‘Risk is in the eye of the beholder’ and other patient stories not to be swatted

Fighting is for fundraisers

I won’t be the first or the last person to remark on the misappropriation of fighting talk when discussing ill-health. We don’t ‘fight’ cancer, dementia, the aftermath of a stroke or mental I’ll-health. No, what we actually do is fight all the things around it. We fight to get to see the doctor. We fight to get to get a diagnosis. We fight for a name for our condition. We fight to get referred to a specialist. We fight to get the results of tests. And so it goes on. We fight for the things for which there should be no fight at all. Leaving us lacklustre for our single most important task – taking care of ourselves so that the medicine and support we receive can have the greatest impact.

No, fighting talk is for fundraisers and journalists not for me.

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Weekends in hospital

During the time my Dad was recovering from his stroke in hospital, the whole family would dread weekends. Well, actually, from about 4pm on Friday until 8am on Monday if truth be told.
It wasn’t that the clinical care was worse. In fact, if ever there was an issue or medical emergency it would be deal with urgently and efficiently. No, it was that at weekends the hospital environs went from being that of a living, breathing place to something more like an Amazon warehouse.

Depleted and overwhelmed staff patrolled wards and corridors with barely enough time to put fallen patients back into bed (or the equivalent), like boxes onto shelves. When you combine this with the news that we can now bar-code hip replacement (which in itself is a good thing) you realise that we are not that far off our hospitals becoming ‘carehouses’ in which robots have taken the place of humans with the prime purpose of maintaining the order of things.

Yes, the soul goes out of a hospital at weekends.

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I suppose if you are an in-patient for a short spell of time this transition at weekends is a matter of mild inconvenience. But if your stay stretches into many weeks if not months the experience becomes detrimental to your care and mental well-being. Services such as physiotherapy or occupational health come to a grinding halt meaning a frustrating loss of momentum with rehabilitation. Feelings of isolation and frustration are accentuated and can rapidly become depression. It’s not as if the world outside stops at weekends. You can hear it bustle away outside, with the exception of Sunday evening perhaps. So why does the NHS?

Even in the public areas of the hospital life drains out of the place early in the day. All apart from Costa and WH Smiths. They did a roaring trade well into the early evening. They seemed to have twigged that people don’t just get sick between 9am and 5pm. Unlike hospital reception. I’d like a hospital administrator to explain to me the logic of closing reception desks at 5pm when visiting hours for relatives are 6-8pm.

In fact I don’t need them to explain to me. I know why. It’s because even though we build hospitals that look beautiful from the outside we don’t design them around patients, their lives, the lives of carers or, for that matter, the staff who work in them.

Upstairs Downstairs

It’s the perennial cry of academics and professionals: patients and the public just don’t understand risk? It’s a problem, they shout. It could bring down the whole health service (OK, I exaggerate).

Perhaps. But on the other hand, do health professionals understand risk? Are they able to make good patient-centred decisions without being blinded by their own professional biases about risk and what it might mean? Is risk in the eye of the beholder? My experience of the last few months unsettled my previous notions of how assessment of risk is used to make decisions in a patient’s interest.

As you would expect, when thought was being given to my Dad’s discharge, many assessments were made of my parents’ home and its qsuitability. The key issue was his mobility even though he was expected to make good progress over time and with the help of physiotherapy. Visits were paid. Measurements were taken. Again. And again. The NHS knows more about their home than the local estate agents.

Everything was going swimmingly it seemed until my Dad quite rightly expressed a desire to live upstairs rather than downstairs when he got home. Cue an organisational cough, an NHS splutter that could be heard as far as Hadrian’s Wall. Oh, no, no, no. No, no, no, no, no. We can’t have that. What if you fell down the stairs? What if there’s a fire? That’s a lot of lifting for the ambulance staff when they come to take you to appointments (of which there have been zero since he got home a month ago). The hospital bed will be too heavy for the ceiling and that’s if we can get it up there at all (goodness knows what happens to people who live in flats).

I admit, I could see their point of view. Indeed, I wavered at one point and thought about how I might persuade my Dad otherwise, But, good for him (and my Mum) they stuck to their guns and refused to budge. So, today, he is living upstairs at home. In his own bedroom. Near to the bathroom. Away from the kitchen. Near to his blessed study. Where his privacy can be respected. In a way that the whole home has not been turned into a cottage hospital and my mum’s life has not been drenched, subsumed by her new identity as a carer. And he’s as much likely to fall down those stairs as I am to lift the FA Cup for Crystal Palace.

Anyway, it can’t have been that much of a risk because the handrails and other ‘essential’ stuff has still not been fitted, a month since Dad’s return.

Hope is a walking stick 

There’s another thing. Whatever the reason, my mum and Dad were convinced that he would come home with one of those four-legged walking sticks. It meant a lot. Not because they expected him to be dancing around it in gay abandon within days of his return like a maypole. But because it represented a goal, an ambition, a desire not to be content with the status of quo of shuffling and being helped to take the smallest of steps. Naturally, they were literally crestfallen when it did not come with him. Angry, when it was explained that the powers that be were concerned it was not safe for him to have one at hand. I wish they had been there to explain why. Not having it there was not just a statement of mistrust, it represented the withdrawal of hope. If they don’t think I can do it, who does?

In both these instances it is not that my professional colleagues were wrong. It is just that it felt as if their focus on risk lead to a dogmatic response which blinded them to other issues of importance and value to my parents. A response that did not appreciate the many things that would contribute to my mum and dad’s health and wellbeing during this new phase in their lives.

Patient stories are like flies

It occurs to me that there is an inherent problem with patient stories which is not of our making. It is that our solution-focuses professional and managerial colleagues see them like flies. Flies represent problems and these are best dealt with by swatting them. Flat. Dead. Never to fly again. By swatting the fly we have solved the problem or, at the very least, the problem has gone away. Flown out of the window. What they don’t realise is that we don’t tell patient stories so they can be swatted away. We tell them because the flies represent something else – an issue, a phenomena that has deeper cause and meaning and which requires a more considered response

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