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.