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.

Another problem with current culture is that often those who become ward managers, matrons etc are lazy glory hunters who want the kudos and will always side with management. Time and again I have seen crap nurses rise through the ranks. Doctors remain doctors when they become consultants but very rarely do matrons (in the trusts I've worked in) do any hands on nursing - well, it's hard in a skirt suit isn't it? They have the option of uniform but I knew only one who wore it, she was excellent but left when the pressure to place management wishes above patient care became too much.

Also nursing students rarely get the input they should, there are no longer weekly teachings taken by the nurses, which also helped staff develop mentors hip and teaching skills. A lot of the students who would have failed back when I trained are passing placements because staff don't have the time to spend with them to pick up on issues. My friend just failed a third year who was so appalling she shouldn't have got through her first placement without serious support.

I agree with blobby and mamadoc

My mother has now filled in countless incident forms - for them to be ignored. The management culture (of nursing at least) is rotten to the core. And those who would have to to change it would have to start by recognising their own failings rather than acting to cover them up. It's not going to happen until someone high up has the balls to stand up and take responsibility - rather than blaming front line nurses.

A friend of mine used to work for PALS. She told me that if you actually want anything done, don't complain to PALS, whose job it is to smooth things over and to prevent complaints blowing up.

She said complain direct to the hospital managers.

(I guess you may be best doing both and threatening to go to the press .)

Blobby you sound exactly like my mum.

Management should be listening to experienced nurses rather than trying to shut them up/bully them out of the profession.

I have to agree with mamadoc (I am also a doctor)- it may well have been appropriate to make your mother nil by mouth (even though she is a diabetic) if they were concerned about an unsafe swallow (with consequent risk of aspiration). Regarding your concern that she should have been intubated, I can assure you she should not have been intubated unless she was needing assistance with breathing (i.e. ventilation). If she was made nil by mouth, she should have had a drip for maintenance fluids. As a Dr, I would be wary of making an assessment- unless it was a stroke physician, as our training in this is minimal. If in doubt, I would have made her NBM and awaited formal SALT assessment. Our hospital has an on-call SALT at weekends/Public holidays (not overnight), although I know not every hospital has this resource.

Is your DM an insulin dependent diabetic? If so, in these situations they should have used a "sliding scale" which is a way of controlling blood sugars using IV insulin and dextrose fluids. If she isn't a insulin dependent they should have been keeping a close eye on her blood sugars, but would not start a sliding scale, as she is at much lower risk of complications from being NBM.

You should have been made aware of the decision to make her NBM and why. However, from experience I can tell you that this can be tricky to do in a timely fashion- family tend to come in the evenings, or afternoons at the weekends, when it is the on-call team who are there. They will not have made the decisions that day regarding your relative- and more likely than not, will not even be based on your ward. They will be able to read the notes to find out the plan made by the day team/recent results etc, but will probably not have an intimate knowledge of your relative's condition- or know what decisions have or haven't been discussed with relatives, until asked to speak with you by our nursing colleagues. Even when this happens, if we have unwell patients to assess, then speaking with relatives will have a low priority- and they may have to wait some time.

To explain this- at my hospital (fairly large, teaching hospital), in the evening (between 5 and 9) and at weekends there is 1 junior doctor for every 3 medical/surgical wards (excluding medical/surgical admissions), 1 for the orthopaedic wards. There are 2 senior medical and surgical registrars for the wards and 1 ortho registrar (also on-call anaestetic reg, and various doctors for other specialties such as paeds/obs and gynae). The on-call teams will do 13 hour shifts. So the junior doctor/registrar will be on their "home" ward 8am-5pm and then cover that ward and another 2 wards in the evenings. At the weekends, they will cover all 3 wards 8am-9pm.

So you see, while I completely understand that you would have wanted to be told immediately about this decision and why it was deemed necessary, I can see from the other side why it didn't happen. It's not because staff can't be bothered, it's that we only have 2 hands and can only be in 1 place at a time. That doesn't excuse the lack of fluids given, nor does it mean poor care is acceptable. I'm not convinced that the original decision was poor clinical decision-making, the problem is not making appropriate measures were taken subsequently and poor communication with you.

If I were you, I would complain about her not having a drip if made nil by mouth (and any other concerns). The fact that staff are encouraging you to complain makes me think they are also fed up with the way things are.

Thank you jimjams, your mum sounds great.

Senior nursing positions are often unattractive to nurses as they don't involve enough nursing, does that make sense? I saw an old tutor of mine recently who said he was disappointed I hadn't progressed beyond staff nurse, but also that he wasn't surprised as I would probably 'piss management right off and they'd have to assassinate you' :)

As an example of how far management will go. And I swear this is true.

My mum and colleagues raised concerns about patient safety.

Two of them then were put on disciplinary procedures after the person they complained about lied about them/things they had done. This person was caught lying. She had lied in writing and this was exposed and proved to be a lie. She was promoted I kid you not. Although slightly amusingly the team she is now in charge of was in the local rag recently for problems and "low staff morale". Wonder why that is.

Meanwhile the concerns about patient safety still have not been addressed and nurses are still being bullied in that team. There is no interest from management in sorting it out, only in covering it up. They are spineless and rotten and I don't know how they sleep at night.

Going to the papers may be the only way. I think my mum would like to when she retires although I think the whole affair was too complicated for the papers - unless a patient does end up dying (my mum and colleagues concern). The RCN were acting for both sides. They gave management a full time member of staff and the nurses whose careers were at risk due to lies an unpaid part timer.

Rotten, rotten, rotten.

And the result of that culture is the situation your mum is in. It's not money, it's partly staffing, but it's also culture.

My mum has moved groups now to somewhere with a non-psychopathic matron and she can concentrate on nursing again, and the team works as well as it can.

Last point from me i swear.

I do think nurses have a self image problem. We tend to defer to others (eg medics) when we should behave more as equals and are often reluctant to speak up, I am guilty of this sometimes. We need to give ourselves more credit as trained professionals and have confidence in our opinions as well as getting on with the job. Some of my colleagues frustrate me as they don't feel professional and they should.

My mum says the same blobby -about the people who get promoted. And that's part of the problem - they won't stand up to management and say when something is dangerous. They bully their staff instead.

My mum has had quite a few nurses approach her and tell her that they admire her for standing up and speaking out, and they agree with her, but they can't do it themselves because they need their job (my mum is near retirement and can financially afford to lose her job although she decided early on that she wasn't going to be bullied into early retirement by management).

The NHS needs to listen to staff on the front line and allow them to speak out.

I'm sorry OP. My grandmother had a similar experience earlier this year. The family went in and fed her every day. It took weeks to get a doctor to tell us what was wrong or what they were treating her for. At one poin they tried to send her home with no effective pain relief when in fact she was in the advanced stages of cancer and needed morphine patches.

The whole experience was appalling.

I wouldn't go directly to the top as generally you will be redirected through the appropriate complaints procedure. Be prepared for the long haul with this however. Treat it like a marathon-slow and steady.
I am a veteran complainer due to several dreadful experiences (and I do not expect a gold star service from an over stretched public service-merely a basic standard of care that has already been agreed on.)

I was in the unfortunate position of having to make some very serious complaints about the part of the NHS I worked for. I underwent unspeakable intimidation and harassment (including demands that I write letters of apology to people who were incompetent liars and copy them in to myriad other professionals to exonerate said liars).

I fortunately had the union behind me who urged me to follow the whistle blowing procedure and I stood my ground, but it wiped out a good six months of my life, and every spare minute was spent writing letters, recording events and researching the issues raised. I have a lever arch file with about 500 pages in it as a result.

What worked for me was

1. recording everything factually and unemotionally
2. researching every aspect of the issue I was complaining about
3. Ccing every letter I wrote in to about 10 other people to shame and expose those who were not doing their job.

It worked.

worried3 I think the OP jsut got confused over terminology when referring to intubating - probably because she isn't a clinician.

In response to your comment about families coming at weekends and evenings - that's probably because they have jobs and ate contractually obliged to go to work wjen their relative's are not critical and when they are ib hospital and receiving care. I think this is a keuy reason for some of the problems in the NHS - thje complete failure to appreciate that patients and their famiies have work responsibilities. Life in the rivate sector is tough - if you aren't thjere you might not be paid, if your are unreliable you are put on capability. It isn't like the NHS where staff literally seem to be able to get away with blue murder. (Metaphorical). I say that because in the real world if employees cock up, are rude to customers, don't do as asked, don't turn in - they get sacked. That's why they visit around their jonbs.

Really hope you get some redress OP. I remember a friend starting her nurse training (10yrs ago) & the first thing she said was 'don't get ill'

What irks me most is that it's all down to money - and yet those NY fireworks in London mean 3 NHS wards will have to close & VAT will go up to 50% to pay for it.
Slightly tongue in cheek there, but you get my drift...

I don't think it is down to money at all. Labour shovelled it into the NHS and Education and where did it get us? Not very far. There is nothing wrong with a target driven culture either but its interpretation by suits is the issue as well as the raft of managers, busy telling everyone what to do. Thus issues such as waiting times means that, in my experience, once people are about to 'breach' all hell breaks loose and they are 'processed'. Once that happens, the clock effectively resets and the suits breathe easy.
It means that someone close to 'breaching' is rushed through the system, even if what they have wrong with them is minor. Someone with far more serious issues can be left languishing because they are not going to 'breach'.

It is all nauseating Big Brother-esque shenanigans and the kneejerk reaction is to supress and smother concerns raised. God forbid that anyone should expose the fact that the Emperor is naked! I used to live in the former USSR and how we chortled about old style Soviet propaganda about tractor production and harvest yields. Yet this is the essence of the modern day public service in the UK.

The NHS has lost the plot. It needs to be completely reformed so patients become the number one priority. Not nurses sitting at computers and patients going hungry and uncared for.

You can also complain direct to department of health.

3 separate people recently whistle blew about standards on a specific ward at a specific hospital. As a direct result of only three letters Jeremy Hunt sent in an independent inspection team. I'm not a fan of what the Tories have done to the nhs but I was pleasantly surprised by that.

Complain in writing, send the letter to the ward manager, the matron and PALS.

Being put NBM does not equate to being put on the LCP, it is often necessary to temporarily (or permanently) put patients NBM due to an unsafe swallow. In this case it is likely due to your mum holding food in her mouth, however, when deciding to put somebody NBM, it is obviously important to look into how you are going to hydrate them and IV fluids are the most likely way to do this. She could also be NG (tube) fed whilst awaiting SLT.

The nurse who said 'nobody dies...' is wrong.

People can die without drinking for 48 hours

and dehydration is not pleasant, it is important to ensure patients' are comfortable - hydration is an important part of that!!

This kind of thing makes me really angry, it is their job to care for your mum, to ensure she is safe and comfortable. You and she put your trust in them. I hope you get some answers and an improvement in care.

Definitely definitely complain; it's the only way things change, unfortunately.

no one ever died from not eating for 48 hours

She really said this? Concrete grounds for a complaint for a start! So that means everyone who is admitted to hospital could potentially be starved for 48 hours on this nurse's watch? Including a vulnerable elderly lady with a chest infection who may well deteriorate significantly if starved unnecessarily. Time of year and day of the week should not impact a patient's outcome as per the Times newspaper campaign for 24 hour/7 days a week NHS care.

Shocking OP and I hope this is taken very seriously by the hospital.

Given the experience my grandmother who had days to live with cancer was subjected to, I would be very tempted to record/film anything untoward and then send that recording viral. Public naming and shaming with footage/evidence that cannot be denied seems to be the only way to force change. Horrendous. The PP who mentioned the woman on the post natal ward who was yelled at by staff - imagine if that encounter has been filmed and then picked up on by the NCT etc. That person wouldn't have worked again. Turning to the media should not have to be used as a threat or even followed through but in so many cases raised here, seems like the only way.

Yes to breaches being a huge problem moondog in A&E at least. If you make life difficult for A&E depts to go over a 4 (is it 4?) hour wait then you find systems are set up to avoid breaches (pretend wards on a corridor for example) & clinical need comes second to avoiding breaching a waiting time target.

Moondog - your approach was the same as my mothers. Unfortunately it didn't work - but probably because the RCN was also representing the other side & they were in it up to their necks in the end as well.

(digression from the OP bud relevant to the culture she's most likely dealing with)

Imho gained from the trust I work in is that 'management' is made up of clinicians tbh. There's no balance. My trust is forever bleating on about working as a business - but this is coming from people who have no experience/qualifications/talent for a business setting. Honestly it's embarrassing to hear them talk sometimes.

The original idea of getting clinicians into management roles was to advocate and ensure clinical excellence. What's happened - especially with the current changes - is you have a load of managers from Band 8 up (think modern matrons upwards) who run around like headless chickens guided by statistics and targets without ever considering the reasoning behind a figure. No word of a lie, I know at least three modern matrons who've not had contact with an actual patient in any kind of setting for over 3 years.

It's not a criticism of them personally, more of an observation that no other 'business' in the world loses such complete and total touch with what their product is. These are people who are trained medics, not talented Alan Sugars - what is being achieved bears no relation what so ever to a successful private company.

Unfortunately bad leadership leads to a toxic unsafe environment where people ignore prevention because they're so busy firefighting.

Sadly, I don't even believe now that it's an attempt to run the NHS down to the ground and ease in privatisation, I think it's pure ego and stupidity from the government health minister down.

Nearthewindmill- I'm not denying that there are very valid reasons why relatives are only in during the evenings/at weekends- the most obvious being they are working. Also, visiting hours are afternoons and evenings anyway.

Nor have I suggested relatives miss work to speak to medical staff. That would be ridiculous. I don't expect that and wouldn't ask a relative to come in while they are working. I'm trying to explain why communicating decisions is sometimes not as prompt as either the patient's relatives or the healthcare team would like.

I have stayed later than rota'd to speak to family members, but I also have family commitments and a life outside work, and that means that staying until relatives arrive is not always possible. I frequently leave work late because the clinical workload exceeds the staffing on a frequent basis. If relatives want to speak to the consultant directly responsible for the patients care, they may have to make an appointment with them- where possible, I try to accommodate early evenings, but as I said above, this is not always possible because I may be busy with other patients if I'm on-call or because I have family commitments. I will offer an appointment with the senior reg if they are available in the evenings and I'm not. I also usually ask families to appoint one or two people who will be our "principle contact"- they can then disseminate the information around the family/friends- i can guarantee you I will not be available to speak individually to every family member.

I have been the on-call doctor, only able to give information gleaned from the notes, having asked families to wait a long time while I deal with the sick patients before having time to read the notes and have a discussion. They are frustrated, angry at having to wait to see a doctor and even more irritated when they realise I don't have an intimate knowledge of their relatives condition or the plan. Unless the NHS employs a lot more doctors (and other staff too), the status quo will not change.

The NHS is far from perfect. Most of the staff do the best we can within the resources we have. The fact remains that most wards are not staffed to deal with elderly patients, many of whom suffer from dementia and/or mobility problems. It doesn't make it ok, and aside from the odd lazy/uncaring member of staff, we don't think it's good enough either. We do raise our concerns- but at the moment there is just not the resource to do everything we need to do to get the service we want.

If patients or their relatives are unhappy with the care they received, they are right to complain.