Safeguarding Diogenes

James Fuller is a Peer Researcher, Expert by Experience and a Support Worker at a Day Centre for people who are homeless in London. (1,200 words)

Brighton and Hove Safeguarding Adults Board recently published the key messages arising from a review. A Safeguarding Adults Review is held when an adult in the local authority areas dies as a result of abuse or neglect. In this case, the adult was sleeping rough and had been identified as ‘difficult to engage’. Chris Scanlon and John Adlam have written extensively about Diogenes, homelessness and what to do about people whose refusal to be included remains a problem for themselves and society as a whole. This review brought into sharp focus some of these same issues. Namely how can we safeguard Diogenes? According to the essayist Plutarch, the philosopher Diogenes the Cynic (412-323BC) lived in a barrel in Corinth and spent his time pouring vitriol on his fellow beings, who he roundly despised. One day, Alexander the Great invited Diogenes to a gathering, but the drum-dweller declined. Instead of having Diogenes executed, the usual outcome for disrespecting world conquerors, Alexander went down to see him.  Having greeted Diogenes, Alexander asked him if he wanted anything. Diogenes replied: “Yes, stand a little out of my sunshine” (Plutarch, Alexander, 14 Cf.). Continue reading

Let’s Talk – Care Homes and Delayed Discharge

Bev EvansNorman CrumpBev Evans and Norman Crump, both of Lancaster University Management School, report from a recent meeting where participants discussed the transition from hospital to care home. (913 words)

According to the National Audit Office (2016), between 2013 and 2015, official delayed transfers of care rose 31 per cent and in 2015 accounted for 1.15 million bed days – 85 per cent of patients occupying these beds were aged over 65. Since 2010, waits for beds in nursing homes increased by 63 per cent. Across Morecambe Bay University Hospitals NHS Foundation Trust (MBUHT) waiting for a care home place can be a significant cause of delay.

In early October, Cumbria Registered Social Care Managers’ Network, Kendal Integrated Care Community (ICC) and MBUHT convened a special ‘Let’s Talk’ discussion group which brought together local care home managers, social workers, hospital discharge coordinators, ward staff and nurse practitioners from the community. The aim of the meeting was to explore how the transition from hospital to a care home could be improved. ‘Let’s Talk’ is a specially facilitated session delivered by King’s College London, Lancaster University, Dignity in Dementia and the South Lakes Registered Social Care Managers Network. Meetings are designed to enable participants to see issues from each other’s perspectives and to afford time to critically reflect on a particular ‘wicked issue’. Continue reading

Social work and the ill body

Liz Price Liz WalkerLiz Price (left) and Liz Walker both work at the University of Hull. (401 words)

Social work is remarkably silent when it comes to the physical body. By definition, the profession is similarly unnoticed within the experience, and practice, of illness. This book addresses these silences through an exploration of chronic (autoimmune) illnesses engaging in wider debates around vulnerability, resistance and the lived experience of ongoing ill-health.

We demonstrate the role that social work has to play in actively engaging the (ill) physical body, rather than working around and through it. We focus on autoimmune conditions such as lupus, multiple sclerosis, rheumatoid arthritis and scleroderma. Conditions like these allow for an exploration of the everyday lived experience of illnesses which can exacerbate social and economic vulnerability and may precipitate personal and social crises, requiring a variety of interventions and support. Continue reading

Just do it!

John Burton John Burton has worked in social care since 1965 as a practitioner at all levels. His book, Leading Good Care, is just out from Jessica Kingsley Publishers. (1,342 words)

In Leading Good Care, I set out and recommend a positive and hopeful vision of social care. My subtitle—the task, heart and art of managing social care—is both realistic and idealistic. The task requires serious, disciplined, hands-on, and hard work. The heart signifies that this work is emotional and personal, and that care is a human relationship. And the art of managing care engages your skills, your imagination, your culture and creativity. Continue reading

The challenges of mental health for social science and policy

Guntars Ermansons, student in the Department of Social Science, Health and Medicine, introduces a report on a workshop held earlier this summer. See the full report of the workshop. (309 words)

On 19 June 2014, a workshop on “The Challenges of Mental Health for Social Science and Policy” was held at King’s College London, Waterloo Campus. Supported by the King’s Interdisciplinary Social Science Doctoral Training Centre’s Science & Society initiative and organized by the Department of Social Science, Health and Medicine, in collaboration with the Institute of Psychiatry and Social Care Workforce Research Unit, the workshop hosted a number of distinguished speakers and experts on mental health and involved postgraduate and early career researchers. Continue reading

A Mixed-up World

Suzanne has been involved in the work of the Social Care Workforce Research Unit at King’s College London for many years, as a researcher and now as an ‘expert by experience’. She reflects on the integration of the medical versus social models of disability and the sense of dis(ease) which can follow the realisation that this has yet to materialise as a coherent practice.

Over two years ago I joined the ranks of those diagnosed with bipolar mixed affective disorder. I didn’t understand what it meant then in real terms and I am not sure I am much the wiser now. I had assumed it meant what the older term, manic-depressive, conveys quite cogently. I would have highs (which sounded like they might well be fun) and lows (which would not be!). I didn’t realise the significance of the word ‘mixed.’ I have highs and lows all at once and they can cycle very rapidly: sometimes over a few days, sometimes every few hours and—if it’s really bad—fluxing every few minutes. The character of the ups and downs are not what I expected either. The highs are not fun, just periods of great mental agitation when I obsess and worry about things. My head gets busier and busier. The lows are what you might expect—only worse. I feel depressed, sometimes become very tearful and often get overwhelmed by angst. In short: no peace at all.

There is a certain irony here. I had studied mental disorder and Bi-Polar prior to my illness, and worked with many people who had similar mental health problems. I realise now that I had little insight into their ‘lived experience’. I now know too well how hard it is to capture in words and images what such realities feel like. Normal language isn’t designed to accommodate these shady extremes of intensity.

What’s more nothing prepared me for the differences between the medical and social models as regards the ‘lived experience’. I expected that my treatment would be an integrated programme of medication and therapy, but that is not what the NHS offers. I have a committed psychiatrist who is determined to find me the right mix of medication, but it is an inexact science and takes time. I am very fortunate to receive counselling from Mind. The counsellor’s person-centred approach and my Community Health Team care co-ordinator’s style of reflective therapy gives me hope for the future.

So, exactly what have I experienced? I have lived the past two years on a cocktail of drugs some of which are potentially toxic and none of which has solved the problem or enabled me to regain equilibrium in my home or working life. I moved from being a sociable, glass half-full person to one for whom life is half-empty and being told by the doctors that my agitation was the high. I long to have the high that gives great elation—but that doesn’t come my way. Instead I have felt in limbo, argumentative with my family, not living life but existing in a swamp of sorrow or anxiety most of the time.

The medication path is fraught with difficulties. Are my symptoms an expression of the illness or side effects of the drugs? It is not easy to tell. My current medication is not stable at present as I am going through another titration. My psychiatrist sees a lot of me but I have a nagging instinct that if an integrated approach was truly followed I would be able to come off the drugs. Medication alone cannot be the solution or the answer to the symptoms. It provides a platform that should stabilise effects—but a lot else is needed. Is my lived experience the same as others out there?

 

The value of advocacy support for older people affected by cancer

In a guest post Kath Parson, Chief Executive of the Older People’s Advocacy Alliance (OPAAL), writes about a project supporting older people affected by cancer.

‘Cancer, Older People and Advocacy’ is about supporting older people affected by cancer to find their voice and say what it is they want. Evidence from Macmillan Cancer Support, our project partner, and the Department of Health indicates ingrained age discrimination in cancer services: ‘Older people with cancer receive less intensive treatment than younger people. …… there is increasing evidence that under-treatment of older people may occur

image001We’re doing our best to change that by recruiting, training and supporting older people who have themselves been affected by cancer to become peer advocates. We’re working on the basis that those who’ve lived through the experience of cancer, either because they or someone close to them have had a cancer diagnosis, are best placed to empathise and support others in the same situation.

I’ve also been affected by cancer and lost relatives and very close friends – so I can relate to a lot of the issues that people have and some of the unfairness that happens… I’m not afraid to challenge. That’s the kind of thing people haven’t got when they have an illness. All those strengths are taken out because of the day to day – the appointments, the pain, and the personal issues they have to deal with. Advocate

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Where we’ve struggled so far has been in helping health professionals understand that there might be a problem in cancer services for some older people. Despite the evidence there seems to be a reluctance to refer to independent advocacy. Maybe it’s because they don’t like being questioned or maybe they simply don’t see the need. Whatever the reason, it is a problem. One advocate explains:

That was a difficult session, particularly because there were three consultants in the room. The consultants were quite apprehensive really, I would say, about me being there… One of them actually did ask what my role was, which I explained. I emphasised that my role was not to make decisions for my client. It was to help him to understand the situation, what was on offer, to help him to make some informed choices, and decisions about his treatment and that was OK after that.

To find out more about Cancer, Older People and Advocacy, check out our blog.

Is the care worker perspective still overlooked in disability research?

Professor Karen Christensen

Professor Karen Christensen

A long time ago – at least as it is defined in the academic world – in the 1990s, the British professor of social policy Clare Ungerson published an article: “Give them the money: Is cash a route to empowerment?” In this article she forecast many of the challenges arising from welfare policies intended to empower disabled people in their everyday lives by means of cash payments. The idea was that instead of letting disabled people receive traditional services such as home help they should receive money to employ their own care workers and this should be “a route to empowerment”. The important contribution that Ungerson made with this early article about these cash payments was to point to the care worker’s perspective within a welfare scheme that aimed at providing services on the user’s terms. If she was critical of disability writers in this and later articles, and she was, so she was subject to criticism herself by disability writers such as Jenny Morris and others.

Since the late 1990s cash-for-care schemes have developed in different ways in many European countries and there is a growing literature investigating this form of welfare. However, this basic tension underpinning the field remains and also, reflecting this tension, the care worker perspective remains the perspective that is under-researched within the disability research field. Although currently ‘multidimensional aspects’ and ‘inter-disciplinary studies’ are keywords for new research projects, many networks and associated research areas are specialized or restricted within limits and this may take some of the research on ‘care’ – actually an unpopular concept within the independent living ideology, which has pushed forward welfare schemes that could empower disabled people – out of disability research. Interestingly, this does not seem to be the case with research on long-term care for older people, where studies about the care of older people are a central part of the research area.

I am currently working on a study about welfare, migration and care work, which is empirically based on life histories of migrant care workers in Norway and the UK, and these questions around disability research arise in the project for two reasons. One is empirical and concerns the life stories: in all of them care work, and particularly personal assistance work for disabled people, plays a role, though the role varies in relation to the different life projects of the migrants. The second reason is that migration is no longer an issue only for countries like the UK with its colonial past and long traditions of bringing migrant workers into the workforce; it has also become an issue in Nordic countries. So here, for example, the health and care sector is one of the main employment areas attracting migrants, in particular women. In the UK, migrants have played a role in the cash-for-care scheme since its start, while this is a more recent phenomenon in Norway. The difference is due to the different timing of the migration waves in the two countries; in the UK starting after the Second World War, while in Norway significant numbers of migrants first started coming after the EU extension in 2004, opening the borders to citizens from several East European countries. In other words: migration is now an issue for the cash-for-care system and for the discussion of disabled people’s empowerment in both countries.

Due to the ageing population in both countries there is a growing need for workers in the health and care sector. However, in the UK, and Norway (as well as the other Nordic countries), this sector is experiencing a recruitment problem, in particular regarding direct care jobs. This type of work is stigmatized as female low status work and, particularly in the UK, is associated with very low wages. Therefore the work is often seen as unattractive to indigenous workers and the shortages caused by this contribute to the explanation as to why the work appeals to migrant workers. Among the multiple motivations for migrants taking up this work are, for example, the lack of recognition of their qualifications and the necessity therefore to take the kind of jobs that are available and the flexibility of these kinds of jobs (part time, no fixed hours, live-in options etc.) which may appeal to their specific life situation. Overall, the structural point of departure, however, is of a reserve workforce situation which raises issues regarding, for example, the risks of developing working conditions which are below the general standards in these countries. Another risk, particularly in the UK, concerns the widespread use of private agencies supporting disabled people in their employer role, but often for a price that reduces the care workers’ wages significantly. Both disabled people and care workers are vulnerable groups under such circumstances.

What I am trying to say is that empowerment for disabled people is not only a disability project, but also still – and maybe even more so now, due to the new groups of workers entering the labour market – a care work issue. Care work is increasingly globalized: labour markets are no longer restricted to localities or countries. New worldwide job seeker web sites have been established and the rapid development of technology makes it possible to keep in contact with families in the home country. Including these changes in the discussion requires paying attention to the ways migrant care workers themselves handle their work situation as part of their lives. The life history perspective affords us a way of understanding this as an ongoing process of balancing individual preferences with the structural conditions set by immigration policies and the way in which the welfare scheme is implemented, as well as enabling us to examine concrete interactions with disabled people about the assistance they need and want to control in their everyday lives. Without knowledge of the care worker side, future discussions on how to empower disabled people will lack insight. These future discussions will benefit from opening the borders between disability and care work.

A version of this piece, together with the photograph of Prof Christensen, was originally posted on the blog of Nordic Network on Disability Research, 12 December 2012.

Karen Christensen, Professor of Sociology at the University of Bergen, is Visiting Research Fellow at the Social Care Workforce Research Unit at King’s College London. Her co-authored report on the marketization of older people’s services in Scandinavia is forthcoming. She took part in the Invisible Communities conference here at King’s. For more of Professor Christensen’s work on the Norwegian context see the Research On Workforce Mobility network, of which she is a member.

Expectations and reality: social care support in old age

Jo Moriarty

by Jo Moriarty

Two weeks ago I went to Greenwich Pensioners Forum. Last week I was at the Hackney Older People’s Reference Group. In the last month, Unit Director Jill Manthorpe and I must have spoken to almost 500 older Londoners at various meetings. Without exception, the discussions have been lively and well-informed but running through them has been uncertainty about the future of social care support for older people.

These experiences made me question a widely held assumption about how baby boomers, those born between 1948 and 1964, will experience old age. I have lost count of the times that I have heard commentators, policymakers, and researchers tell me that services for older people will improve because baby boomers have higher expectations and will demand good quality support. So that’s why reports such as ‘Close to Home’, undertaken by the Equality and Human Rights Commission, express concerns about the quality of care services and Age UK organises a ‘care in crisis’ petition. It’s simply a question of older people upping their expectations!

Some years ago I was sitting next to a member of our Service User and Carer Advisory Group listening to yet another lecture looking forward to this new dawn. She has been a campaigner and activist throughout almost all her life. I asked her what she thought of the views being expressed. ‘Oh, I don’t think the baby boomers will find it so easy’, she replied.  ‘They don’t know how to act collectively’. Perhaps she is right. After all, individualism has been identified as a core value of the baby boomers.

Recently, in a discussion on the radio programme You and Yours about the proposal to allow 16 and 17 year olds in Scotland to vote in the referendum on independence, Ben Page of Ipsos MORI said that if their turnout was anything like that of 18-24 year olds, their votes would be unlikely to influence the result. Perhaps it’s significant, he added, that older people are more likely to vote and benefits for older people such as the winter fuel allowance have remained untouched. This discrepancy between older and younger voters is especially high in the United Kingdom where in the last general election, 84 per cent of people aged 55 and over voted compared with 61 per cent overall.

It’s true that many older people don’t feel that they have enough information about what support is available and how to access it and the increasing reliance on websites alone as an information source means there is a risk that the digital divide will widen. At the moment, less than a third of those aged 75 and over have ever used the internet, an important statistic in the light of proposals for online information and advice in the Care and Support White paper.

However, we also should not forget that public knowledge of how social care is funded remains very low. The literature review carried out as part of the Dilnot Commission on the Funding of Care and Support  quotes one survey reporting that a third of people still think that local councils provide free home care! As changes take place as a result of the Care and Support White Paper and as local councils tighten their eligibility criteria, I wonder how many baby boomers envisage what their future care needs might be and how they will be able to fund them.

Jo Moriarty is a Research Fellow at the Social Care Workforce Research Unit at King’s College London and tweets as @Aspirantdiva. Jo is speaking about her research project, Social care practice with carers: an investigation of practice models at the School for Social Care Research on 7 November.