Shortly after I arrive on the ward the husband of the woman in the bed opposite my Mothers bed, who I mentioned yesterday, arrives to visit his wife – I have just seen her wheeled off somewhere in her bed for a test of some sort. Obviously I don’t know the wheres and whats. He stands where the bed was, in the space, and looks around, a bit lost – missing beds always seem sinister in hospitals. Not a single person approaches him with information although he is clearly visible and staff walk past. I say to him that I think his wife has gone for some tests – the doctor sitting at the table interrupts me to say she hasn’t, but is having an NG tube fitted – I point out that I am talking about this guys wife, and not my Mother who is behind the curtains, indeed having an NG tube fitted. I have noticed this – that the staff fell the need to correct us when they think we have transgressed, whether we like it or not and whether they understand or not. He seizes the moment and says that he still does not have any information about his wife and can she (this doctor) help. She says, of course, that she does not usually work on this ward and is just helping out. He and I look at each other. He is not having any of this – he says he has hardly slept in three days, that they arrived in the hospital on Sunday and it is now Wednesday and he has yet to speak properly to anyone, that despite telling staff when she first arrived that she was diabetic she was left for 12 hours without food and then when she started slipping into a coma they didn’t understand it. Doctor says that she cannot comment on that, and if he just asks the nurses they will talk to him. Again he and I look at each other, and I have to speak out – this guy is drowning. I tell the doctor, kindly, that he has tried asking any number of people including nurses and doctors, but has clearly not had any information. Doctor says (I have been waiting for this) that they are short of staff, they are very busy, she doesn’t work there normally, they were short of doctors over the bank holiday period, and they are stretched. I ask her: is that supposed to make us feel better? She looks perplexed.
You couldn’t make this up.
After 9 days of living with Stroke I meet the consultants. Plural. There is the one I am going to call Kind Consultant, and the other, Ms Consultant. They tell me that they are meeting me together so that they can explain their medical findings and have each made an independent medical assessment. I know that even if that is true, it is actually because I am “Difficult” and they want to witness for each other that they are managing me in pairs. Although I have always, and very carefully, been entirely courteous and polite in my dealings with staff here, asking simple questions and reflecting back – it is merely the fact that I have questioned their practice that has made me Difficult. They ask me if I feel pressured because there are two of them – this is, in fact, rather funny, as I do not often succumb to pressures, in fact quite the reverse – but they cannot be expected to know me yet as we have only just met. I wonder, briefly, about managing them in pairs, bringing someone with me as a witness next time. I picture this exponentially developing, with eventually whole rooms full of witnesses on either side of the table still unable to hear each other properly. It would not be any more mad than where we are now.
Kind Consultant gives me an excellent picture of my Mothers journey so far, calmly and honestly, with medical details spelled out without being patronising. I value that. Ms Consultant (who is a Type with which I am very familiar) cannot contain herself and routinely butts in to offer her own, clearly highly prized, opinion. She makes several references to GMC guidelines and the Liverpool scale – a sure sign, in my experience, that justification is the aim rather than information sharing: the over use of “guidelines” is almost always a way of demonstrating compliance without the tedious need for empathy or common sense, or having to actually listen. However – my aim is to do what I can to do the right thing by my Mother, so I suck it up and tolerate her babbling. I am rather hoping she will belt up and let Kind Consultant do a bit more talking. But she does her thing of butting in, talking over him and over me periodically before asking, apparently earnestly, how I am feeling. I ask her to guess.
My Mother is dying, the only important thing now is to enable that to happen calmly, comfortably and in a dignified manner. I request privacy. There is none – she will have to stay out on the brightly lit busy ward which is staffed with nurses most of whom I do not trust, being viewed in her dying. The idea of privacy is dismissed very quickly by Ms Consultant as simply not practical. I have a strong urge to hook her up to a machine that goes bing, in her underwear, with a gag in her mouth and weights on her limbs, and invite as many hospital staff as possible including porters and kitchen staff to come and have a look. It is an appealing idea.
Surely a significant number of people must die here? Surely it must be blindingly clear that there is no dignity in death to be had on an open ward, brightly lit, with people talking and laughing and all the things that happen on an open ward? Surely, given all that, some thought has been given to death in hospital? Well, apparently not. We are expected to line up neatly, gratefully endure the public arena and the bright lights, the insensitive laughter and the lack or space in which to weep, and just accept that all the guff we have learned, talked about and endorsed about dignity in care, dignity in death, the right to privacy – is all hogwash when faced with the NHS machine.
Kind consultant is kind to me and talks about dignity in death and it is the only time I nearly lose control, which I have been making every effort to maintain, and I can feel my face crumbling, so I force my toes into the ends of my shoes until they hurt and that stops it. I need to be in control, cannot take my eye off the ball – I simply do not trust these people, in this system, in this organisation. We agree on a plan of care (which is a word that has lost its meaning recently) and I am comfortable with what we have decided, but am not confident they will implement it effectively, given what I have seen in this institution.
There are two things that end the day: 1) Ms Consultant makes a point of telling me, in front of the ward, that there are too many of us next to my Mothers bed and only 2 visitors at a time are allowed. I am too distressed to notice immediately, but when she moves (she takes up a fair amount of room…) I notice that the patient in the bed opposite us also has four people visiting and has not been told otherwise. 2) Later, Kind nurse T says he will try to enable my Mother to have a single room and we will have privacy in which to grieve and share and she will have some dignity at last. There are a few things that need to happen first (one of the guys in one of the rooms is going home in a day and we can have his room then) but it is at least being offered, and it is clear that there are some people willing to go the extra mile, who “get it”. God Bless you Kind Nurse T. Day 10 will appear tomorrow.
And so it goes on…….
The following day I was on the ward with my Mother, who is sadly still very unwell, when a nurse appeared clutching a file. She told the nurse who was working at this end that she had brought Mrs X up and wanted to give her the file. Nursey on our ward said she could not take her as she hadn’t been informed. There was a loud conversation about whether or not this woman had or had not had a stroke, the shortage of staff and how busy there were (of course) and that the ward knew nothing about her. There was clearly a power struggle going on and it was not held in hushed tones. I was genuinely shocked when I realised that, outside the open doors, in the corridor and within earshot, were the woman herself on a bed and her husband, who looked agonised. There was no-one with them.
After this conversation petered out the womans bed was brought in – I noticed that no-one said anything to the couple, just wheeled the bed in. There was no locker or table and no-one tried to address this. This poor man just stood there, arms hanging by his side, clearly distressed and equally clearly not knowing what to do. Not a single nurse spoke to him. He was offered a cup of tea (hallelujah!) by a domestic, but had nowhere to put it. He asked a passing nurse (I don’t know if she was at this end or not), timidly “what’s wrong with my wife”. She turned to leave and said on her way through the door “we won’t know until tomorrow”. That was it. That was the level of engagement, interaction, support, whatever you want to call it. And there was nothing I could do except smile and offer that familiar sort of “in the trenches” solidarity that visitors often strike up, often wordlessly. I had no information for him, had only a bit of kindness to offer. Which was considerably more than the people with “care” in their job description had done so far, in my line of sight. My Kind Nurses were not working that evening
The next afternoon he is still there. He said to me “I still don’t know what is wrong with my wife. Is that a doctor? [pointing at a man striding through the ward]” This was late afternoon the following day. No one had introduced themselves, no one had explained what was happening, he did not even know who the doctors were. Bear in mind I am now forever labelled as a “problem” for this staff group: within a couple of minutes of me starting to talk to him within earshot of the nurses and doctors and me asking if he knew anything yet, miraculously a nurse and a doctor decided to speak with him. Hooray.
Now for PALS. This stands for Patient Advice and Liaison Service. I had a phone call from one of their representatives about the official complaint I have made which references this blog. The conversation can be summarised as follows:
- PALS has been amalgamated with the NHS complaints service
- My complaint is too narrative (in the form of a blog) and I need to summarise it
- The complaint is too long for them to read as they do not have enough time
- I should speak to the ward staff if I have clinical concerns as PALS cannot help because they are not clinical.
I have attached, below, the response I sent back:
“Thank you for your telephone call yesterday. As I have not yet had the confirmation email from you that we discussed I am responding to you myself.
After a period of reflection, I find that I am gravely insulted by the organisational response to my complaint. Your own contribution, which centred on informing me that you were unable to help with clinical matters and that I should speak to ward staff (as if I had not done so) and indicating that my complaint was incorrectly formatted and asking me to re-do it was typical of the level of competence and sensitivity I have already encountered across the services. You went so far as to state that there was a time factor and it would take the people investigating too long to read my blog. That alone leaves me speechless.
I have submitted my complaint, which is ongoing and will increase with each blog, the next one of which will go out this evening. It is not my job to do the work for the organisation – I expect this to be investigated and I expect a respectful and proper response, whatever the format in which I have submitted. If an articulate and thorough narrative is not sufficient I wonder how others less familiar with the complaints process and health organisations would fare? I will not, therefore, be re-formatting or summarising – that is your job.
You have indicated that PALS and the organisations complaints response service are amalgamated. May I ask if there is not a conflict of interest? Certainly when we spoke I found no support for patient care or patients rights but considerable emphasis on the organisations rights and requirements.
I have to add: if someone had submitted a damning, articulate and far reaching complaint such as this about one of my services I would have responded in person, have had the courtesy to have read the article, and would be on the wards very quickly to have a proper look, however senior or otherwise my position in the organisation. I will also add that absolutely nothing that I have seen or heard has restored any confidence at all in the services ability to effectively meet my Mothers needs, which is, after all, the point”.
And that is the point. This is not a nit-picking exercise, I have better things to do. I did not intend to be troublesome, had no intention of complaining, would probably sacrifice a limb rather than be doing this. My bottom line is ensuring that my Mother has the right care delivered with kindness and that I am in the loop. But having been faced, daily, with a string of casual neglect, unkindness and sheer incompetence how can I ignore it not only for my own Mother but also for the next person to find? The issues exposed here are major in terms of practice, but manageable if managed effectively. It is not about money, it is about leadership, effective management and zero tolerance of poor practice underpinned by the balls to manage it.
My Mother has not yet regained consciousness but her breathing is not as laboured and she sounds less bubbly. Hope is always there and the drive to support her is high. Energy is flagging a little though……….
I told you I would let you know how the conversation about Mental Capacity went: I spoke with the doctor, always courteous, always with a simple enquiry. He appeared to take some advice from a woman who had interrupted me to ask if she could help but who failed to introduce herself to me – I believe she is one of the consultants, but I still do not really know although she was on the ward for the next couple of hours, as was I. As a professional I have been involved in Mental Capacity Best Interests Meetings before, and have never thought that doctors were somehow absolved from this level of accountability because they have a medical degree. Nevertheless, doctor and Kind Nurse were adamant that being a medical matter it was their decision, and the implication is that I was involved as a courtesy and nothing more, and as I agreed with the outcome that was the end of it. I disagree and will be talking to the hospital about it when it finally wakes up again after the “holiday”.
I asked for some assurances that the ward would be fully staffed sufficient to meet my Mothers needs and that of the other patients. What I received was an acknowledgment that they are short of staff (I know….I know….) and would do their best. Given the evidence so far I have grave doubts about what level their best will achieve……..
I notice that the charts are still not being used effectively. I am promised that they will be.
I receive assurances that I will be called if there are any changes and am told by Kind Nurse that what I am asking for (contact if needed, charts to be used effectively, Mother to be nursed properly) are things they “would do anyway”. I point out, yet again, that as they had not “happened anyway” on our first day I have no confidence that they will indeed “happen”.
Mother sounds even better in her chest but has still not regained consciousness. I am tired, but to be honest I have been tired for years, so what the Heck!
I notice that the charts which I have asked for and been promised are in the file, but are a little chaotic and are still not being signed by all the nurses. I note that the bowel chart records in the correct place that she has not had a bowel movement but not that she has been given movicol although the medicine chart tells me a different story and Kind Nurse J told me he had given it to her. Kind Nurse#2 (who has been very nice, smiled, not been defensive when asked a polite question and I have heard him talking to my unresponsive Mother when nursing her) confirms that she has had movicol. I note that although I came onto the ward at 10.30 and the nurses turned my Mother after that at around 11.00, the chart has been ticked (but not signed) at 10.00. A small but pertinent indicator of the level of competence, as is the fact that my Mothers name and hospital number, while correct, are in the wrong place on the chart.
I realise that I begin to sound picky. The ward staff are now turning my Mother ( allegedly), she has a ripple mattress, they are at least ticking that she has had mouthcare (and she looks as if she has), they are recording that she has unbroken skin and has had continence care, she is getting her NG feeds and her obs are being recorded. Some nurses actually look at her when they walk past and not just at the monitor, some smile at me – apart from Ward Manager who studiously ignores me, which I understand. But it feels like a pretty constant checking process, and if there are basic failings when I am here to monitor, how can I be sure that when I am not there to monitor things don’t slide? Especially with what I have witnessed. Nothing will ever erase that crushing and heart-pulping afternoon when she lay in her own urine, the staff risking her skin, probably causing her chest infection because she was neglected and lay flat, failing to administer her medication, failing to know who her consultant was, failing to introduce themselves, failing to know where her chest x-ray results were or why she had not yet had her medication, and the blank and careless looks I got from the strangers paid to nurse her who didn’t give a shit but tried to convince me I should sympathise with them because they were hard done by. Nothing I have seen since has eroded that huge lump of No-Confidence that I have in these (possibly quite nice) people who allowed this to happen. I do not believe that they will offer us the proper support, or even that they have the ability to do so. I would love to be wrong.
Kind Nurse#2 follows us up the stairs to the ward so I know he is working this afternoon. I find that another Kind Nurse J has been working the morning. I try to relax.
My Mother has still not regained consciousness. She is a better colour. My insides are like ice.
I find that there are about 5 charts in her file, all for similar things, all filled in differently. For example, there is a bowel chart, and another chart for meds and another for bowels, turns, and mouthcare. They all say different things: The bowel chart says she has not had a bowel movement and is dated 1st Jan. The meds chart says she was given movicol 1st Jan but that is not on the bowel chart in the space for just that; I know she has had a bowel movement yesterday and today because I was there, but the bigger chart is ticked in “no” for bowel movements for today and none is recorded for yesterday. There are few if any signatures so there is reduced accountability and no effective way of monitoring her care or her progress. I also find that the cannula that should have been changed yesterday morning has still not been changed almost 36 hours later and the blood sugar test she should have every morning was not done and is now 9 hours overdue. Her hair is not brushed. I feel despair.
I have to leave after 3 hours but my eldest daughter who works in a nursing home, and her sisters, are staying for a while. She tells me later that the two carers who later turned my Mother (an hour later than both the chart and the Kind Nurse#2 indicated) talked over her all the time and never spoke to her once, their riveting conversation centring on their strong desire not to be there , how tired they were, and how unfair everything at work was. The woman in the opposite bed – a frail and muddled and extremely charming elderly woman – asked for the bedpan and was ignored by both carers until my daughters intervened. I know, from a previous life, how difficult it can be when someone repeats a request, but Honey, that’s your job. Suck it up or leave.
So. There it is. Some ok but more that is awful, no assurance that my Mother will have the care and nursing she needs, no real evidence that – even with a battleaxe daughter of litigious proportions in the ward – anything has really changed or improved. The carers are still a mixed bag of mainly shite with some specks of gold, the ward has failed in epic proportions to take on the suggestions about charts and meds most of which are simple in the extreme and should make NMC sense , there is absolutely no evidence of any communication whatsoever, and despite the nice respectable Matron and Kind Nurses that I like and the teeny episodes of kindness and a Herculean effort to do things properly it is still crap.
Over to you. I will continue to blog, I will continue to seek out positives. Don’t hold your breath.
Day Three in what is becoming known ironically as the Big Mother House
My Mother is very unwell, she remains paralysed and drowsy, has a chest infection – could that be due to her being left lying flat during her first night in hospital? – and is on a brightly lit, noisy and busy ward with considerable footfall past her bed. Her worst nightmare.
When I arrived on the ward yesterday the doctor -not one doctor has yet introduced themselves – introduced himself and said he wanted to discuss resuscitation. The first time he has spoken to me he wants to talk about letting my Mother die. He seems surprised that, as I have only just arrived, I want to check my Mothers charts and see her first. Her charts are not there, so a nurse finds them for me. The chart I had asked for – see yesterdays post – is in the file, but has been used as a tick chart – there is nothing to show who has done (or not done) what, no signatures, no description of intervention, no accountability or audit trail. It is, to nick a Monty Python phrase, a dead chart, deceased, useless, an ex-chart. It is almost exactly what I had asked them to avoid and is a lovely example of an Arse Covering Exercise – one that demonstrates nothing at all except that they want to demonstrate something.
This doctor and the one I refer to as The Kind Nurse (singular) who we met in Emergency and who works on the Stroke Unit take me to a room for privacy: after a while we find an empty room, albeit one that people will continually enter and peer into while we discuss allowing my Mother to die. I suspect, as this has been a challenge, that I would not have been afforded this courtesy if I had not become one of Those Families who appear in the notes under unflattering pseudonyms with the whiff of litigation following them. I believe that my Mothers quality of life would be crap if she failed and had to be re-sussed, and one of her fears was being dependent on others. However, although I am in agreement with a Do Not Resuscitate policy, it occurs to me that we should, in fact, have a Best Interest meeting as this hinges on mental capacity. I am in such internal turmoil that I fail to raise this in the discussion – my primary aim is to ensure that my Mother does not suffer more than necessary. On return home I doubt this, and will raise it the following day on the ward. I will let you know what happens.
I ask the Kind Nurse if we can talk about the nursing my Mother is receiving. He says that he knows I have some issues (so – clearly, time in handover to discuss this, but not to discuss nursing detail or distribute tasks. Curious.) He says the Modern Matron will be in soon and it would be a good opportunity to talk then, when we are all together. Cool – I can wait.
Modern Matron arrives with Kind Nurse. I know her! A lifetime ago I worked in the same hospital in a different role. She is nice! She has good manners and understands stuff and her nursing practice was always superb. But I recall she is weak with staff and not a born leader, I recall the group she had to manage back then and how she failed to control the most assertive ones or manage out the weaker ones. A curates egg, then.
She and Kind Nurse say they understand my issues and want to help. I explain, carefully, that I do not intend to be critical of individuals, unless I have to, or of nurses generally, and my intention is to secure the appropriate nursing care for my Mother, as well as some reassurance and an audit trail for me. Matron tells me (I am getting used to this) that they were short staffed and busy and it was unusual. Given that a bank holiday is not a secret or a surprise I am unclear why it is not possible to have plans B, C, D and E in place – as I demonstrate to people when I am upskilling organisations as part of my business – but I say simply that I understand. And I do – I have been in their position exactly and I fully appreciate the challenges. But I do not care if they are challenged, I care only that they sort it out and nurse my Mother properly. It is not my job to manage their work for them. I explain that in kind and calm terms. Matron seems to think that if she tells me that they are actually routinely 4 or 5 patients over their quota, have increased their workload by 66% by introducing a new Thrombolytic technique, and are running three to four nurses short on each shift, that I will feel reassured and sympathetic. Well, no. If you have been foolish enough to accept too many patients, to offer a new service before making plans and provision for service delivery, and have failed to recruit or marshall sufficient bank and agency staff, that speaks to me about not only your practice but the hospital management. This kind of super-inefficiency puts lives at risk and impacts to a high degree on personal safety. So, no, I do not sympathise. I want nursing action. I feel rotten about it because I like this woman, and this guy – they are nice people. But the fact is they are colluding with abysmal patient care, appalling and unacceptable hospital management, and the risking of all the patients personal safety as well as the registration of their nurses who will be culpable when this is exposed. Which appears to be now.
Matron asks Kind Nurse what charts are in place, as I have said I am not happy with them. He tells her there is now, as I have asked, a chart in place for nursing interventions. Technically true, but a massive and whopping exaggeration. I ask if we can actually show Matron, please. He is irritated (but still kind) and goes to fetch them. Matron recognises what I am talking about and they have a little chat about how to improve the charts. I can see that, unless I create a chart that does what it says on the tin, it isn’t going to happen, but I let them have their chat. Their conclusion is that I am right and the charts will be adapted to make them fit for purpose (and I am left wondering why it hasn’t happened previously….) and they will tinker on the computer with them. There is a minor sub-conversation between them about who is capable, but that is not really resolved. I think it will be me. I am on it in my head already and will bring it in tomorrow. Kind Nurse returns to the (short staffed and busy, I know the form) ward, and we conclude the session with a bit of chat about how our respective kids are, and how tough it is to be a Matron especially when the other Matron is off sick for 12 weeks and she has to suck up the extra work. I wonder how they would fare in the Real World and toy with the idea of inviting them to shadow me, but realise it is a fantasy, and would in any case probably kill them. But bearing that in mind and depending on the outcome of this, I may re-visit the decision……………..
To my great relief I can see that, in practice, my Mother has had some nursing attention – the Blue nurse roundly draws my attention to the fact that Mother is clean and has had her hair brushed and plaited. (Is it that unusual that she needs to trumpet it?) Matron – she is a nice, kind woman after all, and I know that and like her and feel bad about not trusting her – has arranged for a ripple mattress, which should have already been in place frankly, as part of the nursing care of an immobile patient. But I am grateful even if I should not have to be. Disappointingly, later on I have to draw attention to the fact that my Mother needs suction as she is drowning.
That is something that strikes me so forcibly I am almost winded: I am grateful when these people halfway manage to do the jobs for which I pay them. After I have made a quiet, polite, but clearly potentially litigious fuss. And they have my Mothers life in their hands.
It is difficult to believe that an 82 year old woman in day two of a stroke, unconscious, mute and incontinent, could be ignored by a ward full of nursing staff for over 4 hours at least, but, my friend, that is what happened. This blog was intended as a chronicle of the journey of someone who cares about a woman experiencing a stroke: stroke is not talked about enough, the support for people who have had strokes and their circles of support is thin and arbitrary. My intent was to offer support and insight, not to criticise, to have a conversation with you about stroke and its effects. But…..but…..but…..it is hard not to be critical after the experiences we have had within a 48 hour period. I will walk you through it……brace yourself.
Once I had recovered myself from the shock of watching Stroke inhabit my Mother, I did the usual things, bought some new nighties and Simple toiletries, bought the trusty Telegraph to keep me company, packed my sketching things, and set off for the hospital to keep Mother company and get up to speed with her condition. My eldest daughter, who works in a Nursing Home, came with me, and I made sure to take a photograph of Mother with my late Father to reinforce her as a human being with her carers, and plenty of get well cards ditto, which would be displayed on her locker. Arriving in the early afternoon I discovered my Mothers nightie, in which she had arrived at the hospital, soaked in urine and stuffed in one of the drawers in her locker. I recalled the efforts, detailed in my first post, I had expended trying to establish a continence care plan with the nurses the day before………. I checked her charts: the aspirin she had been due at 08.00 had yet to be given by mid-afternoon. She had a chest infection and was on antibiotics – the aspirin was not a luxury. I was concerned, but not yet angry – I understand the pressures on time on a busy ward, and have some sympathy for overworked staff, as you will know from my previous post.
My daughter and I were chatting to my Mother, who slipped in and out of consciousness and did not respond at any point – but we kept up the gentle chat, as you should do. We sat by her bedside, arranged her cabinet drawers, read the papers, chatted with her. After a couple of hours she had had no nursing attention whatsoever – none, nil, nada, zip. It may be difficult to believe that a vulnerable 82 year old stroke patient with a chest infection was effectively ignored by an entire staff of nurses, but that is how it was, and how it stayed. My daughter and I, unable to comprehend the neglect and unable to get the attention of the nurses – when they did appear in the bay, infrequently, they looked distracted and when asked a question replied that they “were not at this end” or “don’t usually work this ward”and shimmied off, and when eventually at a much, much later time I found someone who worked at this end on this ward she was unable to tell me the name of my Mothers consultant or the result of the chest X-Ray she had had that morning and continued to fail to offer any physical nursing – we decided to check Mothers sheets and clothes. We found her continence pad in the wrong place so that it failed to collect any urine passed, which also meant that her sheet was soaked and sticking to her vulnerable skin, for which she had not been turned to relieve pressure. We washed and changed her and her sheets, replacing the pad in the correct place and trying to make her comfortable. We struggled with the electric bed without any assistance from nurses who ambled past and when we asked for a clean sheet we were offered no assistance or support and not asked any questions, and no-one appeared to notice that my Mother was still being neglected by those paid to nurse her.
My daughter and I were in shocked disbelief at the staggering casual neglect. I waited, politely asked to speak to a nurse, waited, asked to speak to a nurse, waited, waited, waited, waited. Eventually, about four hours after we had arrived and during which time my Mother had been entirely and thoroughly neglected by staff, I stalked and held on to a nurse in dark blue, who it appeared was the Ward Manager -I had checked the picture board, as still no-one had yet introduced themselves to me or to my daughter. Courteous and pleasant throughout I asked her why my Mother had had absolutely no nursing attention in the four hours we had been there, and of course we could not know how long she had been neglected prior to that, although the urine soaked sheet might give us a clue. I pointed out, politely, that she would still have been lying immobile and mute in that soggy sheet if my daughter and I had not, in desperation, changed it two hours previously. I asked how I could know if my Mother was turned and washed, had any mouth care as she is nil by mouth, had any continence care or planning, received her medication, and had medical reviews as the only chart in existence, the meds chart, indicated that she was already neglected and had not yet had her 08.00 aspirin and it was now nearly 18.00 and in the four hours we had been there none of those things had taken place. Ward Managers answer was that I should understand that they were short of staff, it was a bank holiday, she shouldn’t even be there herself, it was a busy ward, and that they were very very busy. Still politely, I explained that that was not my problem, and that her job was to manage things so that an 82 year old vulnerable unconscious mute woman received the nursing care that she needed and was not entirely neglected for over four hours at least. I asked why there was no care plan and no charts. Her reply, unbelievably, was that they were not used because they were not a requirement. Quietly, and politely, I pointed out that the evidence seemed to indicate that they were in fact necessary if only to prompt the nurses and assure us that nursing was actually taking place – although given the level of engagement shown so far I am not confident that they would be read anyway.
Just to be clear, as I find it hard even now to comprehend: we were there for over four hours during which time not a single nurse offered my 82 year old vulnerable unconscious mute stroke victim Mother any nursing care whatsoever. No turning to protect the skin, no washing, no pad change, no mouth care, no sheet change, no aspirin which should have been administered at least seven hours earlier, not even any casual checking , no kindness, no words of comfort. There were no charts to record any care that might have been offered so no way for successive nurses, had they chosen to check, to know when care was last given. No-one introduced themselves to the people by the bed who happened to be the daughter and granddaughter of the person they were being paid to nurse and who were still struggling to absorb what had happened and no-one offered any information, comfort, or even an idea of where one could get a cup of tea.
I believe we are in the year 2010. I believe we are told that the NHS is in reasonable shape. I believe nurses think they do a good job, according to their representative bodies who take all opportunities to say how short staffed and undervalued nurses are and how they work hard and deliver. My experience of the past 48 hours tells me that nothing could be further from the truth. I have witnessed the casual abject neglect of a vulnerable elderly woman, been subjected to discourtesy and flannel, and left despairing that any crumb of care or humanity might be left lingering on hospital wards. My daughter pointed out that if she or her colleagues in the private sector behaved in such a way they would be in some deep trouble. I have personally sacked people for less. These people should be ashamed to claim to be nurses, should hang their heads low and reflect deeply on their purpose.
I said earlier in this post that, at that time, I was not angry, just wanted to find out what was happening and extract the best care for my other. Well, I am now angry. Before I left the ward I explained – always courteously – that I expected a chart in place to demonstrate the care given, and that I expected the care to actually be given. Another dark blue uniform clutching a chart destined for my Mothers bedside told me, yet again, that they had been short of staff, very busy, that actually the nurses there were very good. I will say that again: she really did tell me the nurses there were very good. Astonished, I ran by her again the catalogue of neglect I had just witnessed and patiently explained that I had absolutely no confidence that my Mother would be nursed effectively. Given the evidence of our own eyes, nothing she could say would restore that confidence. After I had managed to pin down the dark blue nurse, miraculously two nurses did emerge to offer some basic but quick care to my Mother, changing sheets and using a suction machine for her – if I had not collared the blue nurse I am absolutely certain this would not have happened.
I cannot believe that my experience of the last 48 hours is unusual or unique – the evidence so far points to it being all too common and all too accepted – none of the nurses appeared surprised by or ashamed of the neglect, it did not seem to impact at all. I will continue to post. Let’s hope next time I have something more positive to bring to you. My fears and shame about leaving my Mother with strangers was appallingly accurate. Who do we trust if we cannot even trust people with the word “care” in their job description?
You see, even before you have met her my Mother has become The NHS Stroke Patient. As soon as she began to shrink in front of my eyes while I was visiting her in her flat, as soon as that stroke started to eat away at her Self, as soon as I made that decision to call for the ambulance……..as soon as that, she became a Stroke Patient. She lost the Jean part of her and a Stroke Patient rose up in Jeans place, in Mothers place. My Mother stared at me with malevolence until I realised it was the Stroke Patient and she could not see me. The paramedics made decisions around us, which hospital to go to, which tests to do; the nurses decided what to tell me and what not to tell me on arrival; the doctors decided the urgency; the scanners decided on the batting order of patients. She lay there sightlessly, I sat there wordlessly, helplessly.
As a bit of background, I am a Health and Social Care commissioner and director, not a doctor but one who commissions, develops, manages, directs, healthcare and social support services in the private, public and third sectors. I am used to negotiating robustly with skilled professionals; telling doctors, surgeons, lead nurses, practice managers, union reps, agencies, all kinds, what to do and how much they will get for it. Practised at assessing complex medical and administrative information, breaking down budgets, breaking and sealing deals, cutting through crap to the real issues and making the best use of them. And I sat there, watching my Mother shrink away, feeling like a child in grown up clothing (what the Hell did I need a handbag for, I only need sweets and a hand to hold….), waiting to be told what to do.
Three years ago my Father died from the effects of a stroke in the most undignified and inhumane circumstances found in developed society and I took on Wexford General Hospital with the treasured help of the local media, for which I am eternally grateful. I did not win – it is still crap and the point was to make things better – but the fight was a just one. It is three and a half years since, and in a different but similar country, and things do not seem to have changed much.
So: we arrive at Emergency. The staff there are the epitome of kind: informative, gentle, open, honest, efficient, caring and despite being horribly busy managing not to appear rushed when describing the situation to someone in shock. The same person returns to the bedside when possible, asks if I am ready to talk, offers information in manageable bites but without patronisingly baby-talking me through it, and smiles at me. I already know his name because he has introduced himself not only to me, but crucially also to my unconscious Mother. These people are heroes. I find out that this guy – a real gentleman – also works on the stroke unit. I thank God.
We get to the Clinical Decisions Unit: we lie and sit there for an age without information. A nurse eventually strides up to the monitor ignoring my Mother and myself, reads a few stats (I have already checked), makes a few notes and walks away. She has not looked at either of us. I say to her retreating back “Hello. I am Bernie, this is my Mother Jean”. She turns, says hello and makes to walk away. I ask her blue back what her name is. She replies without breaking stride and is gone – I am hard of hearing so did not catch her name. When the next nurse, whose name I have to drag from him, arrives, he tuts and notices that the previous nurse failed to put a time and date on the stats she carefully noted to the exclusion of the patient.
We wait. We wait. We wait. We wait.
A fat White South African in dark blue with Waynetta Slob hair and a malodorous over made up sidekick in white arrive with a old man on a trolley. He is from a Home – I know this because the fat south african announces it in strident Afrikaans tones to her sidekick and incidentally the entire CDU. They pull the curtains most of the way around the bed and start to discuss their social lives while tugging this old guy from trolley to bed. He stirs and says “it hurts” and the fat south african makes a joke about his shorts and being on the beach and laughs herself to a croak about her witticism. Both “nurses” smile at me when they emerge from the partially closed curtains and look annoyed when I do not smile back.
We wait. We wait. We wait.
The waiting is ok, actually. I can think through a few things, get a grip of myself, and as I know about hospitals and healthcare – I should, I have commissioned and managed enough – I appreciate that the beds are scarce, the staff busy, and people are sick. It is not the waiting that makes one weary, it is the wilting lack of information and human contact, the tangible evidence of the diversity of care, and the total lack of food and drink. I have advice: if you are going to have stroke, for the sake of your family don’t have it on a bank holiday – there is nothing open and no way to get sustenance. One ray of light: the Sister, who also has to be dragged to an introduction, nevertheless manages to manufacture a brilliant, hot, strong, life saving cup of tea for me. If she asks me I will marry her.
We wait. We wait. We wait.
The same nurse who managed to avoid looking at either of us while writing her nursing assessment of my Mother earlier tells the woman opposite that she is taking her to X ward. The woman says she has been told Y ward. The nurse is irritated and says she is sure she is right but will check. She comes back and without apology or a missed beat says that she is taking the woman to Y ward.
We wait. We wait. We wait.
The night shift arrive on CDU- Sister has the manners to say a goodnight to us. The others fail to do this. Sister is ok – she has to manage these dregs, so I have some sympathy with her. Not much.
I remember that I asked my Mother if she had been to the loo back when she was still talking and moving and in her own flat, about 100 years ago, and she said she had been that morning. I had made her a cup of tea and watched her drink it before Stroke wrestled control from her and changed the World. I ask the nurse, who I search for and find behind the door of the admin room, what the continence plan is for my Mother. He looks blank. I say “continence, pathway of care, continence assessment and plan. What are you planning to do to manage my Mothers continence? Jean. First bed in the bay. Stroke. 82 years old. Continence care. CONTINENCE CARE” He looks increasingly blank and slightly hunted, as if I have told him that he will never see Kansas again unless he clicks his heels and answers a Continence question right. Toto emerges from the staff loo and barks that my Mother will be catheterised if she does not “p.u.” and that will make sure her skin is safe. I won’t bore you with the conversation that followed: it was courteous and was an exchange of views about catheters (I know that have a place but that place is limited and the risks usually outweigh the benefits; nursey likes them), about continence plans (I explained that they are a nursing function, nursey said she would ask the doctors about it) and about talking to me. That last one seemed off their radar. Perhaps I said it in Esperanto…?
We reach the Stroke Unit. The nurse who escorted us there allegedly to “hand over” does indeed hand over a paper file, and then tells the night sister that “she” (that is me!!) “has doubts about our care”. I point out, kindly, that I have no doubts about “their” care, only hers. She misses the point. Sister asks me, when nursey has gone, what that was about. She appears human, so I say that I wasn’t being difficult or even challenging, but that I disagreed with nurseys view of continence care and very briefly outlined my thoughts on catheters. Sister agreed!! She took the trouble to explain to me what the protocol on the Stroke Unit was, and it tallied with mine. I felt my shoulders relax a little. She saw my shoulders relax a little. We smiled. It felt better.
What will the next day bring? I will let you know.
I left my precious, newly vulnerable, elderly, unassuming, unassertive, unconscious Mother with this bunch of strangers. What does that make me?