Involve carers in older people's care for the best outcomes

Older people with dementia are often living with frail husbands or wives; sometimes both have dementia. A Local Government Commissioner's Report (done with the Health Service Commissioner) on a case in Kirklees (in West Yorkshire, it covers the towns of Dewsbury and Huddersfield and smaller towns in between) shows how difficult it may be to deal with such situations, but how supporting the family's involvement is crucial.

In 2009 the husband (with dementia) was admitted to hospital with acute glaucoma, probably caused by a blow from his wife, whose dementia was also showing up. There seems to have been a safeguarding investigation, but it was never followed up, and the husband was shot out of hospital with no protection. This is not a big surprise to anyone familiar with health and social care: hospitals dealing with in-hospital decisions, especially if they need a bed for someone else, often know nothing about and therefore take no account of the home situation in their decision-making. If they employed or even liaised with social workers, they might know more about what's going on in their patients' lives.

The wife's symptoms worsened, and she was admitted to hospital: her husband went into respite care. Their son, a doctor, fixed up a private care arrangement for a nurse to provide home care, but the health trust and the local authority decided this was inadequate (without consulting him) and issued a Deprivation of Liberties order to authorise themselves to keep the husband in respite care without his consent. The health trust also took it upon themselves to write to the son telling him he should put them in separate homes, and sent a copy of the letter, presumably following the usual transparency guidelines, to the mother, causing her great distress.

The Local Government Commissioner said:

...the couple were denied the chance of living at home together in a settled lifestyle for longer than they did. The couple suffered a needless loss of dignity, while their son felt ignored, undermined and excluded from any decision about their care.

and the Health Service Commissioner said:

Involving their son could have led to better outcomes for the couple. Families and carers can have the key to understanding the needs of their loved ones. That’s why public services must, in law, involve families and carers in making life changing decisions for vulnerable people.

Utterly reasonable, and in addition to apologies, reviews of their practice and financial compensation, the trust and the local authority also agreed to review how they implemented their complaints policies, so presumably they told the family to buzz off when they complained, too.

Link to the Local Government Commissioner's (Ombudsmen) Report.

Are women and ethnic minorities getting protection against deprivation of their liberty in hospital and social care?

Older people should be interested in the Deprivation of Liberty Safeguards (DOLS), because most of the people affected by official decisions to deprive them of their liberty under the Mental Capacity Act 2005 are older people affected by dementia, as you can see from this chart, published in the annual report on DOLs by the Health and Social Care Information Centre.

What this bar chart also tells you is that the rates of application are the same for men and women (the rates are per 100,000 in the population), but I think they shouldn't be because most applications are about older people and most older people are women: are men getting a disproportionate amount of protection from being deprived of their liberty?

And if you look at ethnicity a lower rate of white people are  affected by applications than the total rate of all other ethnicities, when white people are massively predominant in the population. Are agencies more prepared to make applications for the depriving non-white people of their liberty?

The law on DOLS is a bit hazy and the procedures are confusing, so it's not surprising that DOLS applications are still not hitting the expected rates, even after several years of the Safeguards being in operation. Numbers of applications are going up every year, although the rate of increase has slowed. That suggests that there are probably quite a lot of people who are being deprived of their liberty (although restriction of liberty is OK, so long as it's not continuous and heavy - that's one of the confusing thing about the law), and who are not getting the protection of the assessments that the Safeguards require. You can get some clue to this, by looking at the reasons applications were not granted. By far the most common reason was that nobody had done an adequate best interests assessment, so health and social care agencies weren't really looking too carefully at the best interests of the people they are supposed to be caring for.

Most of the people affected will be in hospitals and care homes. The Safeguards require health and social care organisations, that are depriving people of their liberty as part of caring for them, to carry out an assessment of the decision (or lack of decision) to do this. Mostly this is hospitals and care homes preventing people from leaving or pursuing their normal lives, mainly because there are fears for their safety where people cannot make decisions for themselves. The Safeguards require a 'best interests' assessment to be made by the professionals involved (is it in someone's best interests to be derived of their liberty?) and an independent element in the decision-making.

It's obviously still not working too well, and I'd be worried about the covert reasons why a decision is made or not made to apply for a DOLS authorisation. On the one hand, I think care homes and hospitals get themselves into deprivation of liberty situations trying to do their best in caring for people without thinking too clearly about people's rights and liberty. The affects mainly older people often without a lot of support from friends and relatives. On the other hand, I think they may be choosing to make applications when they are worried about being criticised or gong through a bad time with a particular resident or patient, rather than consistently thinking through whether their care for someone actually deprives them of their liberty.

Link to the HSCIC Annual Report on DOLS.

Big care services can be human, even if they are not small and local

I I'm always irritated by articles by top people in commercial organisations, when the main purpose of publishing it seems to be to promote how enlightened they and their organisations are without of course doing anything vulgar (and expensive) like actually advertising (the puff for the writer's organisation is about halfway down this one). However, this recent article on The Guardian's website makes an interesting point. It suggests that social services departments in commissioning services find it too easy to contract with big providers, rather than smaller, local services that might be a bit more human-sized and responsive to local circumstances. I actually think that it's possible to over-egg the argument about local is best. Expertise, flexibility and responsiveness is best, and professional services can do that if they're well-run, big or small. 

 Link to Guardian social care article

Moving to a care home with dementia

This is a post on the Demention blog, about a male carer and family looking after a mother with early onset dementia. This is about moving into a care home, the doubts, decisions and eventual success. It shows what can be valuable about care home care, although it does not discuss directly some of the disadvantages of a move with dementia that professionals might raise. However, here it is being done at a fairly early stage of the patient's progression, and it shows what efforts were made to connect her with her life history.

Link to the Demention blog post.

Private care home: rust-stained extended old houses are a reversion to the past

Another of my occasional pictures of facilities for older people, in this case, a care home in south Sutton.

It is typical of many private care homes both in its location and in the building. South Sutton is the formerly classy area of this suburb, on the southern border of London, merging into Surrey stockbroker belt. Some of this area still contains giant houses worth from a half mill to £2m or so, with extensive grounds. When we moved here ten years ago, an estate agent looked us over and said: 'Well, you'll be wanting to look in south Sutton, won't you?'

But nearer to the town centre, the big Edwardian houses are multi-occupied, or knocked down and replaced by larger blocks of flats, or simply converted into flats or, the concern of this blog, translated into care homes.

Here is an unprepossessing example, with the off-putting rust stains on the outside cladding and the bizarre design presumably cramming more rooms into the site than the big old house that previously occupied it. Looking at the side of it, it seems to have been extended both front and back. Domestic scale and Edwardian style are lost.

Because of its building, this is not a care home that can make nostalgic claims of connection with leisurely Edwardian gentility, or of convenient modernity. Local authorities, when they ran residential care, gave up the inconvenient and mobility-inhibiting conversions of large gentlemen's residences and went for newbuild on grounds of efficient service provision and convenience and independence for residents. A lot of the large-house converted private sector care homes are an uninspiring reversion to the past.

The aim of active retirement is only to put off deterioration. Discuss.

The niggle has become a clarity.

I’m now approaching the anniversary of my retirement; it’s been a year. I was planning to write about how I was experiencing retirement regularly, but I haven’t, because I haven’t had anything to say.

When I got to the six-month mark, I started to write, but did not think it worth publishing. This was it: ‘The new time structure that I remarked upon at three months is quite ingrained: daily organ practice, daily work on writing or blogs, with greater pressure on the writing as deadlines approach, and occasional ‘real’ retirement days of going out etc. Of course, I’ve just experienced Christmas and New Year, which connects us up with the wider family.’

And there I ran out of things to say. Thinking about this, I had the vague feeling that there was something hanging about in the back of my mind about ‘the next change is when I die’. But that seemed overly dramatic, I couldn’t grasp the niggle that was twitching there, so I let it be.

Then Margaret fell out of the loft and broke her collarbone, the electronics on the church organ phutted and the ‘ingrained’ routine deroutinised. I spent a few weeks chasing round over treatment for Margaret and her two nights in hospital after A&E and for a titanium plate being inserted in her shoulder. I’ve spent most of the last six months doing more in the kitchen and around the house because she has had residual back problems, and is improving only slowly.

 

What this has made clear is the risk that as physical things happen to us in old age, the outcome is an extra bit of incapacity. And you can see the incapacity inexorably leading to less mobility, more problems until, perhaps ten of fifteen years hence, fading away towards exclusion from the active world and death.

So I want to defend myself against events, such as falls and illnesses, that will move that process on. And I feel I want to keep on walking rather than busing, doing things rather than relaxing, continuing to write books and articles rather than staying with the easier stuff like blogs.

Is the objective of an active retirement only to put off deterioration and death? I’m now clear that is the question that is creating the niggle, but I don’t know the answer - yet. I wonder how others feel about it.

After the grandchildren...

'And the little one said...' The spare room after some of our grandchildren visited. Why are our dolls so elderly and decrepit? It's not a metaphor for the stage of our lives, we're grandparents. That means our dolls are from the previous generation or charity shops.