Better Care Together – Or Is It?

Katyboo1's Weblog

I don’t write much about my health campaigning on here anymore, but I am moved to do it after attending a meeting last night about the future of healthcare across Leicester, Leicestershire and Rutland, or ‘where I live’, as I like to call it.

Let me set the scene.

Three years ago, when I started health campaigning it was a steep learning curve, particularly with relation to all the acronyms flying around. The favourite at that time was BCT which stands for Better Care Together. At its broadest it means that hospitals are trying to push care back out into the community in order to try and manage the increasing number of largely elderly patients who are currently and will continue to take up hospital beds. Right now, across my region they estimate that between 15 and 33% of patients in hospital don’t actually need to be there. BCT wants…

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Why May’s proposals could be particularly worrying for carers.

IN 2011 we had the Dilnot commission. Alongside the means tested asset threshold, they recommended a lifetime cap on individuals’ social care costs, at the time £72,000.

The current proposals have adopted the means tested asset threshold but have omitted the lifetime cap on an individual’s social care costs, which is why it is being dubbed a ”dementia tax”.

I tried to do a little chart to show the effect on various sizes of estates and lengths of time needing care and the percentage of the estate that would be left.

needing care for: 6 months
pre care estate 99,000 150,000 200,000 250,000 500,000
care costs 25,000 25,000 25,000 25,000 25,000
post care estate 99,000 125,000 175,000 225,000 475,000
%age left 100% 83% 88% 90% 95%
needing care for: 4 years
pre care estate 99,000 150,000 200,000 250,000 500,000
care costs 200,000 200,000 200,000 200,000 200,000
post care estate 99,000 100,000 100,000 100,000 300,000
%age left 100% 67% 50% 40% 60%

@ChrisGiles_ writes in the FT on the differentiation between vertical equity and horizontal equity. Andrew Dilnot here himself has written on the unfairness of the proposals.

My perspective is that of a carer, an aspect that has not been mentioned much in the debate. I have looked after my husband for the last sixteen years. We are still under pensionable age (although only a couple of years off now.)

I try to work at the same time as caring but have made myself ill on at least two occasions; work stops if either I am ill or my husband has complications. If he has to go into hospital, most of the income we rely on ceases. We still have a mortgage to pay. I have not been able to save for a pension. We have survived because both our parents were able to leave capital. My father hardly spent money for the last three years of his life because he was so determined to leave me as large a buffer as possible. And yet I know how lucky we are to have that and how many people do not.

I am reasonably fit and healthy and in the scheme of things will probably outlive my husband. So, as a carer, what will happen to me then? Will there be a charge on our house against my husband’s care costs? Will I be put under pressure by the local authority to move into a home? Will I have any choice where I go? I am sure that all sorts of promises will be made but can I really have any confidence in what will happen ten years or more down the line?

Finally – I have joined a political party.

Whether through conviction or indecision, I have always been a tactical voter. I have voted for all major parties and one or two minor ones – although in a General Election, never for the Tories and only once for Labour (swayed the first time around by Tony Blair). In Stirling, I nearly voted for the SWRP, on the basis that it was probably the only chance that I would get, but some kind of sanity prevailed and I went for SNP instead. A candidate I voted for having won by a margin of three in a local election, I am convinced that turning up at the booth is important. I’ve given up on all that: I have joined the Green Party and if I ever suggest supporting anyone else, please will somebody remind me of the last few weeks and months. I am told that they have no “traction” (yes, I agree, Clare) but at least Caroline Lucas, like Nicola Sturgeon, seems to be a woman with a plan and her broad coalition of the left seems to be our only hope of holding the government to account. At least I will be able to vote with a clear conscience.

Standards of Care

I care for my husband and work from home at the same time. This isn’t easy and I rely on fantastic home carers who come in several times a day. They are totally reliable; they are cheerful; they make him smile when I can’t. I know how lucky we are.

Five years ago, a care home took J. in when he was discharged from hospital following a second severe stroke: he was judged to have too many needs to be looked after at home. I watched him improve under their care until the day he was well enough to come home – with rather a lot of help in place.

He goes back there once a week for an overnight stay, so that I can have a day and a half to do all the things that I can’t do from home: everything from client meetings to dentist’s appointments.

Care at home and care in a home are very different. Once a week I hand J. over to people I hope I can trust and walk away.

The care home and I might have had some small differences over the years but our relationship goes back a long way and on the whole, I have been confident that they will give him the best care that they are able.

So it is with alarm that I am beginning to see things that ring alarm bells:

  • – coming home sore because he hasn’t been changed often enough
  • – coming back with incipient urine infection because he has been trying so hard not to go when he knows he will not be changed
  • – bringing his used clothes home, all bagged up but stinking of urine
  • – scratches and grazes on his shins and calves, one so deep that it has taken three weeks to heal

Things are tightening in the care sector.

There is pressure on occupancy rates, putting additional pressure on staff; it also has a knock on effect on carers in the community because there are fewer respite beds.

Several local homes have moved from being nursing care homes to residential care homes, where they do not have to offer any nursing provision. This is obviously cheaper. But who wants to move an elderly parent when they are deemed now to require nursing rather than residential care? It seems unnecessarily harsh on frail and vulnerable people at this stage in their lives.

Can we stop always blaming workers who have to work extremely hard for minimum wage and recognise where at least some of the blame lies: investors who require that care homes have to operate at ever tighter margins to maintain or increase profits (yes, that’s our pensions).

One day it’s going to be us having our knees skinned as our carer manoeuvres our wheelchair.

Liverpool Care Pathway: part 2

I have been present at end of life care before. I have sat with both my parents while they were dying, once with my father and the second time alone.

Although she had been ill a long time, my Mum was in the supermarket one day, in hospital the next. We would all have agreed that intervention was not appropriate and she died three days later. The care was efficient and sensitive, if rather impersonal. It was, on the whole, as good a death as possible. Food and drink were not taken for the last 55 hours, appropriate but still longer than the 29 hours given as average for those on the Liverpool Care Pathway.

It was harder for my father, a month in hospital followed by a month in a hospice. The hospice was lovely, a beautiful building in stunning grounds; the food was excellent and the staff charming. The problem came after he had been there for three weeks, because he was judged well enough to leave. Where to? I knew I couldn’t give him the full attention he needed and yet he was desperate not to go into a care home. He wanted to stay where he was; 88 years old and terminally ill, he couldn’t cope with the thought of moving into the unknown from somewhere he was comfortable. After two months in pyjamas, he dressed as smartly as possible, put his notes in a briefcase, tried to look heartbreakingly professional for the care meeting; but it was his last lucid day. He took a serious turn for the worse that night.

No longer able to eat or drink, only semi conscious, he became very agitated. I was told that this was a normal stage of the dying process. The nurses thought he was near the end but he lived for a further week in severe pain and, when he broke the surface of consciousness, very distressed. The nurses administered as much morphine as they were allowed but although his suffering was reduced, it was by no means eliminated. I spent all the last week with him, either in a spare room or in a chair next to his bed. His heart never gave out but beat strongly until the end. It wasn’t a peaceful death.

In these circumstances, I do not understand how much morphine can be too much.

There has been much debate about assisted suicide but far less about end of life care, which will affect us all. We have to engage with death: it is far too complex to be left to the professionals.

We must also acknowledge that there is a connection between end of life care and the interface between the NHS and social care in the community.

Liverpool Care Pathway: part 1

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?