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How did the NHS get this messed up and is there any way back?

36 replies

nocluewhattodo1 · 01/07/2025 12:31

I am sitting here literally clueless about what to do right now but I have done nothing but chase and push and advocate to get help and I am at the point where I feel my only option is to take a loan to get private help because I have no chance of getting help on the NHS any time soon.

I have had an ovarian dermoid cyst since 2021, it was 3cm, which I then had an MRI in June 2024 and it was 4cm and an ultrasound scan in March 2025 and its 7cm. I am getting significant abdominal pain which is why these tests have been done, the only thing I have been given so far is the advice that I can take paracetamol every 4 hours (I cannot take NSAIDs) and that I have to wait. Ive had gastro investigations which I am still waiting for colonoscopy biopsy results but nothing alarming was seen. I have other things such as repeated leukocytes in my urine for 6 months but that isnt investigated further as there is no sign of infection. So I am in significant pain, my health in general is poor, im in peri menopause but I cannot take HRT until gynae signs off that this wont worsen my cyst so im stuck struggling.

I had a private menopause specialist speak with her team including gynae consulants who felt I needed to be seen on a 2ww due to the growth between June and March and wrote to my GP, who wrote to expedite my case with gynae.

I have wrote to gynaecology who have today confirmed that I have ONLY been on the list 15 weeks and the urgent list is currently a 49-50 week wait. Now this is just to see gynae, if they then decide I need surgery, thats a further wait that I can only imagine is at least the same again. Until I see gynae I cant get any help with HRT, my mental health is horrendous, ive been tried on 4 SSRIs but it seems im someone who is really sensitive to them so I cannot take them.

I just dont know what we are supposed to do when an urgent list is a year long, how many people on that list will get a year down the line only to find out they needed much faster treatment. For comparison when my cyst was first found in 2021 I was put on the urgent list and seen in 3 weeks. How in 4 years did we go from a 3 week wait to a 50+ week wait for urgent cases. I hate to think what the routine waitlist is at.

I just feel like the NHS is falling apart and I know there will be people in worse situations than me but im sitting here after a year and a half of my life being on pause because im so unwell (ive probably left my house less than 10 times in that time frame and most of those have been medical appointments, because I am so unwell) and seeing that I have no hope of help for at least 2 years. I feel so completely lost right now and I just dont know how much longer I can keep fighting and asking for help in a very broken system.

OP posts:
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summertimeinLondon · 11/10/2025 18:27

Boomer55 · 11/10/2025 16:46

The entire NHS is an inefficient shitstorm. Before any more money is hurled at it, the whole thing needs reform.

But, it’ll never happen. 🙄

Actually, international comparisons tend to show the NHS is actually very efficient in global terms — it’s often ranked at or near the top of comparable economies’ healthcare systems for efficiency. However we pay much less of a share of our GDP for it compared to most Western and advanced economies, who largely spend more than we do in terms of percentage of GDP, so one of the reasons it’s efficient is that it does a lot with a comparably underfunded system.

The reality is that it’s been both underfunded and partially privatised in an incompetent way by the last succession of Tory governments. It’s been badly impacted by Tory government policy, Brexit, Covid, and bad immigration and education policy under the Tories. But the answer isn’t to go American-style healthcare: their system inevitably comes way out in top of international GDP spend and inefficiency metrics.

Tiredofwhataboutery · 11/10/2025 17:48

I think it’s an aging population thing lots of people needing lots of care.

RandomTyping · 11/10/2025 17:46

And then politicians have the temerity to wang on about too many people being on long term sick leave! Is it any bloody wonder?!

Solaire18381 · 11/10/2025 17:38

I'm so sorry. The NHS is a shambles. We (touch wood) don't need the NHS often and the GP is usually fantastic. However, DC is on a waiting list at our local Trust and on checking when the appointment will be, it's over one and a half year's long. Ironically the letter said if you don't hear from us with an appointment within 6 weeks, contact us! Maybe they need to rephrase the letters.

Not just for Routine but for Urgent cases as well. They are the words the appointments clerk used. But I can't quite believe that, surely if it's a real urgent case it still wouldn't be a year and a half wait. For a child, or anyone really.

I don't know what the answer is. In the news I see waiting lists are coming down. Not in our experience they're not. There were so many promises made but I can't see any improvement, yet.

Everythingthatmatters · 11/10/2025 17:31

NorthernDancer · 09/07/2025 13:46

I was referred for an urgent cardiology appointment last December. I should get to see 'a member of the team" in September, unless it is postponed for a third time.

More worryingly, DH has cancer. We've had a letter which pointed us to stage 4 with bone mets and he's had a conversation with a nurse who says stage 3 with local lymph node involvement, but it will be at least 4 further weeks and more like 6 or 8 weeks before he actually sees someone who can give him a proper diagnosis and a treatment plan.

We are currently 8 weeks into the 28 day faster diagnosis protocol that is plastered all over the hospital website and there is of course the risk that while we are waiting his locally advanced cancer may metastasise.

Can I just say you must follow this up and keep pushing. I have experienced the same issues with a cancer diagnosis and only managed to make things happen quicker by continually calling. Anyone you can call and put pressure on do as it could make a difference. Even with my pushing I’ve only had the treatment just in time and with delays it could be entirely different

PensionMention · 11/10/2025 17:12

We live too long and when we are too unwell.

The NHS in its current form is not sustainable but it’s a sacred cow and everyone is an angel that works in it so it remains a shit show. Whilst only management is lambasted as the reason it’s a mess by most it’s not the only reason.

TheNinny · 11/10/2025 16:58

same. Only being dealt with quickly as I was admitted acutely on suspicion of something else and now ruling out cancer. Ask your GP to check tumour markers like CA125,CEA, AFP etc.

Im actually more worried that if the outcome isn’t cancer, i’m gonna be left for years on a procedure waiting list and suffering in the mean time. And I can’t believe i even wrote that! I don’t want cancer but equally that’s the only thing that makes them move quickly for gyn.

Boomer55 · 11/10/2025 16:46

The entire NHS is an inefficient shitstorm. Before any more money is hurled at it, the whole thing needs reform.

But, it’ll never happen. 🙄

FairKoala · 11/10/2025 16:28

I know this sounds a bit out there but would phoning around NHS trusts to find the shortest waiting time then renting a tiny place or getting an address in that area, registering at the doctors and getting on the much shorter list be the cheapest option. Bit more complicated but a shorter and cheaper time frame.
How much would the cost of the operation be and does the private consultant have a payment plan/loan you can sign up to (bit like dentists for certain procedures)

nocluewhattodo1 · 09/07/2025 19:16

Littlemisscapable · 09/07/2025 18:24

My.DD is on a 12 year waiting list for dermatology. 144 months. In NI

That is ridiculous, ive heard some shocking waitlists but thats awful, I just looked up and saw that NI have the worst waitlists and dermatology is apparently one of the worst. How awful for your Daughter. This really is an issue that people need to know about, how can they think a 12 year waitlist is at all ok.

OP posts:
Littlemisscapable · 09/07/2025 18:24

My.DD is on a 12 year waiting list for dermatology. 144 months. In NI

nocluewhattodo1 · 09/07/2025 17:41

NorthernDancer · 09/07/2025 13:46

I was referred for an urgent cardiology appointment last December. I should get to see 'a member of the team" in September, unless it is postponed for a third time.

More worryingly, DH has cancer. We've had a letter which pointed us to stage 4 with bone mets and he's had a conversation with a nurse who says stage 3 with local lymph node involvement, but it will be at least 4 further weeks and more like 6 or 8 weeks before he actually sees someone who can give him a proper diagnosis and a treatment plan.

We are currently 8 weeks into the 28 day faster diagnosis protocol that is plastered all over the hospital website and there is of course the risk that while we are waiting his locally advanced cancer may metastasise.

Thats beyond horrendous. I actually wrote to everyone last night, my GP, PALS and my local MP. My MP had previously not come back to me about something else but they have responded in under a day and said they are going to take this up with the hospital CEO, so I would highly recommend reaching out to anyone and everyone. Ive struggled for so long and finally decided I needed help and wish I had done it sooner.

You shouldn't have to but try reaching out to people to push for help because it sounds like this is the only way to get help.

I hope both you and your DH get the help you need soon.

OP posts:
NorthernDancer · 09/07/2025 13:46

I was referred for an urgent cardiology appointment last December. I should get to see 'a member of the team" in September, unless it is postponed for a third time.

More worryingly, DH has cancer. We've had a letter which pointed us to stage 4 with bone mets and he's had a conversation with a nurse who says stage 3 with local lymph node involvement, but it will be at least 4 further weeks and more like 6 or 8 weeks before he actually sees someone who can give him a proper diagnosis and a treatment plan.

We are currently 8 weeks into the 28 day faster diagnosis protocol that is plastered all over the hospital website and there is of course the risk that while we are waiting his locally advanced cancer may metastasise.

theemmadilemma · 09/07/2025 13:11

YANBU.

The NHS is still good for free urgent care. If you end up down this type of path, needing what they class as a non urgent operation, it seems standard that you are left a long waiting list deteriorating in health until they can get to you.

So yes, given the information that you are on the urgent wait list, but that the urgent wait list is up to 50 weeks, you need to decide if you want to wait or pay.

My 83 year old mother has paid for cataract removal and heart surgery so far because otherwise she would have left getting blind and barely able to walk upstairs while waiting. Where as she is now back on 5 mile daily walks.

summertimeinLondon · 09/07/2025 13:09

nocluewhattodo1 · 01/07/2025 12:31

I am sitting here literally clueless about what to do right now but I have done nothing but chase and push and advocate to get help and I am at the point where I feel my only option is to take a loan to get private help because I have no chance of getting help on the NHS any time soon.

I have had an ovarian dermoid cyst since 2021, it was 3cm, which I then had an MRI in June 2024 and it was 4cm and an ultrasound scan in March 2025 and its 7cm. I am getting significant abdominal pain which is why these tests have been done, the only thing I have been given so far is the advice that I can take paracetamol every 4 hours (I cannot take NSAIDs) and that I have to wait. Ive had gastro investigations which I am still waiting for colonoscopy biopsy results but nothing alarming was seen. I have other things such as repeated leukocytes in my urine for 6 months but that isnt investigated further as there is no sign of infection. So I am in significant pain, my health in general is poor, im in peri menopause but I cannot take HRT until gynae signs off that this wont worsen my cyst so im stuck struggling.

I had a private menopause specialist speak with her team including gynae consulants who felt I needed to be seen on a 2ww due to the growth between June and March and wrote to my GP, who wrote to expedite my case with gynae.

I have wrote to gynaecology who have today confirmed that I have ONLY been on the list 15 weeks and the urgent list is currently a 49-50 week wait. Now this is just to see gynae, if they then decide I need surgery, thats a further wait that I can only imagine is at least the same again. Until I see gynae I cant get any help with HRT, my mental health is horrendous, ive been tried on 4 SSRIs but it seems im someone who is really sensitive to them so I cannot take them.

I just dont know what we are supposed to do when an urgent list is a year long, how many people on that list will get a year down the line only to find out they needed much faster treatment. For comparison when my cyst was first found in 2021 I was put on the urgent list and seen in 3 weeks. How in 4 years did we go from a 3 week wait to a 50+ week wait for urgent cases. I hate to think what the routine waitlist is at.

I just feel like the NHS is falling apart and I know there will be people in worse situations than me but im sitting here after a year and a half of my life being on pause because im so unwell (ive probably left my house less than 10 times in that time frame and most of those have been medical appointments, because I am so unwell) and seeing that I have no hope of help for at least 2 years. I feel so completely lost right now and I just dont know how much longer I can keep fighting and asking for help in a very broken system.

How did it get this messed up? Answer: a Tory government from 2020-2014!

Blame those who voted for the Tories and for Brexit this whole past fifteen years. The damage to the health service has been incalculable.

MissyB1 · 09/07/2025 13:07

Well it has been systematically dismantled over the last 15 years or so. The Tories don't really like the public sector so they essentially made it harder and harder to access NHS health care in the hope that as many people as possible would go private, which is essentially where we are today. Im not sure it can ever recover to where we were before Austerity was imposed. There will eventually have to be a new system (whatever that may look like). Meanwhile people suffer.
My dh has a brain tumour which can't be removed, so he has yearly scans to monitor the growth, every year he has to fight tooth and nail for that scan. He still hasn't had this year's, it was due in February.

Fibrous · 09/07/2025 12:47

yeah it’s a nightmare. I’ve had colorectal issues since December. No sign of my hospital appointment at all - called and it’s a year wait to be seen. Meanwhile I’m having repeats flare ups and many days where I can’t stand up - all I can do is sit in the bath. I paid for a sigmoidoscopy privately (£3k) and now have a diagnosis and a treatment path. Conservative to begin with then surgery if that doesn’t work. I’m still barely able to leave the house but at least there’s a plan now. I have no idea how much the surgery would cost but they have finance available.

NHS staff are all doing their best but the system is broken.

i lived in France for a few years and received such amazing healthcare there, I know it doesn’t have to be this way. I would happily contribute towards costs of treatment like they do there, or have my employers contribute. Having years between onset of symptoms to diagnosis and treatment is just a more expensive and worse outcome for everyone.

nocluewhattodo1 · 09/07/2025 12:36

fireplaceember · 08/07/2025 16:51

one consultant in the specialist endo centre and she was dealing with emergencies too!
weirdly the pain vanished 8 weeks before my op but she said it needed doing as it was going to come back
everyone on the list with me got cancelled as she spent the full day operating on me

For you im so glad it was done but you never should have been left as long as you did and its frustrating that so many women are being left in these situations.

Ive suffered since 2021 with this pain and my whole health going downhill since the start of 2024 and I reached my limit last night and fired off a bunch of emails so im just hoping 1 helps somehow. We shouldn't have to fight this hard when struggling this much.

OP posts:
nocluewhattodo1 · 09/07/2025 12:35

Octaviathethird · 08/07/2025 16:21

I was given the results during a follow up consultation. Surely looking for endo wouldn't add to the cost, as they are already looking in that area anyway? My surgery was at The Portland Hospital, so it would likely be cheaper elsewhere.

From the quote I got so far it adds £2-£3k, I thought the same that as they are there anyway it wouldn't add anything but apparently it does. I might look at some options though as im in so much pain, but I just had enough last night and wrote in to my GP, PALS and even my MP because I just need some help or advice or guidance because I just cant keep going like this.

OP posts:
fireplaceember · 08/07/2025 16:51

nocluewhattodo1 · 08/07/2025 16:10

Just looking at your dates again and even with that level of pain the surgery was another 4 month wait? Thats awful. Im so glad you got the help but its awful you were left so long in so much pain.

one consultant in the specialist endo centre and she was dealing with emergencies too!
weirdly the pain vanished 8 weeks before my op but she said it needed doing as it was going to come back
everyone on the list with me got cancelled as she spent the full day operating on me

Octaviathethird · 08/07/2025 16:21

nocluewhattodo1 · 08/07/2025 16:09

I am considering this, although because of the level of pain I have, its been suggested that they should be checking for endometriosis too which is going to add to the cost. But at this point my Husband is saying we cant leave you in pain, so let's just figure the money. But I hate the idea of essentially putting us in debt to deal with this. I suppose I should feel lucky that I even have that option as I know others might not even be able to consider that and just have to suffer.

With your private surgery did they still send the biopsy results to you?

I was given the results during a follow up consultation. Surely looking for endo wouldn't add to the cost, as they are already looking in that area anyway? My surgery was at The Portland Hospital, so it would likely be cheaper elsewhere.

nocluewhattodo1 · 08/07/2025 16:10

fireplaceember · 08/07/2025 00:00

Gynae is a shit show
looking at my dates - and this was pushed forward as I was in so much pain and having to keep going to a&e and on morphine

july 2023 ultrasound showing endo
October 2023 private hospital says they can’t do anything, refers me back to NHS
july 2024 MRI
dec 2024 MDT meeting
Jan 2025 consultant appointment and surgery consent
May 2025 surgery takes 8.5hrs as it’s so severe and grown massively since the MRI

Just looking at your dates again and even with that level of pain the surgery was another 4 month wait? Thats awful. Im so glad you got the help but its awful you were left so long in so much pain.

OP posts:
nocluewhattodo1 · 08/07/2025 16:09

Octaviathethird · 08/07/2025 00:06

I had a dermoid removed privately, it cost 7k plus the initial consultation fee of £300 and the same again for the follow up. I had no choice as it needed to be removed before commencing IVF for a second baby. NHS were aware of the dermoid but no referrals had been made, they just made a note of it when I had an ultrasound during my first pregnancy.

I am considering this, although because of the level of pain I have, its been suggested that they should be checking for endometriosis too which is going to add to the cost. But at this point my Husband is saying we cant leave you in pain, so let's just figure the money. But I hate the idea of essentially putting us in debt to deal with this. I suppose I should feel lucky that I even have that option as I know others might not even be able to consider that and just have to suffer.

With your private surgery did they still send the biopsy results to you?

OP posts:
nocluewhattodo1 · 08/07/2025 16:06

fireplaceember · 08/07/2025 00:00

Gynae is a shit show
looking at my dates - and this was pushed forward as I was in so much pain and having to keep going to a&e and on morphine

july 2023 ultrasound showing endo
October 2023 private hospital says they can’t do anything, refers me back to NHS
july 2024 MRI
dec 2024 MDT meeting
Jan 2025 consultant appointment and surgery consent
May 2025 surgery takes 8.5hrs as it’s so severe and grown massively since the MRI

A couple people have asked if this could be endometriosis due to the pain because I had the pain when the cyst was 3cm and I was told that size shouldn't cause this level of pain. Do you know what ive been told to do...take paracetamol! I have days where I cannot stand up and walk properly because it hurts so much and my GP asked why im not taking a second dose of paracetamol as every 4 hours will help. I cannot take NSAIDs so they said just stick with paracetamol, its a joke.

Ive wrote today to my GP practice manager to ask for help as she was actually really helpful before. Ive asked also if a private appointment would help as I dont want to pay for it if they tell me I still need to wait for the NHS appointment.

Its so frustrating hearing that other people are having the same issues. The fact an urgent gynae list is pretty much a year just for an initial appointment, how many people are going to have serious things missed?

OP posts:
Octaviathethird · 08/07/2025 00:06

I had a dermoid removed privately, it cost 7k plus the initial consultation fee of £300 and the same again for the follow up. I had no choice as it needed to be removed before commencing IVF for a second baby. NHS were aware of the dermoid but no referrals had been made, they just made a note of it when I had an ultrasound during my first pregnancy.