There are many reasons for the NHS's difficulties, but one of them is the lack of consistent overview and coordination. It appears that there is no-one who applies ‘joined-up thinking’ to the progress of the patient through the system, who is personally accountable and empowered to iron out glitches and systemic discontinuities.
'What the ward needed was a good editor,' said Harriet Sergeant's 97-year-old father after a painfully bad stay. https://www.dailymail.co.uk/femail/article-10419607/Dad-survived-war-nearly-five-days-NHS.html 'No one appeared to be in charge. I kept asking for matron.'
I'd like to second that, with an account of what happened to my dear friend Rob (not his real name).
Rob lived in east Birmingham, an area semi-neglected by public services, for the inhabitants are mostly not of the squealing middle class. It's the sort of patrol-free place where uninsured drivers come tearing along from off the motorway and rear-end your car, as happened some years ago to Rob's stepdaughter, leaving her with a permanent back injury. In Rob's case, a fool shot out of a side road, making him swerve, successfully (he had great reflexes for a man in his mid-seventies.)
So far, so good; but the swerve forced him to bang through a series of three potholes - what better roads can the hoi polloi expect? - and that's what did his back in. It took a while for the extent of the damage to make itself apparent, but when it did, that's when the fun started with the NHS: they didn't want to fix him. Maybe it was age-related operative risks, even though Rob was a non-smoker, physically very active and a keen archer; or maybe it was the QALY calculation that makes the monetary value of patients' lives tend towards zero as they get older.
However, Rob was not of the peasantry. He was highly intelligent, hugely well-read (a history teacher by profession) and determined. His GP was inclined to offer nothing more than palliative care, but Rob went online and found a surgeon who was qualified and prepared to do the operation.
Examining the X-ray of his spine, the radiographer missed the tell-tale shadow on Rob's liver, otherwise I don't think I would be writing this all in the past tense. Still, unlike the old joke, the back op was a success and the patient survived.
This was pre-Covid, so hospital visitors were free to come. When I went to see him, unannounced, I greeted him and shook his hand; he held mine for a long time as he smiled at me. I was embarrassed - some of us find it harder to accept affection than to get it. It was then that it occurred to me how the sick often tend to feel abandoned: for all her fame and friends, when Margaret Rutherford was crippled and on two sticks her husband wrote https://www.amazon.co.uk/Margaret-Rutherford-Dawn-Langley-Simmons/dp/0894070320 'We are very lonely. Where are all the people?'
A patient is an inferior category of person. Unlike us, it seems, they do not need much social intercourse - the cheering TLC that the less academic nurses of yesteryear could provide - or mental stimulation (except via pay-per-view TV). Food is put down, sometimes out of reach, and removed later untouched if the subject has been asleep (box ticked!) Well, I got Rob a paper and a couple of sausage rolls from the hospital shop, so that was a start.
He had arrived in this ward from another hospital, the one where the op had been performed, and had come on a special orthopaedic bed. This had been quickly swapped for a standard one - things disappear in hospitals, where a constant cadging goes on. The replacement was shorter and Rob's feet tended to touch the end board, something to be avoided while his back was healing.
He also had problems with sleeping (so vital to recovery) because he had long suffered from apnoea. He owned and had brought in a tabletop CPAP machine (one that gently assists breathing during sleep), and asked staff not to disturb it as if accidentally jolted, the water inside would spill into the tube and cause a blockage; which is what happened, repeatedly. I notified the nurses at the admin point round which they tended to cluster, and they in turn called for someone else to sort it, a nice chap who used a hairdryer on the hose and got it working again; till next time.
There is no point in mending someone’s back unless you help them to use it. One of the surgeon’s aftercare instructions was for Rob to be moved from his bed daily to sit in a chair for a couple of hours. In order to shift him safely, a hoist was brought in; on the couple of occasions on which it was used, his toes got banged painfully on the bed’s end; but generally it didn’t happen at all, so he lay day after day in bed, getting thinner and weaker.
He wanted to keep up his strength, not least for archery, so I brought him a spongeball to squeeze. A week or two later, it vanished from the windowsill beside him, together with the newspapers and magazines I had brought him to keep his mind active; must keep the place tidy. A modern theme is the drive to tidy away the old, isn’t it? Get them out of their messy houses and the inconvenience of daycarer visits, uproot them from their memories and autonomy and put them into care homes, for their own good.
It won’t surprise you to learn that Rob didn’t feel safe where he was, and wanted to go home. Oh, the difficulties this would cause! Surely his wife wouldn’t be able to manage his needs; a room would have to be made ready, and an adjustable bed supplied. Well, Rob had a brother, a formidable man, and these impossibilities were overcome.
Another complication was the need for a hoist, to do the chair bit that the hospital hadn’t been doing. One was sent, but shortly afterwards his family were told not to use it, since they hadn’t been trained. There it stood in the corner, useless.
Meantime, the cancer was slowly spreading and a drugs regime had to be supervised. Another communication blip: one powerful painkiller required another pill to counter the consequent constipation, and when the type of analgesic was changed its partner laxative wasn’t cancelled at the same time. Rob’s dear stepson was an angel to him.
In the last week or two, Rob was moved to a hospice where I am sure he was cared for appropriately. The second time I visited, political weekly in hand, he was apparently unconscious and breathing in the laboured way that suggests the end is near. I’d had to go after a while, but his family were notified and he didn’t die alone.
I wish I had held his hand.
A tragic story well told, but how many of us have broadly similar stories? The NHS needs to value its patients, but as an institution it seems unable to do that.
ReplyDeleteIndividual doctors, nurses and admin staff may or may not value patients at a personal level, but the institution they work for doesn't and apparently can't. This seems to affect some staff but fortunately not all of them.
We may have another story developing now. Doctor A brushes aside obvious symptoms and two years later Doctor B goes through the notes shakes his head over every page and hurriedly pushes the case forward.
And here in the US we often have the same production line mentality in healthcare, combined with the prospect of going broke as a result of the treatment as well.
ReplyDelete@AKH: my late GP friend used to point out that doctors can bury their mistakes.
ReplyDeleteJD comments:
ReplyDeleteI see you have posted your NHS story at TCW where it has attracted a few comments. I was also watching this yesterday - https://youtu.be/YqM6HHFdba0 She is talking about how doctors always seem to focus on bad news rather than good news. Almost the first thing she says is "..our bodies are powerful and can heal anything" which is true of course and is helped by being positive instead of sinking into 'woe is me' type of thinking. I continue to question doctors and nurses when they tell me to take this or that pill. I am a nuisance, it is one of my hobbies!
There was also this which was even more interesting - https://www.francisberger.com/blog/they-will-do-everything-in-their-power-to-ensure-the-choice-is-yours
So the threat of compulsory vaxx for NHS staff is not going to happen. Even in Austria they are holding back as Francis Berger points out.
@JD - I was just reading a piece on assisted suicide by the conservative columnist George Will. He quotes a British study where doctors overestimated the remaining life of terminal patients by 500%
ReplyDelete