NHS Refuses to Offer Surgery

[AchatAVendre]

Wondering what people's thoughts are on this. My NHS healthcare trust is point blank refusing to offer me surgery for a condition that is normally fixed by surgery that almost everyone agrees that all the clinical signs are present for. They want to "do nothing". The problem is causing issues and pain and there is no way forwards from this opinion. I have reached the end point with my healthcare trust.

I have asked to be referred through patient choices for a second opinion but the issue is now causing so much pain and physical damage that I'll probably end up paying for surgery privately because its taken so long to get to this stage. Around £6k. I can afford it, but obviously I'd rather not take 6k out of my savings for something that just about anyone else would get surgery for. I should also point out that I'm not a smoker and not overweight, and even my GP surgery can't understand it. But no-one is doing anything about it. My GP is quite frustrated but can't really do anything. I had a private consultation and the surgeon said that the surgery in my case has a 99% success rate and he can't understand why I wasn't offered it by the NHS. It affects my mobility and therefore my ability to work. Yes, I will complain to the Ombudsman but realistically it will be many months before they even look at my case, never mind do anything about it.

What on earth do you do in practical terms if your NHS healthcare trust simply refuses to operate? I do think its probably a bit sexist as it appears that statistically men are more likely to get this (non-sex related) surgery than women in my trust and some of the written responses I have had display quite a bias and stereotypical thinking about women and at a couple of points, delve into the realms of fiction in inventing reasons for the issue (it occurred due to a an accident, they wrongly claim its because I'm peri-menopausal and I should just accept fractures and complications arising from them).

I had a similar issue pre covid and asked my GP to refer me out of area. The first consultant didn’t think the pain was that bad and that in my early 40s I could just get used to hobbling about and not been able to walk very far. 🤷‍♀️ Consultant 40 miles away operated no problem. And also discovered my leg was broken and I had a torn tendon!

On the topic of Turkey, it's only been a few days since the FCO warned against going there for medical treatment. 17 British people have died after treatment there since 2019
www.liverpoolecho.co.uk/news/uk-world-news/foreign-office-warning-brits-travelling-23884330

Complaining that an expert consultant surgeon refuses to operate on you and going to Turkey for discount surgery is fucking mad.

Well, that is so similar to what has happened to me, I almost think you must be under the same healthcare trust authority as me! How long did you have to wait for the second opinion referral?

Those posters who have mentioned getting notes of my case management discussion, is it only PALS who can get it? They have been pretty useless so far for me.

This isn't some cosmetic surgery done for vanity, and NHS consultants are not gods. Its to save my joint because ONE bastard NHS consultant thinks women can just sit on their backsides baking fairy cakes for the rest of their lives while virtually every other consultant in the country would operate. However, in view of the fact that I pay a bloody fortune in taxes here already, I will consider any competent hospital and surgeon with a good record who will carry it out, rather than having my knee joint ruined. I really don't trust the NHS at all after this and I don't rely on the judgment of my particular healthcare trust.

I had my initial consultation for my second referral about three weeks after being referred. This was pre covid though.

i was then meant to have my surgery the week before the first lockdown and that was obviously cancelled. I only had the surgery done last year.

sadly it hasn’t fully worked. But that’s just one of those things. I’ve just had a further mri and ct scan done. If you’re in the Midlands and want a lower limb guy I can recommend Dr Dhar at nottingham.

I've seen other people - both male and female - be given a walking stick and a referral to a pain management clinic rather than have much needed surgery on their joints. I don't have a solution for you, because they went private, given the NHS suggestion was bloody ridiculous.

I think it's a bit like basic NHS dentistry, where you can either pay privately for expensive work, or they can yank the tooth out. Sometimes the NHS option is so barbaric that you have to go private.

I make a point of having health insurance for this reason, which on reading it back, sounds a bit like I'm living in America. I'm not, I live in the UK.

Sending you lots of sympathy. It sounds like a nightmare situation for you.

Please don’t even consider going to Turkey OP, you need someone you can follow up with afterwards.

The Turkish surgeons don't operate in caves without aesthetic you know. Their hostels are system is arguably better than our once great NHS. My dad and his wife lived in Turkey and she went the Drs with a persistent cough and had a terminal lung cancer diagnosis within 10 days. My Dad raves about the health care over there desire being an ardent fan of the NHS.

I have had similar issues with the NHS. I have several auto immune issues and my right knee has been very painful since I was 19. Diagnosed at 35. Told I need a knee replacement but the NHS won't do it until I'm at least 45 so I'm sat at home on benefits as I can barely walk. Now I need both knees doing and was told a few months ago it's a like 47 in my area and it's got to be really bad. I'm down to bone on bone and that's not bad enough?! I'm on the scrap heap. I wish I had enough money to go to Turkey and get it done. I want to live my life NOW, not in my fifties! I've got a lot of hip pain recently so it will be my luck I'll finally get my knees done and then they will need doing.

That's so shit op

I have been battling for my disabled son to have two procedures for the last two years. I am so tired and frustrated that we are selling our house and downsizing and plan to pay for it privately.

I have noticed such a decline in the last three years in my dc care, it's scary.

I would actually prefer a private healthcare system now than the NHS.

Can your GP refer you to another hospital trust? I'd google a specialist in that area and ask for a referral to them. The money follows the patient still, I believe.

My friend’s grandson has been left infertile at the age of 8 due to the wait he had for a surgery needed ☹️ I am on week 4 for 2 week wait referral for a breast lump. The NHS is utterly overwhelmed and if you have the money I would go private. I could fill a page with all the problems I have had getting treatment in the last two years and I am still waiting for two other things as well as the 2 ww referral.

Really sorry to hear of other people's bad experiences and I hope you get treatment soon. This is a depressing thread. I honestly think if I was a doctor, I couldn't work in the NHS and as soon as I qualified I'd go abroad. I can tell by the way the letter suggesting that "doing nothing was the way forward" was written by the consultant that he was kind of ashamed about it. Still doesn't cancel the fact that if you're a man in that hospital trust, you are far more likely to get that kind of surgery than a woman (I did a FOI request and they very reluctantly gave me the figures).

The thing is, you can get an infection in an NHS hospital too and they can refuse to do anything about it. My healthcare trust usually settles out of court I believe but one nurse who sued them for her bungled knee replacement and subsequent MRSA infection which they refused to treat for months obviously refused to keep it quiet. So yes, on balance I think Turkey is a good option as long as I'm careful. Loads of Americans go to Turkey because its cheaper than the US.

Its a very simple operation to take something out which is clearly visible on the MRI scan and isn't major surgery. Its a day case in the UK so I certainly wouldn't be getting any follow up care here either. It is actually part of the package in most Turkish hospitals in the first week.

I don't hold out much faith in the NHS second opinion being done in a reasonable time, I requested that the request for the second opinion it be put in a couple of weeks ago and I've heard nothing at all. Then I would have to go on the waiting list for the second opinion and then on the waiting list for surgery. Probably 9 months or so minimum.

No it is not only Pals who can access notes, you can submit a DSAR to the hospital. There should be information on the hospital website about accessing your information with a form and timeframes.

@myceliumama I agree the fact that the NHS won’t do it is totally unacceptable but to go ahead to get a cheap operation which can be done by excellent and experienced private surgeons here with proper follow up is madness. I’m sure that there are excellent hospitals in turkey but there are also outstanding knee surgeons here who can also operate almost immediately and will be on hand to follow up and you choose who you want to operate on you based on their skills and experience. No way would I have a random Turkish (or any other overseas) doctor I had never heard of and who nobody I knew had used go anywhere near me.

If your GP is equally as confused and frustrated, they can refer you to another NHS trust for a second opinion.
ry find it difficult to believe that the consultant refused to give a reason for no surgery but ranted at you over it. Strange.

A friend of mine was due an operation which the trust decided to withdraw from being offered. She was advised that if the pain affected her sleeping and therefore started to give her chest pains, they would do it because to not do so could be fatal. How's your sleeping and do you get chest pains?

I needed a hysterectomy & my CCG wouldn't fund it without me having tried a mirena coil for at least 2 years. I had endometriosis so bad I was unable to work & as a new single parent of a 6 year old was struggling to care for ds. They announced this 24 hours before I was due to go in hospital. I appealed with the help of my GP, Consultant & my MP, it took a month to go through all the stages of the appeal but I won. Are you unable to work because of your condition? If you are the fact that you may lose your job can be part of your reason to appeal. Other than that have you thought of presenting in A & E telling them you have fallen & hurt the area again? Maybe that could be a way in.

I'm laughing at the ridiculous conclusions people have jumped to about what your surgery is. It was clear from the near beginning what you were looking for.

Anyhow complain to the cqc as well as the CCG. I'm guessing you couldn't be seen by another consultant at the same hospital?

You are also smart enough not to try and lie to an A&E consultant. They've seen it all before!

This is a chilling read. For so many people to have to live in pain in this country. I hope the Tories are posted asap and we can work to getting our country working again, for the many, not just for the rich.

Report it to the press ? Get a journalist to write about it and emphasise on the sexist elements too ?

I've read the op posts.

I'm an NHS surgeon in an unrelated field so can't comment on the specifics of your case OP. And from what you've said it certainly sounds like your care hasn't been ideal, especially with regards to the communication.

But just because an operation CAN be done that doesn't mean it's the right thing. And I would leave the my job the day I was told I must operate when it went against my clinical judgement. The decision of the individual who is to operate must always be respected, because if things go wrong this is their responsibility so they must retain the absolute right to refuse if they think it's the wrong decision.

As you point out we most definitely are NOT gods, but we are human beings. Can you imagine being forced to cut someone up when you thought it was wrong? On the other side can you imagine (and do you REALLY want) to be operated on by someone who, for whatever reason, didn't want to do it?

On a handful of occasions i have refused to operate despite the patient wanting surgery, and stating they are happy with the risks I've quoted, which are often a 50% chance of making it worse. Some of them have been deeply unhappy, upset, and angry. The difference with your situation is that I've explained to them very very clearly why I'm not prepared to operate, been kind and empathetic to them, and offered them to be referred for a second opinion. Because sometimes things are not black and white, I'm not God, and someone else might agree to operate. I think you should be pursuing through PALS is a consultation with clear answers as to why in your case doing nothing is the correct approach. You really deserve opened and honesty.

You can still seek a second opinion or get this done privately (as you already are) while you try to get these answers, and then if you think your care has been unacceptable, especially if there is bias in the system, pursue a formal complaint against the surgeon and team who wouldn't operate.

I would strongly advise against going to Turkey though, even if it's cheaper, as there is no follow-up and no fallback if you have problems. You'll be back in a system you don't trust potentially under the care of the team who have refused to treat you so far. As someone who had said they can afford it pay the extra for peace of mind.

My BIL saw an NHS consultant who confirmed that he needed both knees replaced. He was told that the wait would be 18-24 months, and that they would leave it a minimum of 9 months between operations.

He paid for a private appointment with a different consultant, who added him to his NHS list. He had one operation within 3 month, and the second approx weeks later. Both were done on the NHS but in a private hospital.

I did wonder if he paid for the surgery privately (they can afford it) and is trying to wind me up, but MIL is adamant that they didn't have to pay for the surgery.

What is madness is to leave a highly educated woman say at home on benefits for the prime of her life. I've got three degrees, I'm qualified to teach, I've ran my own company before and have SO much to offer. But I'm in absolute agony with crumbled inflamed joints. My mental health is in the gutter from lack of sleep and this has caused my previously stable bipolar to be like a roller coaster. I'm not able to work. I don't have anything of a private pension. It's becoming almost impossible for me to drive my automatic adapted car.

To you, going to Turkey may seem bonkers but to me, at the very very end of my patience and pain limit, it seems the only viable option of I want to experience ANYTHING in the rest of my life. I'm only 43 for fucks sake. I'm never going to be the "right" age to get this surgery and to actually benefit from it. But I honestly don't expect you to understand right now if I went to Turkey and they operated and it got botched. So what? I'd get an above knee amputation on both legs. I'd be pain free. Not trying to walk bone on bone would likely save my hips. I could work.