Too Many Hospitals, Not Enough Humanity

If there is a cosmic game of hospital bingo, then last December I was winning the non-medical professional category for a few weeks. I visited three different hospitals, and was in at least one almost every day. I became the Queen of hospital car parks, and a pro at finding the right ward name in an endless list on direction signs. I can tell you that Musgrove Park Hospital in Somerset favours optimistically literary-themed names in buildings named for the junior royal who opened them, whereas Addenbrookes Hospital in Cambridge feels somehow more business-like with its less-evocative, descriptive names. Eliot Ward in the Duchess Building. Barrington Ward in the Jubilee Building. Rheumatology Research Unit, X-Ray, Outpatient Clinic 2.  I have learned that the bigger the hospital, the higher the parking rates.

I didn't plan my December like this - let's face it, no one really plans a tour of hospitals, do they? Hospitals usually crop up in our lives when we least expect it. Or, if the visits are more planned, they are still a somewhat reluctant choice of destination, even when they provide the relief, care and answers that we need and seek. And, of course, more people than ever have had more encounters with hospitals than probably ever before, and my experience was not unique at all, although it was definitely new to me.

Late in November, I called my parents, which I had been doing daily for the previous week, because Mum and Dad had not been well. My intention was just to check in on them. Mum was getting better, but Dad was not. In fact, although Dad's symptoms were all very non-specific, he was clearly, and noticeably, just worse. In the space of a 10 minute conversation I went from care and concern, to a very clear intuition that I needed to get in the car and make the 4 hour drive down to Somerset to see him. If you had asked me what I was planning to do once I got there, I would not have been able to tell you, but I was very clear that I needed to go. 

I had a window of opportunity of a few days without any appointments or commitments that I could not rearrange. One of the advantages of being a home-school Mum is that life is very flexible. So I just had to check in with my husband and the boys and make sure that they could take care of each other for a few days. I assumed I would be back home in time for my hospital outpatient appointments at Addenbrookes for the tests and assessments needed to get my Psoriatic Arthritis treatment started. I hoped that seeing Dad in person would reassure me that he was doing okay. That hope was not fulfilled. As soon as I saw him, I knew that things were not right.

Mum and Dad had both, very sensibly, taken a COVID test the previous week, when they had developed gastrointestinal signs within 24 hours of each other, and were both negative. With that in mind, taking Dad into a medical environment had its own risks, but it was clear that he needed to be assessed in person. After a restless night's sleep, ruminating on a combination of 25 year old veterinary principles and Dr. Google, I woke up convinced that he needed to be seen immediately, rather than wait for the GP appointment that had previously been offered to him for the Monday. I was worried, as a daughter, about how to persuade him to call the NHS Urgent Care line again when he kept insisting that he did not want to "bother" anyone. The fact that he ceded to my judgment fairly readily, further confirmed how terrible he felt. 

I pulled out the big guns of all my medical terminology to get the on-call doctor's attention, and she asked me to take some of Dad's vitals - pulse, respiration, blood pressure. That was enough to prompt a referral to the first hospital of the week - Bridgwater Community Hospital. The out-of-hours GP there took a full and detailed history, and examined Dad. After much discussion, he reluctantly agreed that Dad needed intravenous fluids, and further assessment, and so referred us to hospital number 2: Musgrove Park Hospital, which is the biggest local hospital in Taunton.

I learned that the ward that we were told to report to was the COVID Assessment ward, just as they came to collect Dad in wheelchair. They told me to say good-bye to him, as they whisked him away. Remembering all those terrible stories we've all been reading about seeing loved ones disappear into COVID wards and dying without ever seeing their families again, I felt like I had been punched in the gut. Was this the last time I would see my Dad?

That thought felt melodramatic, but, in the end, it turned out that it was correct. Ten days later, after COVID had once again been ruled out, and Dad was transferred to general medicine geriatric ward, Dad died suddenly and unexpectedly. Even the doctors, who were clearly frazzled and distracted by the big pandemic going on in the rest of the hospital were clearly shocked and upset, having triaged him as non-urgent. In between Dad being admitted, I had driven back to Cambridge for my own rheumatology and x-ray appointments, and then returned to Somerset to drive Mum to Musgrove Park every day for a week. Once Dad was off the COVID ward, he was allowed the same, single visitor for an hour a day. Mum was too anxious to drive the 45 minutes there and back, so I drove her each day and sat in the hospital car park. I spoke to Dad a few times on the phone, including on the day he died, when I had to tell him that Mum would not be visiting that day because the hospital had been closed to visitors due to rising COVID numbers in the area.

What to make of all of this? Who knows...? Certainly not me. I started to write this blog before I knew the outcome, and when I was thinking about witty commentaries about the state of caring in our society these days. When asked how my Dad died, I answer that although he did not die OF COVID, I believe he died BECAUSE of COVID. A post-mortem revealed that my Dad had lymphoma, a largely treatable disease in this day and age if caught early enough. But that was not diagnosed because my Dad was "parked" -- his case did not seem too urgent, and, to be honest, because he was not one to make a fuss. To be clear, I do not blame individual doctors and nurses. They were as kind as they could be, both to Dad, and to us, when they had a moment to spare. The doctor who called me the day after he died, who had been a bit brusque, and maybe slightly irritated with my constant questions on the phone earlier in the week, sounded genuinely horrified and upset that he had died so suddenly. I feel for her and all her colleagues, working in such an under-resourced, stressful environment, with nothing but clapping on doorsteps to support them. 

In the meantime, under the same circumstances and under-resourcing, I had had a very positive meeting with a brilliant team of rheumatologists, researchers and nurses, who had guided me through the process of starting treatment for my PSA. Most importantly, they had given me hope that things would get better for me. I would 

Clearly, I cannot be clear-headed or objective about my Dad's death. I loved him very much and he was one of the best of the best. I am still being battered by the storms of grief, and have struggled to put much of any of this into words until now, almost 4 months later. But if I had ever suspected that this country, and society in general, has neglected caring and humanity over the bottom line, and political expediency, then this whole experience has shed a much more personal light on that belief. I am heartbroken... not just for my Dad, although that would be enough to devastate me, but for the state of our collective humanity.