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?