Discovered through Twitter, an Oregon hospice social worker who publishes through her Sacred Vigil Press, booklets aiming to help families carers and patients with psychological and spiritual issues.

http://www.sacredvigil.com/index.html

In its last few months, the Commission for Social Care Inspection reported on a thematic inspection of Safeguarding Adults; this is the jargon for making sure that vulnerable adults are not abused. The report shows that there has been a lot of progress, that service coverage is extremely patchy and that practice in protecting someone who has been found to be at risk of being abused is very underdeveloped.

Hospices need to listen to this, because although they are not covered, the prevalence study of older people living at home showed that between 2.4 and 4% are likely to have been abused or neglected in the previous year. Since most hospice patients are elderly, a caseload of 1000 patients a year should have around 30 cases. How many hospices are really proactive in making sure they protect their patients and families from abuse – their families because of course the patient may be an abuser.

CSCI inspection report:
Commission for Social Care Inspection (2008) Safeguarding adults: A study of the effectiveness of arrangements to safeguard adults from abuse. London: CSCI.
Website: http://www.cqc.org.uk/_db/_documents/safeguard%5B1%5D.pdf
Prevalence studies: O’Keeffe M, Hills A, Doyle M, McCreadie C, Scholes S, Constantine R, Tinker A, Manthorpe J, Biggs S and Erens B (2007) UK study of abuse and neglect of older people: prevalence survey report. Completed for Comic Relief and the Department of Health. London: National Centre for Social Research

The original internet publication of this report has disappeared – apparently Comic Relief the publisher could not be bothered. You can see a summary at:
http://www.natcen.ac.uk/natcen/pages/publications/research_summaries/NC234_RF_OlderPeople_web2.pdf

Mowlem, A. Tennant, R., Dixon, J. and McCreadie, C.(2007) UK study of abuse and neglect of older people: qualitative findings. Completed for Comic Relief and the Department of Health. London: National Centre for Social Research

http://www.natcen.ac.uk/natcen/pages/publications/research_summaries/UK_Study_of_Abuse_%26_Neglect_of_Older_People_Qual_Findings.pdf

Another day another clinical review. This one, led by the social work team, was mainly about issues in working with African people in a UK setting. As part of the discussion, though, an interesting exchange about the impact on families of people who don’t want to talk about their death.

Much of the discussion was about children, and the need to get a mother to acknowledge their impending death, so that they can work things out with their children and plan for the future. Although this is often an issue with African peoples, it also affects every ethnic group, and particularly younger patients. Nurses and social workers felt that this was an important issue to overcome for the sake of the children.

One colleague asked whether it was just as important for adults in the family. The view among nurses (no doctors present) was that their main priority was the patient, and whether adults, spouses and siblings for example, could talk with their patient about their position was that adult’s responsibility.

But social workers have, ethically, just as strong a responsibility for enabling family communication for everyone, including adults, and in general for the functioning of the family. As an advice worker pointed out, knowing that someone was dying is often crucial for securing the spouse or partner’s immigration status, and that, in turn, may well have an impact on children.

The point is a wider one, though. Should the assumption be, for a social worker and for other professionals, that another human being, just because they are an adult, is a lower priority for help than a child? You might think so when you compare the anxiety about deaths of children with the shrug of the shulders when it’s another old person who dies alone. What do you think?

Looking at government information publications, I see there’s a consultation about the care and protection of equines (horses and the like to you and me). Well, it’s often said that the British are more concerned about the care of animals than human beings, so I looked at it (there are consultations on other groups of animals too, all a result of the Animal Welfare Act 2006, trumpeted as ‘the most significant change in animal welfare legislation in almost a century’ on the Defra website).

Here’s a quotation:

The law requires that you must take reasonable steps to ensure that it [your equine]:
-Has a suitable environment to live in;
-Has a healthy diet;
-Is able to behave normally;
-Has appropriate company;
-Is protected from pain, suffering, injury and disease

There are then detailed recommendations for what you should do; I wonder if we should have this for the care of children, older people, disabled people…

But then of course we all know how to care for them, naturally, as we’re humans too, and we don’t have any responsibility for them because we don’t own them. What do you think?

The relevant page of the DEFRA website: http://www.defra.gov.uk/corporate/consult/welfare-equines-cop/index.htm

One of my publications flops on to the desk in a new book on evidence-based practice published in English from Germany, and containing papers by a stellar list of people involved in EBP. Unlike many books on EBP, this one is not a text telling you the claimed evidence about some aspect of social work, or a book telling you that everything you do should be based on evidence. Instead, it is suitably critical of the both the concept and how it is used; or at least mostly, Bruce Thyer is, as always, messianic about it.

At the conference on which it is based, one of the American enthusiasts for EBP told me how shocked he was that a pristine academic idea had been adopted by governments to tell social workers what to do, or restrict what they can do. This was not what he thought he was doing, and he could understand why people from outside America were critical: a useful contributor to improving professionals’ individual practice has been taken over as a rationing and controlling device. I don’t think Bruce would be repentant, however, because the enthusiasts think, like governments, that everyone should be using EBP.

My contribution to this was an analysis of the ‘evidence’ in the NICE guidance on palliative care to show that evidence is analysed from a (healthcare) point of view, which invalidates it for other practices. Therefore, practitioners need to interpret understanding wisely as part of their own (in our case, social work) practice.

I pointed out that if you look behind the generalised statements, NICE promotes the grades of psychological practice (for which it openly says there is little research evidence) that exclude social workers and nurses and says that only psychologists and psychiatrists can practise at the highest levels of psychological intervention, on the basis of a range of studies where most of the work was done by nurses and social workers.

The problem for psychological and social work in healthcare, I go on to argue, is that the focus of research is on healthcare objectives. So, again an example from this publication, while very good research on palliative day care shows that it does not meet quality of care health objectives, all the evidence is that patients like it. Why the inconsistency? Because day care has social care objectives, which nobody has bothered to investigate because they are not healthcare objectives for which there is loads of research money and about which politicians and healthcare practitioners and administrators are mainly interested.

Payne, M. (2009) Knowledge, evidence and the wise person of practice: the example of social work and social care in palliative care, in Otto, H.-U., Polutta, A. and Ziegler, H. (eds) Evidence-based practice – Modernising the Knowledge Base of Social Work? Opladen/Farmington Falls, MI: Barbara Budrich: 77-94.

The book is: Otto, Hans-Uwe, Polutta, Andreas & Ziegler, Holger (eds)(2009) Evidence-based Practice – Modernising the Knowledge Base of Social Work? Opladen: Barbara Budrich

The publisher’s website: http://www.budrich-verlag.de/index_en.php?SID=93fc6a0abb9674f664c13534e55091dd

I’m not sure if entitling this post with ‘sex’ will lead to its being banned by all sorts of hospice computer systems, but anyway, here goes.

I’m having a sex day today, not personally you understand, but in trying to write up the outcome of a clinical review. Briefly, the patient was a youngish man whose illness meant that his formerly active sex life was severely curtailed and he was having sexual feelings that he thought were inappropriate.

Part of the discussion revolved around the skilils of eliciting discussion on sexuality. As one nurse put it: ‘After we’ve asked them whether they’re married, that’s as far as we go’. I’m sure it’s not quite like that, because I’ve seen some extensive discussion of sexual issues in case records, for example with men with prostate cancer. However, generally there was a feeling that practitioners did not broach sexuality issues, and would not go far into them if they were raised. One said: ‘I asked a patient once and he said, if he did tell me there were problems with it, what was I going to do about it’.

Partly, not talking about sex was about self-confidence, because not being able to do something about an issue is quite a common experience of many different aspects of palliative care. Although, I suppose nurses and doctors expect to be able to ‘do things’, rather than just discuss them, while social work and spiritual care practitioners might feel more comfortable with just having a discussion that has no action-oriented outcome. Therefore, the suggestion of some training on communication about and intervention with sexual issues seemed apposite. This had the sense of getting some ‘tips and tricks’ for raising sex.

Actually, I think the issue for many of us is not raising the issue but fear of a ‘what are you going to do about it?’ We’re not talking here of the traditional residential social work concern about whether you show someone with learning disabilities how to masturbate, or dial the number of the ‘massage’ service for the physically disabled person. Nowadays, technology means that even the most disabled person can speak the prostitute’s phone number into the dialling device and use their door security device to open the door to the prostitute themselves. I remember an interesting discussion about providing aids and adaptations for a disabled couple in a social services department, where the occupational therapist was convinced that the claimed need for the equipment that the service users were asking for was to achieve more convenient and comfortable sexual intercourse, but this was unstated, and other reasons were given. In the end, we decided ‘so what?’ and provided the equipment. What would a moralistic and cash-strapped modern-day politically controlled agency say, I wonder?

Also, we mostly don’t have to worry about the aggressive interpretation of ‘what are you going to do about it?’ i.e. the nurse or social worker providing the service. The classic case is the patient in Dennis Potter’s ‘The Singing Detective’, who resists arousal by a young Joanne Whalley as his nurse smearing emollient cream on him; behind the curtain it is clear that he eventually ejaculates, but it is left ambiguous whether she actively helps this outcome; probably so. It would be rare for a social worker to be put in this position, perhaps less so for a nurse, but even so avoidance is professionally de rigeur. More to the point, most health and social care professionals are not prepared through their education to give, for example, simple advice about sexual techniques for people with impotence or practical physical problems with performance, or, to go further, moving into sexual therapy for such difficulties. And perhaps would worry about moralistic responses from relatives, colleagues and managers if they did so.

However, the ‘what are you going to do about it?’ issue does raise the question whether simply talking about your problem is enough.

The other reason for my having a sex day is the arrival of a dissertation from a course I am external examiner for called ‘Let’s talk about sex’; this is about young people in a children’s hospice. With young people there may be further questions about socially acceptable behaviour and morally acceptable guidance by professionals. Because sexual activity is such a private matter, the taboos on practitioners’ engagement with it are very strong. Yet it is an important area of exploration and need for all of us, but perhaps particularly for young people. I am reminded of a novel I read recently, which turned on a teenager with heart disease who was protected by his parents from engaging in activity dangerous to his health. It had not occurred to the parents that having sexual intercourse might be something that they should facilitate; most parents with teenagers look the other way and keep out of the way. Because he needed to pursue this interest secretly, he was led into areas of illegality which led to his death.

So if a young person is going to die soon, should we at least give the chance of sexual experience, which is so important to them, and indeed to all of us? Should we focus on facilitating relationships so that the experience should develop naturally? What if it doesn’t? Are we then to facilitate contact with a prostitute if that is what the young person desires? What about the reality that prostitution is usually an exploitation of the woman?

So we’re back to just talking about it – will ventilation of feelings be enough? Over to my readers.

You can download the NHS confederation paper about cuts in the NHS from 2011 here: http://www.nhsconfed.org/Publications/Documents/Dealing_with_the_downturn.pdf

Of course this is only the NHS managers upping the ante in the budget debates and shroud-waving in advance of having to negotiate with this and future governments , but it contains a lot of suggestions about how the severe reductions in NHS might be managed, so we can see the ideas that are floating around.

There is only one mention of end of life care specifically: the increased costs of new end-of-life drugs is a current cost pressure. The growing proportion of older people in the population is also a cost pressure.

Social care is also mentioned as an issue; because it has had less investment than the politically sexy NHS poor social care is likely to put extra pressure on the NHS. This just proves the point about the stupidity of holding back social care, but politicians never learn that they need to talk up the value of social care, rather than relegating it to an also-ran and moaning about social work.

One feature of the managerial suggestions is to include social care into NHS pathways (that is, fragment it even more and include it when it suits NHS managers).

It does suggest thinking about other providers (that is, possibly voluntary sector hospices) but there are a lot of provisos about maintaining an integrated service and cutting out duplication, which means in reality that there will be pressure to maintain hospital palliative care teams and non-specialist palliative care and stop funding external specialist provision.

There is also a suggestion that home care nursing has no evidence base and ought to be charged for (that is the managers want to make sure their budgets for hospitals are maintained at all costs). This is an active disincentive for carers to carry on caring because they will get no support. There will be families who have no capital (and therefore will not have to pay) who will say: Bung the old biddy in a care home.

A striking article in Therapy Today compares counsellors and prostitutes. Kevin Chandler argues that they both provide ‘intimate personal services’. Most people expect to give and receive both sexual stimulation and satisfaction and attentive, caring listening, empathic understanding and encouragement freely within a close personal relationship. A paid service providing such help raises problems of authenticity. Does the paid counsellor fake empathy for the same reason that a prostitute fakes orgasm? The therapeutic relationship is an artifice in that it does not arise naturally and is built up in place of something else, However, it is real for the purpose that it is constructed. Chandler describes them as ‘on temporary loan’ to enable people to offer and receive help. To allow them to work, people ‘suspend disbelief’ in the same way that they do when reading a novel. Clients accept that the practitioner is a caring and helpful person, provided she acts out her role sufficiently well. They regain their disbelief if she fails to perform adequately.

Chandler, K. (2009) Turning tricks. Therapy Today. 20(3): 14-17.