Should patients be given all medical information in regards to their treatment while in hospital? And would you complain about this?

[ElizabethWakefield]

Basically to cut a very long and traumatic story short my mum went into hospital at the beginning of October for keyhole surgery to remove her gall bladder. She was treated appallingly whilst in hospital, but was finally discharged after 5 days with the op having been done. She was sent home with no after care advice, no one spoke to her, just given medication and told to go home.

4 days after the op she was in a lot of pain, she phoned up the ward and was told she'd had an operation, what did she expect She tried to explain that she felt awful, shaky, freezing as well as in agony, and that she'd had a hysterectomy a year ago and the after pain was nothing like this, but they told her it was to be expected.

The pain continued to get worse, but she felt bad about bothering them again as she was totally dismissed before. On the Saturday morning (6 days after being discharged, she phoned NHS 24 who told her to go straight to A&E, on arrival her stomach basically burst open and started pouring with smelly black liquid (sorry!!)

She was admitted and started on an antibiotic drip, cleaned out, given a colostomy bag, various procedures were done. During her stay she had various comments from medical staff (different hospital to where op was done) such as how she had been "butchered" head consultant refered to it is "shoddy workmanship" and she was also told that in 30 years on nursing someone had never seem scars or infection like it.

Basically the gall bladder burst inside her in the way out and she wasn't cleaned out, just stitched back up. She was told if she hadn't gone to A&E and if it has burst at home, she could have died.

During her time in hospital the surgeon was meant to come and see her twice, he never turned up either time.

She was in hospital for a further week, then was discharged with 15 antibiotics to take daily, along with various other medication, as her bowel had stopped working due to the amount of infection. They forgot to give her painkillers on discharge however and there was a huge carry on trying to get these. She still had a leaking open wound on her stomach, which had been cut opened, which she had to clean and change daily.

Fast forward to today, 3 weeks later, she is still ill, still has a leaking open wound, in loads of pain etc, but has a review at the hospital to explain what went wrong, the surgeon was meant to be there. He never came in, despite being in another room, my mum saw him.

Anyway today they mentioned that she also had a serious blood clot that they had been really concerned about. No one had mentioned this to my mum at any point. My mum said this and the dr looked horrified and tried to back-track. It was also not mentioned in her notes that were passed to her GP (she read them) so it is mentioned no where on her medical records.

She has actually gone back onto HRT which I'm not even sure if she should be, but no one was made aware of the large clot.

I know I said this was the short version, and honestly it is, so many other things went wrong. But surely someone should have made a point of informing her she had a large blood clot?

I have told my mum that she should make a complaint, but she is saying there is no point. I think she is just shocked, and ill and worn out, but I think she has been treated really badly and even other medical staff have hinted towards negligence. Even today the DR greeted her with the words "I wasn't the person who carried out your operation, you'll be pleased to know, you're quite safe today haha"

Fucking hell

Sorry for bad language, but my God that's OBSCENE treatment

I guess your Mum is in no place physically or mentally to start the complaints procedure... how do you feel about initiating it?

I would be on to the 'Patient Advice/Support' people at the hospital (may be called PALS?)

So sorry for your Mum

You could call the hospital concerned to request a copy of their complaints procedure, may be a starting point

Notnowbernard, I am honestly so pleased to see your reaction, it has been obscene, but so much has just gone wrong that I have started to think that maybe I was blowing things out of proportion, so I am so glad to have an outside view, thank you.

I was actually on the PALS website just before I started this thread, and I think that would be the place to start, also the hospital complaints area of their website directs you to PALS too.

I said to my mum today that I would do the complaint and start it all off and do anything that needed to be done, but she said that she needed time to think about everything. She had only just found out about the blood clot an hour before that, so I suppose she needs time to think.

I also think she should maybe speak to her GP about being back on HRT so soon, I don't even know if it matters, but blood clots and hormones don't seem to mix?!

Sounds awful, ElisabethWakefield, I hope your mum will get over this experience in due course.

Going down the offical complaints route is a good idea, PALS are usually a good first port of call. Ask to speak to her consultant/s with her notes for a debrief.

Re blood clot: it depends on what kind of blood clot they referred to in regards to HRT. A haematoma ie large 'bruise' inside a abdomen would be fine with HRT; a thrombus inside a vein/artery would NOT. I think that is an important one to clarify quickly.

As usual with these things, bad treatment has been made worse by appalling communication .

I can understand why your Mum is hesitant atm. Probably feel s to raw and too much of an ordeal to contemplate

But don't think it's a bad idea to start off with the things you mentioned in your last post

I think as your Mum starts her recovery she may well begin to feel very angry about her care and treatment, so good to have got the ball rolling

Again, I am so sorry for your Mum (and you, too)

What can I say - it sounds awful .
I think that it's quite common for hospitals not to discuss/reveal all the details .
I would be someone who would want all the details but I suppose they lack time .
Tho something as significant as a blood clot should surely have been brought to the patients attention .

My best advice ( sure others will help more ) is to write stuff up while fresh in your mind ,keep notes etc and when you have space and time use your recorded notes to complain .

Huge commiserations to you and your mum .
Oh ,and talk to GP .

That's absolutely horrifically awful.

The operation sounds appallingly managed, as does the discharge, and that response to her call after the operation is incredible.

I'm sure she just wants to lick her wounds and heal but I really hope that together you can complain.

Under the Freedom of Information Act you (or rather your mum) has the right to see all her records. She'd need to sign a form and there is usually an appointment to set up to do it.

And yes, she might want to be feeling better before she embarks on this, poor woman!

Elizabeth - how absolutely horrific for your poor mum, - I am so sorry for her, I remember posting on a thread you had some time ago when she was still trying to find out what the problem was.

I suffered a bad hospital experience a good few years ago, (nothing like what your mum has been through I must add) and I didn't complain at the time because like your DM, I couldn't really face it at the time. But I felt a lot of anger afterwards at how I'd been treated, and now I regret not doing it.

I hope you can find some way to help her,once she has had a bit of time, in my case having the hospital admit fault would have giving me closure and helped me come to terms with it. So I just mention it as something that your mum may want to think about.

I do hope she is on the road to recovery now and can eventually put this awful experience behind her.

Gingerroots gives good advice about writing down and recording what happens in the meetings and appointments.

Complain with a capital "C".

It sounds like the aftercare your mum received was appalling.

Thanks everyone for your posts.

Kurri, I remember all the advice you gave me at the time, sorry to hear you also had a bad time of it.

I am not sure what kind of blood clot it was, my mum said the Dr today just commented that it was a serious blood clot. My mum said today that she was given blood thinning injections everyday while she was in hospital and had blood taken twice a day, but no one told her it was due to a blood clot, she only really put 2 and 2 together today. She was getting so many other procedures that she didn't query it.

I have told her to phone up her GP about the HRT just to check, as she is not due to see her gp until next Friday. I see you mentioned this PD, do you know if she would just have to put a request in writing?

In regards to seeing the consultant, she was meant to meet with him rwice while she was in hospital (well 3 times if you count the first time she was in) and he never showed up. Twice keeping her waiting until 9.30pm at night before phoning the ward to say he wouldn't be coming. And again today she was meant to meet with him, but another Dr came in his [place, despite my mum seeing the surgeon in the corridor before hand (before she realised she wouldn't be seeing him)

She has to go back for an appointment early January and she asked if she could specifically see the surgeon at that time, so we'll see.

I spoke to her again tonight about complaining and she said that while she wasn't sure she was up to it yet, but that she definitely wants her medical notes, so I will try to find out how she goes about getting those.

In regards to noting things down, dates things happened etc, I do have records of most things, as I was the person keeping other family/friends up to date with what was going on, so it would be quite easy to get all that information, which may be quite useful.

If you are going to request a full copy of her medical notes I think you only have a certain amount of time to do it after the procedure (although she has had quite a few procedures now so I'm not sure which 1 would be taken for date purposes) so I would do this quite quickly.

I may be wrong, if I am I'm sure someone will correct me!

Take care and I hope your mum feels better soon.x

Thanks poorbuthappy, her first procedure, the actual Gallbladder removal was on the 5th October, so over a month ago, so I will definitely look into that, thanks

Get your mum to request photocopies of her medical notes. Get help to interpret/understand them if needed.

Speak to PALS, start a formal complaint right now. I am a nurse and there were obvious, truly obvious, signs of infection in your first couple of sentences TBH.

I would suggests she asks if it was peritonitis she was treated for - it is not unknown for the gallbladder to burst on removal but a thorough washout of the abdominal cavity and regular antibiotics would usually be coming along next.

Blood thinning injections x 2 a day is normal for after any surgery like this and is not indicative of a clot in itself - they would usually stop HRT and possibly start warfarin if a DVT was found.

If this was my relative, I would request an immediate appt with the original surgeon and frankly, if he definitely did make the errors listed above, I wouldn't hestitate to report him to the GMC for such poor care.

Thanks Goulish, that is very helpful. Who would she contact in regards to getting copies of the medical notes, as the operation and first stay was in a different hospital to where she was admitted and kept in for the second stay.

I will get her to find out if it was peritonitis, although no one actually mentioned that, that I can recall anyway (although to be honest, no one said much).

When she left hospital after the surgery, she was given no antibiotics, nor was she given them post surgery, before being discharged. The first time she was given antibiotics was when she was admitted to A&E 6 days after being sent home (9 days post surgery).

Also the blood thinners also weren't given post op, again it was once she was readmitted to the 2nd hospital.

Is there anyway the original surgeon can be forced, for want of a better word, to see her? As he has no avoided her on 4 occasions and I really can't see him agreeing to see her.

I wouldn't be wanting her to 'see' her as a patient, but as part of the complaint procedure one of the first things they usually do is discuss all the cockups concerns/issues, discuss frankly what went wrong and apologise. They do this in order to avoid being sued - as most people really want a proper explanation, proper apology, and assurance that it will not happen again.

Or if that is not forthcoming, after looking at the notes to assess things, I would definitely consider talking to a solicitor about malpractice - sometimes they will sort stuff out in order to avoid a court case.

My general impression of what happened - from what you have said - is that she developed peritonitis from infected tissue/pus left in the abdominal cavity (not neccessarily avoidable, is a risk for this kind of surgery but the risk is minimised with appropriate care which seems to be lacking), inadequate post op care and no pain relief or instructions of what to look out for, they were asked for advice when she developed the feverish symptoms/pain and failed to reassess her promptly despite these MASSIVE SIGNS OF INFECTION.

A catalogue of errors by the sounds of it. I wouldn't get too caught up the the 2nd hospital saying she was 'butchered' though - surgeons are notoriously competitive and are a bit like builders who whistle through their teeth and ask which cowboy did this shoddy job, IYKWIM.

Sounds like the 2nd hospital have done a good job of sorting her out. If you can, it would be a nice idea to call back to NHS24 and let them know that their correct advice was followed and was absolutely right.

This is just my overall impression though, obviously I only know as much as you have told me and I am not trying to diagnose or anything.

Hope she continues to recover nicely. Have to get to bed but will check the thread tomorrow.

Speak to Medical Records Dept for the notes, she will usually need to fill in a request form and then either request photocopies or have an appt to go in and review them at the hospital.

Time limit someone referred to is, I think, just about when it is free, as opposed to chargeable, to see them.

more info here

That is so awful, you should definitely complain.

I had my gallbladder removed a month ago and my experience was completely different I was treated really well and saw the nurse to change my dressings after I was at home.

I hope you DM improves soon.

Go via PALS. There will be a mechanism in the hospital to deal with complaints

You are looking at two things
(1) finding out what actually happened to your mum to answer questions like blood clot/ medication etc

(2) to ensure the hospital looks into what happened (or didn't happen) so that it doesn't happen again

You can request meetings with the staff/ doctors and also with the admin/ clnical governance for both these aims

you may also want to look at contacting special solicitors - or AVMA (association for victims of medical accidents). You don't need to go down the route of litigation/ compensation for these to be of great use wtih much experience - they would give you the practical support and help you need

you poor thing - you and your mum both

Your poor mum.

It's sadly quite common for hospitals to give you fuck all information about your treatment. I was under the care of a hospital for a while last year (outpatient) and no one bothered writing to my GP or me for several months. Not to send test results, diagnosis' medications, NOTHING. I was sick and tired of going to my GP for follow up who knew nothing as the hospital hadn't written. I took it up with PALS who were brilliant and sorted it out for me.

Bottom line, NEVER accept shoddy or absent communication after treatment. It's dangerous. You also should consider contacting your GP to liaise with the hospital but they probably wont bother.

Your poor Mum- and all of you. The post operative care has been non existant, compounded by the wrong advice when your Mum called the ward. Complications and adverse events do happen but this needs investigation into what went wrong. IMHO after discharge care (including the communication with the GP) is the bit missing in the NHS ( bring back the district nurse!).

Why complain? It sounds too bad for that.

See a personal injury lawyer. Firstly, you may receive compensation. Secondly, your lawyer has a legal right to get hold of the notes so you do not need to ask anyone.

If the hospital then want to negotiate a settlement, as they probably will, you can include a demand of full disclosure and an apology, which may be more important to both of you than the money anyway.

^ larry it's a Clinical Negligence lawyer they need not a Personal Injury lawyer.

You also don't need a lawyer to get the notes. The patient has a right to see the notes whether or not a claim is contemplated.

I know from experience as I am a PI & Clin Neg solicitor and the advice you have given, i.e.

" If the hospital then want to negotiate a settlement, as they probably will, you can include a demand of full disclosure and an apology, which may be more important to both of you than the money anyway."

is completely wrong.

Thanks everyone for your messages.

My mum is not interested in the money, at this point she isn't even interested in putting in a complaint to be honest, she just wants answers and to know what went wrong.

We are going to put in a request for her medical notes straight away, she is really keen to have these, thanks for the link to that, I will get on to it just now.

PALS sound like they could be very useful if/when my mum decides to take things further, I spoke to her again today, but she is now getting upset and crying when I mention it, so I will request the notes just now and leave her for a few days before mentioning it again.

Lynli, glad your experience was different, and glad you are recovering well. My mum was supposed to have a nurse come out to her daily to change her dressings after she got home the second time, but one was never organised and she then had to go to her own surgery daily, but as she lives in the top flat of a tenement building, the stairs were too much for her to go every day, so she only made it twice (not to mention the £15 a day a taxi would cost her) so she has just been doing her own wound cleaning and dressing daily. Which to date is still wide open in a cross shape over her belly button and weeping.

Thanks again everyone for all your useful help, advice and experience, it is really appreciated

Elizabeth - can you phone your dm's GP tomorrow and demand a district nurse go and check/change your dm's dressings? Don't ask, demand.