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To wish I could stop paying into the utterly broken NHS black hole

357 replies

Juanhundred · 29/08/2024 14:38

The last few years have really opened my eyes to the utter chaos of the National Health Screwers

If you've not needed them or only needed them for minor things, you honestly have no idea how bloody scary it is to be seriously ill and under the "care" of people I wouldnt usually trust to look after a dog

Every month I pay out about a weeks worth of wages in tax towards the NHS, then I pay a bit off my staggering credit card debt thats accumulated on going private when the NHS fail at life (rheumatology, gynaecology, dermatology, podiatry, basic antibiotics when my GP insisted an infected tick bite was "just allergies", the list is endless!)

I'm not rich, I earn less than 30k. Some days towards the end of the month I literally cant afford to eat what or when I want

20 years ago (when the NHS was actually the envy of the world) I had cervical cancer. Caught early by a smear test and treated in time to save my life. I was told by the consultant, "Another 6 months and your chances wouldn't have been good. Be very mindful of any changes moving forwards, and act on them immediately"
It was around the same time that Jade Goody died; she was told if she'd been seen 6 months earlier, her chances would have been infinitely better.
That brush with the Big C scared me shitless, and as per the advice given I'm super mindful of any changes and take them seriously.

Well I've probably just saved my own life this time by getting a private smear test, because despite my history and all the symptoms I am now experiencing (irregular heavy bleeding, random spotting, discharge, bleeding after intercourse, tummy and back pain), I was refused an NHS smear as I'm "not owed one" until three years after my last test, history / symptoms be damned.

The system was "reformed" in 2017. The NHS no longer do proper smear tests, just HPV tests. If you have HPV, you get a smear, if you dont, its off you go we'll see you in 3 years.

My private test showed major cell changes but HPV negative. My NHS GP surgery refused to acknowledge it or record the results on my medical record.
Luckily I'm already under an NHS gynaecologist (due to my symptoms), who initially agreed to refer me for colposcopy off the back of my private smear, but the referral was "triaged" and then rejected. My gynaecologist is just like 🤷🏻‍♀️ "You dont have HPV and around 50% cell changes rectify themselves without treatment. So yeah, bye."

50%? So 50% DONT rectify? And you think I'm betting my life on being in the lucky 50%, with my history and current symptoms? Is 50% really a good enough percentage to deny women with symptoms any further investigations? I dont think so, but apparently the NHS now does.

The NHS insists that as most (not all!) cervical cancers are caused by HPV, the women who fall into the grey area who have bad cells but no HPV are pretty rare, therefore our lives dont matter. Thats the message I'm getting.

Basically, I've just been abandoned by the NHS until I've got full-blown Big C, then maybe they might do something, if I'm lucky?

They can fuck off. I have two DDs who need their mum!

So here I am faffing around online trying to up my credit card limit so I can book myself in for a private colposcopy, and thinking to myself "If I didnt have to pay all this fucking money towards the NHS every month, I'd be able to afford this without credit!"

Sorry for the rambling ranty post I'm just stressed scared skint and at the end of my fucking tether

OP posts:
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Shesshinysheila · 30/08/2024 10:46

piccolorhinoceros · 30/08/2024 10:28

@taxguru And given that the consultant had been in appointments all day, when was he supposed to prepare for your OH's appointment and check he had all the results? Because a day or two before, chances are the team were seeing patients all day too. Look, I'm not defending this, but I take you back to my first post on this thread. It's not necessarily the staff, it's the system. They want more and more from the staff with less and less resource.

Sorry but it's often the staff as well.
On the post natal ward after I'd given birth to my twins. Only us and one other lady in the ward so not exactly over-run.
Id had an epidural so could not yet use my legs. Both my babies cots were put out of reach. When they cried I had to ring the bell because I couldn't reach them. Nobody came. There were 2 nurses having a proper shouting argument with each other - like literally shouting to the point it was scary - whilst blatantly ignoring me and the fact I needed help. Eventually a lovely HCA came in and passed them to me so I could feed them.
I actually got told off for keeping ringing the bell by the night staff but what could I do if I couldn't reach their cots?

Jumpingthruhoops · 30/08/2024 10:46

quilte · 30/08/2024 07:11

@Jumpingthruhoops not sure what pie chart you are on about, but here are the actual figures.

FYI The pie chart that breaks down how your tax is spent is printed on the back of your annual P60 form. Welfare makes up the biggest portion.

However, I think you've tagged the wrong person - I've already said upthread that I know that NHS contributions are part of a 25% share that tax payers pay every month.

So what if it's actually only 18% of that figure? That's so beside the point! The point is it's still 18% for a substandard service!

Auburngal · 30/08/2024 10:50

About 6 years ago, saw the consultant for my vision condition. Was seen very late. 4pm for a 1:30pm. Was told by consultant that I need my eyes scanned at the other eye department the Leicester Royal Infirmary has. They are in different buildings but joined. The ENT department is between the two departments.

The room with the various eye scanners closes at 4pm on that particular day of the week!

My DF and myself were pretty annoyed by this. We complained.

Since that appointment- there is a form on top of my records to go to get eyes scanned as soon as i check in.

Plus now both eye departments have a room full of various eye scanners. Must have cost NHS a pretty penny for those scanners

Jumpingthruhoops · 30/08/2024 10:54

quilte · 30/08/2024 07:47

Of course not, but OP is using vastly exaggerated figures (she pays 4.6% of her salary into national insurance, not 25%).

But so what!?
Not sure what your point us. She's still paying more than most so is absolutely entitled to a certain level of service. Or indeed to have a moan about it! And judging by her (lack of) treatment, her complaints are justified.

You disagree. That's fine. But do stop splitting hairs about how much she pays.

She pays. The End.

piccolorhinoceros · 30/08/2024 10:54

Shesshinysheila · 30/08/2024 10:46

Sorry but it's often the staff as well.
On the post natal ward after I'd given birth to my twins. Only us and one other lady in the ward so not exactly over-run.
Id had an epidural so could not yet use my legs. Both my babies cots were put out of reach. When they cried I had to ring the bell because I couldn't reach them. Nobody came. There were 2 nurses having a proper shouting argument with each other - like literally shouting to the point it was scary - whilst blatantly ignoring me and the fact I needed help. Eventually a lovely HCA came in and passed them to me so I could feed them.
I actually got told off for keeping ringing the bell by the night staff but what could I do if I couldn't reach their cots?

Anecdotes. I also said 'not necessarily the staff', not 'never the staff'. Maternity care is shocking, it's one of the main reasons I'm childfree.

Stompythedinosaur · 30/08/2024 10:55

Compared to other EU countries we pay less into our healthcare system, so obviously there will be limits to the service.

I think anyone who wants to move to a system where poor people are just left to die is crazy, but I guess you can campaign for it if that's your preference.

But the nature of tax is that we all pay for services whether we need them or not e.g. police, social work, coast guards.

I don't recognise the narrative that NHS workers aren't caring or deliberately do a bad job. But there are of course limits to what is offered, because it's a hugely underfunded area.

tamade · 30/08/2024 10:59

piccolorhinoceros · 30/08/2024 07:49

@tamade I am not any kind of medic

Evidently

But I am a human being, evidently

Mindfulofmuddle · 30/08/2024 10:59

@Hatfullofwillow
What are you on about? If you want to make your own point, do so, but don't drag my post into it as what I said has nothing to do with whatever you're trying to say.

You cannot compare apples and pears. Other healthcare systems work differently and are affective or ineffective for different reasons. No one else has exactly the same system as the UK, so you cannot compare like for like in terms of financing it.

The point I made is I have been fortunate enough to experience how a differently run system works in practice, which most people in the UK probably haven't. It lead me to question why the NHS is held up as the pinnacle of healthcare, when as you have kindly provided statistics to demonstrate - it simply isn't.

In 30 years the UK population has grown from 57m to over 69m.
The largest population growth in at least 70 years in the UK happened in 2023.

The numbers didn't add up long before 'austerity' began (2010). Even if the money had been going up, it could never possibly have kept up with the growth in NHS users in such a small period of time. There is only so much tax you can squeeze out of a fairly fixed number of taxpayers to cover a large, sudden rise in population.

If people were not bullied into believing that questioning the virtues of the reality of the NHS is tantamount to treason, then they may be inclined to consider a different approach. One which may potentially deliver a huge improvement in prevention of illness and disease in the first place, and improves the health of the nation as a whole.

Shesshinysheila · 30/08/2024 11:06

"I don't recognise the narrative that NHS workers aren't caring or deliberately do a bad job"
Uh huh. Well that's your choice, but there have been plenty of examples on this thread where NHS staff have NOT been caring. But maybe they're all lying?

Crankyracoon · 30/08/2024 11:18

I feel you, the NHS is woefully unfit for purpose and honestly anyone who thinks it isn't is just lucky enough to not be significantly embroiled in it. It terrifies me.

Not paying into it isn't the answer though sadly, not everything is available to us privately even if we could afford it/are insured for it and honestly, the professionals that are available to us privately are simply the people working for the NHS and when they're bad, they're bad, regardless of whether or not you're paying them directly. Additionally, the politics of the NHS means many private doctors just won't venture outside the scope of the NHS anyway.

To the nurse who replied pointing out that you care and suggesting people complain - we know many care but the system itself is broken and not everyone is well enough, has the capacity, or indeed the luxury of time to complain even if it made a difference, which is generally doesn't.

taxguru · 30/08/2024 11:19

Shesshinysheila · 30/08/2024 11:06

"I don't recognise the narrative that NHS workers aren't caring or deliberately do a bad job"
Uh huh. Well that's your choice, but there have been plenty of examples on this thread where NHS staff have NOT been caring. But maybe they're all lying?

People need to read consultant Peter Duffy's book "Whistle in the Wind" about a whistle blower who was hounded out of his job, whilst the colleagues he reported for negligence/incompetence continue to be allowed to work, and how he was badly let down by management who wanted to cover it up and ultimately it was management who got rid of the whistle blower himself. A dedicated consultant hounded out of the NHS and a great loss to the NHS!

It explains why doctors and nurses tend not to report their negligent, neglectful, incompetent colleagues and instead just keep quiet.

The NHS spends billions on compensation claims for negligence etc. That money would be better spent on improving treatments for patients. How about the NHS starts to explore ways of reducing negligence rather than just constantly holding out their hands for more taxpayer funding!

Stompythedinosaur · 30/08/2024 11:21

Shesshinysheila · 30/08/2024 11:06

"I don't recognise the narrative that NHS workers aren't caring or deliberately do a bad job"
Uh huh. Well that's your choice, but there have been plenty of examples on this thread where NHS staff have NOT been caring. But maybe they're all lying?

The fact there are some examples of bad practice doesn't mean every team or worker is bad. Or do you think people who've had good experiences are lying?

You're buying into a straw man argument.

Noras · 30/08/2024 11:24

piccolorhinoceros · 30/08/2024 09:56

@Noras People in the NHS have to remember that some families are actually funding their pay believe it or not although many are not net contributors some are. I demand to be treated as a client and not a charity case thanks. I dislike the God like attitude of some consultants and GPs even GP receptionists.

If you speak to people the way you post, I can understand why people might be less than helpful. Sounds like you have a bit of a god complex yourself.

No I’m just shocked by the lack of respect shown to all people by some people in the NHS. Incidentally it’s not just to patients but also to junior doctors and support staff by more senior people. I find it quite disgraceful
.

Shesshinysheila · 30/08/2024 11:24

Don't be ridiculous @Stompythedinosaur. Literally nobody, myself included, has suggested that every team worker is bad. Just that those who refuse to believe many BUT NOT ALL are the ones who are deluded.

Shesshinysheila · 30/08/2024 11:30

I also really resent the view that we should be grateful for whatever shit - or in fact non existent - service we receive simply because we aren't paying for it directly, there and then.
Are you grateful every time your dustbins are emptied? How about when the lollypop person stops cars outside your kids school?
Sure i'd say thanks to these people, same as I'd say thanks to someone that served me a coffee in Costa. But why the hero worship when people are simply doing the job they're being paid for? It isn't free. You're just paying for it from your taxes rather than at the time, and they're being paid. They're not volunteers.
(I do absolutely agree they shouldn't have to put up with the abuse they get from some members of society btw. Nobody should have to)

Noras · 30/08/2024 11:33

letmego24 · 30/08/2024 09:16

No it's not rude. If you see a patient in clinic and they are acutely unwell you have to manage that patient and admit them if needed while also running clinic, for example. Or if too many patients are booked in without enough staff in the clinic, time will run over inevitably. If a clinic finishes at six pm when the doctor finishes work at five pm do you think they get any pay for that? No, because they couldn't leave a sick patient unwell and they can't send you home as they have run out of time. Therefore they bring you in or the nurse brings you in but they obviously have to focus on the notes especially with a complex patient.
It's not like with a lawyer when you get paid per minute or per letter, the clinician cannot leave people unwell, dying or unseen so there is a lot of unpaid overtime and missed breaks and lunch.
Try to have some respect.

Are you actually kidding me or just have no idea who law works? Do you think the lawyers doing the 2am shift in the police cell get ‘paid by the hour’ or just get a wage.

So I’m on a case.
My contracted hours are 9am to 5.30pm. I have ot be in Manchester to meet the client at court at 8am and I lived in Birmingham. In my own time ( no paid overtime) I travelled to Manchester overnight and then get up early to meet the client at court. The case finished 2 days later at 4.00. I have not been home for those days. I get into Birmingham at 6.00 and then go into the office for a few hours to catch up on work and finished at 9pm. This included preparing papers and reading stuff for a meeting with clients the next day so that I don’t make them wait whilst I read the file. There is no over time.

If the job demands that you are in say Milton Keynes until 6pm so you are and get home on a Friday at 8.30 pm etc

Do you think lawyer take lunches or breaks - many eat at their desk.

This is the big issue - the martyrdom of the NHS only they work long hours.

Tell that to criminal lawyers on £45,000 per annum with modest pensions when they have done an l day and are on the rota for the police cells at night.

Zimunya · 30/08/2024 11:38

Mindfulofmuddle · 29/08/2024 14:47

YANBU. You will get a host of shouty NHS diehards on here telling you that you should be grateful for what you get, and how very dare you have any other option, but the truth is we are paying more and more for a rapidly deteriorating service because the system is irretrievably broken. Having experienced an excellent and affordable healthcare system that is insurance-based in another country, I had my eyes opened to how much better and proactive healthcare could be, and how much we have been brainwashed into lauding the NHS regardless of our poor experiences. There are undoubtedly some excellent people in the NHS, but the service has not kept pace with rapidly changing needs of the UK population over the past 30 years or so.

Exactly this. So many British people are outraged if you say one word against the NHS, but it really isn't fit for purpose, especially when it comes to women's health. That's not just my opinion - several independent investigations and reports have acknowledged this.

Take care of yourself, OP - I hope you remain fit and well for many, many more years to come.

HRTQueen · 30/08/2024 11:45

piccolorhinoceros · 29/08/2024 14:52

This x 100.

The NHS is broken, and I say that as staff. I don't appreciate your dig at lack of care. Most of us are trying to do the best we can with a lack of resource and shitty systems (your gynaecologist, for one).

piccolorhinoceros

I agree and feel exactly the same.

We can move to similar models like other European countries have we deserve better. It will cost more for us all but we should not accept such a poor healthcare service just because its free at the point of delivery and that once (many years ago) the NHS provided great all round healthcare it just simply does not anymore

Zimunya · 30/08/2024 11:50

drspouse · 29/08/2024 16:41

The private healthcare we have in the UK could NEVER replace what we all need that we get from the NHS. Even the private healthcare that's available in the US couldn't (because it doesn't, because overall health is much worse there, and even those with money end up over-treated because it pays to treat - think of children with autism who get ABA which can be abusive, the trans scandals, making people lifelong patients and doing damaging surgeries, etc. etc.)

We as a family could never, ever afford the healthcare we've had under the NHS if we had to go private. Most of what we get wouldn't be covered, anyway - my DS has had a hospital admission for his epilepsy and we get immediate access to the epilepsy nurse when we call, she emails the consultant and he got back to us immediately even though he was on holiday! We don't even have a private children's hospital closer than an hour and a half from us. And that's without the exclusions for pre-existing conditions - my DD might be just about insurable but she's 10, and it's hardly worth it, the rest of us would be refused care for everything that ails us.

Private healthcare is also not joined up. We forgot a new medication that the hospital had prescribed for DS, which DH had put down in a different spot to the others. We rang 111, who rang the prescribing team, who rang a pharmacy in our destination in another English region, and we picked up the meds in 4 hours. If you sign up for one healthcare company, you aren't going to get the permission to see another company in the same way that it's impossible to get "out of network" care in the US unless you either beg and plead and get lucky, or pay through the nose.

As others have said, the USA does not offer the only private healthcare model. I am no fan of the USA's health care system, but I have lived in opther countries where private healthcare works exceedingly well alongside state options. France, Denmark and the UAE all have private healthcare systems that work alongside and are integrated into the state options.

taxguru · 30/08/2024 11:59

@Zimunya

Take care of yourself, OP - I hope you remain fit and well for many, many more years to come.

Whilst I agree, I'd also add that keeping fit and well just reduces your risk of serious illness or disease - you can't eliminate it.

I'd always advise people to take control of their illnesses and be proactive. Learn not to accept what doctors and nurses tell you, do your own research, ask questions, challenge when you feel necessary, etc.

My OH is still alive six years after his oncologist gave him 18 months to live. Throughout that time, he's proactively taken control of his terminal disease. He has done extensive research, he insists on being given a paper copy of every blood test and plots all the different readings on graphs. He picks up on any trends and proactively gets his medication changed when there's an adverse upward or downtrend reading trend, even if still in "within normal" ranges. When he was first on chemotherapy, it nearly killed him - he researched it and discovered he'd been started on the highest dose - he asked the oncologist to reduce the dose to the minimum - a quarter of the strength - it worked just as well but with much reduced side effects! As part of his long term treatment, he has a monthly infusion - it wipes him out - for the first couple of years he got it reduced, again to about a third of the starting dose - it still worked. Now he has it every two months instead of monthly, same lowest dose, still works.

Every review, his oncologist asks "how many infections have you had", and he always answers "none" - the oncologist continues to be gobsmacked as the chemotherapy impairs the immune system. At first he was told he'd have regular repeated infections and even told to go straight to A&E with any kind of infection as they can kill a ECV patient. Oncologist can't believe he's not had any infections. The only one he's had was covid but luckily after he'd had several doses of the vaccination so was pretty unscathed by it. OH thinks it's because he's keeping himself fit and healthy and ensuring all his blood test results are as good as possible. When his iron levels were falling consistently, he asked the oncologist for iron supplements, but was told they "tend to wait" until iron levels are well below and then do infusions instead! What?? Why not just give supplements to stop it getting that bad. Like I say, he's proactive and assertive, and got strong iron supplements prescribed, so his iron levels are back to normal!!

piccolorhinoceros · 30/08/2024 12:13

@taxguru PP said she hopes OP remains fit and well, i.e. healthy and gets no serious illness...

When his iron levels were falling consistently, he asked the oncologist for iron supplements, but was told they "tend to wait" until iron levels are well below and then do infusions instead! What?? Why not just give supplements to stop it getting that bad.

Probably because tablets can cause pretty awful gastro effects, as can chemo, which could be quite unpleasant/lead to reduced compliance. Your OH sounds like he has been lucky. Guidelines are just that, a guide, but they are evidence-based and the oncologist will have prescribed what he believed was the dose most likely to control disease with manageable side effects. Your OH asking to reduce the dose could have meant the disease would not be controlled, in which case you'd likely be on here complaining that the oncologist didn't advise you properly. Again, lucky. Nothing more. Being proactive and taking control means nothing if your disease is unable to be controlled.

Auburngal · 30/08/2024 12:25

Boris promised the money we would have paid to the EU would go to the NHS.

I knew this was going to be BS but millions of idiots who think the Daily Mail is their Bible believed in Boris.

taxguru · 30/08/2024 12:37

@piccolorhinoceros

Your OH asking to reduce the dose could have meant the disease would not be controlled, in which case you'd likely be on here complaining that the oncologist didn't advise you properly.

If the disease markers in the blood hadn't come down in the month of reduced dose, easy enough to increase them again. In fact the rate of reduction of markers in the second month which much reduced dose was the same as rate of reduction in the first month on higher dose which nearly killed him. It was a six month course of chemotherapy, so four months to "catch" up if the lower dose hadn't worked so well. In the event, the course was stopped after four months as the markers had reduced to almost zero and the oncologist agreed there was no point in continuing the chemo with markers so low. It was, however, OH who had to suggest not bothering with rounds 5 and 6 - oncologist wasn't suggesting it. Nor did he object or make any objection at all for either the early termination of the treatment, nor the reduction in dose for month 2 onwards. In fact, he agreed it was a good idea given the blood test results! Strange he didn't suggest it himself. If he'd have come up with a strong objection or reason for not reducing the dose, OH would have probably accepting the oncologist's recommendation. However, oncologist was quite happy to go along with it and try it out.

Same now with his 2 monthly infusion which should have been monthly at much higher dose. It's working at lower dose and lower frequency. When it stops working so well, OH will revert back to higher dose and/or monthly instead of 2 monthly.

This is long term treatment/management of an ultimately terminal cancer. Nothing is going to happen quickly now that it is fully controlled. Time isn't of the essence, so even a few weeks or a month without his drugs at all probably won't make much difference. It's all about keeping everything steady and consistent. An informed patient with access to his blood tests is probably better placed to pick up when things are heading in the wrong direction, especially when he knows his own body, knows how he feels, etc. He knows when he starts feeling "off it" and usually it's one of the blood test results that's going up or down giving a good indication of why!

As for strong iron tablet. Again, he researched them, and knows the side effects. He knows what they can cause, so watches out for the potential side effects. Sometimes, he'll reduce them himself, i.e. every other day instead of every day, or if particularly bad side effects, will come off for several days or a couple of weeks. Then the next month, he checks his graph to see what effect that had on his iron levels! It all helps him to keep himself as fit, healthy and happy as possible whilst on a cocktail of drugs for the rest of his life!

Far better than letting things get serious and then more drastic action having to be taken to bring things back under control (if possible).

It's not being "lucky", it's being in control of his own body, and insisting on being given the information (i.e. test results) to do it himself. He'd undoubtedly not be her today if he'd not taken control. After all, as I say, the oncologist gave him 18 months to live, and he's now six years in and still strong and healthy with a good set of blood test results, despite choosing which of his drug package to take and how often. Some of the drugs, he's never taken at all because he's never needed them. How many people would just take everything on the doctor's say so, whether necessary or not??

Nat6999 · 30/08/2024 13:17

Auburngal · 30/08/2024 08:13

Sometimes NHS send patients to private hospitals. How much does that cost them? Probably more than a person paying for the surgery etc themselves. I had my gallbladder removed at Nuffield. Only reason I went to Nuffield was when my GP did a choose and book for seeing a consultant, there were no appointments at the two NHS hospitals and another at a smaller hospital which I couldn't do as had a one off event to attend in London. Had the surgery and recovered about 2 weeks before the event in London!

I've had 5 operations via choose & book in a private hospital, if the NHS worked as efficiently as the private hospitals do they could free up so many beds & get more done. Things like medication to take home written up before surgery & discharge letters done at the same time. I've never had to stay longer than 2 hours after surgery on all my day case operations, you can bet it would be at least double or more than that in an NHS hospital. The NHS will buy up theatre slots in bulk so will probably not cost much more & when you factor in not having to have repeated appointments with a consultant it will probably work out cheaper.

letmego24 · 30/08/2024 13:56

For HCPs privatisation would make no difference - same job. For patients , they'd be paying. Only difference believe me. There's no acute private healthcare system to step in and save lives, only certain procedures can be done privately and if the patient gets sick it's ambulance time over to NHS bed.