&E visits as you can be hours/days. If you've got a sick child and can make them more comfortable why wouldn't you? Especially if it's night time and everyone is exhausted. Good luck getting given one there if you're not in a bed!

I've had many A&E visits with a child with breathing issues and always took a bag, including snacks, blanket, toys/ cards/DS to distract him. Kids can be nearly at deaths door but still want to play and distraction reduces stress which reduces pain, for all ages.

He was anaesthetised several times while still playing on the DS - the doctors said leave him, it's better if he's relaxed. According to some here I should have prised it out of his hands to prove how sick he was 😒

Of course don't abuse A&E but please also don't make assumptions about other people there, you don't know what they are dealing with. No one goes to A&E for a laugh because it's bloody awful. OPs daughter had been bleeding heavily for weeks and the GP wasn't interested. Given that A&E prescribed medication to reduce the bleeding and didn't tell them to bugger off, it was hardly a wasted visit 😒

I'm not surprised that you have better experiences in a post-communist country. I have colleagues who go home to Poland to access health care and my OH works with someone from the Ukraine who went back there to access healthcare because they weren't getting anywhere with their GP here. Let that sink in - it's easier to access healthcare in a war-torn country than it is in the UK, even when you factor in the cost, inconvenience and risk associated with travelling there.

Women's health seems to be particularly underfunded and if you are struggling with a gynaecological condition it really does feel like the NHS just isn't there for you anymore. The scale of the issue is laid bare in this thread with various women from across the country saying they have had the same experience for themselves and their daughters. I wonder if this is something that Mumsnet would consider running a campaign on?

Obviously, a young child needs something to distract them if they are well enough to play. However, OP’s daughter is 15. Old enough and ill enough to not need a duvet set and a pack of cards. Common sense situation

I was in A&E last Christmas wheeling my mum in a wheelchair after she’d had an open ankle fracture and no district nurse checked the wound and I took her as it was infected. My elderly mother was then kept in two weeks for iv antibiotics and missed all of Christmas. Waiting in a&e there was a twenty something man with his girlfriend, sister and mother, all eating packed lunches and snacks galore. My mum had to wait to be seen behind jokes like that and we were there 12 hours. People are treating a&e like a day trip out. It’s not.

Of course it's not a day out, but people still have to eat! Would it be OK if they ate the food from a vending machine? Or is that verboten too?

Yes OPs daughter is 15. She was in great pain and it was night time. What's wrong with taking a blanket/ pillow? Or was she supposed to suffer to prove she was worthy of being there?

I'm sorry you had a bad experience with your mum, but she didn't have to wait behind people that you deemed not as needful as her - everyone is triaged on arrival and cases are seen in order if clinical need, not time of arrival.

I agree, don't waste A&E resources, but I don't see how taking a few comfort items with you if you need to go is doing that.

I don’t remember tbh I was listening to Woman’s Hour on Radio 4 whilst driving on Monday

you could listen to it on BBC iplayer Sounds, it’s about halfway through, the Dr they had on was talking about her own practice in Oxford, and she mentioned another in Bath but I don’t remember data sources that might have been referred to

they did say that it’s shockingly under diagnosed, and there was an interview with a member of the public who was telling her story of going from total exhaustion to being functional and effective again, through an iron infusion

well worth a listen

You are directing your irritation at completely the wrong issue.

@Adviceneededpls1 have you tried ringing the clinic you want a referral to and asking them for advice? I rang the medical secretary of the consultant i needed a referral to and she was really helpful.

I hate to suggest this but, what made the GP listen after I’d struggled and kept being told there was nothing wrong with me - was sending in DP who is male. I finally got referrals and help

When you do get to see a private specialist, please ask them if your daughter could have adenomyosis. I had this and was fobbed off for absolute years. Every month I would eat nurofen, pass out and my body would swell up with pain. I had investigatory op, which was inconclusive, and then I used to turn up at my GP every month to prove the pain and swelling. Just ridiculous. Women are gaslit on reproductive health and sadly by women gynaecologists too. I was.

I agree with this. I took my youngest to the GP because, following a bout of the cold, he seemed to be having problems getting a breath. In the waiting room he was rolling, commando style, under the chairs having a great time. We were the only ones in the waiting room, so he wasn’t annoying anyone except me! Anyway, 15 minutes later we were on our way to the hospital in an ambulance. At the hospital he played with the toys and wandered around looking at the fish tank and watching for ambulances. He was in fact very ill, but you would never have known to look at him. If I had known we would be sent to the hospital, I would have packed all the bloody snacks and blankets and iPads!

Yes there's a difference between taking snacks and toys for a poorly dc and a pp who said 'Waiting in a&e there was a twenty something man with his girlfriend, sister and mother, all eating packed lunches and snacks galore'.

Some people seem to view it as a family day out there really should be a limit to one person per patient with gadgets etc all on silent.

I must admit, the times I used to sit up there when I had a burst cyst or agonising endo pain I did find it frustrating when people brought along the whole family who would take up limited seats. I understand when a loved one is poorly it’s worrying and naturally everyone wants to be there and support them but surely one person is plenty and they can swap when needed. I’ve seen very poorly looking people sitting on the floor before when there are large families taking up seats for one patient.

There is definitely gynaecologist who see kids.

And a Paediatrician wouldn't be able to do much for your daughters issues.