Piloting the Sababu Intervention in the wake of Ebola

Meredith NewlinMeredith Newlin, Research Fellow at the Social Care Workforce Research Unit in the Policy Institute at King’s, reports from Sierra Leone. Her post incorporates photographs of the Sababu Training Programme in action last month. (1,386 words)

The Ebola outbreak, which reached Sierra Leone in May 2014, quickly became a global health crisis and caused significant psychosocial distress and a disintegration of communities across West Africa. The case numbers are now dropping and Sierra Leoneans talk about the ‘aftermath’ and a shift towards a recovery phase. However, amid a resource-limited system there is still an urgent call to address the psychosocial needs of individuals and families by enhancing the skills and capacity of the existing workforce. 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?

 

Is a Personal Budget right for you?

Sarah Hamilton, Research Manager at The McPin Foundation, introduces new guides available for practitioners, service users and families getting to grips with Personal Budgets and Direct Payments for people with severe mental illness.

The transformation of social care services and the shift towards personalisation over the last few years has presented many, well discussed challenges for local authorities, social care professionals and service users and their families. In mental health, however, there are specific challenges that need to be addressed. Take up of personal budgets in mental health lags behind other disability groups. In 2012-13, 8.6% of people with mental health problems received self-directed support compared to 27.3% of people with a physical disability and 28.4% of people with a learning disability (HSCIC, 2013).

Is a Personal Budget right for youOur three year research project explored the challenges of introducing personal budgets for severe mental illness in four local authorities. We identified barriers to implementing personalisation that meant that some areas were still struggling to offer personal budgets at all. Chief among these is the difficulty posed by the integration of health and social care, such that personal budgets became the responsibility of both – or sometimes seemingly of neither (Larsen et al, 2013).

Where personal budgets are available, however, other difficulties arise in practice. In the PEOPLE Study we interviewed over 50 people who received, or were applying for, a personal budget to support their mental health, as well as care co-ordinators and families. We found, even among these service users, that there was little awareness of personal budgets, what they are for and how they can be used. The shifting policies and budget cuts of local authorities made it hard for practitioners and service users to get to grips with what was possible. Among many practitioners, patience with these problems had already run out, and we heard how many no longer saw any value in starting a process that was liable to disappoint.

Despite the challenges, however, we also saw how personal budgets and direct payments, when used creatively, could transform lives and give people the determination and the control to manage their lives in the way they wanted. The learning from this research showed how the experience of getting and using personal budgets could be improved, and how practitioners, service users and families can, between them, secure the type of support that makes the biggest difference.

Reaching goals and moving onFrom this research we have produced a series of guides for people with a mental illness, their families, and mental health staff. The guides tell it as it was for the people who shared their stories with us. They point out challenges and offer solutions, and provide examples of what can change for people when it works. They include recorded stories using people’s own words to describe what getting a personal budget was like for them. The guides are freely available to download, use and distribute from Rethink Mental Illness.

 

The research project which led to the guides was delivered in a partnership between The McPin Foundation and Rethink Mental Illness, with support from Jill Manthorpe of the Social Care Workforce Research Unit (SCWRU), King’s College London, and Jerry Tew of the University of Birmingham. It was funded by the Big Lottery.

Sarah Hamilton is based at The McPin Foundation in London. You can contact her on sarahhamilton@mcpin.org, or visit the Foundation’s website to see more of its work.

@McPinFoundation | @Rethink_ | @scwru

References

Adult Social Care Statistics team, Health & Social Care Information Centre, Measures from the Adult Social Care Outcomes Framework, England 2012-13, Provisional Release, 10 July, 2013.

Larsen, J., Ainsworth, E., Harrop, C., Patterson, S., Hamilton, S., Szymczynska, P. Tew, J., Manthorpe, J. & Pinfold, V. (2013). Implementing personalisation for people with mental health problems: A comparative case study of four local authorities in England. Journal of Mental Health, 22(2): 174-182.

Evidence Based Interventions in Dementia: What have we found?

Caroline Norrie reports on the presentation of findings yesterday from the major research programme known as EVIDEM, Evidence Based Interventions in Dementia.

Yesterday was a great day for those of us at the Social Care Workforce Research Unit, King’s College London who worked, together with colleagues from other universities, on the EVIDEM programme on changing practice in dementia care in the community. We joined an invited audience gathered at Friends House, Euston Road, London, to hear a summary of the EVIDEM programme research findings.

Presentations of the findings of this five year research programme were delivered to representatives from the Department of Health, the charity sector, health and social care professions, service user groups and research colleagues. This was the culmination of a huge amount of work and a fantastic opportunity to celebrate the project outputs.

EVIDEM was funded from a National Institute for Health Research (NIHR) grant of £2 million which ran from 2008-2012 with the aim of developing and testing interventions for people with dementia living in the community, including care homes.

Research teams were involved from King’s College London, UCL, LSE, St George’s & Kingston, University of London, University of Hertfordshire and Central and North West London NHS Foundation Trust.

The opening address was given by Professor Alistair Burns, the National Clinical Director for Dementia at NHS England, who outlined key policy goals in dementia such as: timely diagnosis and support for people with dementia; reduction in hospital admissions of people with dementia; improving services in care homes; reduction in the prescribing of anti-psychotic drugs; and care and support for carers. Professor Burns noted, “We are on the threshold of getting the data to change practice in dementia care.” 

Chairs Peter Ashley and Dr. James Warner, then introduced the five speakers and Professor Steve Iliffe from UCL gave an overview of the EVIDEM Programme. This consisted of: EVIDEM ED (education), EVIDEM E (exercise) EVIDEM C (continence) and EVIDEM MCA (Mental Capacity Act), EVIDEM EoL (end of life).

Professor Steve Iliffe opened the presentations with a discussion of EVIDEM ED. The aim of this intervention study was to test a customized educational intervention developed for general practice, promoting earlier diagnosis with management guidelines. Five NHS providers and two overseas organisations have now rolled out this training.This randomized trial, however, showed that the intervention did not appear to change the practice of GPs, which led to discussion of what other levers could be used to encourage GPs to follow best practice guidelines for dementia care.

Dr. James Warner from Central and North West London NHS Foundation Trust introduced EVIDEM E. He discussed results from this randomized trial of exercise as therapy for behavioral and psychological symptoms of dementia (BPSD). Dr Warner described how this was a simple intervention – a person with BPSD and a their carer went on a walk five times a week for 12 weeks. This study found that regular simple exercise does not improve symptoms of BPSD, but it does decrease caregiver burden.

Professor Vari Drennan from Kingston and St. George’s, University of London, presented EVIDEM C. Work on dementia and incontinence is of huge significance because this is a key factor in why people with dementia move into care homes. This group of studies included 4 elements: i) scoping the evidence on prevalence, effective interventions, local clinical guidance on provision of NHS funded incontinent products; and a nested study of the THIN database reporting incidents rates for the first time, for urinary and faecal incontinence in community dwelling people with dementia; ii) a longitudinal study exploring the experiences and strategies of people with dementia, their family carers and health and social care professionals; iii) a feasibility study of the investigation of the effectiveness and acceptability of different designs of continence pads; and, iv) the design of a continence assessment tool tailored to the needs of people with dementia. Findings from Professor Drennan’s research team showed that the incidence of incontinence in community dwelling people with dementia is at least double that in a matched population. The use of indwelling urinary catheters, a management strategy discouraged by international and national clinical guidelines was in fact found to be double the rate in people with dementia compared to a matched population. The presence of faecal incontinence was found to significantly increase expenditure by almost two-thirds from both a health and social care perspective. “This study suggests that there are strategies and responses that primary care professionals and others can employ to encourage greater openness, thereby lessening the taboo of incontinence within the stigma of dementia.” added Prof Drennan.

Professor Jill Manthorpe, Director of the Social Care Workforce Research Unit, King’s College London outlined EVIDEM MCA. This project involved developing practice in and building evidence on the use of the Mental Capacity Act 2005 (MCA). Professor Manthorpe’s research showed that dementia care services and practitioners have traditionally not conceptualised their practice as being framed by legal rules. The MCA has proved a major challenge to this and dementia care. Key points from this presentation were that practitioners in dementia care need to be legally literate and aware of the new clauses making neglect and abuse criminal offences. There are messages also for thinking about how future changes to the legal framework of social care contained within the Care and Support Bill may be sustained. (Jill Manthorpe and Kritika Samsi’s presentation from the event.)

Professor Claire Goodman, from University of Hertfordshire presented on EVIDEM-EoL: Quality of Care at the End of Life. The project team has found the trajectories of end of life in people with dementia (PWD) are often unclear to care home staff, family and healthcare practitioners. They used Appreciative Inquiry (AI) as a way to enhance professional relationships around the care home. It fostered rapid and sustained engagement between care home staff and GPs, did not increase resource use, reduced use of emergency services and appeared to improve the management of unexpected events and unplanned hospital admissions.

Finally, the afternoon was brought to a close by Professor Steve Iliffe who gave a short presentation on how EVIDEM has worked with the government funded Dementia and Neurodegenerative Diseases Research Network (DeNDRoN) to help build systems to give people with dementia who are interested  in research more choice and opportunity to get involved.

Overall, from the point of view of someone who worked as a researcher on one of the studies, this was a fantastic day, as it was highly satisfying to view the whole, complex programme of studies coming together and the wide range of evidence and research outputs produced.

Caroline Norrie is Research Fellow at the Social Care Workforce Research Unit, King’s College London. She is working on a NIHR School for Social Care Research funded project comparing the costs and benefits of different models of adult safeguarding.

Mental health social work in challenging times: What should change?

Joan Rapaport

by Joan Rapaport

How does it feel to be confused or abused and needing or pleading for services? Given the damaging effects of trauma, what helps and hinders recovery? How do services respond, and do practitioners ask the right questions?

With reference to recent research, these and other questions were robustly addressed by experts in dementia care, domestic violence, substance misuse and women in secure settings at Making Research Count’s November 2012 event.

At a time when economic pressures put greater strain on people’s mental health, yet also threaten the existence of some services, what are the priorities when it comes to social work practice?

The speakers were: Professor Jill Manthorpe (Director, Social Care Workforce Research Unit) on older adults; Dr Roxane Agnew-Davies (Director of Domestic Violence Training Ltd) on domestic violence; Dr Sarah Galvani (Assistant Director, Tilda Goldberg Centre for Social Work and Social Care) on substance misuse; Kelly Alexander (Senior Lecturer, University of Bedfordshire) on women in secure settings; and, Mike Fisher (Professor at the University of Bedfordshire).

Older people and mental health: Professor Jill Manthorpe

No-one can fail to notice the current interest in dementia, but social work practice with older people needs to be equally aware of the distress and poor outcomes of other mental health problems in later life. Jill Manthorpe described such problems as not always arising in old age but often being of much longer duration. The value of social work’s attention to social circumstances, she argued, was that this could uncover long-standing concerns or, alternatively, simple acceptance among relatives or friends of the older person – the perception may have been, for example, that they had often been a ‘bit of a loner’ or ‘had always had trouble with their nerves’.

Common problems encountered were depression and anxiety, with some schools of thought seeing these as separate but others as very much connected. Social workers needed to know that people had seen their GP about troubling symptoms – and should ask older people directly about pain since that may overshadow other problems and also need attention. Jill noted that best practice here was not necessarily about changing the person but maybe the circumstances. As personal budgets are becoming so much more the norm, social workers will have new roles in interpreting mental health needs into desired outcomes, in devising workable support plans with contingencies, and with advising directly employed staff or brokers about situations that are puzzling them and might be related to an older person’s mental health.

So what should change?

Social workers should remember that it can be hard to differentiate depression from dementia – and that the two can co-exist. The high level of interest in dementia should not mean that other problems are marginalised – severe anxiety, for example, can have a very poor prognosis. Urgent help may be needed. Like other professionals, social workers should ask more about pain and encourage help-seeking behaviour. There are great continuities here in terms of social workers’ more general role as educators, team workers, advocates and ‘listening ears’.

The impact of domestic violence on women’s mental health: Dr Roxane Agnew-Davies

Dr Agnew-Davies described domestic violence as having a major impact on mental health. She urged social workers to ‘get personal’ and reflect on feelings arising from their own traumatic experiences. She also highlighted the importance of understanding ourselves to better understand the predicaments of others. She further asked for reflection on scenarios, such as the likely consequences of disclosures or non-disclosures and the burden of carrying secrets, especially where perpetrators of abuse and victims were in a close relationship.

Typically, women who are victims of domestic violence feel threatened, are severely physically and emotionally abused, isolated and demoralised. They suffer long-term effects of post-traumatic stress disorder (PTSD), depression and psychological distress. Medication is often prescribed. However, this cannot cure frustrated feelings of anger that are often misdirected towards their children or themselves, rather than the perpetrator of the abuse.  Strong links are found between domestic violence and the incidence of child abuse. Children who witness violence in the home are also exposed to emotional harm.

So what should change?

Dr Agnew-Davies highlighted the importance of staff training to ensure help was sensitively offered and nurtured trusting relationships and engagement. She stressed the importance of understanding the stage women were at when they came to the attention of services and asking the right questions. Thus, for a woman in crisis, it should not be ‘how did you get that black eye’? but ‘who harmed you’? to ensure the victim understood that perceptions of blame focused not on her but on the abuser.

In respect of child protection, citing a New York study, Dr Agnew-Davies cautioned against automatic removal of children in cases of domestic violence. In New York, child protection and domestic violence units work in partnership and are creating new initiatives to help prevent the violence from worsening with a prime objective of, wherever possible, keeping the children in the home.

In terms of prevention, it was important to work in schools to address misplaced attitudes legitimising violence towards women and help young people understand what makes for healthy relationships.

Problematic substance use and mental health: Dr Sarah Galvani

Commenting on the power of language, Dr Galvani said that users of services preferred and identified with the term mental distress rather than mental illness. The term ‘dual diagnosis’ could be misleading because, so often, personal histories reveal multiple co-existing psycho-social problems. Whilst the evidence regarding cause or effect and extent of overlap between substance use and mental distress is conflicting, strong associations are nevertheless clear.

Cannabis and alcohol are the nation’s favourite substances. Although cannabis is often implicated as a cause of mental illness, the scientific evidence is contradictory. The position is further confused by the different types and strengths of the substance which are now available. However, ‘a fair body of evidence’ suggests that early usage of the drug by young people is significantly damaging. At the other end of the life-span and in respect of alcohol intake, older people are now emerging as a new risk group. However, in spite of the prevalence of problematic substance usage, in 2008 40 percent of local authorities had no local strategies in place and later evidence highlights the need for better support for this group. People from minority ethnic groups are particularly poorly served. Although some evidence of creative practice exists, social workers tend to lack confidence in working with this client group.

So – what should change?

In terms of training and asking the right questions, it is important to recognise not only potentially damaging effects of substance use, but also people’s positive experiences, such as relaxation and reduction of unwanted side effects of prescribed psychotropic medication.

Assessments should focus on people’s needs, include ‘collateral’ information from friends and family, be conducted with empathy, demonstrate listening skills over and above form-filling, assess levels of mental distress, acknowledge cultural and religious beliefs and set realistic achievable goals.

Good practice should routinely include advocacy, partnership working and recovery rather than treatment approaches to help people regain control over their lives and a role in society and to establish healthy relationships.

Women and mental health in secure settings: Kelly Alexander

Women in secure settings have complex psycho-social profiles. Histories of childhood sexual abuse, having been ‘in care’ and evidence of social and economic deprivation are marked amongst this group. Unlike men who tend to enter secure psychiatric settings via the criminal justice system, most women in comparable units are detained under civil sections of the Mental Health Act 2007. Men in prison are more likely to have committed violent and sexual offences, whereas the incidence of violent offending is lower in respect of women prisoners. Many women in secure hospital units have histories of self-harming and aggressive behaviour and they are likely to have diagnoses of personality disorder. Over half of women prisoners report having suffered domestic violence. Substance misuse and mental health issues feature heavily amongst women who offend (located in both hospital and prison settings). Significantly, a Home Office study (2008) found that nearly 18,000 children are separated from their mothers by imprisonment each year but only 5 percent of these remain at home.

What should change?

Into the Mainstream (2002) addresses the psycho-social, economic and gender-related factors relevant to this client group. Ms Alexander highlighted the potential for social work to assert itself arising from the report by ‘filling the gaps’ in areas, such as:

  • promoting the social context of women’s experiences with particular reference to the abuse histories, which arguably should be placed at the centre of the care plan;
  • responding to the ‘brighter future’ identified by women who self-harmed when provided with social support;
  • seizing opportunities to challenge damaging ‘deficit-based constructions of women’ and reframe generally held perceptions;
  • addressing the apparent neglect of family and child care ‘separation’ issues;
  • identifying the specific needs of women from minority ethnic groups;
  • providing a bridge between the agencies involved, the woman and her community.

What were the main themes to emerge from the day?

At the concluding session of the conference Professor Mike Fisher noted:

  • The importance of sensitivity and understanding the feelings of people seeking help;
  • The potential for partnership working at strategic and grass root levels to develop and implement policy and promote innovation;
  • The need for assertive social work focusing on the social history, user needs and multi-agency working – and filling the gaps!

… And delegates’ unanswered questions?

  • How can social work retain its identity in the climate of economic constraints and dominance of healthcare models and mindsets?
  • How might the voices of survivors about their experiences of recent changes in services inform recovery models?
  • What is the role of ‘practitioner researcher’? What support can MRC provide to help practitioners to get started?

Finally, Professor Fisher urged delegates and wider MRC membership to engage in dialogue about ideas for future programmes and ways of supporting continuing professional development.

Thoughts…comments…suggestions? What are the priorities in mental health social work practice?

Dr Joan Rapaport is Visiting Research Fellow at the Social Care Workforce Research Unit, King’s College London and lay member of the Mental Health Review Tribunal. This is a report of a one day conference organised by Making Research Count and held 23 November 2012 at King’s College London. Making Research Count is an English initiative that facilitates the dissemination of research findings between academics, practitioners, carers and users in the social care field.