AIBU to expect reconstruction on the NHS

[Welshmaenad]

Probably v outing but never mind.

Last summer I developed a large, rapidly growing breast abscess (it was about the size of an apple under my areola). I was referred to breast clinic and sent for an ultrasound. Ultrasound operator confirmed it was a sealed abscess "full of gunk" and then decided to biopsy it despite no request from the consultant to do so. Consultant then saw me before I left, aware of biopsy. No antibiotic cover offered (have since discovered this is best practice guidelines).

Over the next few days I became very unwell, fever, rifles, vomiting, breast hugely swollen and red/sore, pus leaking from biopsy site which expanded and started going black. On gp advice I presented at a&e. Another ultrasound confirmed biopsy had ruptured abscess and contents had dispersed through my breast tissue. I was admitted.

Following day I had extensive surgery to remove necrotic tissue. The day after that I was taken back to theatre as there was more necrotic tissue, I was then isolated and informed I had necrotising fasciitis. I spent three further days in hospital, then discharged in oral antibiotics, district nurses daily to repack wound. They ended up removing g about 50% of my breast tissue. I was unable to work for four months.

Seven months in and wound us still 2" deep and being packed though I am now in work. Aftercare has not been great from the hospital side - GP surgery nurses have been fab though. Yesterday I was in clinic and saw a registrar, I asked about reconstruction (was told by surgical team at the time this would be done). He "doesn't see there will be a need for it and it looks ok". It is not ok. One breast is about 3 cup sizes smaller than the other, hangs in a sad triangle, folds itself in half if I put an underwire bra on and doesn't fill the cup, half the nipple is gone, a great puckering scar has formed. It looks like an anus. I have a boob anus.

AIBU to expect them to at least try to make it look normal? I'm being made to feel I should be grateful they saved my life. My life would not have been in danger if they hadn't burst the bloody thing. I could have it drained via needle aspiration with no surgery at all. Several people have suggested I sue for med neg. what would you do in my position?

That's horrific OP and I think you need to pursue this further, as well advised by mayhew earlier on the thread. I would want to have this investigated just so that no one else has to suffer in the same way.

@helenadove it was a female reg as well. Who proudly told me that she had two daughters with the exact age gap she wanted but that I should wait as long as possible before trying again because my birth had been traumatic.

internalized misogyny in that case. Bastards.

I don't think the NHS gets a say in whether you get the operation. You can offer them the option of doing it themselves or getting a bill for one via a solicitor.

It sounds like you've had a really torrid time and I'm full of sympathy. The best thing to do would be to ask to go through your medical notes with PALS to make sure you understand fully everything that happened, before thinking about how you want to proceed. It may well be you have grounds for a formal complaint or it may not. I certainly think you should be able to have breast reconstruction but if there is still active infection (which I'm wondering about because you still have a wound being packed) it wouldn't be the right time until this has healed. The other factor is that there are lots of things that might make some forms of reconstruction not suitable (mainly if you smoke, have diabetes or are very overweight - none of these being about judgement of you / your lifestyle but about the likelihood of success being strongly affected by these factors). If you don't think any of these things are relevant costly of make sure you're seen by your consultant to discuss this or if it was them you saw I'd ask for a referral for a second opinion, in another hospital if you prefer.

There's a lot of crap being talked on this thread though. It may well be you have grounds for a complaint but I wouldn't mind betting half of the people on this thread know fuck all about the NHS, breast reconstruction or breast sepsis. So as someone who works in the field, here is some clarification...

It is not best practice to use antibiotics following a biopsy. It is if there is an active infection but it wouldn't be necessary in every case (for eg if you were systemically well, there was no redness on your breast, and they had aspirated all the pus). This is why you need to check this in your records.

It's perfectly normal for a radiologist to do a biopsy if they think this is indicated on the scan, and one of the alternative diagnoses for a breast abscess is an inflammatory breast cancer so this could well have been the right decision. Again, this is why you need to go through your notes.

Finally treatments in the NHS are quite rightly being rationed because there is no money. Things will vary between different areas but breast reconstruction is not currently one of them. However, making sure you have the best chance of success before embarking on this is totally appropriate, anything else would not only be a waste of NHS resources but also the wrong thing for you, potentially putting you through more surgery that ultimately fails and leaves you in a worse situation than you are now with fewer reconstructive options.

Would I sue? If on review of your notes it is clear mistakes were made (which may or may not be the case), and you can only get reconstruction by paying for it (which I doubt with the caveats above - you just need to be at the right stage in your treatment and see the right person) then I would. If mistakes were made but you can have reconstruction I'd put in a formal complaint so lessons can be learnt but not sue. If mistakes weren't made then I wouldn't sue. All this will do is take more resources from a cash strapped NHS. But this is me, you need to get all the correct information and then make the decision that will help you move forward most positively from this.

As for this comment by Mightymucks:

I would sue. Not least because as far as breast cancer is concerned they don’t have a great rep re quality of reconstructions

Who is they? All of the breast cancer surgeons working in the NHS? I think you need to get your facts straight. In particular with regards to how you think suing would make any difference to the quality of breast reconstruction given that most private surgeons also work in the NHS. But also about what you can achieve with breast reconstruction which will never be as good as what was there before and is largely limited by individual circumstances and not the skill of an individual surgeon. But no, you crack on and slag off a large group of dedicated professionals with no grounding

I have every sympathy here for the OP and think she should pursue this complaint formally. However i would like to clear up a common misconception. The NHS does not and cannot carry any insurance and payouts come from general NHS funds.

In my experience, you will get on better via formal complaint direct to Chief Exec. You have a tighter timescale and there is usually a decent investigation and resolution.
If you go legal first, it gets handed straight to legal department which can be very slow, adversarial and defensive.

Tell them that the uneven weight distribution is causing back pain. Then sue them to recover damages fir the damaged breast, time off work etc. The NHS will never improve if it isn't held accountable for its mistakes.

I don't think the NHS gets a say in whether you get the operation. You can offer them the option of doing it themselves or getting a bill for one via a solicitor

This is not how it works. Is the solicitor doing the operation?

As per my last post it isn't as simple as this. But I will reiterate that I think the op should have reconstruction once she is at the right stage in her treatment and assuming any contraindications are addressed to maximise the chance of her reconstruction being successful.

Gincision - the OP clearly said that the pus wasn't drained - her abscess ruptured and led to necrotising fasciitis, which as a health professional you know is very very serious.

My experience was that the 'dedicated professionals' I saw hadn't a fucking clue - when I asked them how I would breastfeed with an open biopsy site they said I should cover the site 'when I wasn't feeding' - given my DD was a newborn that didn't really happen at any point in the day. I had to actually laugh in pure horrified shock when I was told to feed from the other breast - the so-called 'dedicated professional' working in a Breast Institute didn't know that if you feed from one breast, the other is also stimulated and produces milk and that if you don't feed from the other breast it becomes engorged and very sore. I mean surely that's fucking basic knowledge?? My very clear sense was that they knew nothing about the normal function of a breast - ie breastfeeding. Absolutely not acceptable at all in my view.

They also had no guidelines whatsoever and absolutely no knowledge whatsoever about what to do about a situation in which a breastfeeding woman had been given a biopsy that hadn't healed properly. I had to detail my treatment regime, which I had devised myself, to the supposed top surgeon in the area because he didn't know what to do. Again, not acceptable.

I’m not sure what kind of reconstruction they could do though. You can’t fit a partial implant. They would need to give you a mastectomy first and then reconstruct.

I don't see that there's any 'I would only sue because...' about it.

You've been left in a mess. Someone needs retraining and you should absolutely be compensated.

You could absolutely ask about a referral to the breast prosthesis clinic and get a partial prosthesis to balance things up

She didn't say it wasn't drained. She said Ultrasound operator confirmed it was a sealed abscess "full of gunk" and then decided to biopsy it despite no request from the consultant to do so

Could have been drained as well. Or it might not have been. I'm not saying her treatment was correct. I'm saying it might have been, and the best thing is to make sure she is absolutely clear with all the information before going in all guns blazing as many posters were suggesting.

Neither do I think the NHS is perfect. However most doctors do what they think is the best for their patients but because they are human will make mistakes. And yes, when mistakes happen the NHS and health professionals involved should be held accountable.

Honestly though, I think a good proportion of people on this thread could do with going and experiencing what it's like when healthcare is not free at the point of delivery (I don't mean the op) before laying into the NHS. Which on most objective measures is the best healthcare system in the world anyway!

If you read the rest of what she wrote you'll see : 'Another ultrasound confirmed biopsy had ruptured abscess and contents had dispersed through my breast tissue.'

Good luck. Definitely pursue this.

I appreciate the NHS hugely Gincision - I come from Ireland where I had to pay 60 euros for a GP visit. What I don't appreciate is arrogant, ill-informed doctors who do damage through ignorance. That's a separate issue and one I think should be addressed without threats about how sad we'd all be if we had to pay.

Standard practice at our great clinic would be to drain it after the ultrasound. Abscesses do refill and come back. I was also wondering if it had been drained after the biopsy.

Great clinic? Breast clinic!

You've been left in a mess. Someone needs retraining and you should absolutely be compensated

Again, possibly but not definitely.

The treatment for necrotising fasciitis is to remove all the affected tissue. Without this the op would have died. None of us on this thread (including me) can say this is a result of the biopsy and lack of antibiotics. It's entirely possible that's the case. In which case yes, the individuals might need retraining.

It might be that this would have happened anyway though. WE DONT KNOW. Which is why the op needs to be sure she has all the right information.

Regarding reconstructions not being great. No idea why anyone would think that. I’ve seen some fantastic reconstructions after breast cancer

First complain formally.
Also see your GP re referral for reconstruction as this is another possible route.
The complaint may yield results,if not see a solicitor who specialises in medical negligence.

What I don't appreciate is arrogant, ill-informed doctors who do damage through ignorance

There are certainly some of these and I'm totally with you that this is a separate issue that needs to be addressed. And that being free doesn't excuse poor treatment of people. You've obviously had a bad experience but I have to say most doctors I've come across working in the NHS are not like this - they are the minority and I'm sorry you met one. I also wasn't especially referring to you with the post you referred bit rather to a lot of other posters on this thread who are just slagging of the NHS.

If you read the rest of what she wrote you'll see : 'Another ultrasound confirmed biopsy had ruptured abscess and contents had dispersed through my breast tissue'

Which doesn't mean it hasn't been drained - abscesses can refill after initial drainage

If the NHS won't reconstruct then pursue a claim. You poor thing how terrifying for you Only a complete arse hole (with brain anus) would grudge you NHS reconstruction after they butchered you the fuckers.