To be furious after tonight and feel the NHS is not good enough

[DespairingofNHS]

My mum is in hospital with a chest infection. She's bedbound and has little mobility after suffering from a series of strokes over the last several years. She can speak but has absences, forgets she's talking, eating etc. She needs help to eat and make sure she's eating enough.

I arrived at the hosp. tonight at 7pm and a tray of food was sitting next to her, untouched, cold and still sealed. It was clear no attempt had been made to get her to eat or even to take the film lid off so she could try to feed herself. I asked to speak to a nurse who advised that the doc had decided at mid day to put her on nil by mouth. I had to ask a series of questions to find this out, nothing was willingly volunteered. Apparently they were worried about her swallowing. I asked what the plan was and they said they were waiting for the SALT (I had to ask what this was - speech and language therapist) to come by. When I asked when that would be they said 'tomorrow or the day after'. I said 'so your plan was to let her go potentially 48 hours without food or drink?' the nurse said 'well no one ever died from not eating for 48 hours'. She advised me that mum had eaten loads yesterday including lots of chocolates fed to her by the nurse (wtf - she's diabetic), This begs the question why the next shift decided she couldn't swallow to the point where she shouldn't be fed. She can be a bit absent and forget she's eating/sit with the food in her mouth. This had been communicated to the next shift as 'she's refusing to eat'. I asked why they didn't intubate or put her on a drip. not procedure apparently! why didn't they consult us? because they have 55 patients on the ward and can't check with people's families about treatment...or deciding to starve them.

Needless to say I requested the doctor to come and attend - the doctor assessed her and saw that my mum was able to swallow liquid fine. BY the time we finally got her some food it was gone 9pm and my dh had to stay to feed my mum personally while I took dd home to bed.

I am furious that this could happen and that if I hadn't visited (some of the patients on the ward had no visitors at all) they would have happily left her with no food or water for 48 hours till the SALT could attend after the bank holiday!

Partly I'm writing this to remember it accurately later. But I also really want your thoughts and advise on how to properly complain about this in a way that ensure it gets dealt with. The nurses and docs simply said 'we've only just got on shift'. Nothing was written in the notes to say why the nil by mouth was put in place or even that it had been (the ward manager showed them to my dh although said he wasn't really supposed to). Their response was simply to hand us a complaint form...we had to ask them to sort her out some food. I have no confidence the same thing won't happen again tomorrow. I feel like they unilaterally decided to put her on a Liverpool care path and let her die. She just has a chst infection and is not terminally ill. I am shocked by the lack of care and compassion and feeling very scared about getting old one day and having to be entered into this NHS system.

You sound caring and as though you have done a very good job mamadoc. But whilst I agree that a motivated and valued staff is very important I disagree that is where it starts. It starts with the patient being put first and that is where and why the rot has set into the NHS. The patient, the customer, the one who pays the piper nowadays takes last place. After management, after doctors, after nurses and after admin. That is what has gone wrong *nd wouldn't it all be easier if there were no patients - indeed how long would it take the system to notice?

I really am not sure anymore that it does just need money. It needs a rethink but it is hard to turn a juggernaut around.

Those who say they will stay at home rather than go into hospital when frail and elderly are spot on. They should be enabled to do so. A big acute hospital is actually not the place for elderly confused people. They get more confused,acquire infections and lose skills. Many could be treated at home if we had better community support services.

A big general hospital is also not a good place to die. If we had better palliative care more people could die at home.

The problem is that the way the system works the hospital gets paid for procedures done, patients admitted, referrals made by GPs so there is an incentive to admit and you can't shift cash into community care unless you close wards which is unpopular.
Ideally you would start the community service, reduce admissions, then close wards but because of money it's always shut ward, promise better community service to replace it but never quite deliver, then get slammed in press for queues in A&E.

leverette what on earth are you describing here?

Nurses cow towing to doctors may have been ok in 1939 but it certainly wasn't around in my late 80s/90s days.

Not saying a thing, mamadoc . I'm in the same trust as you in a non-clinical capacity and I recognise everything you are saying.

What you're saying about investing im keeping frail elderly people at home is absolutely spot on. It would reduce costs, improve lives, keep people in their homes for longer and all in all be the best solution possible. The thing is that it would take a seismic shift in infrastructure that would cost an enormous amount of money, so it won't happen.

Vivalebeaver Jeremy Hunt is our MP. A friend of mine and I have both had reason to contact him over completely unrelated issues and we have been amazed at the speed he got on both cases and resolved the problem.
The departments in question didn't waste time trying to placate him or defend themselves; they sorted it out. Straight away.

It absolutely does start with the patient and actually I agree with you that sometimes the NHS does badly at customer service aspects eg waits in clinics, last minute cancellations, lack of 24-7 working. I do believe that fundamental clinical care is usually of a good standard. The NHS will come through for you when the chips are down and actually a private hospital often will not (have seen the NHS bail out some private disasters). This may not be some people's personal experience I realise but I have to keep the faith!

For me the best reward is to do a good job for someone, get them better or at least improve things for them. They don't even have to be grateful or buy chocs (although it's always nice). It's just satisfaction of a job well done. The worst thing is to feel you can't do what you need to because of lack of resources or support or whatever. So I guess I am saying that staff satisfaction and good patient care usually go hand in hand.

I think that is true Leverette.
The service user becomes almost incidental to maintaining the illusion.
Parkinson's Laws apply

Parkinson's First Law: Work expands to fill the time available.
Parkinson's Second Law: Expenditures rise to meet income.
Parkinson's Third Law: Expansion means complexity; and complexity decay.
Parkinson's Fourth Law: The number of people in any working group tends to increase regardless of the amount of work to be done.
Parkinson's Fifth Law: If there is a way to delay an important decision the good bureaucracy, public or private, will find it.
Parkinson's Law of Science: The progress of science varies inversely with the number of journals published.
Parkinson's Law of Delay: Delay is the deadliest form of denial.
Parkinson's Law of Data: Data expands to fill the space available.
Parkinson's Law of Meetings: The time spent in a meeting on an item is inversely proportional to its value (up to a limit).
Parkinson's Law of 1000: An enterprise employing more than 1000 people becomes a self-perpetuating empire, creating so much internal work that it no longer needs any contact with the outside world.

I don't see the acute hospital disappearing any time soon. The average age of patients in hospital is 82 now; if they are in hospital, it is because there is nothing else that can offer the kind of basic and yet invasive care (typically subcutaneous and IV fluids and nasogastric feeding) set up. People can go so quickly from being totally independent to being critically ill at that age. But it needs a lot of whole team decision-making for more appropriate care to happen.

There are a lot of support teams out there to help people go home from hospital more quickly (saving money) but much less it seems for teams to keep people at home in the first place. What's happened to Hospital at Home teams, they do still seem to exist but are they shrinking?

I also think it's a bloody big decision to say 'I don't want any more treatment of X type and therefore I am willing to die, possibly of dehydration, or of uncontrolled infection and fever, without going to hospital'. In reality, that situation may not be nearly as scary as it sounds, esp if supported by proper home services, but it DOES sound scary. It's also a huge decision to make on behalf of someone who lacks capacity, as any consultant who makes those decisions every day, will know.

Joan- that's why you have to start a long way back with advance care planning. I advise every elderly person I meet well or unwell to think what they would like and ideally do a health and welfare and financial power of attorney and discuss their wishes with their family.

Thanks for posting those, Moondog. Interesting. I haven't read them all before.

mamadoc I think you have hit the nail on the head there. If I or a member of the family had a critical condition - cancer, severe heart condition, brain damage, etc., I agree they would be better off in the NHS. That, however, does not give the NHS the right to treat people like, and I'm sorry I can't think of a better way of saying it, shit for the more routine things.

Breast screening - no I won't go to the local hospital to be herded like cattle and shouted out by a radiographer chewing gum and told off because I went the wrong way.

ENT clinic with the DC when they were babies - no I won't be told by an arrogant consultant whose secretary told me she couldn't possibly see me later in the afternoon because her own children are at very good schools and gifted and she has to be there for their music commitments. The same consultant told me that the HV was right and because my DC had well developed speech they don't need grommets because their development wasn't being affected and they were likely to achieve average expectations it wasn't something that was a priority. My DC aren't average and I won't sit and see them in chronic pain with 11 ear infections in 12 months or less because without intervention they will reach average expectations. Their lives were made significantly better once grommets were inserted and so was mine - I couldn't have held down a full time job on zero sleep because for five months my dd could only sleep sitting upright in my arms due to the pain. How dare the system begin to assume that my children might not be as "gifted" as a hospital consultants and therefore not require optimum care.

I do not expect to see 37 health care professionals in one pregnancy and post natal period - one of whom missed the fact that DS had the cord wrapped tightly round his neck and nearly died. The monitor was registering difficulties, the midwife told us it was just the belt slipping. After the third time had my husband not marched out of the room and yelled I want a doctor in here right now - that baby would have died. He was 19 on Christmas day. Within seconds a crash team arrived and it took several minutes to resuscitate him.

I do not expect to attend a paeds clinic and be told by a registrar "you all turn up late and now you all arrive at once". I do not expect to be told by a health visitor "breast feeding mothers put their babies first, bottle feeding mothers put themselves first". That led me to struggle for 8 weeks through infective mastitis, eventually developing a breast abscess and even then not being prepared to give up because of that comment.

I do not expect my GP to offer me 20 to 30 minute health screening appointments with the nurse to weigh and measure me and look for conditions I don't have but not to provide a blood testing service for the underlying chronic medical condition I don't chose to have. I can weight and measure myself - I can't take my own blood.

I'm sure I can think of more - just in my day to day experiences and I'm afraid for the normal, non life threatening stuff, for which we all pay the level of service and the standards are just not good enough.

I'm not prepared to pay more taxes for those services - I'm not prepared to sit and nod and smile whilst people talk crap and are rude to me and generally have zero respect for my time or any intention of providing an acceptable standard of care in relation to the basics.

It is just not good enough so for all of that sort of stuff we have private health insurance and it's funny how, although I'm sure the people working in that private service are actually no better qualified or trained than in the NHS they smile, they say good morning, appointments run to time and if they don't there is adequate communication, they are polite, they are professionally dressed and they look clean. It is those sort of little things that are very important to very many people and those sorts of little things that the NHS has totally lost sight of. The reason the private sector ensures its staff conduct themselves properly and decently is because, in my opinion, it knows that it will not be paid if they don't.

Leverette, thank you for that link. Wish I'd read it before, am not good enough at evidence-based practice but I suppose at least I've seen it now.

'actively seeking uncomfortable and challenging information from patients and staff, rather than relying solely on formal data collection against narrow performance indicators that may not give a fully rounded picture of quality of care'

Amen to that. And no conversations like the one I saw the other month taking place on the open ward as a patient was in a wheelchair attempting to escape leave hospital. 'My love' 'this is the Friends and Family Survey. I said the FRIENDS AND FAMILY SURVEY. CAN YOU ANSWER THIS QUESTION FOR US? WOULD YOU RECOMMEND THIS WARD? YOU WOULD? OH THANK YOU MY LOVE'

Great link to that bmj report, leverette. But their table on creating positive cultures is all very well but says nothing about patients! Surely listening to and learning from patients is at the heart of good healthcare?

grateful and touched by all the responses, I have read all of them and have found them all extremely helpful. Those from the medically trained among you explaining the clinical reasoning and what should have happened are immensely welcome and thanks for correcting me about intubation - what I meant was feeding tube, but am more clued up now as a result of reading this thread.

An update on what we've found out: After visiting today the staff on shift were the ones who had made the decision for the NBM and the nurse who'd decided that said it was documented in the notes. It was not, and this was confirmed by staff on the ward she's now been transferred to. The nurse said she'd asked a doctor to sort out an IV - again no evidence of this in the notes, she doesn't know which doctor it was, no audit trail. She had put nothing in place to ensure it was done. The staff on the shift when we arrived mentioned nothing about an IV and had been quite happy to leave on her a NBM till the SALT arrived. As Joanofarchitrave points out, this is a nonsense in any case as she is on oral antibiotics! Clearly either the IV wasn't ordered or there's been a fuck up in getting it arranged that no one has bothered to sort out.

In any case this morning she'd been transferred to the stroke unit where they seem much more equipped to deal with her needs so she's been eating and looks much more comfortable.

In the meantime we've gathered all the information we can and plan to put a complaint to the head of nursing at the hospital, copying our MP and PALs (as alluded to on this thread by some of you,I don't have a great deal of faith that they will do anything other tthan act as a buffer to prevent our complaint from bother the hospital administrators.)

Again thank you for sharing your advice and experiences.

ps sorry for my spelling and grammar, my keyboard is fairly knackered and I can't delete mistakes!

Glad to see you have taken it up and are getting some answers and also that your mum is on the stroke unit. I expect she will get much better care there than on the general ward.

I do think it is worth putting the complaint through PALS even if you don't have faith in them partly because it leaves a paper trail. If the hospital see that this particular ward or staff member is generating a lot of complaints they will take action.

Hope you didn't mind your thread being hijacked for wider debate.

As a nurse , the thing that i can never get my head around in my trust , is that during the daylight 12 hours of a day , you need 4 qualified staff nurses and at least 2 auxillary staff , plus a nutrional assistant and 1 domestic . During the nightime 12 hours of a day , you need 2 qualified staff and 1 auxillary to look after the same 30 patients . Oddly this doesn't seem to work very well .

I would always say complain if you are not happy with the service you have received , always . Sometimes this can be dealt with at ward level , if it is something that the ward manager can address , sometimes it needs to be taken higher and higher still . I never take a complaint as a personal slight , i am not perfect , i see it as feedback that can help me do my job better .

OP, that sounds dreadful!

I have, unfortunately, been in hospital several times. What astonishes me is how wide the differential in care standards can be, it's shocking. I've had some outstanding care - in resus and ICU especially - and there's no doubt that care has saved my life. In fact, with only one exception in the course of over 10 admissions, all the nurses who have cared for me in ICU have been amazing - I'm not an easy patient to care for when recovering from anaphylactic shock (I'm prone to panicking when I'm still intubated and the meds really mess with me so I feel sorry for the nurse who have to deal with the fall out). It takes a special kind of person to be able to cut through the pain, panic and disorientation and make a person feel safe.

On the other hand I've had one nurse argue with me about whether or not lasagna would be detrimental to the health of someone recovering from cheese induced anaphylactic shock, whilst another told me to 'grow up' when I came round in ICU and was panicking because I didn't know where I was or what was happening (the exception to the outstanding nurses in ICU rule)...go figure.

I would always complain about poor care because I think it sends a message of support to the really good nurses and doctors out there, I'm equally quick to write letters of thanks highlighting excellent care - in both cases I name the staff in question where ever possible.

X-post OP, I'm very glad your mum is more comfortable and in a more suitable ward.

nearthewindmill thank you for sharing.

Very pleased to hear your mum is now on the stroke unit and being looked after.

That nurse is extremely foolish. If anything had happened to your mum she can account for none of her actions and if she has ever read the code of conduct she will know that a registered nurse is also responsible for her omissions. Please complain and name names when you do, that nurse is potentially dangerous and needs a period of supervised practice.