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.

NewMattress I've been following your story.
And I've been where you are - in pre-Covid times. I remember vividly trying to get the pain medication that had been prescribed by the consultant - who was furious when he found out it had been withheld. Meanwhile my DH had spent hours in pain needlessly. We start out trusting medical professionals and end up questioning everything - including ourselves. But what this comes down to is not training or expertise or lack of staff that's the problem. What we need more of is empathy, decency and kindness. And a little miracle it seems. I just hope your DH is home with the meds he needs soon

I hope your DH is more comfortable now x

Sadly, I'm unsurprised.

I think many, many NHS staff HAVE been incredible through Covid. They have not been looked after and have been very brave and genuinely wonderful.

Someone decent needs to take charge, cut out all the naval gazing about paint colours & art work. Stream line things and put money where it's needed & weed out the crap staff.

I was in pre Covid (2018), in our local hospital, that gets various awards for being 'outstanding'. It was dreadful, the nurses were largely rude, impatient, uncaring & worst of all incompetent. The ones who were either caring or competent were exhausted & talking about leaving.

My treatment & that of others was appalling. As the youngest & fittest I ended up helping the others a lot (which I was happy to do, but shouldn't have been needed) plus doing my best to keep our bathroom sanitised. As the cleaner came maybe every second day and used the same cloth to 'clean' the toilet then the sink & taps. The same bucket of dirty grey water being slopped around the floors etc.

They repeatedly brought me the wrong drugs & the wrong doses of others. Fortunately I knew what I should (& shouldn't) be having & was able to get the right ones.

Anyway, I won't go on, but that experience has made me terrified of getting Covid & having to go in there. I lost any trust I had.

@CaptainCarp

I would pay more tax if it would actually help the front line of the NHS.

I actually had a hospital stay in the EU whilst on holiday. I had some stern/firm nurses that did not take whinging & I was expected to do as told. BUT there whole demeanour was caring underneath.

I don't think throwing more money at the NHS is going to fix it though... It needs a whole reform.
Also people need to stop taking the piss with going to A&E / GPs with things like a cold or equally stupid things. (I have seen this / almost had friends do this)

Please please, no more reform !!! Just enough money to match other comparable countries.

Really sorry to hear this experience OP it's not acceptable but it sounds like the ward is understaffed and probably under-led too. I left the NHS as a ward nurse 3 years ago. This story reminds me of one of my last memories of being on the ward. I was unable to give a dying patient proper pain relief promptly. The patient had arrived to our ward from A&E with no drug chart so I had to find a doctor then find another nurse to do a CD with me whilst being chased by distraught family members. By the time we got the drug signed off and I put the needle in the patient's arm, they had died. Truly horrible experience and all because we were so understaffed. When I go out to restaurants I often think to myself isn't it strange how they're so well staffed and managed compared to our hospitals. Priorities of society...

@Rupertpenrysmistress

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.

In my experience it’s quite common for mistakes to be made converting a mg/mcg dose to the number of mls required to be drawn up - I’ve intubated two patients because of this sort of error even in a two-person check system in the past, and have been responsible for performing open disclosure over errors like this on several other occasions. The prescription was correct on each occasion.

I’m surprised you have never encountered this.

I’ve had to bite my tongue so hard because of similar hospice experiences years ago that I can never erase or soften the memory of during the final month. So very sorry OP.

@TheSugarRefiner

Really sorry to hear this experience OP it's not acceptable but it sounds like the ward is understaffed and probably under-led too. I left the NHS as a ward nurse 3 years ago. This story reminds me of one of my last memories of being on the ward. I was unable to give a dying patient proper pain relief promptly. The patient had arrived to our ward from A&E with no drug chart so I had to find a doctor then find another nurse to do a CD with me whilst being chased by distraught family members. By the time we got the drug signed off and I put the needle in the patient's arm, they had died. Truly horrible experience and all because we were so understaffed. When I go out to restaurants I often think to myself isn't it strange how they're so well staffed and managed compared to our hospitals. Priorities of society...

My experience exactly and many more in 35 years of Nursing. I absolutely tried my best but ended up burnout and with my mental health in tatters from the guilt of being unable to look after people properly and the dreadful situations I encountered on a daily basis. We had confused patients with terminal agitation falling out of bed, escaping from the ward and not enough staff to keep them safe. i still have nightmares about my time as a Nurse and have been left for about 3 years !

@Osrie

I’ve had to bite my tongue so hard because of similar hospice experiences years ago that I can never erase or soften the memory of during the final month. So very sorry OP.

I worked in a hospice for 15 years and witnessed some awful situations, drs who wouldn't take my concerns about a patient ( just couldn't be bothered) seriously and they ended up dying in pain. Drs who were not on the premises and had a 45 minute drive from home in the middle of the night to see a patient who was deteriorating or needed pain relief increasing or becoming increasingly confused or terminally agitated, some complex patients who needed all the quota of staff on a nightshift to turn them or reposition them due to severe pain or massive wounds/ drains etc, leaving no-one else to keep an eye on the rest of the ward. And very little of this hospice care is even funded by the government which is shocking in itself. The staff were some of the best I've ever worked with but there was still never enough to meet the complex needs of so many very sick patients.

@mango101 reform is possibly the wrong word.
I feel giving money to the NHS now would result in the upper management to be paid more & no actual changes in patient care.

We need a computer system which works across all hospitals / GPs... One of the issues I has was the fact the hospital I transferred to (for specialist care) couldn't recieve the files from the hospital I went to A&E at.

Mind the nurses apparently couldn't work the catheter that was put in there either (it had bloody pictures on it!)

Administration seems to be lacking a lot of the time. I got sent the the smear booklet 3 times in a year because they failed to get a suitable sample twice. It annoyed me because it made it I hadn't attempted to go for my smear & the waste of paper every time & postage which would be large letter rather than small.
Surely there should be some flag that a smear had been attempted but not successful rather than non-attendance.

On the flip DP received letters for a consultant appointment but nothing about the scans he apparently needed before this. Equally a trip to the hospitals xray department & delays for the consultant.

Fairly small things but if its happening to 100s or even 1000s it soon adds up.

I have suffered from a chronic condition for nearly 20 years. The NHS was abysmal from my first experience in 2004. It went on for many years until
I could take no more and went private. Not everyone has that option.

It’s hard to even talk about cos most people will defend it, then mumble some excuse about Tory’s. Who weren’t in gov in 2004 and hadn’t been for 7 years at that stage.

It’s in desperate need of reform, but no one wants to do that.

I’m so so sorry to hear how they’re treating your husband .

I’m another who was left damaged by the NHS; multiple major operations and woeful pre and after care as a teenager and in my early twenties that left me with PTSD .

One occasion I had dozens of stitches down below internal and external, and a nurse told me I didn’t need any pain relief, I didn’t need support to get to the bathroom and I wasn’t allowed a sanitary pad . I wasn’t even allowed to lie down; told I had to sit in a plastic chair . I remember sitting on a toilet screaming in agony with dark black urine .

Discharged after eighteen hours - spent the next 24 hours on my mums sofa hallucinating in pain until her GP came round and gave me injections . That was over ten years ago but it plays out in my head every single day . I have nightmares that I’m being held down and forced . I’ve never received an apology, it took ten years for the nhs to offer any support at all.

The NHS can do wonderful things and it does but when it fucks up it’s an absolute disaster .

I suspect lots of PP would be happy to pay higher taxes to fund the NHS better, I would. I also feel there’s lots of areas the government could cut spending, in order to fund the NHS properly

How about HS2 which currently has an estimated total cost of just over £100billion?

I complained to PALS once. They were just "sorry" i felt this way.

After a horrific experience giving birth to ds, being in HDU for over 48 hours with drips, drains & catheter, sat on an incontinence mat with no offer from staff to help me put knickers & maternity pad on, no bed bath, being ignored because I was too drugged up to feed ds. My mum asked for a bottle to feed ds & was refused because "she must breast feed him" I was too out of it to feed him even if I had any milk, my body had gone in to shock, I had hellp syndrome & had nearly died, my liver & kidneys had started to shut down. The only way I would be admitted to an NHS hospital now would be if I was too ill to say no, I use the NHS choices & go choose & book to my local private hospital where I have had 5 ops & received excellent care, if only NHS hospitals were run the same way.

Sadly my DMs experience was very similar and was before covid. Attitude of some nurses was awful, the nurses who were good were very good but sadly they were a small minority. One of the patients on the ward's daughter was a nurse in another hospital and was appalled by the behaviour of the nurses and said this would not be allowed to happen on her ward. I got a real eye opener with the whole experience.

I could have written many of these posts when my wife was in hospital with complications from pancreatic cancer. She died in August 2019, but some her experiences are what still keep me awake at night.

Many, many people who work within the NHS are the saints and angels we are encouraged to believe they are, but some are not. And you don't know from one day to the next which kind you will be seen by.

On one particularly memorable occasion my wife was begging for pain relief and when it finally arrived it was one 20th of the strength prescribed by her palliative care consultant, so it didn't touch the sides of her pain. The hospital couldn't find her notes (from the palliative care consultant in the same hospital), so I took a photo of the label on the bottle of oramorph we had at home, and sent it to them. They replied that they would try to find a doctor and get him/her to reissue the prescription - by this time I was on my way to the hospital (middle of the night) with her oramorph, which I then gave to her.

In this pandemic that certainly wouldn't be allowed because of visiting restrictions. I hate to think what WILL be happening to patients who have no one allowed in to advocate for them when they need it.

I had a dreadful experience pre-pandemic at a hospital with my ex.

The lack of care nearly left him permanently disabled.

There were plenty of nurses and every time I went to speak to one to try and get pain relief, test results or an update, they were all gathered at the desk chatting. They regularly left him in agony and one admitted she wouldn't have let that happen to her relative.

I was lucky in that I could be there as much as possible and be an advocate.

I saw them disconnect a man with dementia's buzzer 'because he's using it too much'.

It was appalling, and nothing to do with underfunding. The culture was just that patients were a nuisance.

In 1987 my late df was unable to feed himself and was left - he'd had 2 strokes.

In 1976 I had a summer job in a factory. One of the women had a boyfriend who was a chef in a large Liverpool hospital and she took orders for cutlery, half-pint and pint glasses. He also ran a mobile chicken and chips business using hospital food.

A lot of money has been thrown at the NHS since the 70s, but without identifying the problem it just seems to get worse.

We are in France and the healthcare here is fab. I wouldn’t like to be back in the uk under NHS right now. My husband had a problem which required MRI, surgery and follow up. All done with a specialist within 3 weeks!! Currently NHS waiting time for said procedure is a year!!

I hope your husband is more comfortable now OP x

I've worked in the NHS for 40 years now do community and I have notice a huge dip in care. The number of people who come out with pressure sores which then have to be dressed three times a week for a year is absolutely insane.
Hospital injuries account for about 50% of my work at the moment and I haven't got time for it, there is already enough work to do. This has got to be tackled. I'm sick of staying two hours late every night putting in incident reports but I must or they will just be swept under the carpet.

But please none of this angels nonsense, nurses are professionals and as professionals need to be fully accountable for everything they do.
Its isn't a calling or an unpaid hobby.

@Bagelsandbrie

Your poor Dh.

I have a potentially fatal rare condition which means medication must be administered at particular times (Addison’s disease). It’s not complex, just steroids but they must be given at specific times. I’m a member of the Addison’s uk Facebook page and I cannot tell you the amount of times people have been pushed into near fatal adrenal crisis by staff on the wards at hospital just ignoring the simple advice that steroids must be given at specific times - a delay of an hour can lead to crisis. They just expect us to fall in with ward drug round times - one woman in the Addison’s page wasn’t given any steroids for nearly 12 hours in hospital last week. She collapsed and nearly died.

Similar stories on the diabetes group I'm in.

I've read some of them open mouthed in horror. One where a midwife insisted on a new diabetic mother taking a huge dose of insulin while breastfeeding without giving her anything to eat. Unsurprisingly she slid into a diabetic coma 10 minutes later.

I've always thought the hagiography of the NHS was a joke. Individuals within it are to be admired but the body as a whole is appalling.

I was in on an assessment ward last week. My hip dislocated. I was sitting left on the edge of a bed, for four hours because 5mg of morphine should have worked, I didn’t need to yell, or cry, just stay calm. The physio was told that I wouldn’t move, not couldn’t move. Eventually the doc booked to see me turned up, took one look, said we’ll give you as much IV morphine as it takes. 15 minutes later I could move. He rocketed the nurses. I shall be getting on to PALS.
I’m sorry about your DH @NewMatress, please complain.

I'm afraid the only way to deal with it is to start complaining and let them know. Before and during pandemic the reality is the performance is extremely patchy. I know this is likely to draw wrath but honestly pain management is appalling in a hospital setting. It's almost unacceptable to criticise the NHS but it's not brilliant. It's underresourced and like everywhere else there are people who care and are good at their job and plenty that aren't. It's better than nothing but we pay taxes for this so it's a bit tedious that we're expected to be so grateful for a critical service.
I hope your husband gets the help you need and you get out of three as soon as you can

My DH had a very minor accident (or so we thought) and presented in A&E and to our Gp and urgent care centres numerous times and sent home being told there was nothing wrong despite him being a grown man crying in pain. It eventually resulted in a huge infection, sepsis and the threat of amputation looming over us for 6 months. This is in addition to the ambulance ride, the week long hospital stay, surgery and being told we would have lost him if he hadn't come in when he did. I have zero faith in our NHS