Starting point: older people are the main issue in the NHS reforms

There’s been a flurry of activity on the NHS Reforms, which have been becalmed by a listening exercise after a lot of political and professional protest. Of course, it’s a Health and Social Care Bill that’s been held up, and is apparently going to be reconsidered in House of Commons Committee in (probably) July, but the concern about social care has been sotto voce; the main social care element is to get rid of the GSCC. However, do not be deceived: all this has considerable significance for the political position of social care, and probably also of palliative care.

Let’s start from a social care/palliative care view of the issues. The big client group in both areas is older people; and it’s a growing client group. Not growing quickly, but by 2030 the post-war baby boomers will be well into the age range that uses health and social care in a big way (myself among them if I last that long – I’m planning to be a charmingly dotty old social care client – this is the best personality style to get people to provide services for you). As we saw when looking at the Nuffield study last week, typical usage of social care in the last year of life grows slowly in the latter phase of your old age, and in the last few months you become very expensive because you get lots of in-patient treatments. So it is cheap to provide for most people until they get near the end, although there will be some hips, knees, heart bypasses and boomps-a-daisy (injuries through falls) to be coped with in the meantime, but that can be a bit more planned and strung out. Then if you do the end of life well (look back at my posts on the end-of-life social care framework) you can stop a lot of emergency admissions to hospital care and cut down the costs of healthcare substantially and everyone would still think the care was wonderful.

Unfortunately, although voters would doubtless be very pleased to see improved social care, the political problem there is that people have to contribute to the cost of it and don’t like whittling away their family’s wealth in doing so. They much prefer an NHS model of free care, but are realising that this is not possible. So they don’t like to think about the government spending the money on social care, even though this would be the best option for most people. they want to have as much through the NHS as possible. The political problem has pushed back genuine integration of social care into this legislation because we are waiting for the Dilnot report in the next few months, which is going to have yet another go at suggesting how to get round the social care costs issue. Until that one is sorted out, you cannot have a rational discussion about where we’re going with NHS care, because the only rational way to think about it is in tandem with social care for older people, particularly those who are nearing the end of life.

But even so, the reality is that for the NHS, as well as social care, the big client group of odler people will mainly need community and primary healthcare from their GPs and a modicum of social care for a minority. Also, a lot of mentally ill, learning and physically disabled people have long-term care needs, which are relatively expensive because they’re long-term but are fairly predictable and do not cost a lot per person. These are the groups of people who the NHS should be concentrating on. However because the voters think that what they need to worry about is the hi-tech care they get if they are in a road accident or have a heart attack or some other serious illness when young, and they want to be sure that all the drugs and clever doctor things are available pronto from their local hospital, we are getting all this suspicion about these plans. It is clear that it would be fine it they got them more efficiently from a less local hospital that has properly geared up emergency department to do the skilled job of dealing with these occasional problems, but that feels a bit less certain, and the picture of the local place closing raises insecurity.

It may seem impossibly romantic to hanker after your local NHS hospital, but actually I wonder if people who think this way are reflecting a genuine preference that we should be thinking about. Lord Darzi (remember him? a doctor recruited as a minister to support New Labour’s attempt to promote local care) had an idea of community-based polyclinics for London and beyond which does reflect the need for a well-planned system of local care. My friends in European countries are not so worried about local general hospitals, happily accepting the regional specialist provision, because they have access to nearly everything but the seriously hi-tech quite locally.

Look at the mortality statistics: mostly people don’t die between 1 and 65. And, looking at the budgets, mostly they cost the NHS very little until they are in their upper 70s. So, it is a reasonable aim to save money by putting the clever doctor things a bit further away, getting us fitter and giving us all statins so that we don’t have heart attacks. Unfortunately, the voting public seems to think this is all a trick to take away the comfort blanket of their local NHS hospital. We should go back to Lord Darzi, because local general-purpose treatment and investigation provision would be genuinely welcomed, even though the hi-tech doctors don’t like it – it’s not whizzy enough for them. But my two recent cataract operations did not, I fancy, need to be done within the boundary of a large general hospital. A polyclinic would have been ideal.

So, the main problems that lead Lansley, the Secretary of State for Health, the coalition and people such as Alan Milburn (the former New Labour Health Secretary who emphasised competition when he was in power) to want substantial reforms are to deal with the real issues of:

-         demographic change (a growing population of older people making more extensive demands on the NHS), and

-         medical advance (the demand for ever more costly medical interventions as the doctors get cleverer at managing more serious illness).

There are some doubts about the importance of these. For a start, the big increases in the older population are a decade or more away, although o courfse, we have to work up to them. More important, if community care and end-of-life services for older people were really made to work, the demand on hospitals would be much lessened. And research that allowed doctors to manage older people’s many physical conditions better over the long-term are likely to reduce the cost of long-term conditions to the NHS, because most of it would be done in the community or in care homes. So what the Bill should actually be about is improving social care, including a good dollop of effective advance care planning for the end of life, with a little bit of NHS fiddling around the edges. But the political commitment to the NHS means a focus on convincing people that the nasty Tories not going to take away the beloved local hospital, that most people are probably not going to use much. As well as that, their eneds could probably be met by specilaised regional centres and better local investigation and treatment.

Substantial increases in much cheaper age-proofing of general public and commercial services, so that older people could carry on under their own steam for much longer than they can now would delay and reduce demand for expensive social and health care. Really effective social care provision would also reduce the demand on expensive hospital provision. The reason for the focus on GP control in the NHS reforms was that the GPs are the centre of providing for the massive number of people needing long-term care, most of which can be provided in the community, and a lot more of which could be provided if we stopped sending people to expensive hospitals. Incentivising GPs to provide community health care for older people would hold back the rising costs of NHS hospitals. It was just this that the hospital doctors and nurses feared: their status, and some of the elite status of medicine over the denigrated social care comes from the scientific status of constant medical advance. We should be spending some of this research money finding out how we can improve community provision for long-term care.

So what’s been going on? There have been three events within the last week or so:

- The Prime Minister made a speech confirming the political support for rowing back on the complained-about aspects of the reforms

- The NHS Future Forum reported on the ‘listening’ exercise, in which views on how to adjust the reforms were collected

- The government responded officially to these, accepting the main import of them. Of course, we don’t know the detail of how they’ll change the Bill to take account of them. Also, there have been some more individual reactions from Lansley and from Alan Milburn.

Cameron accepting the main changes

Cameron’s speech confirming the acceptance of the main points of the proposed changes, given on 7^th June 2011, in advance of the Report of the Future Commission being published, is at:

http://www.conservatives.com/News/Speeches/2011/06/David_Cameron_Protecting_the_NHS_for_tomorrow.aspx

His argument is for getting the best possible value for money and big variations in quality across the country. These current problems are forerunners of significant difficulties of over-stretch if we don’t plan for larger demands from older people and medical advance in the future. As people have thought about it, there is a lot of support for these plans, but we need to get them right…’our vision of an NHS that is more productive, more patient-friendly, more professionally-driven and more diverse is clear’.

On competition: I do believe competition is a good thing. But not as an end in itself. It is a means to give doctors more choice to get the best possible care for their patients, and for patients to have that choice too. It is a means of bringing in fresh thinking, new ideas, different ways of doing things that deliver better and better value for money. Put simply: competition is one way we can make things work better for patients.

On the pace of change: We will make sure local commissioning only goes ahead when groups of GPs are good and ready, and we will give them the help they need to get there.

On integrated care: patients…are keen to make sure that whatever happens their care is joined up, that they don’t have to put up with the frustrations they have today – with different appointments in different places, with different people, all to discuss the same thing…professionals who have dedicated their lives to the NHS who are desperate that clinical decision making should replace bureaucratic decision making …but worry that only GPs will have responsibility and that will lead to a fundamental break and juncture between primary and secondary care…

Hospital doctors and nurses will be involved in clinical commissioning. We will also introduce clinical senates where groups of doctors and healthcare professionals come together to take an overview of the integration of care across a wide area. And of course, where effective networks of clinicians already exist, we will support them, not reinvent the wheel…Monitor will now have a new duty to support the integration of services – whether that’s between primary and secondary care, mental and physical care, or health and social care.

On waiting times: Patients tell me just how big an impact the time they wait for their healthcare can have on their well-being, and how they worry that by scrapping the old targets we might lose control of waiting times…The whole reason why transparency and choice are so important is so that patients can hold the health service to account and get the care they demand, where they want, when they want. That’s why we’re releasing a whole raft of information so you can compare and contrast different providers within the NHS – and make your decisions based no real solid evidence. And that includes evidence and information on waiting times. But we’re not going to leave anything to chance, especially as our changes are working their way through the system. So we’re keeping the 18 week limit…And we’re not going to lose control of waiting times in A&E either.

On NHS budgets: There will be no cuts in NHS spending…This year, and the year after, and the year after that, the money going into the NHS will actually increase in real terms with £11.5 billion more in cash for the NHS in 2015 than in 2010.

But…every year without modernisation the costs escalate. Demand pressures increase, driven by an ageing population and drug and alcohol abuse. At the same time, there are supply-side pressures too, driven by new and expensive drugs and technologies. We can’t pretend that the extra money we are putting in will be enough to meet the challenges. We need modernization of the NHS to do that.

The listening exercise

The NHS Future Forum reports and documents are at:

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_127443

There is also a website that offers some criticisms of the Future Forum proposals:

http://healthandcare.dh.gov.uk/category/conversations/future-forum

The introductory material mentions voluntary organisations and hospices as having a clear role:

To provide this choice for people at the end of life will require an integrated approach in health and social care with greater involvement of the third sector, including the hospice movement. (p 8: Summary; Chair’s letter to the Secretary of State)

There’s also a comment on integration with social care, using the Health and Well-being Boards (p 12):

Local government and NHS staff see huge potential in health and wellbeing boards becoming the generators of health and social care integration and in ensuring the needs of local populations and vulnerable people are met. The legislation should strengthen the role and influence of health and wellbeing boards in this respect, giving them stronger powers to require commissioners of both local NHS and social care services to account if their commissioning plans are not in line with the joint health and wellbeing strategy.

Avoiding boundary disputes is also included (p 12):

Better integration of commissioning across health and social care should be the ambition for all local areas. To support the system to make progress towards this, the boundaries of local commissioning consortia should not normally cross those of local authorities, with any departure needing to be clearly justified. The Government and the NHS Commissioning Board should enable a set of joint commissioning demonstration sites between health, social care and public health and evaluate their effectiveness.

There are five main areas of discussion:

Choice and competition – broadly it promotes the availability of choice, in the context of patients’ and public security that local services are good. Since in an emergency, you have to go to the local provision and most people do not want to travel massively, choice about where to go is not so relevant as being able to influence the quality and style of the provision you experience. For me, it is a relief to see this point made, when the private sector commentators are all keen to get you to go to their local private hospital. Most people are perfectly well aware than in an emergency, the best place is the NHS. Of course the attitude is different for residential social care – people have got used to private sector provdiers there. Rather than the finance watchdog, Monitor, encouraging competition, the Future Forum says it should ensure that people should have the right to challenge commissioners if they are not getting adequate choice about how they are being provided for. Cherry-picking by private providers that would mean that integrated local services are not viable should be unacceptable.

Patient involvement and public accountability – it argues for integration as the main objective, delivered by patients having a strong say in how they are cared for, and stronger public accountability for the quality of provision at local and national level. Doubters think that health and wellbeing boards and local government generally are being cut so much there is little chance of htis happening.

Clinical advice and leadership – it should be wider, thus allowing the hospital doctors and nurses (no mention of social care) to stymie seriously community-oriented priorities.

Education and training – this is included to respond to problems about how the system will integrate with medical education; the comment is really ‘don’t know, we’ll have to work on it’. No attempt of course to connect this with training needs in social care.

The pace of change – set up the NHS Commissioning Board to give clear leadership, but don’t press too hard to get everything done by deadlines.

Government acceptance of the Future Forum recommendations and afterwards…

You can read the positive announcement (and a statement that the Future Forum is going to carry on listening) here:

http://www.conservatives.com/News/News_stories/2011/06/Government_accepts_recommendations_for_NHS_reforms.aspx

As usual, the King’s Fund has a good analysis of the announcements:

http://www.kingsfund.org.uk/current_projects/the_health_and_social_care_bill/nhs_future_forum.html

and Anna Dixon on their blog makes some useful comments:

http://www.kingsfund.org.uk/blog/nhs_privatisation.html

They also have a chunky report on the role of the voluntary sector in the reforms, done with NCVO. I’m going to return to this:

http://www.kingsfund.org.uk/publications/voluntary_sector.html

The Financial Times has a good in-depth briefing (but be careful how many times you click on the FT website; after a while their paywall looms up to hit you).

http://www.ft.com/indepth/nhs-reform

A useful briefing by the NHS Confederation (the health organisations’ organisation) on the government response and what they thought. Generally, they were pleased by the government’s report.

http://www.nhsconfed.org/Documents/110614%20member%20briefing%20govt%20response%20to%20FF%20-%20FINAL%20FOR%20WEBSITE.pdf

A video of Lansley addressing GPs yesterday, carried by the Telegraph from ITN, makes clear that GPs are going to be well on the way to their commissioning role by 2013, even if they’re not quite there yet. Clinical commissioning groups will cover all England by the due date, even if they’re not fully functioning. This was probably inevitable anyway before the pause for listening. So the claimed slowing up of the process until people are good and ready is largely non-existent.

Link to the Lansley video: http://www.telegraph.co.uk/health/healthnews/8576849/Andrew-Lansley-NHS-reform-consultation-not-a-PR-exercise.html

Alan Milburn’s Daily Telegraph article attacking the government’s proposed changes to the reforms is at:

http://www.telegraph.co.uk/news/politics/8578226/This-NHS-debacle-sets-us-back-a-generation.html

Milburn’s analysis is that quietly going ahead on the present track would have delivered many of the improvements, but that Lansley was inept in claiming that there would be a revolution in competition and a ‘free-for-all’ in who was allowed to provide NHS care, encouraging private providers. If we accept this judgment, it is easy to guess that Lansley might have done this to promote his position politically in the right-wing of the Conservative Party. More important, probably he actually believes that this would be a better way of running the NHS; lots of people do.

For people who are doubtful about how the private sector is going to react to the possible loss of opportunities for profit, I also like this Spinwatch diagram, which shows how people with political influence and private sector organisations favouring private sector involvement in the NHS are connected:

http://www.powerbase.info/index.php/File:Private_Healthcare_Network_SpinWatch.jpg

Conclusion

Actually, I don’t think the private sector has much to worry about. I don’t think competition red in tooth and claw was ever going to operate, and I think Lansley was ramping this up for political reasons, and has come a cropper as a result. There will continue to be steady increases in competition where it makes sense and in some places where it doesn’t. It is clear that the proposed changes are going to make the commissioning groups more difficult to manage, but it is clear that the process of reorganising is going ahead apace. I recently gave a talk to some pct managers, some of whom could remember their new job title, some of whom had been made redundant and some of whom had new jobs but didn’t know what they were going to be doing. Already, we’re beyond the point where the present system can carry on, so the question really is: how can we make the new system work well?

The Nuffield Trust published an interesting study last year, which I’ve only just got around to. It looks at all the people who died in three local authority areas and compared their use of local-authority-funded social care and in-patient hospital care (about 20% of people fund their own care, so the study tells you nothing about them). It is also good at citing other similar studies, so it gives you an in to related material.

It finds that about 30% of people had some social care during the last year of their lives, rising to 40% for older people. The number of people using social care rises from 15% to 30% during the last year of care. Much of this average increase in the last year represents increasing use of (expensive) care homes. Of the people studied, 7.2 per cent used only social care, 49 per cent used hospital inpatient care and 23 per cent used both. Use of social care increased slowly over the last 12 months, inpatient care increased hugely, except for people who already had high social care costs (meaning they were in care homes). Above age 60, hospital costs at the end of life declined with increasing age, while social care costs increased. A crossover occurs in people aged 90 and above when estimated social care costs in the last year of life exceed the hospital inpatient costs.

People with a mental illness of any age used more costly social care than any other group; people with cancer used fewer social care services (possibly because they have access to special services for cancer sufferers, such as hospices, Macmillan and Marie Curie).

There are some caveats but, on the interaction of health and social care costs, the report concludes:

There is a subset of people accessing both social and hospital care who are associated with proportionately higher costs.

Social care costs in the last 12 months of life are most significant for older people. Increasing age is associated with higher social care costs and a broadly equivalent reduction in hospital inpatient costs.

The level of hospital inpatient costs is lower for people with high social care costs (people in care homes). This inverse relationship is observed at different age bands and is not solely linked with activity in the few final weeks of life.

A Canadian study has similar results. Possible explanations include:

Some people have health problems that are not amenable to hospital‐based treatment and the concentration of these may be greatest in the population in care homes.

Sometimes a hospital admission can be avoided by care in a residential setting – a substitution effect.

There may be some discrimination about offering hospital‐based treatment because the recipient is old and in a care home.

People within care homes may feel better able, or better supported, to cope outside of the hospital.

Interesting stuff.

Martin Bardsley, Theo Georghiou and Jennifer Dixon (2010) Social care and hospital use at the end of life. London: Nuffield Trust.

On the web: http://www.nuffieldtrust.org.uk/uploadedFiles/Publications/Social_care_and_hospital_use-full_report_061210.pdf

Back in the country again and back to the computer (I’m so old-fashioned, I regard being away teaching as an excuse not to look at my emails – my son checked his emails on his honeymoon – that’s the new generation for you – but he did say that I was not to regard him as a saddo).

Catching up, the Department of Health has published a consultation on quality markers on spirituality and bereavement care in end-of-life care. You may know that NICE is consulting about quality standards in end-of-life care (not markers, notice the difference – standards are a posher form of quality apparently), but somebody noticed this did not cover bereavement and spirituality, so the DH has rushed out some lesser quality wotsits to compensate.

All this activity is a positive sign of the DH intention to embed end-of-life care in broader services.

On these particular quality markers, they suffer, of course, from the tendency to equate the existence of policies and the provision of a service with quality, rather than the actual quality of the human relationships engaged in the service provision. These are the measures:

For commissioners:

Evidence that service level agreements (which include explicit contract monitoring requirements) have been established with provider organisations.

Contract monitoring to include requirements for providers to:

- Gather feedback from service users, including an agreed measure of outcome achieved as appropriate to the service being provided

- Audit service uptake

- Monitor waiting times (as appropriate)

Providers to share this information with commissioners at the agreed time;

Service specification and needs assessment documentation to be available.

For providers:

Service user feedback on the availability, timeliness, usefulness and appropriateness of support and information provision;

Audit of documentation showing whether information was offered to the carer/family member;

Tell Us Once services developed in partnership with Local Authorities.

Documentation showing that a clear, agreed pathway is in place;

Audit of service provision demonstrating implementation of this pathway, including appropriate onward referral;

Agreements in place with other providers to enable appropriate onward referral.

Evidence of general introductory training, incorporating dealing with loss, grief and bereavement, being made available to, and accessed by, all staff;

Evidence of the use of competences as part of appraisals and professional development plans for staff directly involved in bereavement assessment and care delivery.

Organisational HR policies include provision for staff and volunteers who have been personally bereaved, or have been affected by death and bereavement in the course of their work;

Audit of support, counselling and supervision available to, and level of access by, staff and volunteers in the workplace, including those who have exposure to, and are affected by, death and bereavement;

Audit of staff and volunteer feedback on the service.

The human resource policies focusing on support for staff and volunteers are a welcome recognition that this can be a personally demanding area of practice.

And it’s of note that the idea is spreading of developing a widely-understood ‘pathway’ as a way of integrating services. So local serviecs would understand the normal progression from having a relative who has died, through immediate responses to bereavement on towards more specialised care required in a relatively few cases. I have my doubts whether this is relevant in a very broad area of need, such as bereavement, where there are many social and community responses. Integrated care pathways developed from the need to coordinate disparate professional services in a clearly defined condition with a recopgnised progression, such as Parkinson’s disease. I think it’s less clear that this form of coordination is appropriate for issues such as bereavement and even less so with something like spirituality, which should be integrated into what every prcaititoner does in relation to the end of life.

And as we have seen in the recent fuss over abuse in a hospital for learning disabilities, you can have all sorts of services and agreements, but no human response to the needs that have to be met and no real acceptance of managerial responsibility for a good quality experience for service users at any level, from  front-line staff to regulator. This is particularly important in areas such as bereavement and spiritual care, where how you do it is far more important that the systemisation of what you do.

Still, the consultation is there to respond to:

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

This is my third discussion of current policy fads and fashions and their consequences for health and social care, and in particular end-of-life care: this time the focus is on Bog Society policy. In it, I argue that Big Society policy is underdeveloped, but reveals important features of Conservative thinking about society, in particular the wish to move away from public service approaches to service provision towards service provision that reflects the asumed ‘enterprise’ of the private sector.

Like most people, I’ve spent a bit of time struggling with BigSoc (this is what I call it), and you can see my struggle represented in my BigSoc blog (http://bigsoccommsw.blogspot.com/). I keep this separate from my St Christopher’s blog, partly because it deals more directly with party political issues (which is a no-no for St C’s). Also, it includes a lot of detail unrelated to end-of-life care and blogs need to stay with one main subject, so that people know what they’re getting. Hence the separation. However, struggling with BigSoc elsewhere does mean that I have a stash of material to ground my thinking in relation to palliative care. That’s what I’m doing in this post.

The contradictions in BigSoc policy

Why is BigSoc a struggle? For two main reasons. One is because its political focus and objectives are claimed to be unclear, by political commentators in the press. My stance in my BigSoc blog is ‘details tell all’: that is, if you dig around in what people actually say and do in some detail, you can get a picture of the whole, because what they are doing in practice informs you about the big ideas behind it. The picture reflects Conservative ways of thinking: they want a more private sector ethos in public services.

The other reason is that the BigSoc idea seems attractive to those of us who have always been committed to community work. Community work is the practice (sometimes it’s  an element of social work and sometimes broader) which seeks to facilitate people from communities, both local communities and communities of people who share interests, to come together, work collectively on issues that they share and create solutions that they put into action themselves. BigSoc seems to want to encourage this; groups of local people are encouraged to find their own solutions.However, the engagement with people at the grass-roots that is typical of community workdoes not usually produce the kinds of initiatives and engagements that can be presented as colourful, imaginative developments demonstrating an important political idea likfe BigSoc. Consequently, activities selected to represent BigSoc, in order to promote the policy, are often quite untypical of what is actually done in community work and of what local government will achieve by decentralising and localising decision-making.

Therefore, contradictions seem to grow out of how the ConDem coalition has tried to implement BigSoc. I have pointed out before in this blog and elsewhere that the history of attempts to encourage community endeavour through government action is littered with government finding out that community action often leads very rapidly to protest about what government is doing, and rapid squashing of what communities want. It often also leads to communities creating responses that government does not expect. Governments (or the politicians in them) tend to think that their political views are widely shared, whereas they are often only shared by the people those politicians meet. The people who come together to share views and work on things together often find that their views and what they want to do about them differ from the political assumptions. Their public response is often protest or resistance, rather than imaginative development, or development of local services which do not offer a lot of zip-zap for someone who wants to promote a new BigSoc policy.

The main aims of BigSoc policy

BigSoc seems to have two main drivers. One is a conception that government is too big. There are at least two elements to this: one is that it is too large as part of the UK economic system, and that if you reduced its economic role, it would leave space for non-government sectors of the economy to be creative, expand and get us out of economic problems. The second element is that government looms too large in people’s minds as the solution to social problems and that if you reduced its role in providing services and responding to social issues, people would sort out answers on their own. These are broad objectives for cultural change, based in broad political philosophies. Can encouraging local engagement in quite prosaic local government decisions or developing responses to small-scale local issues achieve such change?

The first concern driving the policy is that government is too big in the economy, leads to an economic policy which reduces government expenditure and tax, and associated political policies such as the ‘bonfire of the quangos’ and the ‘bonfire of red tape’, with the aim of reducing the burden that government places on the economic capacity of other sectors of the economy to innovate and expand.

The second driver, people should be enabled to become more active in resolving social issues, rather than relying on government, leads to attempts to reduce the role that government takes in providing many services and encouraging citizen activism.

Both these diagnoses and prescriptions might be questioned in serious economics and sociology, but I leave that aside. Also, critics from the left would say that these are just new formulations of a conventional liberal position, which argues on economic grounds for a small state. I’m leaving that on one side, too. The ConDem government has given these ideas importance in BigSoc, and so that is what we are playing with. In ConDem policy they are connected because reducing government expenditure and activity inevitably means present services or activities disappearing altogether, or being replaced by something less extensive. Making space for non-government enterprise at the level of the whole economy can also mean making space for individual activism in responding to social issues.

In a speech reported by the BBC, David Cameron, the UK Prime Minister, connects these two things: ‘My mission is social recovery as well as economic recovery’.

The BBC report, including a clip of Cameron speaking: http://www.bbc.co.uk/news/uk-politics-12443396

Another good political report from the BBC looks more comprehensively at the concept: http://www.bbc.co.uk/news/uk-politics-12163624 , and includes a lot of comments from viewers and listeners.

Existing activism and BigSoc?

As this report makes clear, virtually anything that has to do with activism, such as volunteering or people demonstrating commitment to and involvement in their locality or some other social interest, may be seen as BigSoc. Since in the UK a lot of such activism goes on, the government might be able to claim wide support for its concept and the press might be able to identify lots of BigSoc activity. In one of my BigSoc blog posts, I looked at the claimed evidence for ‘broken Britain’ and the need for greater volunteering, and came to the conclusion that the government was overstating its case: a lot of community involvement and volunteering goes on, more than the government claims. This post is at: http://bigsoccommsw.blogspot.com/2011/03/good-evidence-exists-for-strong.html

Similarly, an earlier post looking at stated Conservative Party policy on BigSoc found that this rather naively seemed to be unaware of a lot that goes on in local community activity:

http://bigsoccommsw.blogspot.com/2011/03/bigsoc-minnie-mouse-policy-minimal-and.html.

The problem with this approach to BigSoc is twofold. First, it demonstrates a general ignorance and naivety or, alternatively, complete denial about what valuable things are going on in local communities and suggests that the policy is based on ignorance and denial. Second, it will allow Conservatives to claim all sorts of activities as the product of its policy initiative, when they were there anyway.

Palliative care organisations such as hospices fall into this category: they are there, they are successful, they substantially fund themselves. They are therefore a good example of what BigSoc policy might achieve. However, as I argue below, hospices are rather unusual voluntary organisations, and their size and funding cannot transfer all that easily to other comunity activties. So people in hospices should not be too forward in claiming either that what they do can be replicated elsewhere, or that they are some wonderful example to others: that is calculated to irritate lots of local government and the voluntary sector, who do not have the same advantages.

Claims that BigSoc is everywhere are already happening. In another BigSoc blog post, I examined all the projects that had received a BigSoc award from the Cabinet Office, at the time twelve, although the details of one of these was missing from the Cabinet Office website http://bigsoccommsw.blogspot.com/2011/03/details-tell-all-analysis-of-number-10.html. There were, of course, a variety. But an interesting feature was that many of them were for really rather ordinary community activities, carried out with pizzazz. In my later post, I listed the top ten words for putting into your applications for a BigSoc award, things like inspiration, passion, life-changing: the whole list here: http://bigsoccommsw.blogspot.com/2011/03/top-10-words-for-getting-number-10.html.

BigSoc as chutzpah

In many respects then, the government is treating BigSoc as a marketing tool for things that it wants to encourage. You’ll have gathered from many comments in this blog that I’m unhappy about marketing as an approach to health and social care. In another BigSoc blog post (http://bigsoccommsw.blogspot.com/2011/02/bigsoc-is-not-pr-message-it-demands.html), I pointed to a PR wonk’s take on BigSoc; she was saying that people in government were treating it as a way of conveying a warm friendly image, in the face of criticism about cuts.

I connect this with Steve Burghardt’s recently published book on macro social work (Macro Practice in Social Wokr for the 21st Century Los Angeles, Sage, 2011), in which he describes community work as being ‘chutzpah meets humility’. The point is: if you are going to facilitate people to come together and make their own decisions, you have to take a step back out of the limelight and help them to work things through in their own way. One the other hand, you also have to have a certain amount of zip-a-dee-doo-dah to promote new ideas, get people engaged and push things along. It’s a difficult balance to achieve, and one of the skills of community work is achieving this.

I think the Conservatives understand the chutzpah bit, but not the humility. You can see this in the kinds of things that they support as BigSoc.

BigSoc is (in the Conservative mind)…

So what is BigSoc as the government sees it? Cameron has made a number of attempts to describe this.

The first general presentation of the ideas is the Hugo Young lecture in 2009: http://www.conservatives.com/News/Speeches/2009/11/David_Cameron_The_Big_Society.aspx

The conclusion of my analysis on this in the BigSoc blog (http://bit.ly/i3pD3L) is as follows.

To sum up the argument, Cameron is arguing that the size of the state leeches away personal and shared social responsibility. BigSoc policy aims to provide government to action to reverse that. Subsidiarity is the thing, giving responsibility to the lowest possible level in society. They will try to give individuals the responsibility and capacity for helping themselves, through family, education and welfare reforms. Where that is inappropriate, they will encourage shared action in neighbourhoods, and when that is not possible they will make the lowest level of government, local government responsible, and make it more transparent, accessible and responsive to active citizens.

In an article in the Observer, after some criticism of BigSoc, he says:

The big society is about changing the way our country is run. No more of a government treating everyone like children who are incapable of taking their own decisions. Instead, let’s treat adults like adults and give them more responsibility over their lives. That’s why, in reality, this is quite different from what politicians have offered in the past.

This is not another government initiative – it’s about giving you the initiative to take control of your life and work with those around you to improve things. It has the power to transform our country. That’s why the big society is here to stay.

The article here: http://www.guardian.co.uk/commentisfree/2011/feb/12/david-cameron-big-society-good

An article in the Observer recently claimed that some of Cameron’s ideas are from Schumacher’s famous book of the 1970s, ‘Small is Beautiful’. Quoting extensively from the book, I argued in the BigSoc blog http://bit.ly/dN1rvU , that, if so, it is a complete misunderstanding of Schumacher’s point. He is arguing that a policy of pursuing economic growth to achieve larger economies, with larger economic units consuming larger finite natural resources, is unsustainable. The outcomes of this growth model are the increasing use of finite natural resources to achieve merely transitory consumption. Present Conservative policies clearly aim at this kind of economic growth, which Schumacher criticises. Conservative BigSoc policy is completely antithetical to Schumacher’s position. It seeks to reduce constraints on big business in order to achieve higher economic growth. It sees the main constraint as big government, and so it wants to remove big government in favour of localism, because it thinks this will release economic growth. Schumacher does not talk about localism so much as the small and the human.

The BigSoc critics

In his Observer article, Cameron notes, fairly accurately, the criticism of the concept, and these are his answers:

It’s too vague: he rejects this because he is against creating one central design

It’s a cover for cuts: he says supporting social responsibility is a different matter and he has supported that for a long time; anyway, greater social responsibility will benefit society.

It will work in rich areas, but not where there are no resources: he rejects this because there is evidence of activism in poor communities.

It’s not new: yes, but he wants to encourage more of it.

Voluntary bodies are being squeezed: no, they will be restructured because the Conservatives will open up opportunities for voluntary bodies to bid for contracts for public sector activities. (To the extent, I would say, that they demonstrate emterprise thinking and chutzpah.)

Polly Toynbee and a range of commentators on her article cover most of the issues about cuts to voluntary groups. She distinguishes between small very local social groups and the organisations providing services, often under contract from the government already, although it may limit their preparedness to criticise government.  The fact that small groups fund themselves is irrelevant to support for that part of the voluntary sector that provide useful serviecs. She also criticises the concept of the BigSoc bank, providing development loans at commercial rates to help voluntary organisations compete for government contracts as part of her argument that government support is central to succesfsul voluntary endeavour.

http://www.guardian.co.uk/commentisfree/2011/feb/14/david-cameron-big-society-charities?intcmp=239

Similarly, a Jackie Ashley article sums up well the critics who say you cannot achieve BigSoc if you simultaneously cut funding to charities and voluntary organisations, because they are the major existing aspect of BigSoc. If you cut local government, those cuts will have a disproportionate effect on voluntary organisations, since local government will priorities its own staff and services.

http://www.guardian.co.uk/commentisfree/2011/feb/13/big-society-destruction-david-cameron?intcmp=239

BigSoc in practice

So what does BigSoc seem to involve in practice? To work that out I looked at a number of policies and practices, and you can follow the detail in the following  BigSoc blog posts.

What’s happening in the three continuing BigSoc ‘vanguard’ local authorities (one, Liverpool, gave up in a shower of sparks because local government cuts was preventing it from developing BigSoc policies and had reducing funding for voluntary sector BigSoc activities):

Sutton, in south London: http://bigsoccommsw.blogspot.com/2011/02/suttons-bigsoc-vanguard-tells-us-what.html

Windsor and Maidenhead, to the west of London: http://bigsoccommsw.blogspot.com/2011/02/details-tell-all-windsor-maidenhead.html

Eden, in the Lake District: http://bigsoccommsw.blogspot.com/2011/02/details-tell-all-windsor-maidenhead.html

Overall, what is going on in local government is not very impressive and not very imaginative – no chutzpah there. First, most of what they were doing they were doing anyway, they were just relabelling it BigSoc. sometimes openly. Second, many of the initiatives were about local involvement in planning; nice, but probably they should have been doing that anyway. The problem with participation in decision-making is that it is not very attractive to local politicians, because they feel they have been elected to make decisions and achieve their political objectives, not have them questioned by every Tom, Dick and Harry that turns up to public meetings.  Third, there were meetings with local citizens or with voluntary organisations to discuss what BigSoc might mean. These seemed to be part of getting more volunteers for things, especially if it meant reduced local council costs.

Another important aspect of BigSoc policy is what I call ‘enterprise’ thinking, and I have sometimes called it ‘businessification’, following John Harris’s critique of treating social work as though it was a business activity.  In many Conservative eyes, an important objective of BigSoc is that it is a local arm of the government’s aim to encourage the private sector to be engaged in what is now public sector activity; this is inherent in many of the government’s policies. Part of the reasoning for this is an opposition to bureaucratisation, by which Conservatives often mean unimaginative thinking which opposes change of the kind that Conservative politians would like to achieve. The answer to this is being enterprising, imaginative, creative and all these traits are assumed to be associated with the private sector, rather than the public sector. To the extent that voluntary organisations emulate that, they are good and not part of the public sector. To the extent that they just take government money for providing government services, they are bad, and just another aspect of the public sector.

It’s back to chutzpah again.  Conservatives like to see community activity that demonstrates chutzpah; humility and participation are not enterprising; they do not understand why you would need it. So only particular kinds of community activity are required, therefore, and activities such as continuing to build and provide end-of-life care through professional integrated community services (to give one example) do not have it.

Much of the rest of my blog has been about the debate on voluntary organisations. Here, the pattern is quite clear. Conservative commentary is anti the ‘establishment’ of the voluntary sector, which receives government money for providing services (http://bigsoccommsw.blogspot.com/2011/03/tories-reject-establishment-charities.html) they are really hoping for radical, enterprise oriented voluntary organisations with right-leaning policies enabling disabled people and single mothers into employment, for example. And chutzpah. A ‘society of the second chance’ is an Iain Duncan Smith phrase which seems to mean forcing people to take whatever second chances they can get, instead of staying comfortably on social security benefits.

BigSoc and palliative care

What does all this mean for palliative care? It’s a complicated picture. Most palliative care is in hospices in the UK, whereas a lot of non-specialist end-of-life care is with GPs and general health and social care services and BigSoc policy is different in these two areas.

Hospices are talked up by the Conservatives, including Cameron. I have commented before in this blog that this seems to be for two reasons. First, hospices raise a high proportion of their own funding, so they are not ‘establishment’ charities, in the sense that the government supports all their activities. However, they are not enterprising; they do not have chutzpah. The need for chutzpah if you want to appeal to the government is the reason for the success of organisations such as Marie Curie and Macmillan: they employ high-profile senior staff who trumpet successes in a glossy, businesslike way with lots of advertising and image. Solid service provision from your local hospice is a lesser priority.

Second, there is a sentimentality about end-of-life care, which politicians pick up from general public attitudes. Most people have little to do with the end of life, don’t like to think about it and support organisations that make them feel that it’s all going to be handled very nicely and kept out of their way.

On these two counts, BigSoc will have little impact on hospices, for so long as they are able to continue raising their own funding and put up some people with chutzpah. This means that the government does not actually have to make clear decisions about the extent to which they support end-of-life care as against other priorities, and it all sounds jolly good. I suspect that if they did have to think about it, they might not be so supportive, and might in particular want to see a reduction in the high costs of quality palliative care. The distance means that everyone can feel a warm glow of doing something nice with a little bit of funding and expressing support.

End-of-life care is not much involved in local authority and voluntary sector funding cuts, so it neither irritates government supporters by whingeing about cuts nor engages with the problems of local health and social care organisations. That will last until local service changes begin to affect hospices’ capacity to achieve home care.

Another factor is that most hospices, although theoretically voluntary organisations, and locally committed, are really part of the health service, and BigSoc does not talk a lot about the NHS. Health promotion and well-being are good things, but actual services are part of the public sector bureaucracy. Hospices do not generally have a lot to do with the local voluntary sector establishment, or with local government, and are much more affected by NHS policy. The more generous funding of the health sector tends to insulate them from the debates about BigSoc, at the same time as being a potentially desirable element of BigSoc.

So BigSoc is not a big deal for palliative care yet, but BigSoc policy is going to permeate lots of thinking about public services. This will have a particular impact on palliative care as the health and social care reforms that I discussed on Tuesday begin to affect palliative care. My next post will try to bring together health and social care reform, BigSoc thinking and end-of-life care.

This is the second of my posts looking at the whole situation in health and social care at the moment and its impact on end-of-life and palliative care.

It is clear that the government proposals on NHS and (to some degree) social care reform are in trouble. What will this mean and what will it mean for end-of-life care?

I did some detailed stuff on the proposals and what’s in the Bill in previous posts: search for ‘Health and Social Care Bill’; there are several posts in January 2011.

However, if you want a good summary of the characteristics and political impact of the proposals, look at the BBC news website, in its Q&A on the reforms:

http://www.bbc.co.uk/news/health-12177084 (this also has a nice diagram of the changes).

and its summary of views for and against them:

http://www.bbc.co.uk/news/health-12750695.

A more complex account of the issues may be found on the King’s Fund website:

http://www.kingsfund.org.uk/topics/governance_regulation_and_accountability/index.html#keypoints (start at the keypoints, then go on the background tab and the comment and analysis. Anna Dixon’s blog post on the ‘paradoxes’ in the reforms is worth a read, and so are some of the comments: the readers of the Fund’s blogs are better informed than a lot of comments in newspapers).

Are the reforms in trouble? Why?

The fact that the Health Secretary, Andrew Lansley has said that there is still room to amend the reforms suggests that they are: the Telegraph report on that here (I use the Telegraph to report on government views because it is a broadly government-supporting newspaper, so I can’t be accused of selecting press that might put a negative slant on things):

http://www.telegraph.co.uk/news/politics/conservative/8379284/Andrew-Lansley-signals-retreat-over-NHS-reforms.html

The reforms are in trouble for three main reasons.

It’s not privatisation

One of the reasons is not privatisation through marketisation (that is, reducing the public sector element of NHS provision, by strengthening that aspect of NHS care that is provided through a managed market). Of course, the usual suspects have said ‘Tories – get your thieving private sector friends’ mitts off our NHS’. The two main suspicions are (1) that American and other big healthcare companies hope to get in on running local commissioning and (2) that the ‘any willing provider’ policy integral to the reforms is likely to increase private sector participation.

The main concern there is cherry-picking. Private sector providers like nice cheap easy, repeatable procedures to carry out (hip and knee replacements, cataract operations like the two I have just had, and so on). If you take these out of the NHS, you leave the more difficult stuff for the NHS to do. As a consequence, they have to deal with the more complicated and expensive stuff and over time can be made to look even more unrealistically expensive than they are now. Also, they cannot train up their surgeons on the easy stuff, so they are going to be less skilled on the difficult stuff. Faced with these criticisms, the government has introduced some concessions to meet these concerns. Lansley says in an interview (link below) that this means any willing qualified provider, so the local commissioners will decide; they can choose to avoid excessive private sector provision if they want to maintain their local hospitals.

Also, patients can say they want their local hospital and I expect a lot of them will. After all, we all know that if there is any problem in a private hospital, they can’t cope and the patient is blue-lighted to the nearest NHS hospital. It’s only really naive believers in the private sector that are unaware of this. Also, things like palliative care just don’t happen in the private sector and since the main increases in service demands are going to be among older people with long-term problems, they’re not going to find really good care in the private sector of healthcare. Private sector domiciliary and community care is far more likely to stay directly commissioned from the public sector, even if providers are increasingly private or social enterprise organisations.

Is there any evidence that private sector companies are trying use the reforms to get into the NHS? Yes, of course; any private sector organisation is going to look for expansion opportunities, just like any energetic public sector manager. Try having a look at the website of the private sector consultants, Binley’s: they’re charging a lot of money for people who want to get up-to-date news on changes, NHS changes are the top of their list of ‘products’ enabling private sector organisations to ‘track’ the NHS reforms; they say they have 30 researchers doing nothing else. Yes, there is big money in prospect for the private sector:

http://www.binleys.com/Products.asp?CatID=13

It is a broad spectrum of important opposition

Not including, it has to be said, the official opposition, Labour. As with the cuts campaigning that I covered yesterday, they are somewhat stymied by the reality that many of the reforms explicitly build on their own policies, and they might well have wanted to do something similar.

No, the three main reasons why the reforms are in trouble are mainly other professional and political opposition.

The first is that the people who are intended to be major players in the reforms, the GPs, have turned out to be mostly opposed to it. There are supporters in the GP camp, mainly people who have been making GP involvement in commissioning work in, mainly rural, areas where the Conservative MPs come from. A few of these people can be (and have been) characterised as venal doctors keen on supporting a privatised NHS so that they can get rich(er); possibly because some of them really are like that. Consultants have also called for the Bill to be withdrawn, it seems because it may endanger the importance of the major local hospitals through fragmentation and privatisation, and therefore their influence. They have been trying to whip up concern about local hospital closures. See the Telegraph report of their concerns, for example. This presents a mish-mash of claimed concern for the NHS and their patients and complaints that they are not respected by politicians, who promised to leave the NHS alone: http://www.telegraph.co.uk/health/healthnews/8400872/Doctors-call-for-industrial-action-over-devastating-NHS-reforms.html

However, they are still negotiating on pay and conditions (like other public sector employees, their pay has been frozen, fancy the consultants being treated like the lower orders), so perhaps the government will be able to buy them off. Governments have been doing that since Aneurin Bevan, the Labour health minister in the 1940s.

Also, lots of people concerned about the management of the NHS are doubtful that GP consortia being responsible for commissioning the majority of services can be made to work. This is partly because GPs are considered to be mainly interested in treating their patients (although GPs I know are also scathing about the management of commissioning on behalf of their patients and it’s important to recognise that being able to refer your patients to the right treatment is an really important aspect of the role of GPs), but also because this will lead to further fragmentation in planning and management. Some others are concerned that it will let private sector healthcare companies in to help them manage it. If you think pct bureaucrats are the worst kind of management to have, wait until you see a management consultant: incompetence is miles better than financially motivated rapacity.

The second major reason for the trouble that the reforms are in is that the LibDem party, in coalition with the Conservatives who have dreamed up the plans, have now come out opposed to them. There will have to be concessions. The Telegraph report contains a video of Nick Clegg, the LibDem leader, distancing himself from the reforms:

http://www.telegraph.co.uk/health/8378143/Nick-Clegg-faces-crisis-over-NHS-reforms.html

Another account of the LibDem debate here:

http://www.telegraph.co.uk/news/politics/nick-clegg/8378236/Nick-Clegg-in-climb-down-on-NHS-reforms.html

An important influence in this has been the intervention by Lady Williams, Shirley Williams an ageing national political treasure on the left: interviewed by Simon Hattenstone in the Guardian, she said:

“I’m very worried about health. I’m a passionate believer in the health service, I’ve never used private medicine in my whole life.” She believes the NHS is “by and large wonderful” and the proposed restructuring is as unnecessary as it is dangerous. “We looked at [Andrew] Lansley’s white paper, and it’s got a lot of holes in it. For example, what happens if a foundation hospital has a deficit or a surplus, where does the money go, to whom is it accountable? There’s no system of accountability of a democratic kind, except for the bit the Liberal Democrats have put in, which is not very strong, but all credit to our guy for doing it.”

Williams is aware that critics argue this is a preliminary step towards privatisation of the NHS. And yes, she is fearful. “What I do know is that if there was any sign we were moving towards privatisation of the NHS, a lot of Liberal Democrats would not put up with that.” Would Nick Clegg? After all, power is pretty intoxicating, isn’t it? “Oh to be fair to the man, I think he would feel this was a red line.”

The full interview at: http://www.guardian.co.uk/theguardian/2010/aug/14/shirely-williams-saturday-interview

The third major reason, also political, is that while the reforms are likely to get through the House of Commons, they will be under much more pressure in the House of Lords. Lady Williams and her friends are clearly calling up a storm. Again, probably some more concessions.

There’s a good LibDem document which is perhaps the best available political statement in favour of the reforms – it’s significant that Appleby, providing a critique in the British Medical Journal, cites this, rather than the white paper or any Conservative statement; it’s just such a good explanation of the political case:

http://www.libdems.org.uk/latest_news_detail.aspx?title=Modernising_the_NHS%3a_the_Health_and_Social_Care_Bill&pPK=e73493ce-b0f0-46f8-b83f-c94ffac3ed63

This is worth reading to get an idea of the arguments against the ‘Tories red in tooth and claw’ critique you get from left-leaning sources.

Is there a real concern?

The government makes two main points. It argues, first, that reform is needed because UK health outcomes are not as good as in Europe. This point has been subjected to a statistical analysis in the British Medical Journal by Professor John Appleby of the authoritative King’s Fund: http://www.bmj.com/content/342/bmj.d566.full

He argues that UK outcomes on cancer and heart deaths are worse than some countries in Europe, but are coming down faster, so we’ll be better soon, that in other illnesses the UK does better and that much of the difference is down to how the data are collected and analysed, rather than actual differences.

In a later article, Appleby points to the British Social Attitudes survey results, which show increasing public support for the NHS, and evidence that the public thinks it’s improving. A link to Appleby’s article: http://www.bmj.com/content/342/bmj.d1836.full

And to a summary of the British Attitudes survey (actually co-authored by Appleby, so it appears his BMJ article is in the nature of an advert for his work – what an academic would call effective dissemination):

http://www.natcen.ac.uk/media/606952/nat%20british%20social%20attitudes%20survey%20summary%204.pdf

This report says:

The largest increases [in positive views of the NHS] have been among those with traditionally low levels of satisfaction. These include 18-34 year olds (up 32 percentage points since 1996, compared with an increase of 24 points among those aged 65 and over) and better-off households in the top two income quartiles (up 31 and 36 percentage points respectively since 1996, compared with an increase of 25 points among the lowest income quartile).

While satisfaction with the NHS among Conservative supporters fell initially when Labour came to power, it rose 12 percentage points between 1996 and 2009, reaching a high of 61% in 2009.

So actually it seems that people mainly like the NHS as it is. We know this, of course, because satisfaction surveys are not the most sophisticated way of measuring effective healthcare outcomes and most people could not imagine how it might be better if they’ve had (or they’ve heard that other people they know had) a broadly good experience. But all this does not add up to an overwhelming case for a very disruptive reform in most people’s eyes.

The second, and more important, point the government makes is that the NHS will have to cope with escalating demand and need and these reforms empower people in the NHS to transform the way they work to meet that demand.

You can of course go back to the horse’s mouth. Andrew Lansley gives an extended 42-minute interview on a doctor’s website at:

http://healthandcare.dh.gov.uk/andrew-lansley-talks-to-doctors-net-about-modernisation

(unfortunately, you have to sign up for other things – make sure you set your preferences); if you think 42 minutes is too long, set it going and do other things on your computer while it’s running; don’t do this at night, it’s very soporific. For example, he argues that cherry-picking will not be possible because if GPs set up an integrated care pathway, private sector companies can’t pick off individual procedures. The journo who interviews him puts serious criticisms (from doctors) to him, for example from specialist doctors who say they have studied to acquire the knowledge about what is effective, so how can GPs make these decisions, and, for example again, if things don’t work out, what are they going to do? He, of course, sounds eminently reasonable, and the interview doesn’t really put him under Paxman-like pressure, but it does give you a picture of what he thinks.

Overall, the picture is that it’s future population and medical cost pressures on the NHS that he has to reorganise to cope with, and if there’s not going to be much money, it’s clear that doing things better is the major way of dealing with those problems. The critics would say, of course, stop spending the money on silly things like maintaining an unrealistically significant place on the international scene,  settle for being a little country with not much international power but a really good lifestyle for citizens. Then you might have more money again, and you might give priority to citizens’ healthcare.

Will GP commissioning work?

The Department of Health is keen to say that GP involvement in commissioning has been very effective. If so, there’s not a lot of evidence on its website. One case study is trumpeted as showing how it will work, but is about a group of GPs who decided they wanted to get more counselling for their patients with personality and eating disorders and worked with a local voluntary organisation to provide it, which eventually got the contract. Here is the link:

http://healthandcare.dh.gov.uk/case-study-integrated-care-commissioning

There’s another case study based in my home town, Sutton, where Care Minister Paul Burstow has his base. This is about local authority and GP commissioning. In this case, the GPs and local councils worked together to keep patients at home rather than admitting them to hospital for three conditions. ‘A six-month pilot, based on just three medical conditions and a trial area of only 25,000 patients, reduced PCT admissions by 29 patients with long-term, high risk conditions and saved approximately £322,000.’ It is now being extended to two more conditions. Again, this is a small-scale project, rather than mass commissioning.

On the web: http://healthandcare.dh.gov.uk/case-study-sutton-integrated-health-and-social-care-pilot-shows-benefits-for-patients

Better integration with social care and local government

GP commissioning is not the only aspect of the reforms. A much greater welcome, across the political spectrum, has been extended to the arrangements for better integration with local authorities. And of course, if you are going to make things work better for an ageing population and a country that can’t afford medical developments, this is one important route to achieving it. One of the pluses is that better integration with local authorities will connect up health and social care services much better, and it builds on long-term attempts to improve relationships and joint work and planning. The minus is that this has been going on for forty years, and conflict and competition is still rife on the ground. One simple reason for this is lack of resources; both sides try to pass the buck as much as they can.

A more high-flown point about the failure to integrate, is that all integration efforts assume that NHS illness care is the most important thing. However, we are not talking about illness, we are talking about long-term care for people with complex social and health care needs as they age. And the NHS has withdrawn from all that, but still demands all the resources for its acute services, starving the much more important long-term care needs of resources.

As a result, healthcare (and DH generally) twists social care into being the mere servant of healthcare priorities. Remember that social work is about promoting social solidarity, resilience and cohesion so that a population can cope with the social pressure on it more effectively. Public health sits well with those priorities, but the NHS is about illness care, not wellbeing. Attempts to merge NHS concerns with public health and wellbeing are prone to disaster because the imperative to treat sick people twists all other social objectives out of kilter. This runs a serious risk of prioritising massive treatment problems instead of equally massive but rather more distant problems of health inequality and social cohesion.

I think of it as rather like the Japanese and their nuclear power industry. The Japanese don’t have reserves of fossil fuel, so if they want to run an advanced industrial society, they have to have lots of nuclear power. However, they also occupy a mountainous set of islands, with minimal coastal plains in which people can live, be industrious and build their nuclear power station, alongside a major geological fault on the earth’s surface which creates large earthquakes and tsunamis. So they keep quiet about the problems, and minimise the difficulties. The recent earthquake and tsunami has found them out.

Because people’s free health care is so important to them, what the DH does, like the Japanese on nucelar power, is run everything they do as subservient to the NHS, and just ignore or keep quiet about any other priorities that might interfere with it. That is why the DH is so bad for social work and social care. It also runs everything as though important care services such as end-of-life care is the same as but less important that acute care in hospitals, so that acute care always seems more important. That is why the DH is so bad for end-of-life care (but seems alright for palliative care, which is really only what the doctors and nurses want to do, and the less important doctors and nurses too, because they’re not concentrating on curing people). It is important not to forget these eternal verities about health care in the UK. Actually, what is more important is mutual social support, prevention and quality care in the long-term that affect everyone as they age. As I said yesterday, we should be aiming to love quality care, but theNHS is set up to love expensive acute care; they love money for treatment rather than less money for quality of life. The whole NHS healthcare system is set up to twist everything so that it fits the fantasy medicine of high-level surgery and heroic medical care.

In some ways, these are points made by the experienced civil servant, social services director and former Labour health minister Lord Warner, in a book: http://www.guardian.co.uk/society/2011/mar/22/nhs-reforms-essential-lord-warner

He argues, according to the Guardian, that Labour failed to ‘…achieve effective commissioning of healthcare, allowing an excessive expansion of the workforce, thus worsening productivity, and ducking the challenge of replacing seriously underperforming and unsustainable hospitals and other care providers.’ He is focused here on the way in which local campaigning often emphasises acute hospital care and the closure of acute hospitals rather than boosting the far more important provision of long-term care in the community.

The reforms aim to use enforced collaboration with local authorities to achieve this. I’m not hopeful, because as I’ve said, it never has achieved any change in the ‘acute-is-best’ NHS scenario yet. The DH trumpets ‘early adopters’ of health and wellbeing boards; these are 132 areas where they have set up shadow boards: http://healthandcare.dh.gov.uk/early-implementers-of-health-and-wellbeing-boards-announced

But if you look carefully, they haven’t actually done much. The DH general statement says:

Many local authorities already have projects in place to integrate services, including:

• combining health and social care support for dementia suffers (sic) to reduce hospital readmissions

• improved communication between health and social care professionals to enhanced the support package offered to vulnerable members of the community
• fast-tracking learning by integrated public health teams in local authorities.

Notice that this is not a brave new world; it talks about local authority projects. I wonder how genuinely collaborative they have been and whether they have been directed to social objectives and health prevention aims, instead of NHS treatment priorities. Notice that the leading achievement is to reduce hospital admissions for dementia sufferers (as I think they meant in their website); this is, it means hospitals don’t have their acute care priorities twisted by actually having to care for people with long-term problems.

This overall impression is supported by another entry on the DH website, the example of effective health and wellbeing board shadowing in Leicestershire: http://healthandcare.dh.gov.uk/leicestershire Again, this is in special project territory, with the aim of getting more health checks for people with learning disabilities. Nice, for example ‘supporting people with learning disabilities to interview Trust Board members about progress’ but not exactly mass commissioning of the full range of NHS services. It’s an important aspect of service, which you would hope to see developing, but a small development project involving a local voluntary organisation for a limited range of patients who are unserved at present is a million miles from commissioning the whole range NHS services. When the big boys of private health want a slice of the action over something that’s important to them, it’s unlikely that a little local group will get a look in, and the GPs would find it hard to resist the pressures of the big professionals.

The website also has a filmed interview with someone described as an early implementer. This is an accolade I’ve often been tempted to seek, and always discretion proved the better part of ambition. You really wonder why the DH decided this innocuous film of someone saying they’ve got an shadow health and wellbeing board was worth putting on their website. The interview is apparently conducted against the background of a conference, no doubt to make it stunningly as of the moment, in that artistic way that only Channel 4 news can really achieve. It features a pink-bespectacled NHS bureaucrat, now working for a County Council. I thought of not bothering to give you the link, since it’s one of the most pointless uses of internet technology I’ve ever seen, but I’ve decided to offer it as a good example of how to say absolutely nothing in 38 seconds – it was edited too, so she was obviously irrelevant to anything important for even longer. Don’t show it to any Tories: this is exactly the sort of unnecessary bureaucracy that they’re keen on killing off and she seems quite nice really: http://healthandcare.dh.gov.uk/early-implementer-cheryl-davenport-nhs-leicestershire-county-and-rutland.

This has a lesson for palliative care. Existing palliative care organisations which are providing services on the ground are quite likely to get their provision supported under the new system. But if extensive developments in palliative care are required in local hospitals, is this going to get priority when they’re fighting tooth and nail with big private providers for more major areas of acute care? Will it fall by the wayside because the big health providers will not be interested? This is likely, because exemplary care for amorphous things like the end of life is not what the big private providers are about. It works in America, I hear you say? Yes, but only because everything is private in the US, so there are financial mechanisms for all sorts of values-based bits of healthcare, and of course, unlike the NHS, they do not have to be responsible for a substantial slice of the population that presents social problems and does not have any personal, family or community resources.

Finding out what’s being said

To add to the more neutral stuff mentioned above (good old BBC), the Guardian’s page on the reforms covers the main points on the reforms well as they were published in January:

http://www.guardian.co.uk/society/2011/jan/19/nhs-health-reforms-unveiled

(with a nice Steve Bell cartoon in which surgeon Lansley bloodily extracts the innards of the NHS:

http://www.guardian.co.uk/commentisfree/cartoon/2011/jan/20/steve-bell-andrew-lansley-nhs-reforms?INTCMP=ILCNETTXT3487)

Why are they in trouble, then? The Guardian account of the BMA meeting which rejected the reforms of behalf of GPs, who are the main protagonists in the new system, is instructive:

http://www.guardian.co.uk/society/2011/mar/15/bma-meeting-rejects-nhs-reforms?INTCMP=ILCNETTXT3487

However, there has been something of a media war and the government tried to put the  positive side. The Guardian also reported on GP supporters of the scheme who turned up at a reception at No 10:

http://www.guardian.co.uk/society/2011/mar/15/nhs-reforms-doctors-accountants

and there was a subsequent exchange of letters, mainly representing opponents of marketisation, in which ‘fantasy economics’ had a part to play:

http://www.guardian.co.uk/society/2011/mar/18/doctors-fantasy-economics-nhs-marketisation?INTCMP=ILCNETTXT3487

What about comment other than in the left-leaning Guardian. I turn to the Telegraph.

A Tory MP and GP says that the reforms will change the NHS ‘beyond recognition’:

http://www.telegraph.co.uk/health/healthnews/8392556/David-Camerons-health-reforms-risk-destroying-the-NHS-says-Tory-doctor.html

Her criticism is that it’s good to get rid of a middle tier of NHS bureaucrats, but NHS planning should not be done by an unelected regulator (Monitor, the much-expanded financial regulator in the plans) and local GPs have too much to do treating their patients. Also, stripping out two tiers of management is really top down, and the Tories are not supposed to be being top down.

If you want to see Conservative official policy on health, this is the link to the election manifesto, which says ‘where we stand’:

http://www.conservatives.com/Policy/Where_we_stand/Health.aspx

But I searched for ‘NHS Reforms’ on the Conservative Party website and in the total returns found only one passing mention by George Osbourne in a party speech in 2011; most of the entries are much earlier. The Party obviously does not keep its website up to date, or else it’s keeping quiet on NHS reforms.

You can’t search the Labour website, I’ve said before that they don’t like you to find out anything they don’t want to tell you (although it is easier to read than when I last assessed it – but I suppose that may be because the NHS has renewed my eyes). They don’t really talk about policy there, but there are one or two items telling you how David Cameron has broken his promises to protect the NHS, but not a lot of detail. I worked hard to find these by ploughing through the site map, so here they are:

http://www.campaignengineroom.org.uk/frontline-nhs

I’ve already mentioned the very good LibDem statement explaining the case for the reforms, but here’s the link again:

http://www.libdems.org.uk/latest_news_detail.aspx?title=Modernising_the_NHS%3a_the_Health_and_Social_Care_Bill&pPK=e73493ce-b0f0-46f8-b83f-c94ffac3ed63

These are the positives that the critics have to argue against.

The Social Enterprise Coalition, whose sector is one of the intended beneficiaries of the reforms enabling non-public providers a chance of getting involved, focused on a concern that NHS staff would find it easiest to go for privatisation because they didn’t know enough about social enterprise to use it properly.

http://www.charitytimes.com/ct/NHS_reforms_must_shield_against_privatisation.php

This is a thoughtful point, and the palliative care sector, along with many voluntary organisations, could draw on their own experience to support this. Most NHS commissioning is done from the perspective of people who mainly only know about the NHS and do not have the time or knowledge to build alliances with small local organisations, or to support them to develop. Privatisation may come about by default.

A good realistic website, which usually contains links to the latest news, is the Royal College of General Practitioners’ commissioning website. They are trying to improve GPs’ skills in commissioning and getting feedback from their members about what’s happening on the ground, so this is a really good site for understanding how GP commissioning is going to work:

http://www.rcgp.org.uk/centre_for_commissioning.aspx?gclid=CJrznKuW9KcCFY0hfAodphr3bQ

This is the daily news update for today:

General practice must embrace change to improve quality of patient care

GP reforms’ leaders on boards of private firms

Why the NHS needs to be reformed

Private firms set to join NHS Board

Consortia must save £4bn by 2014

There could be no better evidence of the likelihood of serious privatisation and reductions of funding than these headlines from just one day.

And here is a broadly supportive comment from a blog, and some of the supportive or critical comments received:

http://bellagerens.com/2011/03/13/those-nhs-reforms

Among the points made are comments that many people involved in health and social care would agree with, that neither central government nor PCT commissioning has been particularly effective, and improvements in effectiveness are certainly needed. There are also some ways in which these reforms might help; whether they do will depend on how they are implemented.

Conclusion

Writing a conclusion sounds a bit like finishing off a student essay, but I feel I should get to some sort of summary of what I think, having looked at this stuff. In a few sentences, it’s this.

It’s clear that reforms of NHS provision are needed, to cope with demographic and medical developments.
I have probably also made it clear over the years of this blog that I yield to nobody in doubting NHS commissioning, which I think is very distant from the priorities of patients and the communities they live in; I have never seen any genuine engagement in the community from NHS commissioners, but I’ve seen a lot of worries about the budget and relationships with big providers; hence I am also doubtful about the value of PCTs as at present constituted. So I’m up for reform, but I want to make sure it improves things and I think the general opinion is that this might not be the right way to go.

Evidence of successful local collaboration is of small-scale projects with limited service user groups, rather than extensive broad service commissioning. This is likely to continue. It’s good to see, but it’s no evidence that GP commsisioning will work for everything.
It looks as though proposals for universal GP commissioning are over-optimistic, but greater bottom-up professional engagement, and not only from GPs but other professionals and from social care and local government, would probably deliver a better system.

Campaigning by critics of privatisation have already achieved some concessions, but it is clear that marketisation will go ahead, because the Conservatives have a majority and believe in it and most people (like me) are not convinced by NHS bureaucracy and are happy to see some change. In this way, I think NHS bureaucrats are a bit like child protection social workers – they have the kind of job where something is bound to go wrong and they’re bound to be blamed for it.

While there are many opportunities for private sector input, there is everything to play for in defending local services against excessive cherry-picking and disruption by private sector companies.

There is broad support for collaboration with local health and wellbeing boards, and some good joint projects: there will have to be a better focus on long-term care, prevention and care policy and away from over-emphasis on local acute hospital provision.

To achieve better end-of-life care, we need to put effort into supporting better integrated long-term care, especially for older people and in dementia services, because that is where most end-of-life care happens, and therefore we need to support the shift from acute hospital care to better community care, more effectively integrated with good palliative care in hospitals so that people’s end-of-life care needs are better met wherever they are.

Being at recent roadshow about the National End of Life Care Programme’s Social Care Framework means that I’ve picked up some of their other publications. I may be old-fashioned, because I could quite easily see them on the website, but actually I don’t look at things that are not directly relevant to me, so until I see them in physical form, I don’t really give them a going over.

If you need to link to the Social Care Framework, here it is:

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

If you need to find the website listing of the NEOLCP’s documents, here it is:

http://www.endoflifecareforadults.nhs.uk/publications

Bizarrely, the NEOLCP seems to use pictures of trees and flowers a lot: it seems to be symbolic of the way through the woods; either that or it’s the very cheapest stock pics. The Learning Resource Pack for staff in housing, particularly care and support staff in extra care housing, is one of these. You would expect a few pics of housing. In view of the fact that they major on pics of healthy and happy looking older people (nobody can ever look depressed or grotty in a government publication) you would think they could come up with pics of healthy and happy looking housing – actually there’s only one of these in the 40 pages. I presume their public relations people tell that that people sell things better than buildings. The weakness of this is that we are not looking to be sold something in these documents; what they should be doing is using the illustrations to show us what to do.

This document is also unusually text-heavy for the NEOLCP, and there’s only one flow-chart – can this be a first for the Department of Health?

It is clearly aimed at housing staff who don’t have a lot of knowledge of the care system. Chapter 3, for example, lists professionals who can help in end-of-life care. I, of course, turned to what it says about social workers. Here it is:

Social workers can provide emotional and psychological support especially at difficult times in people’s lives. They aim to see the individual as the “expert” and, using a person centred approach, offer support with no judgement value. They can act in a care management role as well.

How can they help?

• Assessments.

• Liaise with other professionals.

They can facilitate:

• Social inclusion.

• The person’s rights.

• The person’s choice.

• The individual’s views.

• All done with respect for the individual.

• Help the individual complete a person centred plan.

• Support the individual and their families and/or carers. (p 12)

This is probably a realistic view about what most local authority social workers do, but it doesn’t help housing workers to understand what a social worker in general might offer, if they’re a palliative social worker. And is all this respectful ‘expert service user’ and person-centred approach not also done by other people? If I were a housing worker, I might think I could do that naturally – what do I need a social worker to do it for? And don’t any of the numerous varieties of nurses not do that too (I’ll answer my question, yes they mostly do). Many of the other pen pictures of professionals are similar in their partial description, but the social worker description is particularly limited. For example, occupational therapists are acknowledged to work in a number of different settings and apparently ‘…help an individual who has a physical, psychological or social problem that interferes with their ability to carry out normal everyday activities…their aim is to enable people to achieve as much as they can for themselves.’ (p 13). Well yes, but I would think most people working in end-of-life have similar objectives and concerns.

This section illustrates the way in which many accounts of multiprofessional practice in health and social care are over-simplified, with the aim of making generalised distinctions which do not stand up – who does what in each locality tends to vary according to the settlement between professions in that area.

But the rest of the document contains good information about medication, common symptoms, mobility and the last days and hours which would benefit a lot of care workers whatever their role.

This document is produced in cooperation with Housing21, a well-experienced housing association.

National End of Life Care Programme/Housing 21 (2009) End of Life Care: Learning Resource Pack: Information and Resources for housing, care and support staff in extra care housing. London: Department of Health.

On the web: http://www.endoflifecareforadults.nhs.uk/assets/downloads/pubs_EoLC_learning_res_pack_housing.pdf

A little while ago I posted about a evening experience with an organisation for homeless people in Bratislava, Slovakia. One of the young men I went out with that evening recently emailed a comment about homeless people dying on the streets: how little you can do, and how someone may die unexpectedly. Even though you provide all the care you can, people are still at a high risk of ill-health and death if they are homeless.

The National End-of-life Care Programme in the UK publishes a very good guide to good quality end-of-life care for homeless people; it mainly refers to hostels, but covers broader issues as well. You can get this on the internet:

http://www.endoflifecareforadults.nhs.uk/assets/downloads/RTS_Homeless___Final_draft___20101211.pdf

National End of Life Care Programme (2010) End of Life Care: Achieving Quality in Hostels and for Homeless People – a route to success. London: Department of Health.

Among the suggestions are getting homeless people to do some advance care planning, so that their wishes are known if they are found dead, and finding a way of memorialising their lives in a place that was important to them. A memorial event may allow people who knew them and staff in hostels or homelessness projects to deal with some of the upset they feel, having often tried so hard to help.

Volunteers working in homeless need training in helping people who are affected by families and friends of homeless people who die.

Projects also need to think about how they deal with reactions to people dying: openness if usually the best policy.

I said a couple of days ago that we need to think about palliative care for homeless people, and now see in the recent NCPC magazine Inside Palliative Care a feature about a St Mungos/ Marie Curie collaboration to do just that. Power to their elbow.

There has, understandably, been uncomprehending and angry coverage by press and radio of the report by Ann Abraham, the Health Ombudsman, on the lack of care of ten older people by the NHS. While this has focused on the lack of concern and dignity for older people in the NHS, I was struck reading these case studies that they are mostly about end-of-life care. This is because many of the patients were actually known to be dying, and even if they were really quite well when the NHS got their hands on them they died shortly afterwards.

Plan for end of life in all older peoples’ care

In both healthcare and in social care we really need to stop thinking about our service users as people who are receiving treatment and care only. They are also people who, being in the older age-group, are also approaching the end of life. So our care needs to integrate at all times how we are going to care for them if the end of life comes alongside this particular care package we are involved in. In fact, I wish we could stop talking about care packages and treatment ‘policies’ and guidelines and instead look at the right way of working with human beings, who need specialist care and also who need planning for the end of their lives.

Here are some examples of what I mean (and see below Miss C’s case on turning off life support):

Mrs J: In the three hours or so that Mr J had been in the waiting room, nobody spoke to him or told him what was happening to his wife. As a result he came to believe that her care had been inadequate. He thought that he had been deliberately separated from her because hospital staff had decided to stop treating her. ‘They let her slip away under the cloak of “quality of life” without stopping to think of any other involved party.’ He felt the hospital had denied them the chance to be together in the last moments of Mrs J’s life and he did not know what had happened to her.

Mrs R: Her daughter felt the fact that staff did not give her mother food or drinks was effectively ‘euthanasia’.

Mr W: We uncovered very troubling possible explanations for the failure to review Mr W’s fitness for discharge. The doctor caring for him was no longer actively treating him; the implication being that he would develop another chest infection from which he would die. The tone of emails exchanged between a social worker and Trust staff suggested they regarded Mr W’s daughter’s concerns as a nuisance, and as potentially preventing a bed being freed over Christmas. This appeared to be their priority.

Mr L: Mrs L said that her husband should not have been given olanzapine, which had reduced him to a state in which he could not function, and that he had developed pneumonia which had not been recognised. These failings had ‘fast-tracked her husband to his death’ …

In all of these cases, the poor care and lack of concern that the NHS demonstrated actually led people to think that they were actively killing their patients for convenience. I think we all have to take some responsibility to make sure that our actions don’t lead people to a profound lack of trust in health and social care.

Discharge bed-blockers without concern for the community

But what can we do about it? For one thing, we could act on some other features that stand out in these cases. One is the couldn’t-care-less attitude to discharge arrangements. There’s a distinct impression that the attitude is: these bed-blockers need to be got out got out whatever the circumstances. I think we should outlaw the term ‘bed-blockers’. A bed-blocker is there because the hospital concerned has not been able to coordinate its care adequately with community services and ensure that someone has been helped to achieve independence. In many cases here, their independence and quality of life was actively undermined.

And, incidentally, bringing forward discharges to just before Christmas and bank holidays rears its head frighteningly frequently. This is evidence at least of failure to appreciate the difficulties in delivering community services. Worse, perhaps, it shows callous disregard of good care in the face of resource pressures in hospitals.

Here are some examples of what went wrong as a result (and see below Mrs N who also got bad service over Christmas):

Mr D: His discharge, originally planned for Tuesday 30 August, was brought forward to 27 August, the Saturday of a bank holiday weekend… An ambulance booked to take him home in the morning had not arrived and at 2.30pm the family decided to take him home in their car… On arriving home, his family found that Mr D had not been given enough painkillers for the bank holiday weekend…Mr D died, three days after he was discharged, on the following Tuesday. His daughter described her extreme distress and the stress of trying to get his medication, fearing that he might die before she returned home. She also lost time she had hoped to spend with him over those last few days.

Mrs Y: …was diagnosed with a fracture of part of her pelvis. She was kept in overnight, and discharged the next day with painkilling medication that included ibuprofen. No follow-up care was arranged for Mrs Y and it was only five days later on 2 June that the hospital faxed a discharge summary to Mrs Y’s GP. The summary did not contain details of the medication which had been prescribed. [I think this was also probably over spring bank holiday]

Individualised focus excludes families

The other thing that any social worker involved in healthcare will tell you is that nurses and doctors often focus on their personal clinical responsibility for their patient too much, and so miss out on that patient’s social relationships. They usually do not record who family members are (except for a ‘next of kin’), do not know their names, know nothing about their relationships with their patient, do not concern themselves with their feelings or interests and do not see it as their responsibility to keep them involved.

Here are some examples of the consequences (and look back again at Mrs J’s case where the hospital left her husband sitting in a waiting room for three hours when he could easily have been with her at her death):

Mrs R was not offered a bath or shower for 13 weeks in Southampton General Hospital and staff did not help the family to bath her, even though she was scratching so much, they searched for nits. She had nine falls, only one of which was recorded in the nursing notes, and no assessment or protection on the spurious grounds of not abrogating her human rights:

Mrs R’s daughter described her father as a robust man but he was in tears seeing the bruises. He died shortly afterwards and she felt he had ‘died of a broken heart’. Overall, Mrs R’s daughter was left feeling that ‘there was a lack of concern and sympathy towards patients/deceased and [the] family’.

Mrs H: We also found serious shortcomings in the Trust’s communication with her niece. Underpinning these serious shortcomings were failures to carry out appropriate assessments and to develop personalised care plans, failures to understand Mrs H’s relationship with her niece…

Miss C: …in practice the Trust allow senior nurses to [turn off life support], if the patient’s family is present and in agreement. If the family disagrees, nurses must seek a medical opinion. Here, by turning off Mr C’s life support against his family’s wishes, staff acted contrary to the Trust’s practice. Staff could reasonably have accommodated the family’s wishes and delayed switching off Mr C’s ventilator for a few minutes, even if he had already died and life support was no longer serving any purpose. As his daughter said later ‘We would have liked the opportunity to have the peace of mind of sitting with my father and of praying for him. I have the feeling that I failed my father’.

Mrs N: The Foundation Trust should have concluded in October 2007 that it was likely that Mrs N had inoperable lung cancer. Instead, they focused on obtaining a full diagnosis and neglected to manage her pain. Both this and delays in scheduling investigations [over Christmas] and reporting the results contributed to Mrs N not being treated for her symptoms within two months of her referral (in line with Department of Health guidance). The delayed diagnosis also meant that Mrs N was ineligible for full attendance allowance, which could have helped the family to care for her, until January 2008.

Revising systems is not enough

The answer to this is apparently a compensation payment of between £1,000 and £2,000 (but not always) and a promise to improve their systems. Frankly, in one or two cases, it looks as though medical or nursing actions led to deaths.

There are so many cases among the others that have not been reported on that I suppose there would be nobody left if you sack the chief executives or trust boards for their failures in management (remember all these people had complained and were sent away by the NHS before the Ombudsman can look at their case). But I do think we should be looking at substantial penalties for managers and Trust Boards where such dreadful behaviour occurs in organisations that they are responsible for. I cannot understand why putting the call button, food and drink out of reach of patients has not been met by severe penalties for these staff and their managers rather than a ‘serious incident meeting’ resolving to change their systems. It is just unimaginable that any human being can consider that this is acceptable behaviour whatever their ‘systems’ and ‘policies’.

The report even makes it clear that the ‘special meal times’ provision that has been introduced to ensure that patients have time to eat and drink and staff have time to help them has gone astray. This is because it means that family members are not allowed to feed their relatives in hospital, and the staff still do not bother; in one case here ‘chatting in the nurses’ station’.

As a result you have to question, like this relative, whether the NHS response is adequate:

Mrs G: A 22‑year‑old student doing her final year exams, still getting over the loss of her mother and grandmother, Mrs G’s granddaughter then brought her complaint to the Ombudsman. She said that although the Practice had admitted errors, they had not said why they had occurred. She wanted to know why it had taken her grandmother’s death to highlight the mistakes, and whether her death had been preventable. She said ‘I just feel let down by the system and that my Nan died to save others’.

The Report’s on the internet; pour yourself a strong drink before reading it: http://www.ombudsman.org.uk/__data/assets/pdf_file/0016/7216/Care-and-Compassion-PHSO-0114web.pdf

The citation: Parliamentary and Health Service Ombudsman (2011) Care and Compassion? Report of the Health Service Ombudsman on ten investigations into NHS care of older people. London: TSO.

Back from a conference in Bratislava, Slovakia.

Writing this post from my ‘Social work around the world’ blog: http://intsw.blogspot.com/ about my adventures on the less touristy streets of this lovely central European city caused me to wonder how much attention we are paying to homeless people in palliative care everywhere. People die on the streets and their dying weeks, days and hours must be miserable. The young men who took me out, as social work students of Comenius University who therefore have to put up with my lectures, were well aware of palliative care; I wonder how many of the volunteers of our homelessness charities are. I’ve no doubt that in Britain the Commander would get sensitive attentions from young people running similar organisations to Nota Bene (the streetwork arm of the local ‘Big Issue’) and some healthcare. But a good death?

Two former students working for Nota Bene, the Slovakian equivalent of St Mungo’s, take me out on a ‘finding’ evening (as opposed to a static evening, where they serve soup at a known location and people come to them). they translated this as street-walking – I said that had other impolications. Nota Bene was founded some years ago from the Comenius University school of social work (which I am visiting) as a practical project, operating alongside their project for drug users.
Link to the Nota Bene streetwork site: http://www.notabene.sk/?streetwork

Hefting a giant medical kit, and rucksacks with flasks of hot soup and other possible needs, we find the Commander and his female friend nesting behind a barrage of large dustbins in a covered area surrounded by flats. A radio is quietly playing. Shouting ‘Good evening, Nota Bene’, as a warning several times, Pauli wheels a dustbin away to reveal them camped on the ground under a hot air vent from a restaurant.
I am introduced. ‘Ah, English’, says the Commander, remembering his smattering of many languages from a long gone sea-going career. He announces he will play a serenade for me, and a passable harmonica rendition of ‘She’ll be coming round the mountain’ assails the night air. Various local residents come by to drop in their rubbish, or walk their dogs, while Sergio unpacks the medical kit. A lady in a blue coat hovers.
Helping the Commander to pull off his boots, Sergio unpicks soiled bandaging, and re-dresses the Commander’s ulcerated legs, spraying with antiseptic and smoothing in paraffin cream, while Pauli hands a mug of soup to the lady. A cheerful conversation ensues throughout the long period of dressing. Trainers are produced from a rucksack, softer than the sodden boots, which are left to dry by the air vent. They ask for a new coat, but only a sweater is offered. Nota Bene does not get enough clothes donated: the Commander already has a coat, so a new one is not a priority.
We wheel the dustbin barrage back, and the blue-coated lady engages us in conversation. She is a local resident who sometimes helps the two rough-sleepers, wanted to know what we were doing. It’s good she is positive, not everyone agrees with helping homeless people.
The Commander apparently, is a fixture with his harmonica in a local food market, making enough money to get by. They will be back in a few days to check on his legs again.
A drive through the outskirts of the capital brings us to an area of semi-derelict garages by a railway line. The laptop is extracted from its concealment, and checked: every known living site in the City for homeless people is noted with multicoloured flags in Google Earth, which gives an overhead photography view guiding them to the exact garage. the new social worker uses technology. The garage is occupied by a family who own this property, but no house or flat. A number of possibly aggressive dogs wander around, Sergio emerges from the van cautiously, morsel in hand to tempt a canine appetite.
But no, the dogs are in the control of various members of the family. A visitor from another town tries to extract a donation, but they are all drinking and invading their territory seems unwise.
Another drive, and we park nose forward for a quick getaway about 50 metres from a thriving main road, in some fields by a derelict house. Conversation is audible from an upstairs room, but the people living here do not respond to cheerful calls of ‘Nota Bene’. They are perhaps in the midst of drug-taking or glue-sniffing.
A passer-by has alerted their control centre to possible incursions in a redundant school in a nice area of town. It is in darkness when we get there, and local residents do not answer their doorbells. Eventually, Sergio and Pauli clamber over a fence, more calls of ‘Good evening, Nota Bene’, and, powerful torches in hand, search around the building, then go in. Nothing; perhaps a homeless occupant has moved on, or lies doggo or drunk.
Driving back to the main road, we see some more garage blocks, backing on to some derelict land by another railway. These are unknown to them: ‘Just the sort of place for us’. So we get out and wander round. But these garages are well-kept and locked, we progress on to some abandoned gardens, but there are no signs of nest-making.That’s it for today: no time to visit a pregnant woman, often abused by her partner and living under railway arches some way away. She is slated for a visit tomorrow.
Bratislava has only limited hostel accommodation, prioritised for people who have had medical treatment. There is little opportunity to get people off the streets. Housing is expensive compared with local wages and the hand out of state housing at the end of the communist regime has led to a shortage of public housing.