To be struggling to actually trust doctors anymore?

[Thriwit]

I was diagnosed with a medical condition a few years ago. It interferes with my life a lot. It limits everything I do. My NHS consultant says he won’t operate, it’s not severe enough, I’m too young etc etc. He’s mentioned before that it’s not cost-effective at my age.

I know from being on forums for this condition that people in other countries with my condition and level of severity usually have the operation. I asked my consultant whether I should try private, and he said of course they’d operate, they’re happy to take my money. It’d likely fail within 10 years, then I’d need further operations. Tbh I’d happily take 5 years of relief at this point, especially while my children are youngish.

I feel like I don’t know who to trust. Is the NHS consultant just trying to cut NHS costs by not operating (& I know this happens, I’ve had a different speciality consultant tell me this about something else). Is a private consultant only interested in taking my money?

I just want a purely medical opinion about the best way to manage my condition, that’s not tainted by financial reasons.

AIBU to feel like I can’t trust any doctor to tell me the best purely medical course of action?

It's hard to know without knowing the condition if the operation is reasonable. But if you want the operation, and a private physician will do it, and you can afford it, then I would go for it.

Could you ask your NHS doctor what they would do if money was no object?

Why don't you get a second opinion. I have dealt with some shocking doctors. I hate dealing with them.

I have to strongly disagree with going for granted nhs docs might be reluctant to offer interventions in certain instances due to cost effectiveness. but rarely is anyone denied something that will be truly beneficial. it would help to know the condition and the surgery. don't forget both surgery and Anaesthesia have their own quite significant risks... its a risk v benefit scenario. private doctors (especially outside the uk) may be financially motivated or more focused on what the patient wants v what is best. I could guide you to some evidence based literature OP if you give me an idea of the condition? having said all this, I myself have been misdiagnosed/inappropriately treated in the NHS and have had to resort to private care so I understand the frustration felt by many (I also work as a physician in the NHS... so acutely aware of the pressures faced by colleagues)

I just want a purely medical opinion about the best way to manage my condition, that’s not tainted by financial reasons.

You can’t get this. Operations cost money and other limited resources so cost is always a consideration when deciding whether an operation is worthwhile.

NHS trusts have criteria they apply so that resources are fairly shared between all patients (fairly is a bit of a contentious term here, but the idea is that the same criteria are used for all their patients). When you go private it is you that gets to decide whether the resources are worthwhile, because all those resources will come out of your pocket. So a private consultant will be able to offer you the surgery (assuming no ethical reasons against) and should be able to tell you how long the benefits are likely to last (this is obviously a statistical average or similar). Then it will be up to you to decide whether the cost is worth it for you. Of course if it isn’t ethical and you are happy with the cost/benefit balance the surgeon will be happy to take your money.

You are entitled to a second opinion. The thing is there are thresholds for NHS treatment which are fairly clear cut considering, but opinion on whether overall its beneficial will depend doctor to doctor without one necessarily being wrong or right. Medicine isn't an exact science, doctors work from science, research, studies, their experiences and these differ for all in terms of opinion. I suspect the reality is somewhere in the middle; yes you can pay and it might give some relief for a period of time, but overall the cost benefit might not be that great. End of the day they are advising not dictating, I personally don't believe all private ops etc are money grabbers, but of course there are benefits for them and it'd be naieve to think this doesn't affect things (just as it does the NHS).

Out of interest, is the condition you have endometriosis?

This is not for the squeamish, & I promise I’m not a troll!

I have an Oxford Grade 4 rectoanal intussusception (& moderate rectocele). I’ve tried every conservative treatment offered. Currently take sodium picosulfate twice a week, to produce liquid stools - so I’m basically tied to the toilet two days a week, feeling awful. It’s affecting things I can do with my kids, going away, and also work/my career - I’ve had to turn down job opportunities as I can’t be on site 5 days a week & can’t travel. The doctor’s opinion seems to be that I should carry on like this until I’m “old enough” (by which time my kids will be grown and my career completely dead), or until I completely prolapse. The surgery would likely be a rectopexy.

I just feel like even if I got a second opinion, NHS or private, I’m forever questioning their motives now. It’s awful - I just want to know what medically is the best thing to do.

Ahh that sounds very difficult for you. If I was in your shoes I would definitely pay private if it meant some relief. I think it's an absolute joke them saying that you are too young. The option should be there for you

Go for the private surgery! It is worth the money to be able to enjoy your life. The private surgeons will not be scamming you. They will not agree to the surgery if they think it's unnecessary.

@Thriwit medicine is not an exact science. There will be differing opinions about most things. I think you have to weigh up the balance between your quality of life and the risks of surgery and make a decision.

Get a second opinion. Perhaps one NHS and one private and do your own research. Hopefully you will be able to come to an informed conclusion and discuss if your consultants can support your point of view

Awful situation for u! I would get a second opinion. Would be tempted to pay though as it sounds horrible for you!

Have you looked up the NICE guidelines on this?
Could you go private for an assessment and use this to lever NHS treatment?
I'd also be playing the mental health card as its clearly affecting you hugely.

Lastly always go in with your DH/partner as it's harder for them to dismiss you 😡

Definitely see a private consultant. Sounds awful.

I "only" got about 4 years of relief from varicose veins after private treatment before needing a second op (to be fair, different veins the second time).

I am a teacher and had a 5 year old at the time.

Was it worth it? Yes!!!

I think looking closely at what other countries do would be a good clue. It's like this with knee replacements for younger patients. I guess if it's a do no harm situation then they have a point (ie if it piles up future problems you will regret).

This is very important okay. Some private surgeons are in it for the money. Some are not.

I have recently had one bodge job from a private surgeon. 16 months later and three different opinions- no one can fathom why he did what he did. (Must have been the money). I have just had surgery with another surgeon- life changing.

Please learn from my mistakes and get more than one (preferably three) private opinions. This is going to cost - but could save you from someone who is just in it for the money.

Also once you get diagnositics privately done you might be able to go back to your GP and choose to see one of your private surgeons on the NHS, if they also work for the NHS.

Fucking hell this sounds awful OP. Don’t know about this condition, but lots of review papers indicate that whilst conservative measures are helpful for many, there is a significant proportion for whom they don’t work. And in these cases surgery can be very effective. Definitely get a second opinion and go private if needed.

I just want a purely medical opinion about the best way to manage my condition, that’s not tainted by financial reasons.

That's exactly what you got, and you still won't listen.

I don’t think a surgeon would actively lie to you if they thought an operation would be justifiable (both wrt to your symptoms and financially) in order to save the NHS some money.

But, I definitely think you should ask for a second NHS opinion and seek as many private opinions as you can afford. Differences of opinion do frequently happen and it’s worth having as much information as you possibly can get so you can make a proper decision - either to push the NHS harder or go privately.

I’m so sorry you’re suffering with this, OP, it sounds awful.

It’s overly cynical and a bit naughty of your consultant to imply any and all private surgeons would tell you anything you want to hear if it made them money. But NHS doctors can sometimes get defensive if you mention you’re thinking of going private.

Private medicine is a business, but doctors are subject to the same ethical frameworks as their NHS colleagues (and arguably NHS rationing often leads NHS doctors to act against the best interests of individual patients to the point where medical ethics are not being met).

I’ve had NHS and private treatment. The NHS treatment was a mixed bag -sometimes fairly good, but often too little, too late, of an outdated and less effective treatment. The private treatment has largely been very good. The doctors talk to you as if you are an intelligent adult and tend to set out frankly the pros and cons of each treatment option and leave you to decide.

That said, doctors are only human like the rest of us, and sometimes they have biases and weaknesses. In your shoes I would request a second opinion on the NHS and also ask the first consultant to explain in writing the rationale for putting off the operation., including an explanation of why this is in your best interests. I would also get an opinion from a private consultant, including their rationale for why the proposed course of action is in your best interests. Then do your research, weigh up the differing opinions and rationales, and decide.

On the NHS? Are you serious?

The NHS offers rationed treatment. It looks to offer cost effective care to fhe population as a whole. At the individual level this often results in people not receiving effective and timely treatment. I’m astonished you haven’t twigged to that, unless you don’t actually live in the UK?

don't worry OP. these sort of things are everyday work for me, not an issue. just had a look into the literature and NICE (National Institute of Clinical Excellence) recommendations. Of course I can't give you any sort of 'medical opinion' on here, not least because this is not my specialty. My genuine heartfelt advice would be as follows.

1. if you are cash strapped, request an NHS formal second opinion. From a consultant in a central, well known teaching hospital who specialises in this procedure. Being a London graduate, I would of course recommend London, but if that's too much of a stretch stick to big regional centres. eg. UHB in Birmingham, LGI in Leeds, Manchester Royal Infirmary etc. go through their colorectal staff directory and look at their bios. Choose someone who has graduated from a top university and did their specialist training in the UK/Europe/Aus/north America. This is simply because specialty training programmes in less well off countries may not be as well organised. and before I am lynched, I am from Bangladesh born and bred and have done international developmental work so have first hand experience of these issues.
2. If money is no object (tbf one private consultation will set you back less than 300 quid, could be worth it), then do the same but see the doctor privately. ask your GP to do a referral letter for second opinion.
3. this consultant will probably give you a better perspective
4. you seem well read already. by all means do your own research, but don't let it overwhelm you. and take everything on the Internet with a massive piece of salt.

I think you very well may be offered surgical intervention given the level of debilitation. hope this helps! really really wish you all the best

sorry OP forgot to mention. Once you are seen privately, you can ask that cons to see you in their nhs clinic by asking your gp to refer to them (of course discuss with them). this would avoid the need for private surgery which is (a) expensive (b) private hospitals are less safe as not as well staffed, might not have ICU on site etc. although if you are otherwise perfectly fit and well, this is of no concern

I'm sorry but this is outrageous. The OP has a young family, a career and a very unpleasant and life-limiting condition and the NHS consultant told her that an operation to relieve it would "likely fail within 10 years" so it wasn't worth doing? Not worth it for up to ten years of relief, time with her family, career progression and peace?

I know people - not just doctors - get very defensive about the NHS, but I find it unbelievable that anyone is defending this consultant. OP's not suffering from post-nasal drip or sticky-out ears. Worst of all, the DR wants her to keep going in her limited capacity until she completely prolapses FFS.

Go private if you can afford it, OP. Go tomorrow. And if you can't afford it, I'd demand (can you do that on the NHS?) a second and third opinion.

I know 3 woman with varicose vein problems. 2 went private to have them fixed because they were in pain any day that they didn’t sit with their feet up all day. Instant relief, not perfect and like a pp 1 needed more done later. The third couldn’t afford to and can hardly walk but still doesn’t meet the NHS threshold, their life is limited so severely it’s causing other problems. I’m sure on a spreadsheet she’s still cost effective but that isn’t all there is to life.
definitely go private if you can, are you likely to be able to get it done again in 10 years? Is it possible to fix it again?