It is that rather wonderful time in Guernsey politics when not very much seems to be happening, which gives me an opportunity to write about my favourite subject. Me.
Regular readers will know that I disappeared into the PEH for most of August and eventually emerged 25 days later with rather less plumbing than I went in with and a new companion whom I have named Eugene Le Pet. Those of you with a little French may understand why. The rest can look it up.
Eugene is my stoma. More accurately I suppose he is my ileostomy, while the bag is his luggage, but I am still learning the terminology. I didn’t go into the operating theatre wanting one. There were other possibilities discussed and, given a menu, an ileostomy would certainly not have been my first selection. Circumstances rather took the decision out of my hands and I woke up with one. And do you know what? It really isn’t a big deal.
I am much happier having a bag stuck to my stomach than being in extreme pain, or even dead. There are still things I want to do. My grandson graduates next year and I intend to be there. After that I want to watch him get his life going and see where it takes him. If Eugene helps me hang around long enough to do that, putting up with him seems a remarkably good bargain. Nor, so far, has the inconvenience been anything like I imagined. It is slight. I empty a bag several times a day and change it periodically. That’s about the size of it. Eugene occasionally makes his presence known at socially inappropriate moments, but then so did the bit of bowel he replaced.
What has surprised me more is the stigma that still seems to surround stomas. I don’t feel any. I’ll tell anybody I have one and, if someone is genuinely interested, I’ll happily show them. Why wouldn’t I? It is a piece of my intestine sticking through my stomach, not evidence of some terrible moral failing. Looking around YouTube has been rather educational. There are young people talking completely openly about their stomas, wearing colourful bag covers and young women quite happily swimming in bikinis with their bags visible. They don’t appear particularly interested in hiding themselves away because part of their digestive system has been rearranged.
I wonder whether my generation sometimes finds that harder. I have heard stories of people struggling terribly with the idea of a stoma, sometimes resisting something which might save or considerably prolong their lives, to the despair of their families. Everyone faced with major surgery has to make their own decision, but perhaps some of that fear comes from an image of life with a stoma which simply isn’t true any more. Subject to my editor allowing me to get away with it, I intend occasionally to return to Eugene in these pages. Not every fortnight, I promise. There are limits even to my fascination with myself. But if talking openly about living with a stoma helps make it a little less frightening for somebody who suddenly finds themselves facing the decision I faced, Eugene may yet have a career in journalism.
But Eugene isn’t actually what I wanted to talk about this week.
For most of August I had a ringside seat at the PEH, although not one I would recommend buying a ticket for. I spent 25 days there, quite a chunk of it in the High Dependency Unit, and throughout that time the hospital seemed to be under pressure for beds. This wasn’t January. There wasn’t a flu epidemic sweeping through the island while everyone coughed over each other in supermarkets. It was August.
And while I am mentioning HDU, I must give a shout out to Nick and Gareth, Bryan, Fatai, Tom, Ming and all the others whose names don’t immediately come to the tip of my tongue. I have just noticed that every name I can remember is male, which says considerably more about my memory than it does about who looked after me. There were some wonderful women there too, whose names will undoubtedly return to me five minutes after this goes to print. Male and female, they looked after me when I was really at my lowest and the care they gave me was tremendous. I won’t forget them, even if some of their names currently escape me.
That ought to concern us, because the traditional picture of a hospital bed crisis is something that happens in winter. A particularly nasty flu season arrives, respiratory illnesses increase, elderly people become unwell and suddenly the hospital is full. You grit your teeth, get through it and wait for spring. That isn’t what I saw. Bed pressure in August suggests something more structural.
I recently listened to Heidi Soulsby and Michelle Le Clerc discussing health on their Guernsey Press podcast, The Long and the Short of It. During the discussion they came to the problem usually described as 'bed blocking' and asked a wonderfully simple question. Whatever happened to convalescent homes?
It stayed with me because I realised that I could quite easily have become one of those dreaded bed blockers myself. There is a rather large gap between being medically fit to leave hospital and being capable of looking after yourself at home. I discovered it. After 25 days in hospital, major abdominal surgery, a new ileostomy and subsequent heart problems, I was eventually well enough not to require an acute hospital bed. That did not mean I was suddenly capable of going home, shutting the door behind me and carrying on as though nothing had happened.
I could go home because I have family. They could shop for me, get food ready, keep an eye on me and generally do all the mundane things which never appear on a medical chart but make the difference between somebody being safe at home and somebody being back in hospital. Without them, I am not sure what would have happened to me. I suspect I might have remained in the PEH, occupying an extraordinarily valuable acute bed despite no longer needing acute hospital treatment.
In other words, I could have been a bed blocker.
I don’t particularly like that expression because it makes the patient sound like the problem. Some selfish old devil has apparently decided to take up residence in the PEH and is refusing to budge. The patient isn’t blocking the bed. The system is. If somebody has been treated successfully and is ready to leave hospital but cannot safely look after themselves at home, where exactly are they supposed to go?
Once upon a time there was something between hospital and home. We called it convalescence. You didn’t need surgeons, scanners and all the expensive paraphernalia of an acute hospital, but neither were you ready to fend for yourself. You needed somewhere safe, meals, some nursing support, help getting mobile again and time to recover. Somewhere along the way that middle bit seems largely to have disappeared.
Perhaps we shouldn’t simply recreate the convalescent homes of 50 years ago. Times have changed and there may be better ways of doing it. Some people could recover at home with intensive short-term support. Others might need a step-down bed for a fortnight or three weeks. Some will need rehabilitation. The important point is that none of those things necessarily requires an acute hospital bed, and acute hospital beds are fantastically expensive places in which to convalesce.
Think about what surrounds a bed in the PEH. Doctors, registered nurses, diagnostic equipment, pharmacy, operating theatres, laboratories, catering, cleaners, porters and all the infrastructure required to run an acute hospital. It is designed to treat sick people. Using all of that simply because somebody needs meals, help washing, medication supervision and somebody nearby in case they fall over seems a rather expensive way of solving the problem.
There is another reason this matters particularly to Guernsey. For generations we have relied on a huge health and social care workforce which never appeared on anybody’s payroll. It was called the family. Someone came out of hospital and a wife, husband, daughter, son, sister or neighbour was there. They cooked. They shopped. They changed the bed. They made sure tablets were taken. They noticed if mum or dad suddenly didn’t look quite right. My family has been doing exactly that for me.
But Guernsey families aren’t what they were. Children leave the island to go to university and don’t come back. Others leave because there are better career opportunities elsewhere. Some simply reach the conclusion that they would quite like to live somewhere where buying a modest house doesn’t require the discovery of an oil field underneath it. The parents remain here. Twenty or 30 years later those parents are elderly, perhaps widowed, and suddenly the hospital discovers that the invisible workforce it always assumed would be waiting at the front door isn’t there.
That problem is going to get worse, not better, and this is why I think we need to be careful when we talk about building more hospital capacity. If the problem is that people who no longer need hospital treatment cannot leave because there is nowhere appropriate for them to go, another ward doesn’t actually solve the problem. Eventually we simply fill that one as well.
We need to ask a different question. How much would it cost to provide proper intermediate care, and how much are we already spending because we don’t? A step-down bed does not need to carry the cost of an acute hospital around with it. Neither does a properly supported person recovering in their own home. And there is something faintly absurd about cancelling or delaying treatment for someone who genuinely needs a hospital bed because that bed is occupied by someone who desperately wants to leave but has nowhere safe to go.
I saw enough during August to know just how precious those beds are. I also know how easily I could have occupied one for longer than medically necessary. The difference between me going home and me becoming part of the bed-blocking statistics wasn’t some clever piece of health policy. It was my family.
We cannot build Guernsey’s future health service on the assumption that everybody will have one available.
So perhaps Heidi and Michelle’s question deserves an answer. Whatever did happen to convalescent homes? I don’t necessarily want the old ones back, but I am increasingly convinced that we need whatever the modern equivalent should be. The PEH should be where we send people who need an acute hospital. It shouldn’t become the place where we keep people simply because, after the hospital has successfully treated them, we haven’t worked out anywhere else for them to go.
Eugene and I were lucky, we had somewhere to go.
Increasingly, others won’t.
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