To be totally fed up with the sorry excuse that is the NHS?

[Carlie97]

I have gynaecology issues and I'm constantly bleeding heavy and leaky without a break as well as pain all the time.

I was told I had endometrial hyperplasia (abnormal cells - pre cancerous) last year and was due to have my six month check up last July to see if it's progressed. I heard nothing until I chased this and have an appointment for a hysteroscopy and biopsy in a few weeks time. They've outsourced this to a private company due to demand on the NHS but I've received my letter today and it says to take pain killers before the appointment as its going to be done without anaesthesia. This is an absolute nightmare as I've had it done without anaesthesia before and they had to stop because it was so painful. If they offer general, I think that's via a spinal which I can't have anyway. These are on my notes.

The coordination of my care has been an absolute shambles and my gynaes secretary is so unorganised, tells me thinks that aren't accurate which sends me round in a wild goose chase. She doesn't have a clue what she's doing. She also recently made it out like I wasn't going to attend my appointment as it's 50 miles away (where i used to live) and spoke to me like a child. As I'm bleeding non stop, suicidal (won't act on it) and severely anaemic, of course I'm going to attend! The gynae also tried to persuade me on the phone to have a mirena and take provera tablets. He obviously didn't see my notes that I've expelled two coils with flooding so much and I've told him numerous times that the tablets make me bleed even more.

They also scheduled me for iron infusion, months and months of me asking for this. I phoned the team who deal with this to query an appointment and they said I should never have been booked in with them as I'm out of area. They're still seeing me but what a fucking palaver!

I'm absolutely going to move my care to my new area when this is all done but in the meantime aibu to think this is unacceptable?

I'm sat here my heart beating so much every day because of the anaemia, I cry everyday, my mental health is on the floor and I'm honestly wishing each day that I go to bed and not wake up. I'm exhausted. I can't even go to A&E with the bleeding as friends have been and were sat in the waiting room for 27 hours waiting for a bed.

I’m so sorry you are going through this OP. There needs to be serious changes made, but sadly, there is no political party willing to act. the NHS is a sacred cow and facing reality won’t win votes.

That sounds like a tough situation. But you have got this far. You are in the system and things are moving forward.

I always find it best to write things in a list as it makes me feel more in control. Anaemia is exhausting - which makes it harder to think.

The iron infusion will take a little while to kick in (couple of weeks?) - but once it does you should feel a little better and then able to more deal with each issue. You need to ask about follow up for this. As if they don't stop the root cause, this will keep happening so you need to keep your iron levels constantly topped up. Don't wait for the infusion - take iron tabs, ear iron rich diet etc

The main item is the cause of the anaemia. Sounds like you have an appointment for this. Ask them at that appointment how your iron levels will be managed whilst the solution is being found.

The endometrial hyperplasia appointment sounds frustrating but if it needs to happen, then speak to them about concerns and move forward.

Good luck!

Can you go private for any of it? You shouldn’t have to but I would be very tempted. The NHS is woeful. I know someone who received a cancer diagnosis via text the other day. Cruel doesn’t even come into it.

Not great care, but what would you prefer? Do you think we should go to an insurance model? So you only get care if you can afford to pay? Most rational people would think the NHS needs better funding. Interested to know how tou
think this situation could be improved

Sorry op, truly very distressing, the nhs is fucked, has been for years, was a wonderful idea but sadly all these years on and it's not fit for purpose, the world has changed so much since it was set up.
I hope you find some strength to fight and if you can, push for more pain relief, disgusting and barbaric expecting women to just endure horrific pain.
I think we're already in a situation where the wealthy are insured and go private, and the poor are left at the mercy of the nhs, of which I've seen the best and worst, unfortunately it's a lottery as to what level of care you receive, and there's such entrenched back covering that it's impossible to get any accountability when you receive the worst of it.

YANBU, regarding the hysteroscopy (and biopsy), is there a reason that you would need a spinal anaesthetic instead of a general?

Like you, I cannot tolerate a hysteroscopy without anaesthesia and when these have been needed have had the procedure done as a day case with a general anaesthetic.

You can ask for a general anaesthetic, for example https://www.guysandstthomas.nhs.uk/health-information/hysteroscopy/hysteroscopy-in-day-theatres

Sorry to disappoint you, but it already IS like this!

My FIL has something wrong with him and breathing difficulties, and the NHS were insisting on going through their check list step by step and ruling out anything else before scanning him. It was taking months and he was in pain and absolutely adamant it wasn't any of those things.

He paid for a private consultation, was seen the next week, given a scan that would have taken 6 to 9 months on the NHS, and they found a blockage that requires quite urgent surgery. The NHS now have him on the waiting list for surgery (he can afford to pay privately but the there is also a waiting list and would only make 2 weeks difference). Paying privately has prevented 6 to 9 months of pain.

So it's already a two tier system for those who can afford to pay.

The NHS is on its knees. Far too many over-paid middle management, drugs companies that are fleecing them for money, an obesity epidemic that is costing the NHS a fortune, and people who are abusing the system and clogging up appointments for no reason whatsoever just because they have health anxiety and think every little niggle is something wrong.

@Carlie97 that sounds absolutely awful! Personally I'd consider going private and somehow finding the money to pay for it. When you're paying, you don't get stuck in the system, and have people that actually listen to you.

Sorry for your experience OP but for those saying that the NHS is no longer fit for purpose etc I'd be interested to hear of ideas for a better system. It's the easiest thing in the world to find fault with things and even abolish them (Farage has made a good career out of it), but much harder to do the real work of building something better.

We have an increasingly old, frail and ill population. Healthcare that is free at the point of use paid for from general taxation is a miracle when it comes to trying to cope with that,.especially given how expensive care is now (technology etc).

Unfortunately because there are so many old and frail people, often those who are neither of those things suffer delays. But I'd like to hear of a better system than the one we have.

It’s a joke isn’t it. Imagine the poor fuckers who can’t advocate for themselves

I am 100% in agreement with you @Carlie97Also your iron infusion should make a difference within 2-3 days. I have had many (not in UK)
Keep taking iron tablets with vitamin c as if you are bleeding you will need to keep your iron up.

I think part of the problem your having is that you moved. While I'd love to think the NHS is fully connected it just isn't. I had to be seen at 4 different hospitals for different reasons. Only 2 are technically in my area which seems to make communication with my GP very difficult. GP couldn't see results from one hospital as not in same area. The smoothest care I've had has been with the two hospitals in my area and with them everything has actually been fine. Also the one outside area who deals with the issue I have, that no in area hospital deals with has also been OK, but then my GP doesn't need to coordinate anything with them, I just deal directly with them.

Things are just not very joined up and they all use different computer systems as well so how I get results are totally different. Why we have such a misjointed system in this day and age is anyone's guess. But it does seem to make some things very difficult to deal with.

I agree that the NHS has sacred cow status but,I tend to find that in my personal experience those who find most fault are those who can opt for private for at least part of a course of care. Those who have no such option are less quick to criticise. Also I had a friend who had private health care who was incredibly snobby about using the NHS until her grand child was born at 26 weeks gestation and needed the highest level of NICU care. Suddenly the NHS was wonderful. It was a bit awkward for her to admit that her private health insurance didn't cover everything.

I was in a similar situation last year but it was my arse causing lots of problems. In the end I paid for private consultations and treatment (I don't have insurance) as I was so desperate and in so much pain and missing months of work (self employed). Everything got so much worse because I was mishandled and misdiagnosed due to delays with the NHS. It's a joke. I'm just glad I have enough savings, but I actually told the surgeon I would remortgage my house just to make the pain go away.

Sounds awful op but I’d push for a general anaesthetic as pp says, although ik it might not be easy.

Moving and being out of area does make things far more complicated (even though it really shouldn’t). When can you move all the services to your new area.
What makes you think a GA for your hysteroscopy would be a spinal? That indicates it would be an epidural not a GA. I had a hysteroscopy last year and made it clear from the start that I would only have it under general. No way was I willing to try it without. We are entitled to this under NICE guidelines so quote those to them. They have to honour this (though you may wait longer)

Hello, thank you for sharing your experience. I thought that all generals are done via spinal. How was yours administered? I feel hope now!

Thank you so much everyone. I can move to my local hospital after this procedure. My GP in my new area recommended I get the procedure under my old trust so there was no delay. I'm just biding time til I can switch, which I'll do as soon as the procedure is done.

My GP surgery says its the gynae surgery who will have to switch my hospital care to my new area but my gynae secretary (who I don't trust) insists it's my GP who has to do it. Does anyone know what the actual case is? Thanks 😊

anaesthetist pov - a general anaesthetic is where you are unconscious. During a spinal block you remain awake but numb to the pain. Both are options for hysteroscopy where simple analgesia/cervical local are not ideal, but the relative pros and cons depend on the individual patient's medical history. Epidural would be a most unusual choice for a hysteroscopy.

The NHS doesn’t exist anymore.

its pure luck if you access treatment.

it needs a complete overhaul. Transformational change.

The NHS is a shitshow that needs total reform instead of endless wasted millions thrown at it. But, until a government does that, it will continue to be less than good. 🙄

i would have thought the GP would make the transfer
otherwise the hospital would be charged

General anaesthesia are done via a cannula in the back of your hand. Or sometimes initially via a gas mask until you're asleep.

Spinals are for epidurals.

spinals and epidurals are very different techniques.

Yes sorry you're quite right. Serves me right for trying to do three things at once. But to the OP's concern, do you agree ahe doesn't need to worry that not being able to have a spinal doesn't mean she can't have a general anaesthetic?

I had a hysteroscopy done under general anaesthetic through the NHS fairly recently. I would push for that.

I think the funding of the NHS needs an overhaul but I do think some parts of it work. I'm currently receiving cancer treatment and the care I've had has been exceptional. I really can't fault it.