Is the Crimean War approach right for today?

I've just done Viv's toenails, trimming them for her and applying some gunk to address problems that arose with them a few months after she left hospital last year.

It reminded me that, while she was in hospital for five weeks, I had to attend to her toenails. It wasn't the job of the nurses or HCAs ... maybe, if I had asked enough, they would have engaged a chiropodist to attend to them, but my approach was to do them for her.

This issue shows one of the fundamental problems with hospitals and nursing today; they are too much based on the Florence Nightingale principles, which were fine dealing with war wounds to otherwise fit young men, but are useless for treating the more complex cases that arise in today's NHS.

A patient with poor toenails that remain unclipped may struggle to walk; they will then lose muscle tone, become weaker and need more care from others. Alternatively, they may develop an infection in their nail, which can cause the nail to die, or come off, again making walking difficult.

Surely hospitals should be like I remember boarding school to be ... 'inspection' at least once a week, and everything, down to the smallest detail, to be clean, tidy and healthy... or is it beneath our degree-qualified, professional nursing establishment to consider cutting patient's nails to be part of their duties?

Getting well is more difficult than not

Change is always a challenge. When someone close to you is taken ill, the shock of the resultant change on your life can in turn make you ill: I lost nine pounds when Viv first went into hospital.

But, once things settle down, you get into a routine; routines are comfortable thinsg, and you get to cope Until, that is, things change again.

Slow recovery from an illness (Viv has been fourteen months to date, perhaps another ten to go) involves a succession of small, yet significant, changes; one day the patient can't do something, the next they can, but you end up trying to help them do it anyway and get in a tangle. In fact, you actually face almost constant change throughout the recovery period.

I'm really pleased that Viv is recovering - she can walk with a stick now, having been off her legs completely twelve months ago - but there have been times when changes have been difficult to cope with for both of us - perhaps letting her get up and go to the loo on her own was one of the biggest.

This challenge of facing up to change is perhaps why many people fight shy of their rehab, and just settle into life in a wheelchair, or whatever. Maybe better support from the authorities (both carrot and stick) might help to improve their eventual recovery status, and wean a few people off their culture of care dependency?

Do people really care about the disabled?

Ten or twenty years ago there was a lot of noise about the need for equality - whether women, gays, ethnically different, or indeed disabled. You have to be really careful with what you say to avoid offending women, gays or those of a different race ... but, it seems, the disabled have come out of it really badly. Yes, we have paralympians on TV, but what is done to make life easier for the average person in a wheelchair, or recovering from an illness?

When we go to the supermarket I will push Viv in a wheelchair, coupled to a special shopping trolley that connects to the 'chair. Apart from demented children running in front of us, not realising I can't turn the ensemble on a sixpence, the actual acquisition of stuff into trolley isn't too bad. But paying can be a nightmare.

Our local Asda has three types of checkouts: manned ones, un-manned ones, and express unmanned. I can't take the wheelchair and trolley combo into the express unmanned area a) because it's intended for basket-only shoppers, and b) because there's insufficient room to manoeuvre there. All bar one of the manned checkouts, and the unmanned ones, are too narrow for Asda's own wheelchair trolley to get through without bumping against fixtures: there is just one 'wide' aisle, marked with a wheelchair symbol, which is intended to be used by wheelchair users. Guess which checkout lane was closed this morning? Yup, the wide one. We ended up going through an unmanned one, the trolley scratched some paint off the edge of the bollard that is put there for some reason. If they have only one wide lane surely they should think about the needs of the disabled and keep it open?

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In a similar vein, some months ago I raised a complaint with our local council. Viv is recovering from a nasty condition - involving brain surgery and stuff - and needs to do rehab exercises, but we have to be careful that she doesn't get exposed to too many germs. The council put in an outdoor gym just along from us, and one of the by-laws is that dogs aren't allowed in that area of the park - for obvious reasons.

There have been numerous cases of dogs being there, and weeing and pooing around the equipment, so I have stopped taking Viv along. I contacted the council and asked for signs to be put up confirming dogs are not allowed, but bugger all has happened. The gym equipment is now well and truly 'marked' by local canines. The dog owners must all believe that their delightful little pooch can't harbour anything nasty, but clearly haven't given a thought for people whose immune system is not as robust as theirs. If gay, or black, people were being effectively excluded from council facilities there would be an uproar; no one gives a fuck for the disabled.

(Racial and sexual communities have vocal lobby groups speaking for them; there isn't even an ombudsman to take up complaints raised under the Disabled Discrimination Act.)

Benefits are a disincentive to getting well

Viv and I often use the disabled bays in car parks: it's easier for her to get out of a car if she can open the door fully. She can manage in a standard space - I get the wheelchair out at the back, and she gets out carefully, ensuring our car door does not bash against the neighboring one. Indeed, most people using disabled spaces could get by in a narrow space; the blue badge has almost become a trophy, a reward for actual or apparent incapacity, entitling the user to use wider spaces in the car park. But, if you get well in the fullness of time, you will lose your blue badge.

It's the same with benefits. Disability entitles you to benefits, perhaps £150 a week. If you get well you lose them. 

Where's the incentive for people to do the exercises specified by their physio? Where is the incentive for people to get themselves fit and well? If they get stronger they lose their benefits; how many people take the benefits, say 'thank you very much' to the DWP, and do little to improve their health?

No wonder the country is skint.

Why does no-one challenge consultants?

Viv is recovering. It's going to take a while, but, things are looking up.

However, I do think it is right to consider why she has had such a rough time: it is only by asking such things that we can make the lives of other easier, should they find themselves in a similar situation.

Viv spent five weeks in Bedford Hospital in early 2017. Analysis done by a consultant at another hospital has shown that the cause of this hospitalisation was almost certainly hydrocephalus.

The consultant at Bedford did not consider hydrocephalus as a possibility. Despite it being an observed condition that often accompanies a type of tumour with which she had already been diagnosed (and has since been treated), he insisted her weakness was nothing to do with her tumour but was due to lifestyle issues. Asking her weight, I told him she was 8st 4lb. He said I was lying and that she was nothing like that; and left abruptly. Two days later she was weighed by ward staff who found her to be exactly that.

I complained about his manner informally to ward staff; they shrugged their shoulders and indicated there was nothing they could do. I wrote to the CEO; my letter was ignored. I finally raised a formal complaint through the PALS process; in a somewhat tardy reply to this, the consultant stood his ground and the hospital supported him, even though it was then quite apparent that he had been mistaken.

This, I believe, is a dangerous practice and is possibly causing many deaths and injuries in 'our' NHS. I don't believe it to be unique; I recall an article in the press suggesting a huge number of deaths arise through avoidable mistakes in the NHS.

 No other industry would allow mistakes to be ignored; it would be necessary to hold some form of inquiry to ascertain how to reduce the risk of the problem arising in future. This is basic risk management, taken for granted in aerospace, engineering, finance and IT. Yet in the health sector, it seems, mistakes are not considered to be opportunities for improvement, they are inevitable events, and those affected are just unlucky.

Other staff at the hospital - physios, junior doctors, nurses - were far from convinced with his explanation of her condition. He had failed to check with a consultant at The Lister who had seen Viv just three weeks before she was taken ill; he was wrong about her weight; he was difficult to contact and did not return their calls regarding her condition. They would not, however, challenge or query his opinion. It seemed rather like trying to encourage junior priests to challenge the views of a bishop; indeed, in the way it manages many of its internal affairs than the NHS bears more resemblance to a religious institution than to a modern science-based business.

It is only by being prepared to question everything that we can improve, and the medical professions need to change their centuries-old attitudes and put patient safety before personal and role status.