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"

She has been doing it herself for almost 3 weeks, so there is really no point. I tried demanding at the start, they agreed, then no one arrived, then she was told the only available option was to go to the surgery every single day.

Even when she said that it was far too much for her (she was physically unable as well as the financial cost) she was given a prescription to go and collect her own dressings (which she had to pay for) and do it herself.

Every single step of the way from the 4th of October has been a constant battle, from major things, to small things like access to pain killers etc. (although that in itself was obviously quite important)

We are both drained. My mum has no partner or close family, and I am her only child. I'm a lone parent and also work, so the whole thing really has been a nightmare, as I've been trying to visit her as often as I can (was going every day, but this week have cut it down to every second day).

You mention NHS24, so I presume you're in Scotland. There's a useful leaflet here about making a complaint, although if you're claiming compensation, it's another route (info from CAB).

I'm sorry to hear about your mum. I hope she makes a full recovery.

Thanks very much for that, yes we are in Scotland. Will get the letter of requesting the copies today.

I am an NHS manager and have dealt with complaints and compliments for many years in England. This sounds significantly worse and sounds much closer to a clinical incident (possibly what is called a serious untoward incident) which the hospital is obliged to report to the Strategic Health Authority within 28 days (I don't think you have these in Scotland, but there would be something similar). You need to complain to stop this happening to someone else, it won't be recorded in her notes.

I would forget PALS and getting the medical notes (they won't make sense or answer your questions). Please write a letter tomorrow on behalf of your mother (you are entitled to do this) and send it the hospital Chief Executive by recorded by post.

I agree with ghoul that the first phonecall to the ward suggests she was experiencing a post-operative infection. A total red flag. Also the blood clot thing is concerning; it is one of the top ten government drives in terms of safety (VTE).

Please feel free to contact me if you want help with the letter. I'll keep an eye on the thread, as I am horrified. I have heard some shameful stories, but this one is pretty high up the list.

Thank you QueenofWhatever, I actually sent of yesterday recorded delivery asking for her records.

So do you think there will be no mention on her notes about what happened? Her main reason for wating the notes is because there was never any mention of the blood clot until it was read from her notes to her at her appointment on Tuesday. So I think she at least wants that, so she can even pass the info on to her GP.

If i were to do a letter to the chief exec, would I just basically outline everything that we have concerned about?

My mum has an appointment with her GP next week also and she was going to speak to her about making a complaint, would the backing of a GP give it any more weight/ make the hospital take it more seriously, or would it not really make a difference?

Thansk again for your help.

I don't think the GP will add weight and worry that it could be 'lost' as a clinical query. You must complain, please don't wait

I don't think the notes will make that much sense to someone who isn't used to reading notes. There's lots of clinical jargon and acronyms and separate sections etc. Also it won't stop this happening again.

Just write a letter or phone the Chief Exec's hospital and basically outline what you said in your OP. It doesn't have to be fancy. They are obliged to investigate your concerns and write back to you. In England, if you are not satisfied with the response you can take it to the Ombudsman.

Here's more information. People complain about all sorts of stuff, we've dealt with complaints about lost slippers. The systems are in place and most managers are desperate for more complaints to be made. That nurse who fobbed her off when she phoned the ward should not be working until the severity of this is pointed out to her, it's not safe.