Poor hospital care following dad's emergency admission - what to do now?

[DiamondsAndRust]

Really hoping for some help here, as I have very limited experience of hospital procedure (probably a good thing!) and am getting increasingly anxious about my dad.

He’s 72, and was rushed to our local hospital by ambulance on Sunday night. He was vomiting and passing blood and was drifting in and out of consciousness. He has a history of stomach ulcers and has been taking aspirin and several other blood-thinning drugs since suffering a minor stroke in 2001 (I’m aware these drugs make any internal bleeding more likely and more severe.) He’s also had various tests recently for unexplained weight loss.

Once he was stabilised, he was in a holding bay for several hours before being given a bed. At the time we were told he’d need an emergency endoscopy to check for any further internal bleeding. He’s now been in hospital for two days, and this has not yet happened – apparently they’re ‘very busy’ and, despite being an emergency admission, he’s not enough of a priority. They now say they hope to carry out the procedure tomorrow, but there’s no guarantee. Meanwhile he’s still passing blood, and since he’s not allowed to eat in advance of the procedure he’s only eaten a sandwich and half a tin of soup in the past two days.

There seems to be no continuity of care or communication between departments.So far he’s been asked for his full medical history at least five or six times – the medical staff seem to note it down each time and then immediately forget it all. No one seems to be able to access the notes from his GP or the results of the barrage of tests he has recently undergone for his weight loss and anaemia. He’s on a drip, but other than that it seems he's being given very little care. A staff nurse told my mum today that his treatment would have been quicker if he’d gone home and come back as an outpatient!

I’m now really worried that he’s going to deteriorate further, and the longer he remains in hospital the greater his chance of weakening and contracting a bug. Several wards near his are already closed due to norovirus, and obviously this wouldn't help his digestive issues.The hospital is run-down, poorly resourced and historically has had a poor reputation. We have been as assertive as possible when we’ve been visiting (my dad hates to make a fuss and can be a bit of a pushover) What’s making it particularly hard to make our feelings known is that so far we haven’t seen the same person twice, and no one seems to be in overall charge of his care. So, what now? Is it time to lodge an official complaint, or does this risk making his care even worse?

Advice from NHS staff/anyone with more experience of the system gratefully received!

I have not got the experience to advise, but did not want to read & run.

I would be in the hospital asking questions until I got proper answers.

You might also want to come back & 'bump' this thread in a couple of hours time - it's in active convos now but loads of people will be busy until later this evening. I'll try to do so myself.

for you for now.

I would ring the GP possibly as well so they know. Also I would go back and insist to speak to somebody and yes I would start making a fuss to be honest but I don't know how ...sorry!

Take it to the top - go to the office of the hospital director and refuse to go until this person comes down with you to see your father and get an update on what is happening. Also contact a lawyer to ask why your father isn't being cared for properly. No messing with this.

Thanks so much for responses so far - really appreciate any help at all. It's so frustrating that it seems you can be as assertive as you like, but the only thing that ultimately seems to work is threatening the hospital with legal action/exposure. Surely this isn't how the NHS should work?!

Thanks for advice re. the bump magimedi - will visit again later to do that. Have already notified his GP, and think I'll step up the complaints when I visit tomorrow. Feel so sorry for people who don't have close relatives to do this on their behalf.

First thing tomorrow phone the hospital PALS office. They are the patient advice and liaison service.

They will take your concerns very seriously and will help you navigate the "system". Even if it doesn't change what happens to your father ie they can't actually increase the number of doctors available, they will make sure you are properly informed of what is happening, and they will make the team looking after your father aware that there are concerns about his care.

With regard to having to give his medical history lots of times: I know this is baffling and frustrating for patients, but it is actually a good thing. It is very common to find out extra, important snippets of info every time you repeat the history and examination. As the most senior doctor, who is last to see the patient, it is routine to listen to subtly different 'stories' from the doctors and nurses who've seen the patient, and then ask one or two very focused questions to tie it all together.

I hope he's on the mend soon. PM me if you have specific queries.

I have no direct experience of this but from reading other threads on here of a similar nature it seems contacting PALS (I think they're patient / hospital liaison) often helps. I think they usually have a representative in each hospital - maybe ask at front desk or via hospital switchboard.
Your Dad's care sounds shockingly poor. I fear you may have to kick up quite a fuss. Good luck and I wish your Dad well.

I wouldn't advise going to the director straight away, it won't affect the care of your dad but it will take time and won't improve the immediate situation.

When you next go in, ask to speak to the ward manager/matron/nurse in charge and tell them everything you have told us here. People often make the mistake of wanting to speak to doctors when realistically they only see the patients briefly and it's the nurses who really know what is going on with regards to every day care, doctors know more about diagnoses and complex medical treatment obviously. If he/she is particularly busy, make an appointment where you can talk in private. Be assertive but civil and polite. In my experience this is the best way to get the results you want without hindering your relationship with the nursing staff.

I wouldn't want to stop you speaking to a lawyer or besieging the hospital chief executive but I think at this point neither option will be helpful in getting clarity for your father.

There is a consultant on overall charge of his care - though they may not have seen him in person. You need to go to the ward and ask who that is - or look around his bed, it's probably written down somewhere. Then ring the hospital switchboard and ask for Dr X's secretary. When you get her or him request an urgent meeting with the consultant and your dad. Stress your anxiety and your concerns about the delay to his care. If you can find the ward sister or charge nurse you can try this with them as well. Whoever you're talking too be constructive and try and listen to what they tell you about the situation as well as seeing your own worries. You can let them know what the GP has done. If the tests were done elsewhere then no, they won't have the results, may not even have understood that he's had them. You need to build rapport - not accuse them of neglect and being crap. The situation is your dad is ill but not critical. he's being squeezed out of the queue for endoscopy by other people who are really falling apart and you need the ward staff and his doctor to advocate for him. you also need the ward staff to pull their finger out in terms of feeding him. It's a nightmare keeping somebody nil by mouth and then finding you didn't need to but in this situation it sometimes genuinely can't be avoided. What can be helped is what happens after that - so why as he only had a sandwich? Is that all he wanted or did they just not bother to source a proper meal? the former is fine, the latter is not but again you need to build a rapport with the staff and be clear that if they ask you dad 'is a sarnie ok?' he will say YES because he's a pushover. So they need to push him in the direction of better nutrition.

There's no question but that patients do suffer delays and what you really need are frankly inspirational doctors who PUSH their patients through the system and engage. There are lots like that. There are also lots who are burdened by process which is not all it could be and by a patient load which is overwhelming. Try to work with the staff but be clear this is your dad, he's your priority and you expect him to at least know what's happening when and to have ward staff in his corner.

I think, unfortunately, in order to get results you have to make a fuss. There will be someone in charge of your dads care. Next time you go demand to see the consultant/ senior doc. Explain what you have said here and insist a proper treatment plan is put in place. Hopefully someone with more experience/expertise will post but this is just my advice from my experience of having relatives in hospital.

Oh lots of cross posts and great advice! Good Luck!

I am sorry that he has had poor treatment.

Below is the NICE guidelines for an upper GI bleed. It does state that he should have had an endoscopy within 24 hours. These are the guidelines that the hospital should be using.

publications.nice.org.uk/acute-upper-gastrointestinal-bleeding-management-cg141/guidance

You should find out via PALs why this hasn't happened.

Thanks NorthernLurker for a different perspective. What you say does make sense, especially as I'm really not a 'stampy feet' type person - I'm generally much more comfortable taking a collaborative approach to things than being confrontational.

What's difficult, though, is that when someone enters the hospital system for the first time, having previously been pretty healthy, it's really hard to work out what's normal and what isn't; what is actual neglect and what is just the result of the staff being a bit hard-pressed. I think the responsibility for this is going to be largely down to me (and my partner) - my dad is too easy-going about his health, and my mum is frustrated by the lack of care but feeling pretty overwhelmed and out of her depth dealing with things.

I realise that there will be other patients whose need of hospital resources is more critical than my dad's, but having read dire warnings on the internet (and, yes, I know I shouldn't!) about the consequences of delayed endoscopy for internal bleeding isn't exactly reassuring.

I think part of the problem is that this hospital's reputation goes before it to some extent - most of this isn't their fault; the building is literally falling apart in places and they're chronically under-resourced. Nonetheless, most of the staff I've dealt with so far have been terse at best and downright rude at worst, and this adds to my feeling that dad's not being properly cared for. I completely see the issues with nil by mouth, but the sandwich was the only thing offered, and was only given grudgingly at 5pm once it had been established that he wasn't having the procedure. The same thing happened today with the soup - no other food offered, and dad was treated as an inconvenience because the staff were meant to be going off duty. He has a fantastic appetite normally, and would certainly not have chosen not to eat!

Thanks callow, that's really helpful. They are clearly breaking the NICE guidelines in my dad's case. Am so clueless about these things that I had to google PALS to find out what it was, but all is now clear! How do I need to speak to to access PALS within the hospital?

Sorry - completely missed Antidote's post about PALs - will give them a ring tomorrow morning.

Also very enlightening to find out what lies behind the need for the repeated medical histories. I just wish the doctors/nurses would explain what they would doing and why - would make this process a whole lot easier!

It certainly doesn't sound like he's getting great care - but the reasons for that are complex and so is the solution. I would be exactly the same as you in my anxiety. He should have had the test by now - but it's moving past that and getting to where you need to be that's the trick. The appetite thing - lots of people eat very little in hospital and it's very chicken and egg - do they eat little because they're ill, are they ill because they're not eating. That is one area where a bit of encouragement and info to the nurses will really help. Even excellent hospitals will struggle with this sometimes.
There's no excuse for rudeness at all. Ever. The terseness is a symptom of staff struggling to cope. People are incredibly rude to hospital staff sometimes and it's very hard not to flare up in response. One way some people cope is by saying as little as possible. There is almost certainly a lot more going on than you've seen. There's every chance one of the nurses has been on the phone saying Mr X needs his gastrocopy TODAY and we've kept him nil by mouth all day AGAIN. But they are never going to come to your mum and dad and say 'we've been begging for your test and we can't get it' - and if they did you'd all be scared and horrified. A lack of communication is a complex thing. Just take deep breaths, ask questions, be polite and assertive but also appreciative of their position - which you very clearly are. I hope your dad feels much better soon.

How to access pals:

Phone switchboard, ask to be put through to PALS.

Ask at main reception to be directed to the PALS office.

Look on hospital website, there may be a direct dial number or an email address.

Yes, NorthernLurker, I totally agree. I like to think that my default mode is polite but assertive, and I really want to build a positive relationship with the medical staff, but it's difficult when you never seem to see the same person twice, and you're having to start from scratch each time. Poor dad is being poked and prodded by a stream of different people, some of whom stick a thermometer in his ear or a blood pressure monitor on his arm without a single word and then disappear off again.

Thanks again Antidote. Sorry if it seemed like a daft question, but I hadn't fully grasped what PALS was!

I am having the same problem with my grandad and tbh the only way we get anything done is complaining en masse and ringing the ward to ask what is happening.

Not ideal but we are worried he will get ignored if we don't

I think your best bet is the ward sister first off and then ask for a meeting with the consultant/ reg in charge of his care. They are right, he is not an emergency though. They will ( or should be) doing regular obs and daily bloods. If he had a drop of bp or his hb dropped they would then do him as an emergency case. It sounds like he is stable right now though?

If he is nbm for 3+ days though he should at least be on a glucose drip for calories. And as soon as they know/ knew he wasn't going to be do e that day he should have been offered a proper meal.

The person at the top needs to know and you need to document everything for a lawyer - to not do this makes problems later for you if you want to complain. Talk to the nurses/doctors and say that you are taking notes that they will sign as an agreed record of your conversation. You have to be there and making a loud voice

Thanks Winterclause - will definitely follow up on the glucose drip. I think communication has been a bit of an issue - he is stable now (albeit still bleeding lightly) but they keep saying things like 'I've told the endoscopy team he's an emergency', which confuses the situation. And the time scale has changed from 'an endoscopy by tomorrow lunchtime' (when he was first admitted) to 'some time within the next few days, when we can fit him in' now.

So please you've got lots of help & sorry I didn't bump it earlier this evening.

Hoping things have changed for the better tpday.

As a nurse I can tell you that we have patients rushed in as the surgeons want them to have various procedures done and then they sit there for a week not having had anything done as they've admitted too many patients and they end with a queue. It is something we moan about. You may not see us doing it but we do.

To the patient it looks like we aren't doing but it's not true. I would ask your nurse or nurse in charge what's happening and ask the doctors when they come on ward round in the morning.

It may be that he was made nil by mouth then this keeps changing and he can eat again, which may have been why he isn't eaten much, in which case he should have a drip if he's going long periods without food. I hope he's not hust being forgotten. But you have every right to ask.