Does the system put patients first?

 recently lost both of my parents in less than three weeks. Both had had long-term illnesses so we’d had lots of experience of the care that the NHS can offer – of the excellent staff that work so hard to care for their patients and the vital support they offer to their families.

We have so many examples of this care and support just from the end of their lives, from the clinicians who took the time to explain to us what was happening, to the doctor who hugged us after my father died and told us what a lovely man he was even in those final days. From the high dependency unit consultant who took the time to explain the death certificate to us and said to contact him at any time to ask questions, and finally to the staff from the oncology day unit, that both my parents had attended for many years, who came to their funerals.

This is the excellent side of the NHS and my sister and I are incredibly grateful for it. But there were also failings in how the way that the trust was set up affected my parents in their final illnesses.

Both of my parents’ final illnesses were short. Both went initially to their local hospital – only 6 miles and a 10 minute drive from home, where they were well known to the staff. So why did both pass away in hospitals more than 45 miles from home, where my sister and I had to drive for over an hour to be with them?

The answer is because of how NHS trusts operate. Our local hospital only offers a limited range of services, which is decreasing all the time. Perhaps this is understandable given the current pressures on the NHS. This being the case, when my parents needed those services not offered locally, they surely would be transferred to the nearest hospital that did offer them, wouldn’t they? Not for either of my parents. They were both transferred to hospitals not in our nearest city, less than 30 miles away, but to hospitals over 40 miles away on the opposite side of the region. Why? Because they were part of the same trust.

The cases were slightly different. Mum was transferred to a hospital where the emergency care consultant had a colleague who he’d discussed the case with, a consequence of them belonging to the same trust. Dad, on the other hand, was given a choice – to return to the hospital where Mum had died less than ten days before or to go to the other major hospital within the trust. No mention was made of the two hospitals that were closer. Unsurprisingly, he chose the other major hospital within the trust.

These moves took them both further from the people who most desperately wanted to be with them. Also because they themselves had to be moved, this led to further problems. Mum – who was ill enough that the first doctor she saw told Dad to get me and my sister there quickly – spent over five hours waiting for an ambulance. We were told later that only two patient transport ambulances were available that Saturday for the whole region. The worst part? Dad spent those five hours not with his seriously ill wife, but waiting at the other hospital where he had been told to go as she would be transferred soon. In the end, she arrived only shortly before my sister and I travelling the 300 miles from London. She died less than eighteen hours later.

With Dad, we waited for five hours for a bed to be confirmed and for an ambulance to arrive. When it did, it was an ambulance that couldn’t support him being on a drip, as he had been all afternoon. In addition to how long the journey would normally take, there were also diversions adding an extra 45 minutes. It was over two hours before his drip was reconnected. After his condition had worsened and he needed dialysis, the platelet transfusion he needed had to be sent from one of the hospitals belonging to a different trust that we drove past every day on our way to see him.

We often hear about the need for a good experience for patients and their families. However the way that the NHS is currently structured, and the way that it operates within that structure, doesn’t seem to put patients and their families first. I know that, if it had been possible, both of my parents would have chosen to stay at our local hospital, or at the very least the closest hospital that could provide what they needed. The reassurance that their children were nearby would have offered them greater comfort while they were seriously ill. It would have taken some of the stress away from their family.

I am thankful to the NHS staff who cared for my parents, however I hope that in the future the system will be able to support patients and families in the same way as its people do.

Lucy is the Digital Communications Officer at the Health Foundation, www.twitter.com/lucytara