One of my purposes when I began this blog was to use history to mediate on death, loss and grief. I have used it to compare my own experiences of bereavement, following the death of my husband John Gurney, with that of figures associated with my research.
December 8th 2024 marks ten years since John's Gurney, from cancer. Every year the weeks leading up to the anniversary are a tricky time in our household. The increasingly dark autumn evenings, accelerated by the switch back to Greenwich Meantime in late October, always seem to have a subconscious effect on us, reviving buried memories of those difficult final weeks. Ten years feels like a significant milestone - especially coming after our Geordie Double in the summer - and I have found myself reflecting a lot on the time when John was dying - including our engagement with the NHS.
We had, of course, had much experience of the NHS throughout the year that John was ill; from our local GP practice, to in-patient and out-patient services at several local hospitals. John had been seen by a range of experts including oncologists, gastroenterologists, radiographers, anaesthetists and dieticians. We felt as though we had walked virtually every corridor of our local hospital. Our experience was overwhelmingly positive. Almost everywhere we went we were treated with care, respect, and kindness.
Reliving John's final day is particularly painful for me, but my experience on that day revealed something else to me about the NHS. Something that I fear we are in danger of losing - or may already have lost.
The morning of 8th December 2014 dawned early for me - in fact, I had been awake all night - but by the early hours I was so worried about John that I phoned 999. When the ambulance came and the paramedics confirmed that John was very sick and needed to go to hospital, I was faced with a dilemma. I wanted to go with my husband in the ambulance, but my two children were still asleep in bed. Our family lived hundreds of miles away and though I knew that my next-door neighbours would look after the children if I asked, I did not want to leave them at this time. The paramedics were kind and thoughtful. They told me to stay with the children until I could drop them at the school breakfast club, promised to take good care of John, and took my telephone number just in case.
Within half an hour one of the paramedics phoned to say they had arrived at the hospital and that John was very poorly. "Get the children up" he said, "and come straight to the hospital with them". He promised that he would wait for me at the entrance to A&E and would make arrangements for someone to be there to look after the children while I spoke to the doctor. We rushed to the hospital and the very kind paramedic kept his word. He was waiting outside in the dark and cold and led us into the A&E department where other staff were waiting with teddy bears and a snack for the children.
That paramedic's willingness to devote time to us that morning was important. His understanding of my dilemma and commitment to finding a solution made it easier for me to cope with the situation. Moreover, knowing that there would be a familiar face on my arrival at the hospital helped me to control the panic that was rising inside me on the drive, allowing me to focus on being strong, calm, and patient with my children.
The doctor I spoke to on arrival at the hospital confirmed that John was very ill indeed and was not expected to survive the day. We again discussed the dilemma I found myself in - wanting to be with my husband during his final hours - but also not wanting to abandon my children at this traumatic time. I phoned my parents and they agreed to travel up, but it would take them around five hours to reach us, so we needed an interim solution.
As it happened, there was a private side room available for John which was next to a small bay housing four beds that were currently unoccupied. The staff arranged for John to be moved to that room, and for a play worker from the children's ward to look after my children in the bay. This was an ideal solution for us. It allowed me to spend time sitting with John and yet still be able to see the children and to be there for them when they wanted to tell or ask me something and when they needed a hug. They had the opportunity to visit their Dad in his room without having to sit by his bedside - which would have been distressing for them. Moreover, given that hearing is said to be the last sense to go, I like to think that John could also hear his children playing in the next room as he lay in the bed and that their voices might have given him a little comfort at that time.
Having a play worker there was also important as it meant that I did not have to be responsible for the children. This was crucial given that one of the things I had to do that morning was to go through the end-of-life paperwork with a member of staff. Acknowledging that this was going to be an upsetting task, the staff member began by offering me a hot drink. I asked for a coffee and was very surprised when she returned not with a plastic cup of instant, but carrying a tray with a cafetière of fresh coffee, a pretty mug, and a jug of milk. It did not, of course, make the questions she went on to ask any easier or the situation any less painful, but the offer of a little luxury at that moment is something that has stuck with me ever since.
There are examples here of what we might think of as 'inefficiency' within the system: a paramedic waiting around, after having handed over a patient, so as to speak to and look after the patient's family; two healthy children occupying a bay which could have housed four patients, and taking up the time and attention of a play worker; a cafetière of freshly ground coffee when a cup of instant (or water) would have been sufficient. But these things were so important for me and my family.
Let me be clear, my argument is not that efficiency within the NHS is unimportant. Of course we need to be careful with public money. And I am certainly not saying that, so that there can be kind treatment, accident victims should be left lying on the street waiting for a paramedic or that patients should remain on trollies in corridors waiting for a bed. But, on that terrible day for me and my family, the little bit of slack in the system made a huge difference to our experience and perhaps to how we coped with our devastating loss. I cannot be sure, but it is possible that being able to stay close to me until their grandparents arrived to look after them had an impact on how my children coped with the death of their father. I do know that it made a huge difference to me being able to be with both John and my children that day. Perhaps those apparent inefficiencies even produced cost savings - in terms of mental health support, for example - further down the line. Presenting efficiency as an absolute and uncomplicated good in the NHS - and in public services more generally - is short-sighted. As I found on that day, a little give in the system can make a huge difference to the experience of patients and their families.