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.

This !!

I think that's true and already happening but I think they quickly go into private practice as there's so much demand and they can't do things the way they want to in the NHS.

Sorry that has been your experience, it absolutely has not been mine. I am able to see my gp when I need to. Yes there can be waits for some things (gynae is particularly bad) but I am able to get the care I need, and I honestly don’t know anyone personally who hasn’t been able to get care they need. The odd one may not get what they want, but that’s not really the same thing, is it?

This
I so appreciate the NHS, expert care irrespective of your ability to pay.
I totally understand that there are areas that require improvement and I have family members who are waiting for NHS treatment and experiencing symptoms whilst doing so.
As poster has said, our population is increasing with associated demand for health care.
I have family in the USA and the health care system they describe over there reinforces my appreciation of the NHS

Are you actually so stupid you think they would reduce taxation if the nhs was no longer free at the point of access? We’d pay for whatever the new system is in addition to the tax and NI we already pay.

And yes, we all know there are other potential options than nhs or American style, I’m just too realistic to believe we’d get any of them.

I’m not clear how you think paying a nominal fee (which absolutely would not remain nominal once they’ve gotten us used to it) would magic up more beds or facilitate social care care packages to get people home, or to nursing homes? People definitely abuse the nhs and it might help that, but it’s not a simple problem and there isn’t a simple solution.

The population has grown massively over the past few decades. In my area, we're still coping with the same number of hospitals (1) that we had in the 60s and 70s and probably before that come to think of it.

Do you think we should go to an insurance model? So you only get care if you can afford to pay?

Yes I do think we should go to an insurance model similar to what most European countries have, with a safety net for people who can't pay anything. It would be less two tier than what we currently have.

Most rational people would think the NHS needs better funding

They don't. The NHS has been a bottomless money pit for decades and the service gets worse and worse every year: there is no correlation between money in and service out. Throwing more money at it is not going to resolve issues like this. The only solution is structural reform to the way its funded.

OP sorry you're going through this. It sounds horrendous.

This is absolutely horrific.
https://www.chroniclelive.co.uk/news/north-east-news/four-women-share-horror-stories-32973828

even for cancer, it’s can still very much a luck of the draw thing and postcode related.
my experience with the NHS and cancer was awful.

My husband had a similar, falling between the gaps, type experience. We had moved house but kept our old GP, on their invitation. There never seemed like a good time to shift our care to a GP nearer our new home because of the ongoing care and imagining things might get worse if we did. But it did give us time to research who were the good GPs in our area and after one disastrous episode of care, we couldn't see how it could get much worse so we moved practices. The difference was like that between night and day. But, primary care (GPs) and secondary care (hospitals) seem very disconnected at the moment. Secondary care just seem to be fire fighting the whole time with long waiting lists. It's fine if you are on an urgent pathway like cancer but everything else seems a bit hit and miss. It's frustrating, but you have to keep chasing and advocating for yourself. We have a friend who receives private care through BUPA. I have to say that has not been exactly seamless either. When the consultant's secretary goes on holiday there is no one to cover because this is not the NHS with more staff and people to take over. Every bit of care has had to be verified as legitimate for the policy sometimes leading to worrying delays. Tests and scans have been provided many miles away because that's where the equipment is. Private care is not necessarily better. Anyone with a pet who has accessed veterinary care through their pet insurance can testify to how well that sometimes works out.

This makes me so cross and I’m so sorry OP. It’s medieval what women are supposed to just tolerate, can you imagine anything on the same sort of scale being offered to a bloke and them being told to pop 2 paracetamol, and then patronised if they said they didn’t actually like the sound of that.

Not the same but I was told by my dentist that I wouldn’t ever be able to have sedation for a filling, a friend of mine was telling me a couple of years later how he was as high as a kite when he had a filling because he’s such a baby he needed to go somewhere that does sedation.

There will be other options if you push, and I know everything is harder work when you’re feeling as you do (my DSIS is going through something sort of similar) but have you got anyone who can attend appointments with you or something so you’re not trying to keep on top of everything yourself?

I feel for you I really do. I could have wrote this 12 months ago. I spent 17 months on Zolodex (Medical menopause) which was supposed to be for 6 months at most while waiting for an ablation. I have have had 2 hysteroscopies with biopsies due to them losing 1 set of results 🙄 and my care was not adequate. I turned up for consultant apps and surgery dates( with letters as proof) to be told he wasnt in on those days. My body has also rejected 3 coils so I honestly feel you. Its a horrible place to be. Please put a complaint in via your trust using PALS. They will have to do a full investigation into your care ( or lack of) and it really shows your struggling and not messing around anymore. I had to do this to finally get my ablation done. I also had to have this done awake with no LA as the wait for GA was even longer and I was desperate. It isn't something I would do again awake the pain was unbelievable. Please please complain and push for adaquate care because from a Gyny POV care is not acceptable or adequate. Hang in there!

The NHS is on its knees! It’s terrifying to be honest. It needs more money, which becomes much less forgivable once you realise just how much money there is in the South East!

As someone from the north, 80% of the people are richer than I could have even dreamt of. Taxes on wealth rather than earnings need to go up.

Same with my DH - it's been a massive battle to get them to do the basics of appointments for chemo, etc - sheer incompetence time and time again. No problem in them deciding on treatment plans etc but actually getting it done is a different matter - constantly passed between depts, messages left and never responded to, fouled up appointments, etc. Far too many people involved, no single point of contact, meaning an almost full time job just arranging and re-arranging appointments when on active treatment.

People who want to keep this shambles of an organisation are very likely the people who are paying little in taxes. There was a thread recently where someone was bleating that some people cannot afford a pack of paracetamol.

So they are effectively saying that because someone might not be able to afford 30p the whole of the NHS isn’t up for a massive re organisation.

Its a bloody disgrace and not fit for purpose.

Nothing short of medical misogyny. OP, I’m terribly sorry you are going through this in such vulnerable circumstances as well. You deserve so much better care. In fact, it doesn’t sound like you’ve really received care at all. I’ve had gynae issues. Now fertility issues. My referral was rejected from
NHS consultant (male) as I’d been trying to conceive for 9/10 months instead of the 12 months. Absolutely tedious. I have PCOS. Even my NHS GP (female) was angry. She’s now resubmitted the referral 2 months on the dot later and I’m on a 16 week waiting list! If only they’d accepted it sooner I was hardly off the threshold. It’s like they want us to suffer and give below par service…… bare minimum.

You are not unreasonable. This is awful, and if it was the first time I'd heard a story like this, it would still be awful. But I hear things like this every single day. It's all very well saying be grateful it's free, and we don't want a situation where only the rich get healthcare, but the fact is nobody I know has had decent treatment in the past couple of years, and so many people who were previously anti private care either ideologically, or because they're hard-up, are using private care because they're terrified.

I was referred by my pacemaker team for an x ray and new medication. “ Oh viques, we’ll book it at your local (same trust) hospital, save you a journey”. Yeah, right.

They did, and it was fine, appointment booked, pharmacy informed . All sorted. But why should I feel amazed that something so simple actually worked. Says a lot about how expectations have lowered. It should all be so much simpler now everything is online, no letters getting lost or not delivered, but sadly, so often even the simplest things go wrong.

A friend was due to be discharged after a stroke, transport booked, everything arranged. Then on the morning it dawned to someone on the ward that although she had initially been given blood thinning injections because of swallowing problems they had not arranged to change her to tablets, and the only person who could prescribe (really?) wasn’t due in for two days. So two more nights in hospital, frustrating for her, expensive for the trust . Yet with a teeny tiny bit of joined up thinking she could have been on the tablets for a few days to check they were working and the planned discharge could have been completed.

If you register with a GP surgery where you live they'll refer you to secondary care in that area.. you shouldn't really be accessing services on the basis you live somewhere you now don't as those services are only commissioned/funded for the people who live in that area.. This will be why you've been refused access for iron infusion and probably explains why the Gynae secretary isn't too happy. The NHS may not be perfect but try working with the system and you will get a better outcome.

Hi!

Going to avoid the NHS bun fight, I’ve had brilliant and less so care; however I couldn’t privately afford all the care of had.

I wanted to offer some reassurance on the hysteroscopy without a general. I had one 2 years ago, just had gas and air; I was very nervous as I’ve struggled with similar procedures including breaking a speculum 🤦‍♀️. However the procedure was fine, gas and air was good and the staff were utterly lovely.

Sorry you’re having a rough time and I hope it gets better.

Haha very good.

(Not everyone will like the joke about taxation, though, so you might have to be prepared for flak.)

The mirena coil and tablets work and stop bleeding. It's choice to refuse both. I was changing pad 1/2 hourly 24 hours a day. No sleep as I was constantly up and down, I got the coil and pills and it stopped within a day.

Honestly this sounds like a lot of ‘what if’ worrying. The NHS have given the job to the private sector which you are already writing-off as a disaster before you’ve even got there?

I would prefer any of the European models.