The view from here

Karl Womack is a disability activist and poet who lives in a care home. (544 words)

Karl about Karl

My name is Karl Jonathan Womack. I was born in 1966. I was born with acute paralysis, epilepsy and a learning disability. The day I was born I had a testicle removed because it was strangulated and 6 months later I had an abscess. I couldn’t walk until I was 4 years old.

I was in and out of GP surgeries. They told my parents I was lazy and retarded. Through my early childhood I had intense physiotherapy, throughout my life I’ve had psychiatry and psychology. I was bullied from the age of 8 – 40 by able bodied and disabled because I went to mainstream school despite my disabilities. I was transferred to a special school for disabled and was bullied by the disabled for looking able bodied. I have a file full of certificates. And use a pseudonym called Blaze Burnstar.

I’m 56 and from the age of 23 I lived in residential care. Continue reading

‘…items and belongings…’ – a hoarding case at the Court of Protection

Stephen Martineau summarizes a recent case at the Court of Protection involving hoarding behaviour: AC and GC (Capacity: Hoarding: Best Interests) [2022] EWCOP 39. With thanks to Neil Allen for alerting us to the judgment via this Tweet.

The NIHR Policy Research Unit in Health and Social Care Workforce, where Stephen is Research Fellow, recently completed a study of self-neglect and hoarding behaviour among older people and it has just commenced another study on the commissioning of decluttering services by local authorities (this study is recruiting participants). Both projects are funded by the NIHR School for Social Care Research.

We are holding an online seminar engaging legal and psychological perspectives on hoarding: Mon 28 Nov 2022, 10am-11.30am. (2,294 words)

Introduction

This case concerned AC, a 92-year-old woman. She had been sharing her home (which she owned) with her son, GC, since her husband’s death eleven years earlier. GC had given up his job and had become his mother’s main carer. In February 2022 she was taken to hospital by emergency services and in March was discharged from hospital to a care home as a result of a best interests decision. There had been concerns about the unsanitary conditions at her home and their potential impact on her health and welfare.

The question to be decided in summer 2022 was whether AC should now return home for a trial period, receiving a package of care there. It was her wish to return home, while the local authority thought she should remain at the care home. We learn from this judgment (August 2022) that both AC and her son were diagnosed by a clinical psychologist, Professor Salkovskis, as having a hoarding disorder (among other conditions), and also that both have their own social worker.

The judge, HHJ Clayton, had already been managing the case for two years: there had been earlier applications to the Court of Protection by the local authority (and the judgment alludes to yet earlier proceedings that had ended in 2018). In August 2020, the local authority had applied for AC to be moved to a respite placement while the poor conditions at her property were addressed. More recently, it had sought an order that her son leave the property for the same reason.

Much of the difficulty of the case arose because of concerns around GC’s mental health. If AC were to return home, it was proposed that he would be the ‘second carer’ (after the care agency). Continue reading

Liberty, social care detention and the law of institutions

Stephen Martineau, Research Fellow at the NIHR Policy Research Unit in Health and Social Care Workforce at King’s College London, reviews Deprivation of Liberty in the Shadows of the Institution by Lucy Series (University of Bristol). Page numbers in brackets refer to the book, which was published in March 2022 (and is available for free). (2,642 words)

Introduction

One of the more familiar stories from recent UK history about the lives of people with longstanding serious mental illness or intellectual or cognitive disabilities is their move from large-scale institutional accommodation to living arrangements beyond the walls of such places. The extent of this ostensible deinstitutionalization is illustrated by the decline in hospital beds for ‘mental illness’, ‘geriatric’ patients and people with intellectual/learning disabilities—from over 200,000 in 1955 to under 20,000 in 2020 (Series, 2022: p.53). Much of this shift was to do with the closing of survivals of the Victorian era (which started out being called asylums, subsequently renamed mental hospitals) that took place through the second half of the twentieth century.

As Lucy Series describes in her book, Deprivation of Liberty in the Shadows of the Institution, these newer smaller-scale living arrangements may take the form of ‘quasi-institutions’ (residential care and nursing homes) or ‘quasi-domestic’ arrangements (‘supported living’, ‘independent living’, sheltered housing), or indeed ordinary homes.

Series describes this development as a passage from a ‘carceral’ to a ‘post-carceral’ era (after Unsworth, 1991). But in making the physical move away from institutions, to what degree have some less tangible aspects of the old institutional life been carried over to those new living arrangements, as far as these individuals are concerned? To what extent, Series asks, are they still living in ‘the shadows of the institution’?

This question was brought sharply into focus in the UK Supreme Court case of Cheshire West, the litigation that forms the dramatic fulcrum of this book. The court’s approach meant that its definition of deprivation of liberty applied to a much wider array of living arrangements than had hitherto been the case, extending to private homes, where family members were the carers (or custodians?) of the person concerned. It is the socio-legal ramifications of this move (which Series views as transgressive) that are the main concern of the book. To put it briefly and in human-rights terms, in its approach to concerns about liberty in the area of social care detention—under article 5 of the European Convention on Human Rights—the court seemed to set up a clash with a set of questions belonging more under article 8 (respect for private and family life), to do with the distinction between institutions and homes.

This review is split into five short sections: 1. Social care detention. 2. The acid test. 3. Liberty. 4. Home. 5. Out of the shadows? Continue reading

Weeding out a few bad apples? What do we believe registration of residential childcare workers is for?

Martin Elliott

Dr Martin Elliott

Dr Martin Elliott of the Children’s Social Care Research and Development Centre (CASCADE) at Cardiff University introduces a new project funded by the National Institute for Health and Care Research. The study, which runs 2022-24, also involves the Centre for Trials Research at Cardiff and, from HSCWRU, Jill Manthorpe, Mary Baginsky and Carl Purcell. (753 words)

Residential care for children ‘looked after’ by the state is often characterised as the placement of ‘last resort’, despite it being a positive and appropriate placement choice for some young people.  Across the UK, 16% of children looked after in England are living in residential settings, 10% in Scotland and 7% in Wales (Competition and Markets Authority, 2022). Historically, the children’s residential care workforce is undervalued and often seen as transient and low skilled (Department for Education, 2021), despite working with children who have often experienced significant trauma and challenges.

Residential children’s homes and those working in them have been the focus of much negative commentary for many years. High profile examples have ranged from the historic abuse of children in residential care in North Wales and elsewhere to more recent criticism of the impact of the marketisation of care and the profits made by private providers, and the inadequacies of children’s homes in Rotherham and Rochdale and their failure to protect children from sexual abuse. Continue reading

Decolonising research methods and knowledge: implications for stepping into a post-doctoral role

Adele van Wyk is a Research Associate at the NIHR Policy Research Unit in Health and Social Care Workforce at King’s. (1513 words)

The Anti-racism Steering Group in the School of Global Affairs at King’s College London (@Kings_SGA) recently held a three-day ‘Decolonising Research Methods in Global Health and Social Medicine’ course (7-9 June 2022), followed by a symposium ‘Decolonising Knowledge Production’ (10 June). Both events were funded by the Faculty of Social Science and Public Policy Education Fund. Their overarching stated purpose was to bring diverse decolonising efforts and ongoing initiatives into the conversation between social science students and early career researchers. They also provided an opportunity to explore the limits of existing research methods in varying geographical locations which as I start my post-doctoral journey in the UK is highly relevant to me.

Discussions covered a wide range of topics, but frequently gravitated to matters around ethics. In this blog, I reflect on six points that stood out for me in each case ending with suggestions as to how researcher approaches may be improved.

#1. If it is not published, it is not real knowledge

Several speakers shared the opinion that knowledge that was not a) published in peer reviewed journals or b) produced in a systematic manner such as through research protocols, were not being accepted as valuable. As Nyaradzayi Gumbonzvanda (@vanyaradzayi) explained:

‘African knowledge is orally transmitted from one generation to the next, but it is only considered knowledge if it is documented.’

This suggests a significant disconnect between existing indigenous knowledge and the evidence base for it further solidifies the view of indigenous knowledge as inferior or unscientific.

  • Consider grey literature or community reports to get a better understanding of what is going on in a particular community – it might get you closer to the information than only published literature.

Continue reading

Workshop on Religion, Sexual Orientation & Gender Identity in Adult Care at University of York

olivia luijnenburgOlivia Luijnenburg is Research Associate at the NIHR Policy Research Unit in Health and Social Care Workforce. (374 words)

On the 7 July, Sue Westwood organised a workshop on Religion, Sexual Orientation & Gender Identity in Adult Care at the University of York. Over twenty delegates were there from lesbian, gay, bisexual, trans, and queer (LGBTQ) charities or representative groups, care providers, chaplaincies or other religious organisations involved in care, and different universities. The workshop was a space to discuss opportunities and challenges around religion, people identifying as LGBTQ+, and adult care. The morning consisted of ice breakers, conversations on what religion means to the delegates, and a first look at the briefing document that was sent to all. This created a better understanding of delegates’ experiences, ideas, and potential worries. It also created a safe space for everyone to share their thoughts about sensitive topics such as rejection, sexuality, conflicting ideologies, and prejudice. Continue reading

On best interests: values and participation in mental capacity law

Stephen Martineau is Research Fellow at the NIHR Policy Research Unit in Health and Social Care Workforce, King’s College London. (1,115 words)

At the British Academy earlier this month, Dr Camillia Kong (Birkbeck College) and colleagues presented their end-of-project findings on the place of values and participation in mental capacity law. As well as contributions from the research team, the day featured a group of international experts, three Speak Out Leaders from VoiceAbility, and it culminated in a panel made up of four senior former judges: Baroness Hale of Richmond, Sir Mark Hedley, Senior Judge Denzil Lush, and District Judge Margaret Glentworth.

Participation and values

The event coincided with the launch of the second of two films produced by the project. The first, from 2021, had addressed the importance of good communication with the person at the centre of Court of Protection proceedings and discussed some of the ways of enabling their involvement (see particularly the ‘role-play’ at about 22 mins in). Three contributors in the film, Speak Out Leaders from VoiceAbility, took part in a panel at the event. The new film, Making Values Matter in the Court of Protection, includes a remarkable ‘demonstration’ of the exploration of a person’s values by a barrister engaging with the person and their father (from about 9 mins in). By modelling one way that requirements in the best interests checklist in s.4 Mental Capacity Act 2005 can be met, it provides a corrective to any notion that a finding of incapacity in respect of a decision amounts to an ‘off-switch’ for a person’s rights and freedoms.* Continue reading

New Roles at the Health, Housing and Social Care Interface – The Homeless Health Team Leader

The DHSC’s Out-of-Hospital Care Models Programme provided £16m of funding to 17 test sites across England to improve discharge arrangements for people experiencing homelessness. The programme affords opportunities to develop new services and workforce roles that aim to integrate health, housing and social care at key transition points. In this blog, Shevon Simon describes her work as a ‘Homeless Health Team Leader’ at the Princess Royal University Hospital in South East London. 

What is your job role?

In my new role as Homeless Health Team Leader, I am assigned to PRUH (Princess Royal University Hospital) in South East London to support the hospital with facilitating the discharge of homeless patients – primarily the discharge of single homeless people with complex needs. I am also responsible for developing discharge pathways and upskilling Discharge Teams to understand key homelessness legislation.

Can you tell us about why your role is needed?

My background is in local authority homelessness assessments and 14 years ago people rarely presented as homeless with more than one medical condition.

Today, many people have more than one condition – so they are multi-symptomatic and this in itself creates complexities around health management and means that they are sicker than in earlier times. In addition, chronic homelessness usually features at least three multiple long-term conditions – meaning people are more likely to suffer mental health problems, physical health problems and substance misuse and are not accessing the health services they need. COVID–19 and multiple lockdowns have not helped with healthcare accessibility, with many services not being as accessible as they were prior to the first lockdown in March 2020. Two years on and most local authority housing departments are still closed for face-to-face/office appointments, requiring patients to complete lengthy online forms or telephone assessments. As you can imagine, this is a huge barrier for someone who is homeless. Continue reading

Martin Stevens

Our colleague Martin Stevens, who has died aged 57, was Senior Research Fellow here at the NIHR Policy Research Unit in Health and Social Care Workforce. Martin joined our Unit’s predecessor at King’s, the Social Care Workforce Research Unit in 2004, and for 18 years he was a central figure within the team.

Martin’s first research post was at Hampshire Social Services Department, where he undertook work on community care, child protection and learning disability services, and completed his PhD (University of Portsmouth) on family group conferences. His BA had been in philosophy at the University of Southampton, following which he had worked for five years in a residential service for people with learning disabilities. He also gained an MSc in social research.

At King’s, Martin developed his research expertise in adult safeguarding, personalisation and learning disability services – and is widely published in these fields. His interest in learning disabilities services and their workforces led to his convening our popular seminar series on the topic – this has been running since 2014 and will continue, with three more webinars already planned for 2022.

During his research career he chaired the UK Social Services Research Group and led on social care for the Local Area Research and Intelligence Association. And since 2019 he had been advising other researchers, both new and old to research, in the setting up of studies at the NIHR Research Design Service.

He was, until recently, chair of the Health Research Authority Social Care Research Ethics Committee. As colleagues we benefited hugely from his expertise in this area. Whether seeking initial ethical approval for projects or dealing with problems as studies unfolded, Martin was always humane and empathic. One felt his interest in philosophy at these times. He was also a union member and encouraged others to value the union, as part of a wider commitment to social justice.

Latterly, Martin’s research had a focus on mental health, leading two projects on the professionals who work with the Mental Health Act, both commissioned by the Department of Health and Social Care. He remained the chair of the Good Mental Health Co-operative Committee up until his death.

We will all miss Martin greatly as a funny, talented and generous colleague.

Martin Stevens, 18 April 1964 – 21 March 2022

If you wish to share your memories of Martin, please add them below (comments are moderated, so will not publish immediately).

And, on Twitter, see the replies to tweets by: this Research Unit | NIHR School for Social Care Research | Prof Jill Manthorpe. See also: Other Lives (by John Woolham in The Guardian, 21 April 2022).

Exploring the effects of the rise of living costs on small to medium sized care home providers and care professionals

Head and shoulders of a person

Dr Caroline Emmer De Albuquerque Green, Post-Doctoral Fellow at the ARC South London, introduces a new study. Caroline works within the NIHR Applied Research Collaboration South London: Social Care Theme at HSCWRU.

 

Our work is to care for the most vulnerable in society and after the pandemic… [the costs of living crisis] is more reason why providers will be closing homes” (A small care home provider)

The United Kingdom (UK) is currently experiencing the steepest rise of inflation in the past 30 years. Consumer prices in February 2022 were 6.2% higher compared to the previous year. The Bank of England estimates that inflation may rise to 9% in 2022 (Francis-Devine et al. 2022 Rising cost of living in the UK – House of Commons Library (parliament.uk)). For people living in the UK, this means increased costs of living, including fuel, energy and food prices. This is also the case for care homes and people working in them, which next to the rise of living costs are still facing Covid-19 related restrictions, staff shortages as well as further rises in operational costs and taxes. Continue reading