In a temporary departure from blogging about my experiences as a student nurse, I’d like to pause for a moment or two to reflect on my experiences as a visitor to the NHS. Last week’s (very welcome) announcement that car parking fees at NHS Hospitals would be removed or minimised for those visiting long term in-patients or the critically ill, reminded me of the time 12 years ago when I became a visitor to the NHS rather than an employee of it.
My mother was 68, and an enthusiastic cook and traveller. She chaired the local Town Women’s Guild, swam regularly and loved gardening. She had a wide circle of long-standing friends and a beautifully kept home. She came to grand-parenting late (my fault) but adored her two grand-children and made life wonderfully fun and interesting for both of them. She lived not far from me with her (second) husband of many years and together they made a very happy and active couple. I don’t remember her ever being ill and aside from when she had my sister, and I don’t think she had ever been in hospital in her life.
One Thursday evening I called Mum for a chat and she said she thought she had strained her back gardening. She was had taken some pain killers and was having a lie down on the sofa to wait for them to work. We had a chat and I thought nothing more of it. Two days later, on Saturday afternoon, I called her to see how she was feeling. This time she sounded a bit drowsy, her speech a little slow and distant. She said the GP had been out for her back pain and prescribed Diazepam to relax the muscle spasm. No surprise then that there was transatlantic style 5 second delay each time I said something. It was so out of character for her that I said I’d pop over and see her but typically she was insistent that I didn’t bother, she would be fine she said. A bit troubled by our conversation, I jumped in the car with the children and went to see for myself. She was lying down, a little drowsy but cheerful enough. We didn’t stay long so as to not tire her and my step-father said he would call if there was any need, so we left again. On Sunday I called and he said she felt a little better after a reasonable night’s sleep. Back pain is awful. It is tiring and persistent and affects everything you do. There was little I could do to help beyond what my step-father was already doing so I stayed put at home.
On Monday afternoon, I was in the garden with two friends. The sun was shining and the children were playing with watering cans and buckets. The phone call from my step-father to say he was in the local A&E with my mum was totally out of the blue and I had to do a quick mental switch from unconcerned, mother of two to very concerned daughter of one.
I called my sister to let her know (although I knew no details of what had happened) and drove to the hospital as quickly as I dared. On arrival, my step-father, Rob was outside the A&E waiting. He said that Mum had got worse during the night and that he had called the GP in the morning. The GP had come out to the house again (a different one this time) and couldn’t work out why Mum was in so much pain. Eventually, he had decided to call an ambulance. My step-father an articulate and sensible man, had no real information to add. To this day I don’t really know what happened between the onset of back pain on the Thursday and the admission to A&E. The trouble with being one removed from being the next of kin is that nobody tells you anything and nor are they obliged to. Something that came back to haunt me later when I tried to access my Mum’s health records.
We waited a long time in A&E with little information although I understood why. The priority was my mother and we had to trust the staff knew what they were doing. At this stage, all I knew was that my mother had bad back pain, painful, debilitating and incapacitating but not life threatening. So when a member of staff took us to a nicely decorated quiet room with tasteful pictures on the wall it took a moment for the alarm bells to go off but when they did it was with terrific clang. Your wife, said the on call SHO to my step-father, has been moved to the resuscitation room. Why? We don’t know what is wrong with her she said but she is getting worse.
More time waiting and no information until suddenly we are told we can pop in and see her. It is around three hours since we arrived and two days since I last saw my mother lying on her sofa in her home. Now she looks every inch of her 68 years with dishevelled hair, flushed cheeks and tired eyes. A catheter slung over the side of the trolley and a cardiac monitor blipping away. A blanket loosely covered her lower legs and a hospital gown which had ridden up to expose her thigh. Shocked at this indignity, I reach to pull the blanket over her and tuck it in as best I can. She smiles. She is fine she says. We stay but a few minutes before the porters arrive to take her up to the high dependency unit. The SHO can tell us very little. An infection she says. We need to monitor her overnight. And the resuscitation room? Just a precaution she says.
My step-father sees Mum to the ward and my sister and I go home. What a day. It will be busy tomorrow I think, with clothing to bring and visiting times to arrange between us. I am moving into hospital visitor mode already. I drop to sleep like a stone only to be woken by the phone at around 3am. It is the hospital, mum had deteriorated and I need to go now. I collect my sister from her house and we drive the 20 minutes to the hospital and take the lift up to the high dependency unit, which in reality is just one of the bays on the acute surgical ward. I know this because I have worked in the hospital for a number of years. I know many of the staff, I know my way around, I am normally an insider but not now, now I am an outsider, a visitor. Suddenly I know nothing about anything least of all what is happening to my mother.
We are asked to wait in the dayroom at the far end of the ward, my sister, my step-father and me. The SHO comes to speak to us. She doesn’t know what the problem is but they are doing tests. It is an infection. Mum is much worse. They have taken bloods. They have started IV antibiotics. I ask if the consultant can be called. No I am told, he is a consultant. Isn’t that the point I ask? No, he wouldn’t do anything different she says. We will call him at 08.00am. I am helpless. I know nothing, I don’t know how to push for more, I am tired, upset and I can’t grasp the enormity of what is happening. I am just the daughter, not a vastly experienced, capable, articulate nurse. During the night there is talk of a move to London, a liver transplant and a blue light.
By the time the consultant comes it is too late. She is not even well enough to be transferred to the ITU across the landing. In all this time we have not been allowed in to see her. I am in the day room when I hear the crash call go out and I know it is for her. Nobody comes to us. Breakfast is being given out to the other patients. The ward is warming up for the day ahead. I walk down to the high dependency bed. Curtains around the bed confirm my suspicion. I look in and the crash team are around the bed, defib in hand. My mother is intubated. They look at me. I want to come in I say. A nurse comes out, pulls the curtains behind her. Don’t come in she says. I want to I say, I don’t want her to be alone. Are you sure she says? Yes I say, and she thank goodness, has the good sense to let me. I stay at the top of the bed as they work on her but it is no good, I can see she is not going to make it.
So what next? The staff ‘tidy’ my mother up. We are invited in to say good bye and I ask them to turn the ventilator off which is pointlessly and noisily clunking away at my Mum’s unresponsive chest. I have to stand behind my step-sister who has come over all dramatic. I have no time alone with my Mum (not ever again) and I say a private thanks that I pushed my way in to be with her before the very end came. A super nurse (thanks Emma) and a lovely anaesthetist have a few words with me in the office. I am given Mum’s wedding ring and am reminded of the number of times I have done this same act in reverse. I hand it to Rob outside who is in bits. My sister and I leave the hospital, minus the person who brought us into the world, who can never be replaced and who until just a few days previously had barely had a day’s illness in her life.
And afterwards? Going through the address book to let people (many of whom were strangers to us) know what had happened. Visiting Mum in the funeral parlour and bitterly regretting it. A large funeral, jostling in the front row from the step-sister (I lose and end up on the second row) and the vicar saying my Mum’s name wrong not once but twice. The post-mortem identifying cause of death as bacterial meningitis, fast and furious but potentially treatable. Believing that something went wrong in my Mother’s care but having no way of finding out. And finally, going back to work at the same hospital and on the first day going to see a patient on the same ward where Mum had died.
Taking a deep breath and carrying on.
