More people with learning disabilities should be on TV!

My name is Beth Richards, I have a learning disability and I am an actress. I want to educate the world about people with learning disabilities through my acting, and think that mainstream TV in the UK should be doing more to represent people like me.

I am doing some research to find out why so few people with learning disabilities are on TV and what can be done to change this. At the moment data suggests that only 1.2% of people on TV have a disability (Mental Health Foundation, 2014) and we still don’t know how many of these have a learning disability.

My research is part of a much bigger ESRC funded project called “Getting Things Changed” at the Norah Fry Centre for Disability Studies, University of Bristol. This project is looking at how the barriers people with disabilities in the UK face can be overcome by changing the way people do things.

Very little research has been done to explore why so few people with learning disabilities are on mainstream TV, or in the media in general, but organisations like Mencap and The Mental Health Foundation have campaigned for things to improve. Some actors with learning disabilities have also spoken out about the issue. For example, Sarah Gordy, an actress with Down’s syndrome who has been on shows like Downton Abbey on ITV and The Silkworm on BBC 1, said:

“It’s important that people with a learning disability are seen on our screens and on stage – simply because we exist.”
(The Huffington Post, 2017).

These campaigns are starting to make a difference as both the BBC and Channel 4 have made commitments to improve the representation of disabled people on their channels. For example, the BBC has committed to quadrupling the number of disabled people in its shows by the end of this year, whilst Channel 4 launched its 360 Diversity Charter in 2015 and made 2016 it’s Year of Disability. I think these commitments are great, but it is hard to find out what impact they have had as the channels aren’t reporting their success widely. From a viewer’s perspective, it doesn’t seem like there are more disabled people, especially people with learning disabilities on TV, than there were a few years ago.

One reason why the numbers of disabled people on TV might not have increased despite the BBC and Channel 4’s commitments, might be down to the way TV is made. Shows are written, commissioned, casted and produced by different groups of people. This means there are lots of different layers where disability can be excluded or discriminated against. Many of them out of the control of the television channels themselves.

This seems to suggest that the way TV is ‘done’ affects the number of people with learning disabilities who end up on our screens. I hope to explore this issue in my research by talking to writers, commissioners, casting agents, producers and actors both with and without learning disabilities about the industry. I am going to look at what these people say using Social Practice Theory to help understand how the way TV is ‘done’ can be changed to help get more people with learning disabilities on TV.

I know people with learning disabilities can be actors and have lots of talents. We are role models for others because we know what it’s like to grow up with a learning disability.

Hopefully my research can help change the media for the better.

If you want to be involved or have anything else you could help me with my research, please contact me at beth.richards@bristol.ac.uk or my PA Victoria Mason-Angelow victoria.mason@bristol.ac.uk. You can also find out more about my research and the wider ‘Getting Things Changed’ project on our website http://www.bristol.ac.uk/sps/gettingthingschanged/

Policy makers do not need to introduce formal structures to achieve political innovation

Drawing on a case study of English Devolution in the UK, Dr Sarah Ayres, Centre for Urban and Public Policy Research, examines the role played by ‘informal governance’ in shaping political innovation.

Informal governance can be defined as a means of decision-making that is un-codified, non-institutional and where social relationships play crucial roles. Research evidence suggests that an analysis of informal governance is essential if we are to fully understand how political innovation occurs.

The issue of informality in policy-making is particularly timely as public managers seek to manage multifaceted policy problems within contested and uncertain environments. One view is that political decision-making has increasingly moved away from the national level of government to a more spatially diverse, temporal and fluid set of arrangements. From this perspective, policy-making is increasingly taking place in arenas where there is no generally accepted rules and norms according to which politics is to be conducted. Some argue that it is the surge of ‘wicked problems’ that have prompted this type of leadership, as multiple actors come together to solve complex policy problems. These developments raise important questions about how informal governance operates in this transforming policy landscape and the impact it has on political innovation. Yet, there is comparatively little research on the role of informality in policy-making, partly because of the complexity of studying it.

The case of English devolution in recent years provides us with an interesting example of the complex interrelationship between formal and informal policy making. In the case of English devolution, evidence confirms that informal governance has created an ‘innovative space’ to explore new possibilities and develop trust between critical actors. Elected politicians had a pivotal role in creating an ‘innovative space’ for senior administrators to develop new high trust relationships and working practices. Back stage, administrators were using informal governance to (re)configure institutional arrangements.

Evidence also confirms that informal governance was used to enhance the autonomy and discretion of administrators, leading to an ‘innovative oriented culture’. This shaped both the intention to be innovative and the creation of a permissive environment for change. Informal governance was used by a closely-knit group of well positioned and highly skilled boundary spanners who were motivated to use it in pursuit of securing government objectives. It was used as a tool to break deadlocks, promote political momentum and complement a weak formal bureaucracy. The ‘formalisation’ of informal working at critical points was utilised to secure political innovations that had traction.

Finally, research data confirmed that informal governance led to more responsive problem solving and a shared commitment to new policy goals. Central-local relationships were viewed as more collaborative and there was enhanced diversity and creativity in local policy outcomes. However, while informal working was viewed as a route to policy innovation, some respondents acknowledged the negative impacts regards transparency and accountability. Whitehall officials could be accused of using soft power to enforce the ‘shadow of hierarchy’ in nebulous ways, thus undermining the ability of local actors to secure real influence.

This research tells us that when formal structures and procedures are weak, political innovation can still thrive. Indeed, operating ‘back stage’ offers a number of distinct advantages for political innovation, although these must be mitigated against the pitfalls associated with increased informality if policy effectiveness is to be achieved without undermining democratic legitimacy.

This post is taken from a recent article by Dr Sarah Ayres entitled ‘Assessing the impact of informal governance on political innovation’ published in Public Management Review. This was written as part of a Special Issue on ‘Political Innovation’ and edited by Professor Eva Sorensen (Roskilde University, Denmark).

Dr Sarah Ayres has also co-edited a number of other reports on the role of ‘informal governance’ on devolution to England’s cities, including ‘Policy-making ‘front’ and ‘back’ stage: Assessing the implications for effectiveness and democracy’ and ‘Territory, Power, Statecraft: Understanding English Devolution’.

What the development of prostitution policy tells us about how gender is understood in Britain

Dr Natasha Mulvihill, lecturer in Criminology at the School for Policy Studies and member of the Centre for Gender and Violence Research, explains how gender power relations were implicated in how “responsibility” and “exploitation” in relation to sex purchase were defined during the parliamentary debates of the Policing and Crime Bill.

How policy is made matters. How gender power relations – how gender is understood and organised in society – are implicated in the way policy is translated from first to final draft also matters. The journey of the proposal to criminalise the purchase of sex in England and Wales is an apposite case study for how a certain version of policy becomes authoritative while others are discarded.

Prostitution is a practice patterned by gender. Research in England and Wales and internationally shows that it is disproportionately men who pay for sex from women (and from men and children). This pattern is consistent with prevailing gender power relations, which, broadly speaking, have privileged masculine interests. Accordingly, English prostitution policy has traditionally focused on ‘managing women’ – from the Contagious Diseases Acts (1864–1869) through to the use of Anti-Social Behaviour Orders against street sex workers since the early 2000s. Concern for public decency has also brought visible buyers – kerb-crawlers – in to the legal spotlight.

Among other factors, recent international obligations in relation to the trafficking of human beings for sexual exploitation has shifted the political discourse to focus on ‘demand’ – on the sex buyer. These developments made it possible for Gordon Brown’s Labour Government to introduce Clause 13 of the Policing and Crime Bill (2008), a proposal to part-criminalise sex purchase in England and Wales. I use the term ‘part-criminalise’ because the clause made buying sex an offence in certain circumstances, rather than representing an outright ban.

This initial proposal in December 2008 went through multiple iterations, emerging as Section 14 of the Policing and Crime Act 2009. My analysis of Hansard records reveals that around 25% of the time spent discussing the Bill was focused on this single clause. Moreover, the scope of the clause was narrowed over time from criminalising the purchase of sex from individuals ‘controlled for gain’ to individuals subject to ‘force, threats or deception’ by a third party.

A detailed analysis of the relevant parliamentary papers and records reveals that central to the discussion were contested definitions of ‘responsibility’ and ‘exploitation’. But we need to understand these contested definitions as evidence of gender and power in action.

Read more…

The above text draws on the author’s published work in the Journal of Public Policy. The article was first published on 23 August in British Politics and Policy, a blog by the London School of Economics and Political Science.

 

‘Fat but fit’ – Lessons in the language of a press release

This week a paper from the EPIC-CVD which I co-authored was published in the European Heart Journal. Unfortunately the article was subsequently promoted in the press with the headline ‘Fat but fit’ still risk heart disease, encouraging a belief that physical activity offers no heart health benefit to those that are overweight.

This headline is misleading because most people understand ‘fit’ to mean physically activity, however the paper didn’t measure physical fitness. Instead it measured metabolic health (ie, high blood pressure, cholesterol and blood glucose) which some term ‘medical fitness’, and is often shortened to ‘fitness’. Hence the confusion.

What the paper really shows is that being overweight and having poor metabolic health both contribute to increasing risk of coronary heart disease (CHD), or a heart attack, to put it more simply. If you group people based on their weight status and metabolic health then the risk of having a heart attack increases in the following order:

 

 

 

 

 

 

To provide some context to these numbers, we know that having a heart attack is more common in older people – that risk increases with age by about 10% per year. Being overweight and healthy notionally makes you 2 ½ years older (in terms of heart disease risk) than a normal weight and healthy person. Whilst being obese and unhealthy notionally makes you 15 ½ years older!

My take home message from these figures is that having poor metabolic health is much worse than being overweight or obese on its own; however people carrying excess weight still don’t get off scot-free. So, if you can improve your metabolic health (whether you are normal weight or overweight or obese) you can substantially reduce your risk of CHD. Equally if you can reduce your weight (whether you have good or bad metabolic health) you can reduce the likelihood of a heart attack even further.

What about being fit, ‘physically active’ fit?  

If you are overweight and are physically active then this will more than likely be good for your health – we know that physical activity has beneficial effects on metabolic health. The long-standing fat-fit hypothesis states that the health benefits of being physically active can cancel out the increased risk of being overweight, so it’s possible to live just as long if you are fat as long as you are fit. Does our work say anything about that idea? Not really, not without a lot of inference and assumptions. You’d need a study of physical fitness and weight and metabolic health to get to the bottom of that one (a study like this).

What is apparent from this analysis is that grouping people based on continuous measures of health is spurious. If you look at the ‘apparently healthy’ overweight or obese group you’ll see that their blood pressure, cholesterol, blood glucose, etc are actually still higher than the supposedly equally healthy normal weight group. To me this suggests that metabolically healthy obesity doesn’t really exist, not long-term. The people in the healthy obese group just didn’t quite meet the cut-offs for being defined as ‘unhealthy’ yet, suggesting it’s only a matter of time before they cross over to the unhealthy group.

So what’s the point of putting people in boxes, we are all individuals after all, with our own unique profile of risk factors. I’d say let’s try and keep continuous risk factors continuous and aim for lowering them across the whole range using whatever methods have been shown to work in the past. Physical activity and diet can both help in different ways, to either improve metabolic health or promote weight loss, so aiming for a healthier lifestyle is as important as it ever was.

This blog was written by Dr Laura Johnson, a Lecturer in Public Health Nutrition in the Centre for Exercise, Nutrition and Health Science, School for Policy Studies.

 

 

 

Back to school for MyHeart Beat

Dr Laura Johnson, is a Nutritional Epidemiologist and Senior Lecturer in Public Health Nutrition. Her research focuses on establishing the role of overall dietary and eating patterns in the prevention and treatment of obesity, diabetes and coronary heart disease as well as understanding the factors that influence food intake and appetite control. In this blog, she reflects on a recent visit to Malaysia to research adolescent lifestyle in conjunction with the MyHeart Beat project.

In April, this year I went back to school, some things were just the same as I remembered but others were very different, mainly because I was in school in Malaysia. I had found myself in Kuala Lumpur for work and I was visiting schools to find out exactly how big a task we had taken on for our new collaborative research project MyHeart Beat (Malaysian Health and Adolescents longitudinal Research Team Behavioural Epidemiology and Trial).

MyHeart Beat is funded by the UK Medical Research Council and Academy of Sciences Malaysia (Newton Ungku Omar Fund). The project aims to explore how changes to diet and physical activity could improve heart health in Malaysian adolescents. It’s a collaboration between researchers in the University of Bristol’s Centre for Exercise, Nutrition and Health Sciences and the University of Malaya’s Faculty of Medicine. Our aim is to find ways for Malaysian teens to be more active and eat better, which will help them in the future to avoid obesity, type 2 diabetes, and cardiovascular disease, chronic conditions that are affecting ever increasing numbers of people in Malaysia.

MyHeart Beat builds on MyHearts (Malaysian Health and Adolescents longitudinal Research Team study) an excellent project by researchers at the University of Malaya, in collaboration with researchers from Queen’s University of Belfast, who have spent the last 5 years following more than 1000 teenagers from the age of 13 to 17 years in 3 Malaysian states. MyHearts has collected detailed information on diet, activity, lifestyle and health and has shown that 15% of adolescents are overweight and a further 9% are obese. Physical inactivity is rife (64% of teens are inactive) and breakfast habits are erratic (25% of teens never or only occasionally eat breakfast). We’re planning more analyses of this rich data to find out about the patterns of behaviour related to obesity and heart health.

I’ve previously explored patterns of food intake associated with obesity and shown that it’s a combination of high-fat, low fibre and energy density that is important rather than any single aspect of diet. Key foods part of an obesogenic dietary pattern in the UK include fruits, vegetables, and high-fibre bread (not eating enough of them) and white bread, crisps, sweets, and processed meat (eating too much of them). We expect the most common foods eaten in Malaysia to be different to the UK but in principle whatever foods there that make a diet energy dense, low in fibre and high in fat are still likely to be those most important for preventing obesity. In MyHeart Beat we will apply the same method for finding patterns of behaviour (reduced rank regression, RRR). RRR is a statistical technique that, for dietary patterns, adds up intakes of all foods after giving some foods more emphasis than other (by giving pattern loadings). RRR works out how much emphasis to give different foods by trying lots of options until it settles on the one where foods are combined in such a way that the energy density, fibre and fat content of the whole diet can be predicted best. You end up with pattern loadings (numbers) for each food and the larger the loading the more important that food is for predicting the obesogenic features of diet. Using the loadings, it’s then possible to rank foods in order of importance and identify exactly what foods to change to make diets less likely to lead to obesity. With our analyses, we hope to find out not only what the most important foods are but also what activities are best for maintaining health throughout adolescence. Once we know what the high-risk behaviours are we can start working out ways to help teenagers to change.

Although, even when you know what to change you then have the task of working out how to change it. There are many different routes we can take to change behaviour; the sheer number of options can be challenging but is also what makes the project fascinating. The MyHeart Beat team has lots of experience trying to change behaviour in children in the UK, Europe and Malaysia. For changing diet we’ve attempted intensive programs led by dietitians as well as computer based courses supervised by teachers. Innovative strategies we’ve tried for increasing physical activity have included after school clubs led by teaching assistants; dance workshops and harnessing the power of social networks to spread positive physical activity messages. In Malaysia, the MyBFF@school program (My Body is Fit and Fabulous) has been designed specifically to help overweight and obese adolescents control their weight and provides a valuable platform on which to build a broader program that could help all adolescents stay healthy.

A starting point for designing an intervention is simple logistics. What is even possible to change within Malaysian schools? So that’s what brought me to Kuala Lumpur, to visit schools and see for myself how life works for adolescents at school over there. I realised that the biggest difference compared with my school in the UK was the timing. In Malaysia, school starts at 7 am and ends at 1 pm, break time is for 20 minutes between 0930-1030 (depending on which year you are in) and this is the time when the cafeteria is open for hot meals and cold drinks.

The school canteen offers lots of fried and sweet snacks like burgers, sausages, chicken and samosas, not so different to school food I remember. But more traditional meals, made of rice, noodles, eggs, fish or meat with sauce, were also for sale.

Some schools had fruit snacks suggesting it may be possible to alter the range of foods available. There were vats of ice-cold drinks like fruit squash and Milo and iced tea, all sugar-sweetened. Water wasn’t freely accessible but water bottles were sometimes brought in from home.

Touring the rest of the school, I saw that there were plenty of spaces for physical activity, a school gym, hall, basketball courts and a playing field. But the heat was high as was the humidity, I was sweating just standing still! I had no desire to be physically active in those conditions, which made me wonder what the kids thought about that.    

That leads me back to what MyHeart Beat aims to do in the next 18 months. We plan to find out what staff and students think about different options for changing diet and activities – because ultimately it’s the people whose behaviour you are trying to change that know best what will work for them. We’re also aware of some local initiatives by state nutrition divisions starting this year to make improvements to the school food supply e.g. in Perak, parents/teachers are asked to report if the canteen is selling unhealthy food. To find out more about what the adolescents, teachers and Ministry of Education officials think about what can and should change, we’re planning some interviews and focus groups to ask them directly. From this we’ll work out the options that will be most feasible for changing. Then we’ll develop an intervention (set of changes) that we hope will improve diet and physical activity and ultimately cardiovascular and metabolic health. Our approach follows the UK Medical Research Council (MRC) recommendations for designing interventions. We hope that by building on a strong evidence base and crucially talking to the local people, we’ll ensure the intervention we design will be a success.

Towards the end of 2018 we’ll be taking our intervention out to some schools to test it out. This small pilot project is the ultimate aim of all of the different parts of the project and will tell us if the plans we’ve made will work in practice. I’m looking forward to visiting Malaysia again at that stage, and getting some more fabulous hospitality from the MyHeart Beat researchers over there!

To Shooka, Shafina and Fadzrel, Terima Kasih (Thank You) for having me.

 

 

 

Women Studies Departments in Indian Universities face threat of closure

Dr Geentanjali Ganjoli, Senior Lecturer at the Centre for Gender and Violence Research, School for Policy Studies, discusses the future of Women’s Studies in India.

There are 163 Women’s Studies Centres (WSCs), funded under the University Grants Commission (UGC) in universities and colleges across India, most of which now face the threat of being wound up after September 2017.

Concerns over the future of the Centres were originally raised in March 2017 but were temporarily allayed when the UGC issued a public notice on 29th March stating that all existing schemes would continue for the fiscal year 2017-18. However, on 16th June, the UGC published a revised notice that ongoing schemes under the Plan Head would be funded only up to September 2017.

The women’s studies centres in India are organically allied to feminist movements in India, and are historically linked to the UN international decade for women (1975-85), and the Status of Women Report led by a group of Indian feminists in 1974, which revealed the myriad social and economic hardships and inequalities suffered by Indian women. Women’s Studies was introduced into the National Policy of Education in 1986. The late 1970s and 1980s also saw the rise of women’s movements’ campaigns against forms of violence against women, including rape, sexual harassment in public spaces and the workplace, dowry, domestic violence, representation of women in the media and female infanticide, and is also linked to wider secular movements.

These concerns have always been represented in the teaching and research interests of women’s studies departments in India. For instance, the Research Centre for Women’s Studies, SNDT University, which was the first women’s studies department set up in the country in 1974, conducts action research programmes on topics as varied as assessing the extent of sexual harassment in university campuses, research on problems faced by the girl child within the family, and teaches women’s studies at Masters and research PhD levels.

In spite of the intellectual and political insights provided by women’s studies scholars in India, the discipline itself has often been treated as marginal by universities and funding bodies. One suggestion is that the challenges to patriarchy and gender roles posed by the Women’s Studies Centres threaten the inherent misogyny within the academy, and this may the reason why this discipline is under threat now. As observers of Indian society are aware, women students have always been subjected to discriminatory policies. Examples of this include: curfews for women in hostels, women students being evicted from their hostels in the summer break and dress codes imposed on female students in different universities.

Within this context, the threat to women’s studies centres indicates the further shrinkage of secular and feminist spaces within Indian academia, and is concerning particularly within the wider context of the rise of misogyny and right-wing Hindu politics in the country, and indeed internationally.

The Centre for Gender and Violence Research has always had close working and personal connections with women’s studies departments in India, and elsewhere, and this is reflected in our new journal in its scope, editorial board and papers. The first issue of the journal has an interesting paper written by academics from the Women’s Studies Centre in Tata Institute of Social Sciences which showcases the work of women’s studies departments in India in terms of its links to activism and feminist concerns with regard to policy and practice on gender based violence.

To read more articles like this, sign up for a free trial of the Journal for Gender Based Violence.

Celebrating the new Journal of Gender-Based Violence

Emma Williamson, Co- Editor of the Journal of Gender-Based Violence and Head of Centre for Gender & Violence Research, introduces the first issue and shares her ambitions for the journal.

As a co-editor of the journal and currently the Head of the Centre for Gender and Violence Research, where the Journal is based, it is an honour to launch the first issue of Journal of Gender-Based violence and share what it means to us, to our international colleagues – activists, policy-makers, front line staff, and academics. We have made the first issue free to access online until 30 June and hope it will be widely shared and read.

The driving force behind the journal is Professor Marianne Hester, who has contemplated what this journal might look like for some time. As she highlights in the editorial of the first issue, the launch begs the question ‘why now?’ Increasingly over recent years those working in this field have had the opportunity to reflect on both progress and success. But we are also aware of threats to the legal and social advances which have been hard won, and concerned about how protections can be rolled back – under the guise of ideology or economics.

So, this journal, at this time, offers an opportunity to share knowledge and insights and to resist those threats. The journal has been organised to reflect the different voices of those working in and living with – gender-based violence. It also seeks to share knowledge across a range of divides.
The journal has internationally-based regional editors to encourage the submission of papers from across the world. We welcome submissions from those for whom English is not their first language and will work with those authors to provide a broader platform for that work. Too often the knowledge and expertise of our international and European colleagues is overlooked and we hope to address that. We therefore invite country and region wide networks to contribute to the journal and engage in that very debate.

By recognising the broad spectrum of knowledge which is out there, we hope this journal is a place for all of us to take the field further and learn from one another, not just in terms of academic papers, but in relation to policy, practice, and activism.

At the heart of the journal is a commitment to social justice and the tackling of gender-based violence within the wider context of inequality and disadvantage. With that in mind we envisage the Policy and Practice and Open Space sections being used to report on campaigns, new interventions, and good practice.

We also invite readers to reflect on work which has inspired them and to share with other readers why such works are still important today. We hope this will inspire new researchers to rediscover authors whose work laid the foundations for the current field and to add to current debate. So if you have a book or author whose work you think others should know about, please do consider writing a reflection piece for the Open Space section. Similarly, if you wrote something years ago and want to revisit it – please get in touch!

Finally, the first issue ends with a piece offering memories of Jill Saward, activist and campaigner. Again, we are proud that this journal can recognise the breadth of knowledge that the field of Gender-Based Violence draws upon, recognising the work of campaigners and the knowledge they contribute.

As such, we dedicate this first issue to all those who have experienced Gender-Based Violence, and those who continue to fight for ‘justice’.

Read the journal for FREE until 30 June 2017:

Find out more about the Journal of Gender-Based Violence

Register for the Journal newsletter

Follow @JGBVjournal on Twitter.

Free institutional trials are available for all Policy Press journals. Why not recommend the Journal of Gender-Based Violence to your library?

What can children in the care system tell us about their well-being?

Professor Julie Selwyn is a Professor and Director of the Hadley Centre for Adoption and Foster Care Studies at the School for Policy Studies. Here, she shares the findings from the new report she co-authored, Our Lives, Our Care: Looked after children’s views on their well-being.

There were 70, 440 children in care in England as of 31 March 2016, according to the Department for Education. The majority of children enter care because of parental abuse and neglect and often enter with physical, emotional and behavioural difficulties as a result of traumatic experiences. Every year ‘outcome’ data are collected and published by the Department for Education on children’s educational achievements, offending, mental health, and number of teenage pregnancies.

Children’s experiences not heard across system

Generally, children in care do not achieve the same level of academic success as their peers and are much more likely to have problems with crime, drugs and have poor mental health. Consequently, the care system is often viewed as failing but there is no systematic collection of information on how children feel about their lives in care. Nor do we know whether children in care emphasise the same aspects of their lives as being important to their well-being, as those identified by children in the general population.

This excerpt was taken from the original post in the WhatWorksWellbeing blog. Read the post in full.

Crisis in care homes: how can we improve standards in the context of austerity?

Liz Lloyd, Professor of Social Gerontology in the Centre for Health and Social Care discusses the factors behind deteriorating standards in care homes.

There is a crisis in British care homes, arising not merely from bad behaviour by staff members but from the economic and political context of the social care market.

There are currently close to half a million individual places (‘beds’) used by around 4% of the population aged 65+ and 17% of people aged 85+. Statistics vary somewhat, according to what is being measured, but we can be certain that although the number of older people in the population have risen, a smaller proportion of them live in a care home, that they are older on average when they first enter the home and have more complex, long-term illness that require more skilled assistance.

Older people are also increasingly likely to pay at least a part of their care home fees. According to Laing and Buisson’s 2012-2013 Care of Elderly People UK Market Survey, some 43.4% of older residents in the independent sector paid the full costs and a further 14% received partial council support and topped up their fees. The majority therefore still rely wholly or partially on public resources but this proportion is falling.

Running parallel to these changes is the rise in private ownership of care homes and payment of fees. Over three decades, the proportion of places in local authority run care homes in the UK has dropped while the proportion in the private, for-profit, sector has risen so it now has a 75% share of all places. The voluntary, not-for-profit, sector share has been more stable but is falling slightly. The current crisis involves increasing levels of provider failure and exit from the care home market. Several big providers are deeply in debt, raising fears of a major collapse like that of Southern Cross in 2008. Owners point to rising costs as a consequence of the introduction of the national living wage and falling profits because fees paid by local councils have not risen in line with increased costs. The consequences for providers is an unsustainable business model.

The consequences for older people who need residential care are evident in delayed discharges and hospital waiting lists, a point illustrated perfectly in the case of Mrs Iris Sibley, who remained in the Bristol Royal Infirmary for six months while her family sought a care home place. For residents and their families the insecurity associated with provider failure means added anxiety and stress. Add to this the associated problem of worsening standards, which the Care Quality Commission fears will grow in the absence of major reform. Mrs Sibley’s son described how one place she was offered was so bad that he ‘wouldn’t put a sick dog in there’.

Not all older residents experience the same thing, of course. According to Norman Lamb MP, former Health Minister, the market has come to benefit older people with enough money to pay for their own care while disadvantaging those who rely on state support. Care homes where all or most residents pay their own fees are more secure than those that rely mostly on the local authority payments and are more able to absorb the additional cost of the national living wage. We might question why anyone would argue against a decent level of pay for the people who care for us when we are sick and disabled, but the dominant theme in social care for older people is that it should be as cheap as possible – hence, high numbers of migrant workers in the care home sector.
In fact, debates about care homes focus overwhelmingly on keeping costs down and agreeing who should pay. Should it be individuals (during their lifetime or after their deaths), their families or the public in general? Health and social care are frequently portrayed as unaffordable in the context of the ageing of the baby boomer generation.

I declare an interest here, being a baby boomer, but take issue with such a simplistic argument. Demographic trends have an impact on demand for care, for sure, but there is evidently a wider set of factors at play. Indeed it is arguable that demographic trends provide a useful rationale for cuts to public spending that would be made anyway. Policy-makers have placed themselves in a bind as cuts to public spending have impacted on private sector profits, proposals to recoup the cost of care from older people’s estates after death are met with outrage in the press, as are stories like that of Mrs Sibley.

Evidence on what makes a care home a good place to live and work is abundant. Higher standards of care are usually reflected in higher levels of staffing, more skilled workers and a culture of person-centred care that attends to the whole range of an individual’s needs, not merely to their basic physical requirements. A culture of ‘person-centred care’ promotes a sense of belonging and security and enables residents to maximise their capacities, enjoy new experiences and take risks. Care homes are likely to remain a part of the care system, despite their reputation, so we need to focus on standards. A sizeable number of us who will live in a care home at some stage of our lives, or have a close relative who does. But more importantly, care homes are inextricably linked with other parts of the care system so it is in our interests to think about standards in care homes as a policy issue that affects us all.

The Values of Assessment: It’s easier when you work in partnership

Professor Val Williams, from the Norah Fry Centre for Disability Studies at the School for Policy Studies discusses a recent project to understand people’s personal experiences of the social care assessment process.

Every day we hear about a different crisis in the NHS, some of which, at the least, can be attributed to problems in the funding of social care.

So, what happens to people who need to ‘apply’ for social care? It’s not like phoning up the doctor’s surgery and seeing your GP. To get into the social care system, you first need to have an assessment. And that assessment process will go on to determine how you will be funded, and what support may or may not be considered essential to enable you to live your life. Sounds simple? Not necessarily so. As the findings from our recent research ‘The Values of Assessment: Disabled adults and social care’ show.

The research team, led by Val Williams and Sue Porter at the Norah Fry Centre for Disability Studies, worked in partnership with members of a peer support network at the West of England Centre for Inclusive Living (WECIL), a local disabled people’s organisation, to understand their personal experience of assessments. These stories revealed the sometimes deeply felt emotions and negativity which can be created by an assessment. It can, for example, be very difficult to portray yourself as ‘needy’, to tell someone else about all the things you cannot do, rather than share the positive things you can do.

The 2014 Care Act was being implemented at the time this research was carried out, requiring social care practitioners to focus on disabled people’s own chosen outcomes in their lives, and to carry out assessments in a personalised way, so that disabled people achieve ‘wellbeing’. Everyone is different and real personalisation means recognising that fact.

All this sounds great, but the disabled people who worked with us knew that things can feel very different in practice.

The core part of this project, led by Jon Symonds, included interviews with 30 practitioners, and the messages which came from them were actually very similar to those from disabled people. In fact, the disabled researchers in the WECIL group helped to find meaning in the practitioner interviews, by listening to extracts and discussing them with the team. The theories of social care assessments might sound good, but they are often hard to achieve in practice.

‘Social workers have so many pressures on them that it is sometimes difficult for them to put the principles into practice’ said Symonds. ‘Resource Allocation Systems restricted the amount of funding available to meet a person’s needs and although many would advocate for disabled people with their managers, some would also negotiate with a person which demands were reasonable and more likely to be funded’.

The disabled people interviewed in this project said that what was most needed was ‘trust’. Practitioners also spoke about establishing a personal relationship, listening and taking time for trust to build. However, practitioners described meeting with some potential clients they felt could not be trusted:

‘Sometimes they need help but don’t want it, and sometimes they want help and don’t need it’. (Practitioner interviewed in the ‘Values of Assessment’ research).

So, there is still a need for social workers to exert ‘professional judgment’ to help some people decide what will best enable them to experience wellbeing. These are the more difficult things to discuss, and to reconcile with the views of disabled people themselves, who want control over their own lives. For truly independent living, people need support and may even need help in reaching a decision about that support. However, they also want to be part of the conversation, to speak up for themselves, and to be full partners in that assessment process. Achieving that joint interaction is much more than just ticking a box on an assessment form.

On January 19th 2017 we launched a set of videos, which were created by members of the team led by Jon Symonds, and feature the experiences of the WECIL group. These videos were designed to start the conversation between social work practitioners and disabled people who use social care. The most important thing to learn from the disabled people in these videos is that they could understand, empathise and work with the practitioners who were assessing them.

The videos from this project are now freely available, and the project team would like to hear back from anyone who has used or watched them – for training, for discussion, or just for fun. We would like to know how they’re being used, and how they could make a difference.

The ‘Values of Assessment’ videos are dedicated to Dr Sue Porter, who died suddenly on 11 January 2017, whose inspiration and leadership made this project possible. Her untimely death was a tragic loss to the disability movement, and to disability research.