The Liverpool Care Pathway seems to be in the news at the moment. I suspect that many of us have had experience of the system even if we haven’t heard the name.
Now, I have been a carer for over a decade. My husband had a massive stroke in his mid forties (no, he had never smoked; no, he wasn’t an alcoholic; yes, he was stressed). He is paralysed down one side, permanently in a wheelchair, has major problems in communicating but, despite the inevitable frustrations, lives at home and does ok.
A few months ago, he had a stomach bug. Post stroke, the muscles in his throat are quite weak so if he isn’t very well, he has problems swallowing. This means that he is in danger of dehydrating and he then loses interest in food. He was admitted to hospital for a few days so that he could have a saline drip. When he came back home, he may have been rehydrated but it was obvious that nobody had been giving him any food that he could eat.
We struggled on for a few days with him nibbling at meals one day and not the next; but when he began refusing cups of tea, he had to be re-admitted.
And that’s when things started to go wrong ….
I earn my living as an accountant and have to spend some time doing things like Continuing Professional Development, so I was away the day after he was admitted and couldn’t visit him until the evening.
He looked terrible: more alarmingly, he had a notice over his bed saying “Nil by Mouth”.
There are four main criteria for the Liverpool Care Pathway: the patient is bedridden, comatose, can’t hold a conversation and can’t swallow to take tablets or liquid. My husband was ticking two of those boxes without even trying and, hardly having eaten for two weeks, was rapidly heading towards the other two.
I had come prepared with food (well, a yoghurt). I had an argument with the tea lady and with the ward sister. I fed him and demanded a cup of tea for him and was sufficiently determined that they finally gave way. He subsisted on baby food and chocolate mousse for the rest of his stay, although relations with the ward never rose much above frosty.
He came home ten days later, initially very weak but just now sitting in the kitchen with a glass of wine, listening to jazz.
If I had not been there, I have no doubt that he would have progressed down the Liverpool Care Pathway and would not have left hospital alive.
How many people complete that pathway because they have no family to fight for them, or because their family believe the doctors, or because they have not had as much experience as I have had, sitting around hospitals for the last 12 years?