My Mother, the patient

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…… 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 wait.

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?


5 Comments on “My Mother, the patient”

  1. Andrea Evans says:

    What a brilliant description of so many days on so many wards with the same type of people. Am a Nutrition Assistant (new role) and used to be an HCA! Still am an HCA to a great extent. I can really “see” the scenario you are describing and I think your blog should be mandatory reading for all health care staff!!
    Wishing you and your mother all the best and please keep writing!
    Andrea — Derby

  2. Susann Akers says:

    hello – What an awful experience you having, I don’t know how you have managed to keep your temper in what must have been a very frightening experience for you. I wish you and your mother the very best and I hope that she makes a recovery.

    Susann xx

    • Thank you Susann, your words are appreciated. One of the things that concerns me very much is that this experience does not appear to be unusual. The number of people who have been kind enough to email or respond with their good wishes and to share similar experiences is phenomenal. It really is outrageous that people are enduring this kind of service and cruelty. Neglect is only one word to describe it.

      But my focus right now is simply to get us through this and to make sure my Mother has the best nursing she can.

  3. Jackie Groundsell says:

    I do so feel for you and your mother Bernie. In December 2000 both my parents were seriously ill in different hospitals at the same time; Dad sadly died and Mum was subsequently in a nursing home for 4 years. Neither received appropriate and caring treatment.

    My very best wishes to you both, please keep us up-to-date

    • Thank you Jackie. There are some great services and nurses out there, but they are dwarfed by the others. I am sorry you and your parents experienced poor care as well. Your words and thoughts are valued – thank you.

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