Nursing by numbers - sorry, wrong number

In a rare idle moment, I saw this article on the BBC news website http://www.bbc.co.uk/news/health-11097822 It's all about fears that elderly people getting malnourished in hospital. I'm afraid it got me rather angry. This is simply a different manifestation of what Mencap found in their 'Death by Indiference' report on people with learning disabilities in hospital. What really got my ire up was the perennial assumption, seemingly by all concerned, that this could be solved by monitoring and procedures - introducing red trays etc. for people at risk.

Monitoring and procedures are not a substitute for care. People's conditions change, procedures don't always get implemented accurately, individuals fall through the gaps - and die. You'll be aware of my abhorrence of nursing by numbers and how hospitals are bad for people with disabilities. I don't blame the individual nurses - bless them, there are precious few around these days. The people visitors and patients take for nurses are actually nursing assistants in the main (or care staff in the community) who, because they have limited training, need the procedures to do their job. We've actually had one agency nurse say to us that she 'didn't do care - she had the nursing assistants for that' - she was only used to manning the nurses station, dispensing medication and ward/nursing home management. Our own package uses nurses precisely so that they have the skill and judgement to use their discretion, but they are now working under so many protocols, procedures and guidelines that we have to intervene when the rules work against his best interests.

Example - protocols state that if he has a fit lasting over 5 mins. give chloral hydrate. He almost always has a fit on waking. At present he has a chest infection. Result of chloral being given is that he was knocked out for over 12 hours - no coughing. Physio and PEP attempted by nurses but as it caused his O2 to fall initially, not proceeded with. He would have re-consolidated and ... draw your own conclusions. Upshot is that we had to go round and do physio and PEP ourselves, result lots of gunk removed from chest - all's well, (not quite all) with the world. Everyone knows the protocols don't work but they have to follow them or their nursing PIN number is at risk.

I know it's about resources - but that doesn't make it acceptable. There was another situation last century where the defence 'I was only following orders' was deemed unacceptable - it seems now to be the normal and only basis for action in this context. Mencap and others have raised this issue already. It isn't more rules that are needed - it's more people giving care. I wait in apprehension for the headline 'Old lady dies because she was given wrong colour tray.'

Rant not over - it's not over until the thin lady dies.

Normal - ish service will be resumed

Apologies for my absence. My wife had a sudden hospital admission, so along with shopping, meetings and other non essential activities (unlike caring, cooking, visiting hospital and housework), the blog had to stop for a while. Normal service probably never existed, so can't really expect its return any time soon. Anyway, she's now recuperating at home and supervising care services and domestic activities - it's at times like this I start to realise how little I actually contribute.

Meanwhile, our sons services sort of carry on. A nurse with one service calls in sick, so the other service picks up slack because the contingency plans are still not working. He missed a bit of his activity that day but got an unexpected lie in instead, otherwise he seems to have sailed through things reasonably - including a visit to his mum in hospital, which he slept through 80% of. Some care quality issues with an agency nurse (some are great, some not so great.)

This afternoon it looks like he's developing another chest infection, so back on the antibiotics. He's done really well lately, with a four/five week break since he last needed them. It may well explain why he's been having a few more longer fits at night that we were starting to get concerned about. The discomfort would have been enough to trigger them.

Anyway, back on the treadmill - need to find out why newly appointed nurses still not coming on stream - probably CRB checks.

Doing it by the book

Epilepsy is a very individual thing to manage - and we currently have a bit of an issue around his epilepsy rescue medication - when to intervene with what. The protocols we've had to work up run to about six pages and cover a series of escalating drug interventions and are designed to keep him out of status (continuous, intractable fits). He's never been fit free but on an average day has about 5 to 7 fits that we don't react to. It used to be that the nurses used their training and clinical judgement to assess when he'd had too many fits, or they were getting too close together to become a problem. But in these days of 'nursing by numbers' it's all spelled out in fine detail, so that if he has one fit lasting a certain time, or a series of 3 in a fixed period, they use drug A, and if that doesn't stop them in a set time, they go to drug B etc.. Things have got so complex and prescriptive that the nurses are now questioning whether the specified times include just the fit itself or also include the recovery time. I think it's far too prescriptive but have a lot of sympathy with them, as they are at risk from CQC and the PCT, and potentially could lose their registration if anything goes wrong. CQC and the PCT insist on everything being protocoled, taking away all the clinical judgement and the nurses ability to act in his best interests. I'd be far happier with a real 'no blame' culture where the nurses could decide for themselves what treatment was right for him, balancing out control of his fits with his quality of life. We could stop him fitting tomorrow - he just wouldn't be awake or have a life, and he'd probably succumb to a major chest infection quite quickly. But to be 'safe' they have to keep to the protocols - so now we have to have another meeting to fine tune, micro manage the trigger points on paper, rather than seeing how he really is. It seems more important to be seen to be doing it right than actually doing it right in practice.

His epilepsy protocols are just one set - he has similar things for gastrostomy (feeding direct through stomache wall), oxygen, various PRN (as necessary) medications, hospital admission, antibiotic use etc. etc.. We wouldn't trust a nurse with him unless we (and they) were happy doing his care. The paperwork seems to exist largely to cover the back of the PCT. They say its because they have a 'duty of care' but the reality is that we don't actually have protocols for airway suction because ' it's still with the solicitors'.

I'd be much happier if the nurses could be allowed to nurse and we could concentrate on giving him a life - as it is we'll all have to spend even more time making up forms so that they can tick boxes in them and the PCT has someone to blame if it doesn't work.

Picking up pieces is a serious business

This was going to be a run of the mill post about bits of equipment breaking down etc. but life has a way of tripping you up just when you thought you'd tied your shoe laces really well. A medical emergency outside work means his day nurse is suddenly unavailable this morning - don't worry, the contingency we insisted on last time (and the time before) will kick in and all will be well. Er, no. No contingency yet again - lots of kerfuffle and eventually one of his other nurses agrees to fill in part of the day, after his night nurse has stayed on for excessive hours to cover. (This is why we need all the goodwill we can get with the nursing team.)

Oh, and in the middle of this, wheelchair services decide to bring his 4 o clock appointment forward to 1 o clock at no notice and the day gets even more complicated. We pick him up and cover the parts of the day the nurse can't (because understandably, she has commitments with her own family) and hand him back for the next shift.

We know the original nurse is unlikely to make it in tomorrow (because she's texted us telling us what the problem is herself) but if anything has been organised about his care, no one seems to know what, and they've definitely not told us. So current plan is for him to go into his day service as normal, and if there isn't a nurse there, he'll come back to us.

I've paid my electricity bill, so setting the fan off for the s**t to hit it tomorrow should be no problem at all.

Oh, and some of the broken equipment got mended and the bits that didn't we had to find temporary replacements for - because nobody else has.

God help us if we'd been on Direct Payments and had to organise even more of this than we have. One day, we won't be here - and one of the critical pieces won't get picked up in time. If he's lucky it will just mean pain and/or distress. If he's unlucky, he'll die. I'm not sure which is the best outcome. (This is not a joke or me being melodramatic, I really don't know.)

P.S. in the middle of this, my mother is ill (she's 84) and lives 25 miles away. I really don't like choosing between my son and my mother.

Risk mismanagement

On the one hand we get a message that the nurses want my sons fit reaction protocols redrafted (6 pages of protocol) as they think they may be interpreting them differently from one another. On the other hand, when we check what the protocols say, we discover that the last one we got changed officially three months ago, hasn't been updated in any of his files.

I'm not so annoyed about the failure to update the files as you might imagine. What really irritates me is that we have to have these prescriptive, fine detail protocols in the form we do. They are the ultimate in 'nursing by numbers' and in my view, take away the discretion nurses have to act in the patients best interests. These are after all, fully trained and registered nurses with accepted qualifications as well as a battery of specialised training competencies. I don't have a problem with written guidelines, but when what nurses can do is spelt out in such fine detail, I can't help feeling that it's less for patients benefit than to protect the commissioners etc. from being sued. It doesn't even protect the nurses particularly, but it does give the authorities someone to blame if an error occurs. It all seems to be part of the beaurocracy of 'protection' and 'risk aversion' that prevents anyone from using their own judgement and taking any responsibility for their actions. Authority no longer seems willing to trust the people it employs. And the reality is that life carries on in spite of it.

CRB checks are mandatory but take three months to come through and don't actually prevent anyone wanting to abuse vulnerable people from doings so. Risk assessments get used to exclude disabled people from doing anything remotely exciting or interesting. Nurses have to comply with detailed protocols even though simple admin errors mean the protocols are actually out of date and incorrect. These things don't actually help to provide better care - but they do make it easier to find a scapegoat when things inevitably go wrong. Things do go wrong in life - shit happens. The aim should be to avoid the obvious blunders, recover the mistakes and trust people sometimes.

Once more into the breach dear friends

So what happens when a nurse, for very good reasons, has to ring in just before her shift to say she won't be able to get in? Well, in an ideal world there would be a contingency plan - and there is - and it doesn't work - again! This time we didn't step in to fill the breach ourselves, as usually happens. Because nobody told us it had happened - we only found out when we rang to see how he was. There was a fallback but in our view it was inadequate, so brown stuff hit fast rotating object again. Fortunately all was well and he behaved himself for once.

Our package of care predates the 'Personalisation Agenda' - it doesn't need things like Direct Payments to get a Person Centred Plan, even under the old systems - they just make it hard (translation - impossible). If we'd had Direct Payments we'd have had to organise all this as well as doing his care and I don't think we could cope with that level of admin. as well as the medical etc. care. There's no allowance for recruiting, staff admin., contingency cover organisation etc. - Personalisation for us would mean care on the cheap (for the authorities). It would save them money, because we'd have to do the extra work. The reality would be that we'd step in all the time - unpaid.

Public stress and private stress

I have to go and shout at some people tomorrow - and I don't really want to. Shouting is stressful but it's usually the only way to get the NHS, Social Services etc. take you seriously. This particular shout will be about the fact that the plans for future learning disability services here take no account of people with complex care needs, unless it's about targeting cuts for what are perceived by the treasurers as 'expensive' care packages. They're expensive because they are the most needy and they're still a damn site cheaper than they would be without the free work provided by carers.

At a more personal level, the stress factors are different but no less real. We've had 27 years as primary expert carers, but because we have no official qualifications in the eyes of the service providers we get put in impossible positions. (We do both incidentally have relevant experience and qualifications - in nursing and social housing but as carers these don't count.) When my son is severely ill we inevitably become the nearest thing he has to a 'clinical lead' but it's all unofficial and the nurses often feel uncomfortable or even threatened by it. We find ourselves thinking about how people are going to react when what we need to do is concentrate on what needs to be done. And then we get criticised for 'not letting go' and letting the professionals deal with him. After 27 years, it's the equivalent of being made redundant from a job you're 100% emotionally committed to. I'm afraid we're likely to upset some people we need desperately because we are very focused on my sons needs - it isn't that the team aren't dedicated, but he isn't their son and they go home at the end of the shift, have holidays and can resign. We can't - and don't want to.

Filling the nursing gaps and looking back

Had a really good weekend. We have an old workhouse near where we live that I've done some research on, and this was the weekend we'd persuaded the local archaeologists to do a quick 'Time Team' on it. We do actually have a life as well as being carers. We got stuck in with them and had a really interesting Saturday - Sunday was a bit restricted as we had to collect my son as no nurses available to cover the shifts, but he seemed to enjoy bumping around the field and the fresh air. He wasn't too impressed with having to get up for a 9a.m. Sunday start and going back after his bath at 10p.m. but I think he had a good day.

It's a bit strange researching a workhouse when you have a disabled child. Back in the good old days of Mr Dickens and Queen Victoria, when Britain became Great Britain, my son would probably have ended up there, if he'd survived at all. Their official classifications of mental disability and illness were a bit less PC than ours - deaf & dumb, imbecile, idiot and lunatic. One day I'll grit my teeth and look up what they actually meant. Thank God for the NHS - even if it can't get his shoes sorted out. Those were the days when things really could only get better.

Musings on hospitals and packages

Just been on a viral leafletting expedition leaving job adverts for nurses in places they might actually see them - I have to be circumspect about this - see previous posts. It felt quite strange going into hospitals on my own knowing I wasn't visiting my son, there for an appointment with him, collecting his equipment/drugs etc. I could do things at my own speed and not have to sit around in waiting rooms for hours. Odd how a familiar place takes on a different perspective when you're there for an unusual purpose.

Meanwhile, back at the care package negotiating table, we've decided to try and get CQC to meet us and thrash out the problem of re-registration forcing a deterioration of our care package. It's quite worrying how in awe of CQC people seem to be - to the extent that you can see the tone of fearful deference entering the conversation when people talk about them. I know they often hold the biggest stick possible to beat recalitrent providers over the head with, but in the end they are are just another public servant manned by human beings, so have a responsibility to be approachable. I suspect they are, so I've asked for a meeting - maybe they're reasonable as well as human(?) I'm very conscious that I'm in a priveliged position as a carer in things like this. I'm allowed to be stroppy where a service provider isn't - it's an odd role reversal for once.

Hands off our nurses

The nurse recruitment saga continues. We're having difficulties getting nurse applications, mainly because it isn't your standard ward nurse job and as a one client team, we're too small to be seen by most nurses. So whats the obvious thing to do - advertise where most nurses work - hospitals. Oh no you don't says the hospital manager. They're our staff and we're not letting you poach them.

Now what we're talking about here is two part time staff - it's hardly going to close down the hospital if we're successful, and anyway the care package is ultimately funded by the NHS. But it gets better - the hospital trusts (in charge of the hospital) won't talk to the PCT (in charge of community care/nursing). Meanwhile we're two nurses down (half my sons contracted team) and nobody knows (or cares) about us.

I think there's going to be some 'accidentally dropped' leaflets quite close to the hospital noticeboards soon.

Where are all the nurses?

We have a small nursing team - great people, just not enough of them. Of the four contracted posts one gave up work and another was injured, now another is going on holiday. They are entitled to change jobs, have holidays and have accidents and I don;t begrudge them at all. But can we get replacements? We can't even get applications for the jobs. It isn't standard nursing but it is rewarding but it's almost impossible to get visible to nurses looking for work when the local hospitals etc. won't allow you to use their noticeboards or networks to advertise - they're afraid we'll poach their staff! It's the NHS that's paying anyway. Anybody out there looking for work?

Shoes and nursing

So, my son needs new shoes. But he needs special ones, we've been trying to get them made for at least two years now. He has three pairs - sandals, not ideal in winter, one pair that damage his toes so he doesn't use them and one pair that are two inches too long. So he has to wear them or his slippers. His new ones have been measured three times and arrived wrong each time, the current attempt is being made for the NHS (National Health Service) in Lithuania and won't be back in Sheffield (why Sheffield it's 80 miles away?) for another 2 weeks. Maybe they'll fit this time?

He has a care package but we've just been told the registration doesn't allow the nurses to work at our house - so major meeting next week to iron out what to do. He comes home if he's ill to keep him out of hospital - so just when he needs nurses, he can't have them. Oh, and if he comes home that also means we have to do the waking nights as well as days - he has fits and needs his airways cleared at night as well as during the day. So much for sleep next month.