I don’t know if you have ever talked to a woman who is approaching retirement with a reasonable salary but facing the prospect of an entirely inadequate pension; I find they are often in tears of frustration, anger and anxiety. This often arises because of the way the pension system has assumed women will rely on their breadwinning husbands, when for many people in the present generation long-term relationships that support a good pension just do not exist. It also happens because in the present and previous generations, and to a great extent still, women have usually borne the burden of child care responsibilities and other family caring, particularly for older relatives. A high proportion of women still get a lower basic state and second state pension than men in the same position, and this inequality will not be righted for some time, although the system is slowly moving towards equality.

I’m taken, therefore, by the detail of another House of Commons research report on Pension Contribution Conditions: sounds like a boring topic, but not to someone who is affected.

In particular, I think social workers should know that where people are doing more than 20 hours a week caring for children of other members of the family (even if there are breaks for respite care, holidays and hospital admissions), they can get a professional in health and social care to certify that they are careers and get National Insurance credits towards their pension. Anyone in health and social care can do this, carers do not have to be receiving some standard allowance. Have a look round the carers you’re working with and see if you can help them towards a better pension in the future. They might not be thinking about this, with all they have to do.

But their social worker should be thinking about it and doing something.

The report on the web here: http://www.parliament.uk/briefing-papers/SN03111. This also has stuff about other pensions changes and a current consultation on pension changes.

A visit to an old people’s home in Croydon for the launch of a new St Christopher’s project, bringing together social care and end-of-life care. I just had to go because the topic is such a direct hit on the subject matter of this blog.

For some time now, St Christopher’s has been focusing on all the people in our community who don’t get and don’t need a hospice service – the majority of people who die at home and in care homes. Too many of them, as the National End-of-life Care Programme says, end up in hospital, often because of anxiety by staff in a care home about whether they can cope with someone whose condition seems to be getting suddenly worse. Or, to be honest, whether the management of the care home have got anxious because too many people are dying and they don’t want to get the reputation for that. The problem with this is that, even if people think care homes are God’s waiting room, the managements mainly act as though everyone’s going to live forever with this wonderful care they’re getting. Of course, older people themselves realise that the reason why they’ve moved out of their own home is that they’re going to die soon and we have to recognise that better in health and social care.  As it is, we can all remember the Fawlty Towers episode in which a resident dies and John Cleese has difficulty in smuggling the body out of the hotel; that’s another example of the ‘nobody dies’ syndrome. Some hospitals and hospices are also set up to get the bodies out the back way (the John Cleese way, but probably not that incompetently), and in reality most people do not want to be involved with someone’s death unless they have to be. So it’s not surprising that people, even health and social care people, back away a bit when the prospect comes up. You can feel confident in your professional or interpersonal skills and still not think that you want to be involved in the death of someone that you’ve got to know.

So the National End-of-life Care Programme in its document: ‘The route to success in end-of-life care – achieving quality in care homes’ is keen to get care homes to be more prepared to take on people who are dying in their care home.

That is what the St Christopher’s project is all about. Pre-project statistics in Croydon showed that above the national and regional average of people (more than 50%) died in hospital and below the national and regional average died at home or in a care home – the place where they live. So, for some time, they’ve been working with nursing homes there, using the Gold Standards Framework (GSF), which improves training and commitment to good quality care at the end of life. They’ve massively improved the proportion of people dying in the nursing home rather than being blue-lighted to hospitals from  55% to 76% over a  year period. Obviously that means people dying where they are surrounded by things and people that they know rather than being in an alienating hospital. So now they’re going to repeat the trick with ordinary care homes starting with the four that are taking part in this project. Fewer people die there, but it’s still a big issue.

How do they do it? It’s mainly about supporting and developing staff so that they feel they can make a real contribution to making it better for their patients. At the launch, Veronica McCleary from Sanctuary Care in South Norwood, talked about the very real difference the preparation for the project made to her staff. She spoke about the increased confidence and a feeling of achievement that she and staff who attended the training had felt. They are now going to use this new project to help to improve the infrastructure in the organisation to support them. And you can’t change practice just by giving people training: you have to back that up by showing people in the care home how you can do things better and supporting them while they practice until the point where they feel able to do it on their own.

The St Christopher’s people are using the ‘six steps’ of the route to success document materials: you can see the St  Christopher’s document on their website: http://www.stchristophers.org.uk/sixsteps.

But some of this is greyed out because the Croydon project moves through the six steps in order. If you want to see a more complex document about six steps, you can look at the document prepared by a similar project in the North-West (but that seems to enjoy complicated forms more, although the overview guide is comprehensive):

http://www.endoflifecumbriaandlancashire.org.uk/six_steps.php

Or you can keep coming back to the St Christopher’s website as things get ungreyed over the next year:  http://www.stchristophers.org.uk/sixsteps. They also give you the email address of Jo Hockley to write to. She’s leading the show.

All this is a bit nursey and toolified (see below). The level of disability of people in care homes has grown and the consequent need for help and care has become more complex over the years, so skills with physical care have become more and more important. It’s a pity that this means that we concentrate on this, because a bit more skill on people’s social needs and personal development would also be a good idea (hence the St Christopher’s work on taking arts activities to care homes that I’ve talked about before). But the main point is that it’s quality of care that will help to move social care forward, and less concern about the financial and commissioning models which at best re-arrange the recliner chairs on decking of the Titanic care home

To go back and read up on the whole thing: the route to success document (the basis of the St Christopher’s and North-west projects) here: http://www.endoflifecareforadults.nhs.uk/assets/downloads/RtS_Care_Homes___Final__20100804.pdf

And if you;re interested in Gold Standards Framework for nursing homes (it’s also done with GPs), go here: http://www.goldstandardsframework.org.uk/.

Actually there are other route to success documents, for example on prisons, but more to the point there are many resources on the route to success website (now gnomically called RTS, so you might not have realised what it was about. Indeed, you might not have realised that route to success was about improving practice in end-of-life care. Obviously someone thought this was a cool title and it’s become a National Eol Care Programme brand. Unfortunately, it’s a brand that hasn’t had the advertising heft of Heinz, so while old hands may realise it’s end of life care baked beans, newcomers won’t know what it’s all about).

Anyway, you can get shedloads of useful documents, together with hammers and chisels to use on the coalface of end-of-life care. (Regular readers will know that I think there’s too much of a tendency in the NHS to conceal the reality that our job is mainly to fill in lots of forms, by calling forms tools – it seems so practical and sounds so professional and focused when you mention them to politicians. We might almost be as useful as plumbers).

Sorry about that, there is a website with lots of RTS tools to download. (There you are: if I’d just said that would you know what I was going on about?)

Useful stuff for helping people at the end of life: http://www.endoflifecareforadults.nhs.uk/tools/core-tools/rtsresourcepage

In a legal commentary on R (on the application of (1) Sefton Care Association (2) Melton Health Care Ltd (3) Westcliffe Manor Nursing Home (4) Benridge Care Homes Ltd (5) Craignare Care Home) v Sefton Council, (a case heard in November 2011) there is a nice crisp comment from the lawyers. The court decided that:

the local authority had failed adequately to investigate or address the actual costs of care and had thereby failed to have due regard to those costs, contrary to both the guidance issued by the secretary of state and that issued by the Department of Health

the local authority was clearly under a duty to consult with the care home proprietors. There had, however, been no consultation in any meaningful sense and the local authority had therefore failed in its duty.

What this means for social landlords.

Here comes the comment:

Local authorities cannot just cut the fees it pays in a ‘cavalier fashion’ and in effect, say ‘tough luck’ to providers.

This may not seem reasonable to local authorities, who are under all sorts of pressure, but it does make sense to any normal person. Once a care home takes on a resident, they are stuck with them, unless they are going to upheave their lives again by sending them somewhere cheaper. So a local authority should be serious when it assesses what is a reasonable charge.

I wonder if the same applies to the commissioners of healthcare services, since they mainly do not pay the full cost of providing hospices. The previous government looked at the costs of providing palliative care and decided to carry right on relying on charities. but policy, in the UK and internationally, is that people are entitled to palliative care. The Conservative view is that hospices are a good thing, and a wonderful example of the Big Society. It is views like these that lead one to the cynicism that their view of the big society is something someone other than the government pays for.

The legal comment at Lexology: http://www.lexology.com/library/detail.aspx?g=1867ece5-5277-4902-9db0-ae264cb6d08b&utm_source=Lexology+Daily+Newsfeed&utm_medium=HTML+email+-+Body+-+General+section&utm_campaign=Lexology+subscriber+daily+feed&utm_content=Lexology+Daily+Newsfeed+2011-11-29&utm_term=

Monitor is the independent regulator of Foundation Trusts that run the hospitals that are allowed to be financially independent the while operating within NHS. As part of the government’s marketing blitz to persuade us all that competition under the new Health and Social Care Bill is going to be good for us all, it has said how it’s going to exercise its new role of being the financial regulator for the new-style NHS. They’ve clearly been told by the government that: ‘you chaps had better get onside’.

Unlike many (you would expect this really from people who already work for an organisation that works for a system that wants to dump rational planning in favour of competition), it sees no competition between competition and cooperation. Here’s the argument:

An example of one area where our role on price setting would be particularly relevant is in avoiding ‘cherry picking’. There was much concern that the Health and Social Care Bill would enable private providers to ‘cherry pick’ routine and less complex healthcare services that are cheaper to provide and more profitable. The concern was that this would leave the NHS to deal with the higher-cost, more complex and long-term conditions with inadequate remuneration, causing the destabilisation of local hospitals. A change has been made in the Bill to address this concern. This means that Monitor would be given a specific duty to set prices that reflect all underlying costs, so there should no longer be any cherries to pick….(p 3)

The Bill sets out that Monitor would be required to support the delivery of integrated services for patients where this would improve quality of care or improve efficiency. More consistent, co-ordinated and comprehensive care is especially important for groups such as the elderly, who may need continuous care or have long-term conditions and need to be in contact with a range of health and social care professionals. It is also important for those using specialist services – for example, cardiac and cancer care, and for those with long-term conditions like diabetes or asthma. In any of these areas, care will currently often be delivered by multiple providers. This creates a real risk that the care will be fragmented and that one provider will not always know what another provider has done. The consequence is that a patient, at a time of considerable personal stress, will have to work out how and when to deal with different providers for different elements of their care. On top of the damaging impact on the patient, this can also lead to wasted time and money for the health service.

The new duty means that Monitor would have to consider how it can enable or facilitate integrated care. While it would be for commissioners, working with local providers, to develop and fund better and more integrated patterns of care, Monitor’s role as the sector regulator would be to work with others, particularly commissioners, to remove any barriers and consider how to enable integrated care provision where this is in the interests of patients. For example, there may be barriers to better patterns of care that Monitor could help address. We might, for example, look at ways we can ensure that standardised information is shared between provider organisations so that patients do not have to undergo the same tests on several occasions, or we could look with the NHS Commissioning Board at how to use the payments system to incentivise better integration.

Monitor has always been clear that we support better integration of health services where this is of benefit to patients. We believe that there are significant opportunities to promote the interests of patients through the integration of care and are fully supportive of any changes to the reforms that make this clear and help us to make this happen. It is our view that competition and co-operation are not mutually exclusive and that competition does not and should not have to come at the expense of beneficial co-operation. (pp 3-4)

What this says is, not that they are going to promote cooperation and integration of services, but they’re going to use payments in the competitive system so that it incentivises cooperation. This does not address the in-principle concern that many people have that competition never encourages integration.

It also uses the old liberal (not LibDem) market-forces chestnut that people can choose better if they have full information, for example about all the competing providers. This does not answer the point that they make themselves. At the point of choosing, a sick person has to go through all the business of finding out about and selecting services about which they have little knowledge and understanding. A little bit of standard information is not going to help here. My experience of families asked to go and find a care home for an older person in their family are shell-shocked, first by places that they instinctively think are costly but so-so in quality because they have not realised how expensive care is and how difficult it is to do well, especially when they’ve experienced a hospice that does do it well.

We’ve seen this week that apparently well-run banks like HSBC (well, they didn’t need bailing out the last time round) can let competition run away with them and fleece vulnerable consumers with unworkable ‘help’ in their old age. The care home sector will not be far behind, with the best will in the world, because it’s inherent in competition that people will try to make the best of their marketing rather than bring forward the genuine isues involved in very difficult personal decisions. Even the GPs doing good and being fair (see the last post) are going to splutter when people tell them they don’t want to be rationed thank you.

On the web: http://www.monitor-nhsft.gov.uk/sites/default/files/The%20Health%20and%20Social%20Care%20Bill%20-%20Monitor%E2%80%99s%20evolving%20role%20%5BInformation%20sheet%5D%2010%20October%202011.pdf.pdf

Anyway at SCAG (see the previous post), Jean Tottie introduced me to the Life Story Network.

The website is here: http://www.lifestorynetwork.org.uk/lifestory/

Videos from (mainly) older people here: http://www.lifestorynetwork.org.uk/innovation-and-practice/

This is about getting people to document their life story through writing, photos, computer files memory boxes, audio tapes and making DVDs. St Christopher’s does a lot of this, and it is important also to distinguish it from reminiscence and life review, which may have more therapeutic purposes. You can work with an individual or family or part of a family. In palliative care, it might be about memorialising someone you has died or is dying, or their relationships with you, or expressing something important about their lives.

Life Story Network is mainly about providing training, but their website has several interesting and creative videos from older people.

The Dementia UK also has webpages on Uniting Carers, http://www.dementiauk.org/what-we-do/uniting-carers/ which has several carers’ stories in the same vein, one of them Jean’s experience of caring for her father (there are long and short versions, and I’m afraid both are not well-formatted on the site, but they are very instructive about what older people and their carers have to go through).

Long version of Jean’s story: http://www.dementiauk.org/assets/files/what_we_do/uniting_carers/carersjourney.pdf

Short version: http://www.dementiauk.org/what-we-do/uniting-carers/carers-experiences/jean-tottie-s-story/

Other carers’ experiences: http://www.dementiauk.org/what-we-do/uniting-carers/carers-experiences/

Although she is an experienced health and social care professional, she found it difficult to get knowledgeable and consistent help from health and social care services. The services really were not set up to deal adequately with someone with dementia, and had failed to think through dealing adequately with carers. Here is her account (after pressing the need for ages) of his first visit to the memory clinic:

The first visit to the Memory Clinic was an interesting experience. Dad and I were seen by someone I assumed to be a nurse but later discovered otherwise. No introductions (other than first name) were made or explanation of how the clinic operated. The MMSE was done and I helped complete the picture with corrections on daily living activities. I would have welcomed a separate meeting as a carer as I felt that always being together meant that the conversations turned to me to confirm or correct Dad’s answers until he was excluded from the conversation. We were given no feedback on the MMSE and went straight in to see the doctor who hadn’t seen the result. The Doctor said that Dad probably had vascular dementia, but wanted to be sure with a brain scan, and prescribed galantamine. I was told I could ring the CMHT for advice if needed – but I didn’t know who or where they were! The only time I did ring I wanted to speak to a clinician because Dad was unwell but the CPN was on leave and there were no other clinical staff available in the team so I rang the hospital doctor for advice. After this clinic I asked Dad what he thought but he said he hadn’t heard much of it and did not know what had been going on.

A good communication lesson here: make sure your patient/client can hear you before you start.

Information leaflets in a hospice service

Information leaflets are a bit taken for granted. You often see them on the walls of service-providing organisations and some hospitals and public agencies have information services. How do they get there? How are they selected? How are they replenished? My experience, over years of creating them and maintaining noticeboards and other ways of providing public information, is that what appears and how it is updated is often pretty random; there will always be useful things that aren’t there and un-useful things that are. Also, the leaflets will be updated or not or not yet. It’s often a matter of personal interest by members of staff.

Macmillan Cancer Support has made a speciality of information in recent years, and merged in 2008 with Cancerbacup, which used to provide printed and later on internet information on cancer. They have a good website, which is so useful you wonder why organisations need to provide their own information. You can find it at: http://www.macmillan.org.uk/Cancerinformation/Cancerinformation.aspx

Of course, Macmillan is only about cancer, and palliative care is like all those heavily advertised shops – it’s ‘so much more’. Some other sources of information are:

The Dying matters website, which tries to raise public awareness of the fact that we all die and are all bereaved and to improve competence in dealing with this human reality in our everyday lives: http://www.dyingmatters.org/. This contains most of the information for the public that used to be on the NCPC website.

The Help the Hospices Hospice Information website: http://www.helpthehospices.org.uk/about-hospice-care/. Aside from having a reasonable account of what palliative care and hospices are, it also has good resources for carers (originally derived, it has to be said, from work withSt Christopher’s).

A mini-survey – what is there at St Christopher’s

So with all this information available, why are information leaflets still provided by health and social care agencies, and in particular hospices. The answer: partly because they have to tell people about how to engage with their own services, and partly because the need to interpret general information in accordance with the style of the organisation and the views of the clinical staff providing the service.

I looked at the St Christopher’s leaflets and did a bit of an analysis to check this out.

The first point is that that they tell you who they’re for, some are for patients, some for patients and carers (one providing information for carers is for carers and patients) and some for patients and visitors.  Some do not say this, the leaflet about the founder, Dame Cicely Sounders, for example. One is for ‘healthcare professionals’ and contains general information about the services provided. Not, I notice, social care professionals – is palliative care now only healthcare? I think not, and expatiate on this later in this post. End-of-life care developments tell us that people without healthcare problems still need to think about and plan for the end of their life and the National End-of-life Care Programme Social Care Framework says that social care professionals should be more aware of involved.

Then there are the categories of leaflet. I divide these into seven categories.

The first is about the hospice and its history (like the Cicely Saunders one), and fund-raising, and I don’t list them. However, while these are not directly providing information as part of the services to patients and their families, they provide a general context and a ‘feel’ for the place, which may be important to patients and family members in getting a picture of the principles of what the hospice is about.

Category 2: leaflets that provide general information about the services provided:

-          Coming to St Christopher’s as an in-patient

-          St Christopher’s Home Care Service (and people who are admitted to the hospice and to the home care services get an extensive information booklet about all sorts of things, which include the text of many of the other information leaflets)

-          The Anniversary Centre – a sort of grand Starbucks social centre (but better cakes) with access to all the Hospice’s services

-          Information for carers

-          Community support volunteers (the volunteers befrienders)

-          Complementary therapies.

This category of leaflet is about informing people what they can expect from and what they need to do to benefit from the services. It’s very much about engaging with the particular service.

Category three: leaflets about medical matters:

-          Additional information on medicine used in symptom control

-          Frequently asked questions about morphine

-          FAQs about blood transfusions

-          FAQs about cardio-pulmonary resuscitation

-          Fluids and the use of artificial hydration.

these leaflets are about being clear how the medical staff interpret various controversial issues in palliatrive care in this particular hospice. The last one moves into category 4: understanding what’s happening to you. It explains why this palliative care service, like many, reduces the tubes runnning into a patinet once they are clearly within the last phase of dying. Many members of the public think this is like starving people to death, so it’s important to explain it.

-          Coping with dying (this covers what happens as someone moves towards death)

-          Why won’t they eat?

-          Difficulty sleeping.

These are mainly about things that many members of the public woryy about, and move again into category 5, which the professionals call ‘infection control’, but I call them ‘managing some of the medical nasties’ that you mighthave heard of:

-          Healthcare associated infection – how you can help reduce it

-          Methicillin resistant staphylococcus aureus (MRSA)

-          Clostridium difficile (C. Diff)

-          Barrier nursing.

Then there’s Category 6, ‘official stuff’:

-          How to complain or comment about our services

-          Transport and St Christopher’s Anniversary centre

-          Cornea and tissue donation.

So are there any social care related ones? Category 7 is my any other (but mainly social care related) leaflets:

-          Advance care planning – this tells you about it, and points to the ACP booklet, which provides a format for writing an advance care plan.

-          Consent – what you have a right to expect; this is mainly about consent to treatment and refusing treatment, but also covers things like seeing students and taking part in research

-          Choosing and moving to a care home

-          Cognitive Behavioural Therapy

Taking this as a little research project, one thing I found interesting is that I got this pile of leaflets from the main stock of leaflets and the (slightly different) selection from where the home care teams operate from. I know that there are leaflets about coping with bereavement and the hospice’s bereavement services, but these are not in the main stock. Presumably they are made available at the time they are required from a stock kept somewhere else.

Social work in hospice information

What about social work in this panoply of information? I was struck by the way in which this material is very health-related. Even though the social work, welfare and bereavement service is extensive and a major slice of the hospice, there is no leaflet about it. There is also no leaflet about the spiritual care services. However, these are covered in the very extensive information for patients and carers. There’s a little bit about social workers and welfare officers (who provide a welfare rights service) and stuff about the spiritual care and bereavement services in the information for carers leaflet and rather less in the home care service leaflet. There is often a mention of social workers as part of the service in other leaflets.

One of the reasons for this is the healthcare related priority. The history of palliative care derives from trying to improve medical care at the end of life and integrate pain and symptom control together with excellent nursing care for very sick people as part of a wider conception of the end-of-life being concerned with emotional, psychological, social and spiritual issues in peoples’ lives. It is still very much a health care service and a specialised provision. But it could have been and perhaps should be a much more community-oriented service. Probably this is partly a historical thing: Britain is unusual in having so many hospices based in buildings; the US has a much higher proportion of community provision. There will be a long-term shift towards greater non-health community care for the end of life, as the doctors have got so good at curing serious illnesses, turning many cancers into long-term conditions, and, alongside other healthcare professionals, so much better at managing long-term conditions. Eventually this will probably mean that end-of-life care will become largely non-medical, with the medical and nursing care inserted into broader long-term conditions rehabilitation and treatment.

Another reason is that healthcare information is so concrete, whereas it is quite hard to write a sensible information leaflet about psychological, spiritual and social care matters. But the ‘choosing and moving to a care home’ and the ‘cognitive behavioural therapy’ leaflets suggest that this is possible. In social care we ought to be working harder at providing concrete public information for people using our services. It should be possible to explain more concretely what social workers do and why, in the way these medical leaflets do. This would make social work a more important aspect of the services that it is part of. We could also make clearer what some of the issues are about the problems that soical workers help with; in this case, for example, why children need help in understanding the fact that an important relative is dying.

One of the reasons for going into the information leaflet business is the stigma against social care. Its history has been very much a dealing with the mad, bad and ‘dependent scroungers/exploiters of our welfare system’ service. But the increasing focus on long-term conditions affecting the huge population of older people gives an opportunity for a reinventing of social care, much as palliative care reinvented care for ‘the dying’ over the past fifty years. We are often providing valued services for the majority in the frailer periods of their lives. And providing clear, specific, and brief information could make the general public think again about how they actually value social care.

Information and CancerBacup

If you’re interested in history, there is a brief history of CancerBacup, the cancer information service at http://www.macmillan.org.uk/Documents/AboutUs/WhoWeAre/History/part4Timeline.pdf; also information about the founder Dr Vicky  Clement-Jones, a research doctor who had ovarian cancer, at: http://www.macmillan.org.uk/Documents/AboutUs/WhoWeAre/History/part3VCJBiography.pdf. This originally stood for the British Association of Cancer United Patients, but also handily implies supportive ‘backup’. It always reminds me of the lovely Lancashire town of Bacup (pronounced ‘bay-cup’).

And I’m back to the publication of my new book in the US by Lyceum Books (UK next year from Policy Press):

Citizenship social work treats older people as equal citizens with everyone else, not as irritating past-its dependent on care from others. That means age-proofing universal services, such as leisure centres, so that older people can use them comfortably, and mainstreaming older people into all sorts of other provision from which they are excluded. It means a working so that creative personal development is still possible even for older people and we do not take for granted that they are a burden on the young.

There are lots of practice things that you can do with older people to help them be fuilfilled human beings. If only 20% in their 80s have some dementia, it follows that 80% are not mentally frail. Why not act as though all older people are capable of self-fulfillment?

Readers in the Americas can get it from the publisher: http://lyceumbooks.com/CitiznshpSclWrkwOldrPpl.htm

Readers in the UK, Europe and the Commonwealth will eventually be able to get it from Policy Press early next year (I’ll remind you when):

http://www.policypress.co.uk/display.asp?K=9781447301271&sf1=contributor&st1=Malcolm%20Payne&m=4&dc=6

A local newspaper reports on compensation for people with learning disabilities cared for by a Cornwall healthcare trust: £6.5m for the institutional abuse they suffered, added to £1.47m they were awarded a while ago because the Trust (strange word for it in the circumstances) misspent their personal money on its own activities. Things are better in those services after five years, say the Trust, and the deal means that it won’t go to a big trial which would cause further delays. However, you still have to ask why it has taken so long to come up with compensation and why it was not obvious immediately that the people concerned were being mistreated and cheated and therefore that such costs accumulated.

What is the moral compass of people who are working in care services? Why does it so often seem to require scandals, inquiries and compensation to lead to improvements and change? A generation or two ago, there were many scandals about ill-treatment in long-stay hospitals, leading to a development in community care. A while later, there were scandals about people not being properly cared for in the community. It seems that wherever vulnerable people are being cared for, abuse arises.

Does vulnerability in people always lead to their exploitation? Perhaps not inevitably, because my experience in social work is that many people care amazingly well and selflessly for their family and friends. But it seems that some abuse will always arise, because there is a long-term history of abuse by parents and carers. Does having care services always mean a proportion of people will be abused? If it seems so, what can we say about human beings? Can we assume that caring is integral to humanity? The example of the development of hospices and more recently trying to improve end-of-life care perhaps suggests that it is. But it seems to be a constant struggle to preserve caring for people when they are vulnerable, so is exploitation of vulnerability also a commonplace characteristic of humanity? More so than caring?

I suppose many religions have always said that achieving good is always a struggle for human beings individually and collectively. Why is that? And if it is true, how should we structure caring services to deal with that?

The newspaper story: http://www.thisiscornwall.co.uk/NHS-abuse-victims-win-pound-6-5million-pay/story-13342698-detail/story.html

The recent Report by the National Audit Office on personalisation and social care provides lots of useful information, and also a thoughtful critical review of the issues in the developing social care sector. Its main focus is whether local and national oversight is sufficient to ensure that needs are met and personal budgets are not misused. It comes to the conclusion that the government doesn’t have much in the way of levers to manage situations that go wrong, and there are insufficient resources to move in and take over if a major supplier goes bust. It was also hard to find care providers who could deal with very complex needs and getting advice and support for care users in setting up and managing their care was also difficult.

This bit includes a brief study of the collapse of the main national private provider of care homes, Southern Cross, recently. It confirms what we already knew, that this was mainly because its private equity owners sold its property and leased it back a few years ago.  This is a typical manoeuvre by private equity companies, whose job is to squeeze the assets of the companies they own to get as much money out of them as possible. It has led to the downfall of a lot of retailers because they have too much debt to cope when market conditions get tough. The report makes the point that care homes and the care sector generally are not good candidates for this, because they have high fixed costs anyway, and if there are fewer people using them (because local authorities and other funders won’t pay or they come up with other options, which they will because this is policy), there will be more competition with other providers, fees will go down, and losses start to accumulate. Will we see less private equity involvement in the care sector? Don’t bet on it if there is money to be made: this should be restricted in the cause of quality care.

Another feature of the social care system that makes a market system a poor way of providing is a comment made on p 28:

From a consumer perspective, the care homes market has some characteristics of an inefficient market:
Entry into a care home is often unplanned and can be made in response to a specific event (such as a hospital admission or the death of a spouse).
By definition, switching rates (choosing to switch care home) are very low, and consumer research commissioned by the Office of Fair Trading suggests that it is considered to be a last resort by most residents (it can often adversely affect residents’ health).
As is the case with most care services, buying a care home place is inevitably an ‘experience good’, meaning that the consumer cannot really tell their satisfaction until it has been experienced.

There are also difficulties in getting new entrants to the care market, for three reasons:

Providers struggling to recruit staff to cover isolated and sparsely-populated rural areas.

High rent costs in some urban areas.

The challenging nature of care work, often unsocial hours, and relatively low levels of pay. (p 31)

To deal with this they recommend:

Subsidising adviser posts in voluntary sector advice and support providers.

Helping new small providers and social enterprises to enter the market by making local authority tendering and contracting processes more flexible and less burdensome for small providers.

Providing advice and in some cases limited financial support to help new small-scale care businesses enter the market.

Of course, they could come to experienced high-quality care providers like hospices, and get them to enter the social care market; this is happening in some areas.

Interestingly, an ADASS report on how things were developing suggests that most of the development is not in direct payments (the government’s and enthusiasts’ preference for the future of user control) but managed budgets (you get allocated a budget, but the local authority or some friend of the local authority – their tame voluntary organisation – manages it for you. This may be realistic, but it may signal the end of the shift to giving people government cash for care. Or it may mean there is going to be a hiatus while people get the confidence to move on again.

One of the things to ask is why the government is so keen on giving away its money in cash – generally treasuries don’t like allowing real people to get their hands on government cash; it means things can get out of control. The answer is two-fold: the politicians like it because people like the flexibility and control, so there is positive feedback in social care, an area that often gives problems rather than positives to government, local or national. The other answer is that the present political elite would like to have a functioning system of vouchers or something like to show that it can work. In most other areas where it is politically important to right-wingers to displace publicly funded services (health and education) vouchers have been shown not to work. So here the treasury (local and national) view may accord with the political view: by developing managed budgets, they can hang on to control while offering the semblance of giving user control. I’m a bit doubtful whether, in the long-term and covering every service user across the country, managed budgets will give real user control. The advisers and managers of the budgets will not have the incentives in the local government system (where not giving out money for any purposes if at all possible is totally ingrained) to be creative in getting imaginative ideas from service users and implementing them. They’ll fall back on standardised responses. So much more convenient and manageable.

The Report doesn’t get stuck on whether user choice is desirable and is actually enhanced; in general it follows government policy in thinking that it is. However, there are different views in different sectors of the population who might use personalised social care. Older people are less enamoured, although in general a majority of all sorts of service users thought that their mental well-being was improved and they achieved support that met their needs.

The Report at: http://www.nao.org.uk/publications/1012/oversight_of_care_market.aspx?dm_i=4O5,JGIK,UF1K0,1L8WB,1

National Audit Office (2011) Oversight of user choice and provider competition in care markets: Report by the Comptroller and Auditor General (HC 1458). London: TSO.

The National End-of-life Programme newsletter caught my eye by looking at end-of-life care and the environment. There’s a new publication, also involving the King’s Fund:

National End-of-life Care Programme (2011) Routes to Success in end of life care – achieving quality environments for care at end of life. London: Department of health.

http://www.endoflifecareforadults.nhs.uk/assets/downloads/RTS_Environments_final.pdf

It identifies five elements to think about: natural environment (there should be lots of it; that means wood and leaves), first impressions (should be good), comfort, privacy and dignity, spiritual spaces, spaces for relatives and friends and facilities for dealing with a death when it occurs.

So far and so obvious, although it does spell these out in more detail which might give you some clues about how to go forward. Then there are case studies, for example an overpromoted garden shed with nice chairs and lighting in some hospice’s yard: it also does help you with making the best of an unfortunate starting point. The result, looking at the pictures, is nice, in the way that my very traditional English teacher would not have wanted me to use the word ‘nice’.

Actually, the overpromoted shed reminded me of an innovation from Southern Rail in my home station, Sutton. Not content with the slotted metal seats we usually sit on, even indoors, to reduce vandalism, it has introduced three wooden seats built out of wooden lego, in a circle and out in the open. All its other seats are under cover. I have yet to see anyone sitting on this structure, even at rush hour. I can only think that this ‘quality environment’ is designed to compensate for the waiting rooms that they have turned into offices and store rooms for their vanishing staff in recent years; I’m not sure whether they are truly vanishing, or are they just vanishing into the offices?

The connection in my mind is the strange architectual belief that bizarre wood structures make for nice. Not, I think, necessarily. This further reminds me of Sutton Council’s refurbishment of our main street: sensible, but what I’m sure any landscape architect would describe as old-fashioned. seats – they actually had armrests at each end – were replaced by an architect-inspired version of a seat: a log on two short legs with a metal bar a third of the way along as an armrest. When one of our older citizens sat on an early version (they’ve had to be redone) the log came off the legs and rolled away, central Sutton being somewhat hilly, the citizen being carted off to hospital. These are not comfortable, and any person with a normal-shaped bottom could tell they’re not comfortable. Why do the landscape architects want us to put up with them?

OK, I don’t mind nice and St Christopher’s has been working hard at modern nice for a while now with some smart but possibly not altogether person-shaped consequences, but most people die at home, with pressurised relatives and inadequate domiciliary care (they’re not home helps any longer, so it might not be cleaned), with not a lot of space and if you live in the centre of most cities, not a lot of nice.

Let’s not talk about lovely hospices and leafy walls, let’s talk about how most people can die not in grotty general hospital wards or their corridors and how their dying environment in their own homes can be made nice, because a lot of the homes I’ve visited as a social worker are not nice and cannot be made nice. We’re perhaps a bit too keen on supporting people’s wish to die at home. When home is a studio flat in Southwark, some hospice nice is a good move; a point which  perhaps the palliative care world (which does nice quite well) should make a bit more firmly.