Day 9

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.


6 Comments on “DAY 9”

  1. Sarah Reed says:

    Dear Bernie
    I came across your blog completely by chance and was very moved by your story (and that of your mother). I fear that perhaps day 10 never arrived?…
    My father had a truly awful experience at the hands of K&C hospital but that was over five years ago (he had septicaemia and kidney failure) and died shortly after we finally managed to get him moved to another local hospital.
    My brother, a gerontologist working in Canada, was appalled by the lack of care and respect meted out to our father.
    The family of the man opposite my father’s bed pleaded with us to try and help him too but did not realise that we had almost no power, even though we were seen as ‘difficult’, bolshy, even.
    I write a blog about older people’s issues and would like to mention your blog if you would permit me to?
    Best wishes,
    Sarah Reed

    • Hi Sarah. Thank you for your comments and many apologies for the late reply. I do not re-visit this blog more than I have to – the feelings are still raw. I am re-visiting now because I have had further contact with K&C following my blog going a bit global and I am going to update it.
      I am so very sorry to hear of your own experiences – it is outrageous that such neglect and downright cruelty can be the norm. It leaves such lasting pain for those left behind. My Mother died, as you have guessed, and her last days were a little more comfortable, but at such a cost to me – and the effort was continual . And that is ok, it is what we do and what we are here for, but it should not be that only those with big-mouthed family will get appropriate or even humane treatment. It is a draining and humiliating experience.
      K&C have indeed made huge efforts, as I also sent my blog to CQC and a number of others including my local MP, who was incredibly helpful. They have altered many things and have instituted some training. I will report more fully in the update, and will include the postscript that following my meeting with the senior management team at K&C where they briefed me on the developments I received a mis-spelled letter which got my Mothers name wrong and was incomplete, and included minutes of the meeting which mis-represented my words in favour of K&C. I have rejected the minutes.
      Please feel free to use my blog, or me, in your own endeavours. I am happy to do anything it takes to ensure others do not have to endure what we have had to. At a time when we are at our most vulnerable, either as patients or as the loved ones of patients, it is a constant theme that hospitals, nurses, doctors, carers, do the very opposite of what they should do, and there is no one who will be accountable. Part of my mission was to re-dress that a bit. I hope you are healing and that time has been kind. It is a potentially devastating experience (I also experienced it in Ireland with my Father only 3 years ago – another shockingly neglectful service in Wexford General – it is tempting to think it is us rather then the services, but truly it isn’t!) but I believe that if we harness it and make it work as a tool for progess it can also act as medicine for us too. Take care – please keep in touch.

  2. nick says:

    I came across ur posts via a recommendation in the comments section of today’s Daily Telegraph headline article about how last government wasted huge amounts of taxpayers money on NHS while actually making it worse through lack of planning. your writing is very moving as well as informative. thank you

    • Thank you for that Nick. I re-read it the other day and found that although time makes a difference I can still feel that dread and disappointment I felt then, and the anger that the NHS was failing us so badly. The upside is that after much discussion and lobbying, I met with the hospital again and they had done some major work, on the back of this blog and following our discussions, to upskill the stroke services. I cannot comment on how successful the plans were, clearly, but they sounded good and well planned, so I can only hope that things there have improved. However, the NHS itself is riddled with similar mis-management and if it took some major upheaval and bloody-mindedness on my part to get this far with this small department, I am not confident about the remainder of the NHS…….

  3. Roger Green says:

    Dear Bernie,
    Would it be OK to use some extracts from your blog? My mum died in very similar circumstances, and I need to convince the Coroner for N.E.Kent that there is a continuing public danger at K&C, in order to get an Inquest with a Jury. I was also told by K&C that major work had been done, lessons learned, as a result of my mum’s death, but it seems that this is the standard response. I’ve just read another account of dehydration and neglect at K&C from early 2013.
    Roger Green

    • Hello Roger. Apologies for a late response. I am sorry for your loss. Of course, please use my blog if it helps. he aim was always to flag and improve things.I will update it soon – there was a better outcome in some respects, as the wards were improved and one consultant was sacked as a result of the blog. I will update soon.

      Many thanks Roger. My thoughts are with you.

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