I love our NHS, I do, but OMG my experience this afternoon...

[NewMatress]

DH admitted yesterday. Long story, but he usually has his pain managed by the hospice and is generally comfortable. I gave the hospital the hospice discharge letter with a list of his prescribed meds, when he was admitted.

He's been calling me c. every hour crying with pain and begging to come home. I've spoken to the nurse in charge a number of time asking what's gone so wrong with his pain management. She's been quite rude saying that he's getting everything prescribed.

Anyway, eventually a McMillian nurse called me to check the dose as she thought the break through pain relief dose was low. It turns out they've been using a liquid with a concentrate of only 1/10 of the one he's actually prescribed. I.e his prescription is for 5ml of a 10mg per ml liquid every hour and they've been giving him 5ml of a 1mg per ml liquid.

Once we got to the bottom of that I thought he'd be more comfortable, but when I went to visit him this evening, he's still crying with pain because at 6:30 he was still waiting for the breakthrough pain relief he'd asked for at 3:30. The nurse told me it was because it needs a 2nd sign off as a controlled drug, which I understand, so get one! At which point she said well discharge yourself then. I'll get a doctor and you discharge yourself. The doctor never came, I'd love to talk to to a doctor, no one has yet been able to tell me why DH is still there, as they've established the chest pain he was admitted with is nothing more sinister than his usual cancer pain.

When he did eventually get the pain relief, both nurses were quite rude to me about my impatience and one accused me of saying I wanted her to lose her job, which was simply not true. I said I wanted her to do what was needed to get the pain relief I.e. find a second person.

Meantime, the man in the bed opposite as begging for help the whole time I was there. He has no use of his hands and no one would help him with a drink (I did) and when they brought his dinner they just left it for him with no means to actually eat it. I marked my card again by insisting that someone help him.

I'm exhausted and I'm not the one who's ill. Don't tell me everyone in the NHS is an angel. I get it's tough but this is simply not OK.

Sorry, that is really dreadful. Your poor DH, but it's a good thing he has you to look out for him. Imagine what it's like for those people who have no one. I've heard before about food just being left with vulnerable people who can't feed themselves, years ago. So sad that nothing has changed. I'm afraid I have never loved the NHS, far too many bad experiences and have lived in a third world country with far superior health services, so I don't know why everyone thinks it's so great.

Complain and put it in writing to the chair of the nhs board. The drug error should be recorded somewhere so ask for the reference for the error- either the Dr wrongly
Prescribed too low a dose or the nurses dispensed too low a dose. I’m a student nurse and I’d be expected to draw up the correct amount. That’s not unreasonable to expect.
Your husband can leave. He just needs to leave against medical advice rather than waiting for a discharge. So unless they’ve changed or upped medication he might be best to just leave.

@NoNobramma

Complain and put it in writing to the chair of the nhs board. The drug error should be recorded somewhere so ask for the reference for the error- either the Dr wrongly Prescribed too low a dose or the nurses dispensed too low a dose. I’m a student nurse and I’d be expected to draw up the correct amount. That’s not unreasonable to expect. Your husband can leave. He just needs to leave against medical advice rather than waiting for a discharge. So unless they’ve changed or upped medication he might be best to just leave.

It's not as easy as walking out. He needs them to arrange transport, he can't sit in a chair, let alone walk and if there is a reason he needs to be there, obviously we want that dealt with. Presumably they're not keeping him for the fun of it.

That’s awful.

I’ve seen similar things a few times, sadly. Yes, they’re busy but I’ve also seen nurses just deliberately ignore patients and be very cruel. I also had a very bad experience after having one of my children. Definitely report.

I hope your husband is comfortable now. And I hope you’re ok too.

Hospital staff can't seem that get their thick heads round end of life care. Hospices have drug reviews and doctors but they still insist end of life patients couldn't possibly be on that volume of pain relief and deny until someone explains, again.

Been there OP. So sorry your husband has suffered like this. It's too common.

@NewMatress this time last year I was going through a similar battle just to get my DH the correct medication he was written up for.

It was a losing battle. I'd been on this exact same pathway three times in the previous two years. Each the NHS said 'lessons had be learnt' like fuck they had.

Stay strong

@TwigTheWonderKid

No, none of that is OK. I know you have enough on your plate OP bu I'd consider putting in a complaint to PALS.

I work for the NHS and none of this is acceptable so I would file a complaint immediately. I'm sorry you have been through this.

Honestly? I’d film everything covertly and then let it go viral. Sometimes you have to take a stand. Heads would soon roll!

I sympathise, experienced horrors when I was in hospital a few years back, since which I have been determined to stay out of hospital if I can help it.

The MacMillan team know what they are doing, they're marvellous. Get him home and let them medicate your husband.

It’s not oK. I’m so sorry.

If you can muster the energy do put in a formal complaint that they will have to respond to. There’s clearly an issue with this unit and if it’s not flagged it won’t get fixed.

I really hope your DHs pain settles down.

40 years ago nurse's were there to give good basic care, asceptic technique and drugs rounds.
Feeding patients was taught the same as making a bed, emptying a catheter etc.
Now they are doing so much more, much of which used to be a doctor's role.
They also spend a lot more time writing up patient care rather than giving it.
The NHS is underfunded and understaffed and qualifications count more than empathy.

The mistake with your dh medicine is shocking.
Imagine giving the wrong dose of insulin or digoxin.

@Maggiesfarm

I sympathise, experienced horrors when I was in hospital a few years back, since which I have been determined to stay out of hospital if I can help it.

The MacMillan team know what they are doing, they're marvellous. Get him home and let them medicate your husband.

Unfortunately it was the hospice that insisted he went to hospital. His pain is increasing, as expected and he asked for a review of his medication, as instructed because he's been taking more of the breakthrough meds. He had a new chest pain which they wanted checked out before theybwere prepared to review the pain management. He's worried that if he discharges himself and the investigation isn't complete he won't be able to get the pain relief changed. I've spoken to the hospice today asking for help but they insist there's nothing they can do while he's in hospital.

He won't admit to chest pain in future!

I hope by the time you read this that your husband has got his proper pain relief.

Not OK at all.
Complain to PALS.
The NHS is not full of saints, like any institution you get the good, the bad and the downright ugly.

I read some of your thread yesterday op. Sorry about your experiences, it’s completely unacceptable 💐

My current experience of the NHS has been shocking. My child was on the children’s assessment unit. Only 2 children on the ward and about 5 nurses. Still couldn’t organise things like getting a requested drink of water until they had been asked 5 times. Then saying my daughter was dehydrated so that’s why they were struggling with getting bloods!! Got her mixed up with other patient 3 times, even writing wrong name on paperwork. It was absolutely ridiculous.

I’m so sorry your husband is going through that awful care. Those nurses should be ashamed of the care they’ve given

I too have seen both sides of the nhs. Nurses are either really wonderful or complete bloody horrors, there’s no in between.

That all sounds dreadful.

Part of the issue is the NHS is such a sacred cow. It might be free but it's frequently shit. In NI the waiting lists are horrendous, essentially there is no service.

Hope your husband is feeling better.

As a nurse I am so sorry to hear this. I suggest speaking to the matron. In my hospital PALS are quick to act and as a senior nurse I am alerted as soon as a complaint has been made. Can't say all are the same. If I were your husband's nurse I would contact our palliative team for support. What I think has happened re the pain relief is, the doctors have adjusted the dose on the prescription, some cannot accept palliative doses so prescribe miniscule amounts. I am fairly confident the nurses would have administered the prescribed amount so technically not an error.

As a nurse we have a duty to the patient so, whoever is in charge should hassle the doctor until it's done or, palliative nurses who would take it on.
There is always a senior nurse/site manager you can ask to speak to. It is unacceptable that palliative patients need to go through this and not all nurses are thick about EOLC even though I am an emergency surgical nurse, I know what is right.

Sadly patients need a relative as an advocate. Good luck.

As others have said, don’t complain to PALS. Go straight to the Trust complaint policy and put it in writing and escalate as far as you need to. Ultimately this was a drug dose error that lay with one or more staff members and it’s negligence.

I'm so sorry, OP. Your poor DH. How awful.

Some nurses are truly horrible. This one seemed more concerned with losing her job than actually doing it by the sounds of it. Please do complain about everything you experienced and everything you saw (patient left unable to drink, eat).

@NewMatress really sorry to hear of your further difficulties today. I am like you, I really don’t want to criticise the NHS but being seriously ill in hospital at the moment is pretty horrific. My DF was having Hospice at Home care (1 phone call a week from a hospice nurse and erratic district nurse visits) and when in hospital he reported (because we weren’t allowed there) that it was devoid of humanity: windows open because of Covid with everyone freezing (back in March). News of terminal illness delivered matter of fact style with no family, no kindness. Pain relief delayed, life saving procedures put off until it was too late. Just inhumane.

I am glad you can at least see him and be there to advocate for him. We found it so hard not to be able to do that. I’m really sorry the staff were rude to you. I know they’re all under pressure but it’s unforgivable. I’ll never understand why pain relief seems beyond hospitals. I hope whatever he needs from the hospital is done and he can return to somewhere more comfortable soon

Can he be admitted to the hospice next time ? Mind you I worked in a hospice for 15 years and even then, despite having much better staffing than any NHS cancer ward, we sometimes struggled to find anyone to check a controlled drug and patients would be waiting too long. I used to feel awful. We were lucky to have volunteers at the hospice to help feed patients and get them drinks but it's likely NHS wards won't have that option.
It was on one manic nightshift where I was having to choose between trying to keep a man dying of a brain tumour from falling out of bed onto the floor, and other patients all in severe pain and wanting pain meds at the same time, that I decided to quit my Nursing job and changed careers altogether. There is nothing worse than seeing people in pain and not being able to get meds for them quickly then knowing it is going to take another 20 - 30 mins to kick in.
I'm sorry your dh is going through this, so many places seem to be in a mess with short staffing.

You were there for only one afternoon, and look at the appalling treatment of patients you witnessed. It's serial, collaborative negligence.

I really hope your husband is comfortable now.