Things can only get .... better ?

Gradually getting on top of things. Agency nurses who know him, now doing sons day care until things get sorted out. We did part of yesterdays daycare ourselves with a substantial part being picked up at no notice by one of his 'bank' nurses - if this wasn't an anonymous blog I'd thank her by name, but she knows who she is - a star. Suction machine seems mended, wheelchair services are looking at kerb climbers (but it'll take a month or two), new intercom on order and temporarily replaced by loan from us. Mum still unwell but sister keeping an eye on her.

Unfortunately, son looks like he may be developing another chest infection, oxygen saturation was low yesterday evening and he's been having some longer fits last few days. My wife took him to GPs to discuss treatment this morning and he's back on antibiotics (only managed 5 days off them this time). We're afraid he might be developing a consolidation on one lung again so it's all hands to the physio pumps to try and stave it off. We're very lucky having a superb physiotherapist (not NHS, employed by his service provided) and he's trained us and the nurses in a range of techniques. Unfortunately, it's hay fever season and due to poor swallow reflex, it's a 50/50 chance whether the secretions go down his airway or his digestive tract - hence the need for suction.

On the upside, GP has agreed that my wife can be 'clinical lead' in his care formally. The lack of anyone in that role has always been a bit of an issue - not sure how the care provider organisations are going to react yet. She used to be a ward sister before the children, so although her registration has lapsed, she's been 'de facto' clinical lead most of his life. If it hadn't been for her skill he wouldn't have got anywhere near this far but it's hard getting 'professionals' to accept it. Although she doesn't have a current NHS PIN number, she does have 27 years specialist experience on top of her general nursing training and is actually better qualified than the rest of the nursing team. There isn't really a status of Expert Carer, but there should be.

Nursing by numbers

Once upon a time we had a really good relationship with our nursing team - we were an equal part of it and any issues got sorted out informally. But now everything has to be recorded and be seen to be done 'right'. We have to have written protocols for everything - even cutting his toenails. I know we don't like it, I'm fairly certain the nurses don't like it and I'm not even sure the managers like it. I know it's well meaning and supposed to ensure that mistakes don't get made but it actually feels more like it's there to protect the authorities from being sued than for giving my son a better service. The nurses can no longer use any discretion and seem terrified that doing anything outside the written protocols, even if it's in his best interest, could lose them their nursing PIN number. The result is they have to get someone else - usually us - to 'sign off' any departure. He gets a less responsive service, the nurses are unhappy and feel devalued, and we have to take responsibility for everything - even sometimes things we're not happy with because the alternative is worse. I'm not sure who really benefits from this litigation/blame culture but I do know it's a real step backwards and discourages people from 'caring' in the simplest form of the word.

'I was only following orders' is generally accepted as a discredited excuse. 'I was only following the protocols' needs to go the same way.