Norah Fry Research – Page 3 – Comment and analysis

Co-production and change for disabled people

Posted on April 15, 2015 by policystudies

Val Williams discusses research around support for disabled people

Social practices can be enabling or disabling

Imagine you are the woman in this picture, a patient going to your doctor to talk about symptoms you’ve been having. The patient here is a disabled woman who is sitting directly in front of the doctor, with her personal assistant taking notes for her, out of the doctor’s direct line of sight. This might seem a trivial thing, but going to the doctor might not always work so well for some disabled people. The doctor might talk exclusively to their carer or to a family member, instead of engaging directly with them. Or of course, they may not have a third party to help them remember what has been said. All these things are important when you want to get good health care, and they may require just a few changes in the way things are routinely done. Kerrie Ford, in the picture above, set up this scene back in 2010 as part of a training pack arising from a research study about support practices, in which she was a researcher.

Although disabled people might traditionally be seen as part of the problem, they can find their own solutions. For instance, in our research about support practices, disabled people suggested and developed ways of getting their messages across, to shift practices and to enable them to challenge inequalities. Disabled people have their own movement, which is now a global one, and have banded together to re-define some of the problems that confront them, and to redress the power imbalances that they face when professionals, practitioners and medical authorities dictate what is best for them. The most pressing issues are to find better ways to understand how to change disabling practices, while we listen to and work with disabled people themselves. Our new study is aiming to do just that. ‘Tackling disabling practices: co-production and change’ has been funded by the Economic and Social Science Research Council (ESRC) which I lead at the Norah Fry Research Centre at Bristol. Disabled people’s organisations, represented by ‘Disability Rights UK’ (DRUK) are joining with us to explore the ways in which we can understand and theorise change, in a way that really makes a difference to disabled people’s lives, on their own terms.

Disabled people of all ages experience inequalities in society, in every part of their lives. There is strong evidence that disabled people are often amongst the poorest, as the recent poverty survey carried out at the University of Bristol has revealed and that they face abusive or inadequate support practices in everyday settings (Antaki et al., 2007). Further Pauline Heslop and her team found that people with intellectual disabilities were dying prematurely, with men dying 13 years earlier than non-disabled men, and women some 20 years earlier. Health care is simply not adapting to meet the needs of all. In the UK, most of these problems are the subject of intensive investigation, resulting in legal and policy reform. For instance, in 2011, a Panorama television documentary exposed the abusive treatment being perpetrated against people with intellectual disabilities in an ‘assessment and treatment unit’. Following this, that particular hospital was closed down and a Government Concordat was signed in 2012, which pledged a reduction in hospital placements for people with intellectual disabilities and ‘the closure of large-scale inpatient services’. Support was also provided for commissioners and practitioners in the form of workforce development, guidance and toolkits to ensure better practice. However, in 2014, a further report acknowledged that:

For decades people have argued for change and described what good care looks like, and how we can commission it….. but the problem remains. Why? (Bubb, 2014: 17)

The conclusion in the 2014 report is that we do know ‘what good looks like’, and indeed we also know how to get there, but that it is simply too easy to ‘do the wrong thing’. Yet again, a further series of recommendations ensued, which invoke the rights of disabled people and their families to better community services, along with a system for holding local authorities and other agencies to account.

Why then are some practices so difficult to shift? Our new project starts in April 2015, and aims to interrogate the turn towards ‘practice’ in social science, in order to see what it can offer to our understanding of what is going on in practice and how the goings-on could be malleable, could be shifted, and maybe made more productive. We do not want to demonize those who are there to provide health and social care support. Indeed, we know that all of us could be inadvertently discriminating against disabled people by the way things are set up – even in our own Higher Education institutions. One of the strands of research in our new project is being led by Sheila Trahar in the Graduate School of Education, to explore the experience of disabled students, from their own point of view, while Sue Porter will lead on research about the experience of disabled academics. Other strands will be led by Beth Tarleton, building on the ‘Working Together with Parents Network’ working with Nadine Tilbury, Danielle Turney and Professor Elaine Farmer, to analyse how to achieve better support for parents with intellectual disabilities; by Pauline Heslop, who examines reasonable adjustments in healthcare provision; and by Val Williams and David Abbott, who build on the approach to micro-analysis of interaction (Williams, 2011) collecting videos and recordings of what goes on between support workers and disabled people. All our research work in this project is about how we can make a difference, and how we can theorise those changes in a way that is useful for social science and for disabled people themselves. Therefore Bernd Sass at Disability Rights UK is central to everything, and in the research strand based at DRUK will be taking forward the notion of ‘user-driven commissioning’ to see how disabled people’s own actions can have an effect on changing local authority and health care structures.

We are particularly pleased that our ESRC project is based on several partnerships. Not only is the DRUK a key partner, but the project will also include Professors Charles Antaki from Loughborough University, Celia Kitzinger from the University of York, Chris Hatton from the University of Lancaster, Alan Roulstone from Leeds, Dr Stanley Blue from Manchester, and Sue Turner from the National Development Team for Inclusion (NDTI), as well as Professor Andrew Sturdy from our own Department of Management at Bristol. We are working with experts across the disciplines, who have different ways of conceiving of practice – from the high level policy and strategic decisions made by government, to the micro-detail of front-line support offered to disabled people. Instead of pointing fingers of blame at particular individuals or institutions, we want to find out more about how to understand social practices, so that we can enable them to change.

Val Williams is Reader in Disability, Policy and Practice in the Norah Fry Centre the School for Policy Studies

References

Antaki, C, Finlay, W.M.L., Jingree, T and Walton, C.(2007) “The staff are your friends”: conflicts between institutional discourse and practice. British Journal of Social Psychology, 46, 1-18.

Bubb, S. (2014) Winterbourne View – Time for Change. http://www.england.nhs.uk/wp-content/uploads/2014/11/transforming-commissioning-services.pdf

Heslop, P. et al. (2013) Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD): final report. http://www.bris.ac.uk/cipold/

Williams, V. (2011) Disability & Discourse: analysing inclusive conversations with people with intellectual disabilities. Wiley-Blackwell.

Multimorbidity guidelines falling short: National Institute for Health and Care Excellence (NICE)

Posted on November 4, 2014November 4, 2014 by policystudies

Pauline Heslop, Norah Fry Research Centre

The National Institute for Health and Care Excellence (NICE) has recently been consulting on the scope of proposed guidelines on multimorbidity. Multimorbidity is, in summary, the co-occurrence of two or more chronic medical conditions in one person. Yet the proposed scope of the guidelines will not, in their current form, offer guidance on multimorbidity in people with learning disabilities. So is this a problem that needs attention? Yes.

The recent Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) and other national and international studies suggest that people with learning disabilities have a greater number of health problems than others, and a greater variety of healthcare concerns than those of the same age and gender in the general population. This would suggest that particular attention must be paid to this population in any NICE Guidelines. Indeed, recommendation 3 of the CIPOLD report was that NICE Guidelines should take into account multimorbidity in relation to people with learning disabilities.

Despite this, the draft scope specifies that clinical issues that will not be covered include:‘Identification and management of specific morbidities associated with learning disabilities’. No justification for this exclusion is given, and this sentence alone raises four issues:

1) What does ‘associated with’ mean in practice, and what would be the threshold for a disorder to be ‘associated with’ learning disabilities?

2) Some people with the same condition (e.g. autism, cerebral palsy) may or may not have learning disabilities. As it stands, the NICE Guidelines would include people with autism and associated multimorbidity who do not have learning disabilities, but would exclude people with autism and associated multi-morbidity who do have learning disabilities. Clearly, this would be a nonsense.

3) No other groups with protected characteristics under the Equality Act 2010 are excluded.

4) No other groups of people with conditions that themselves have associated comorbidities are excluded.

In addition, people with learning disabilities (and people with dementia) are excluded from the guidelines in relation to ‘the management and organisation of care’ in relation to multimorbidity. Again, no rationale for this is given and no other potentially vulnerable groups have been excluded.

Although these exclusions are of serious concern, there is a second issue that suggests discrimination against disabled people, with the proposed use of Quality-Adjusted Life Years (QALYs) as the preferred unit of effectiveness. QALY is a measure of the value of health attributes in a single index number. The basic idea underlying the QALY is that a year of life lived in perfect health is worth 1 and that a year of life lived in a state of less than this perfect health is worth less than 1. QALYs are usually incorporated with medical costs to develop a cost-effectiveness analysis of any treatment or intervention. My concern is that on the QALY scale, the quality of life of those with illness or disability is ranked below that of someone without a disability or illness, suggesting that QALY gives a lower value to preserving the lives of people with a permanent disability or illness than to preserving the lives of those who are healthy and not disabled, and favours those with treatable conditions and those with greater potentials for health – in terms of functioning or longevity. Indeed the European Guidelines for Cost-Effectiveness Assessments of Health Technologies, which conducted the largest experimental survey ever undertaken in Europe to test the validation of QALY assumptions, concluded that the use of QALY indicators should be abandoned for healthcare decision-making.

In all, the draft scope for guidelines on multimorbidity by NICE has a long way to go in relation to equality for people with learning disabilities. To me it appears to be arbitrary, discriminatory and contrary to the requirements of the Equality Act 2010.

As supporters of people with learning disabilities we are raising our concerns about this. What will you do?

This is an edited version of a blog sent to the new Learning Disability Association England.

This blog was originally posted on the PolicyBristol blog.

How long is a good life?

Posted on August 20, 2014August 28, 2014 by policystudies

David Abbott, Professor of Social Policy, asks some thought-provoking questions about life and death

How long are we ‘supposed’ to live for? ‘Three score and ten’ was a phrase I used to hear growing up (70 in new money). Our cultural ideas about life course and life span and who should die when are deeply ingrained. Parents should never bury their children, right? But what if you are born with or develop a condition which means that from a relatively young age your life span is destined to be much shorter than the norm and that without a dramatic medical breakthrough, very little will change that.

Boys (and it’s nearly always boys) diagnosed with Duchenne muscular dystrophy are one such group. Duchenne (or DMD) is an inherited neuromuscular disease and the average age of death used to be 19 but during the last few years, with significant improvements in the ways DMD is managed, life expectancy has risen to around 27 years. There is currently no cure for DMD.

The Guardian recently reported on two fathers whose sons had been diagnosed with DMD. One, now rather famously, produced a poster for the Evening Standard with a controversial strapline – ‘I wish my son had cancer.’ Why? Because in the Dad’s words: “I felt a cancer diagnosis would have more options, more of a chance, a chance to try something – a chance that those with DMD still don’t have.” In the second article, a father whose two sons had received a diagnosis of DMD decides he must cherish his ‘dying’ sons and ‘hold them close to my heart.’

As a generation of adult men with DMD emerge their status as role models is so important. Pioneers like Jon Hastie, Carl Tilson and Doug Robins – to name just some suggest that much is possible. Yes it happens within a different time frame. My question is: how can men with DMD can be supported to live full lives in the time that there is? How disabling might it be to live a life weighed down by the pressure associated with our ideas of what a ‘normal’ life span is? Look at the comments on the Guardian articles. Readers respond to a ‘tragedy’. You can’t lead a tragic life all your life – however long or short. Deep breath. I am not in any of these parents shoes. And I wonder for a moment what it is like to grow up as someone who is perceived to be dying all of their lives? Is it true that boys – and men – with DMD don’t have options or chances?

From our research at the School for Policy Studies, (see our freely available research report, and our academic article) we know that men with DMD don’t always get enough support to live the lives they want to. Whilst health and social care services need to up the ante it maybe that our ideas about the length of a ‘good’ or ‘normal’ life need to change as well.

David Abbott is Professor of Social Policy in the School for Policy Studies at the University of Bristol.

Changing Horizons: research about people with learning disabilities who have experience of the criminal justice system

Posted on July 31, 2014 by policystudies

This summary was prepared by the authors of the ‘Changing Horizons’ report: Val Williams, Victoria Mason and Paul Swift, together with Charlotte Hicks from Guideposts Trust.

It is estimated that between 20-30% of offenders who enter the criminal justice system have a ‘learning disability’. In 2005, a Benjamin Meaker fellow, Professor Susan Hayes, visited Norah Fry Research Centre, and her research in a large UK prison (Hayes et al., 2007) lent weight to the concerns about people with learning disabilities in prison. Since then, there has been other important research to start to examine the needs of this group of offenders (Loucks, 2007), but very little in-depth work to understand the experiences of the criminal justice system (CJS) from the point of view of people with learning disabilities themselves.

Staff at Norah Fry Research Centre were therefore very pleased to be able to carry out a piece of research for Guideposts Trust in 2013-14, in order to inform their training project for this group of people. The study worked in two ways. Firstly a small group of people who had past experience of offending formed an advisory panel for the project. They helped the research team to focus on particular themes that had been important to them, and told us for instance about the way in which people can get pulled into crime by a wish to identify with a peer group, or with ‘friends’. The main motivation for crime seemed often to be a basic isolation and loneliness in people’s lives. Secondly, the research team carried out interviews with ten individuals across the South-West, all of whom had some experience of police custody, being arrested or cautioned, or going to court. We wanted to hear these people’s stories, on their own terms, and their interviews were re-drafted into narratives, which they then read through and checked.

The first striking finding in this small study was that ‘offenders with learning disabilities’ can and do want to take positive action, to support others, identify solutions for themselves, and help research to improve the system. Several of the people we met were involved in peer support organisations, taking part as active citizens and making many useful suggestions for training the police force and others involved in the CJS. Although people often mistrusted the police, many had good experiences of individual officers and of other professionals. These were people who became known to them as individuals, and whom they grew to trust.

Problems with close relationships were often at the root of the criminal behaviour in which people engaged, and some of this was associated with the experience of being a victim (e.g. of hate crime or harassment). In some senses, these people’s identity morphed between victimhood and criminality, and one could see that these were two sides of the same coin. Some of the problems they faced in the CJS were related to not being recognised as ‘disabled’; identification at an early stage was clearly important, although for some, this was problematic – since they did not necessarily see themselves as disabled. However, the provision of accessible information and clear communication would arguably be of benefit to all prisoners. Our previous research (Swift et al., 2013) confirmed the difficulties of access to legal advice for all people with learning disabilities, and complex information was certainly one of the issues that emerged from the negative, confused experiences of several of our participants.

The recommendations we made from the present study focused largely on early identification, and in fact prevention, of criminal activity amongst this group. Those with poor socio-economic circumstances and lacking the social capital of family or close friends were particularly at risk. They should be offered the protection of the 2005 Mental Capacity Act, and the protection afforded by safeguarding procedures, together with more information and training to help them avoid the dangers of offending behaviour. At the other end of the system, however, those who have been in the CJS need sensitive support to rebuild their lives. In particular, this research highlighted the potential of self-advocacy groups to be sources of support to people who have been in trouble with the law.

We are grateful to the Guideposts Trust for supporting this research study, but would particularly like to thank the participants with learning disabilities who took part in the research. We hope that they will have a chance to continue rebuilding their own lives and support the lives of others.

References

Hayes, S., Shackell, P., Mottram, P., and Lancaster, R. (2007). The prevalence of intellectual disability in a major UK prison. British Journal of Learning Disabilities. 35, pp.162-167

Loucks, N. (2007) NO ONE KNOWS. Offenders with learning difficulties and learning disabilities. The prevalence and associated needs of offenders with learning difficulties and learning disabilities. London: The Prison Reform Trust.

Swift, P., Johnson, K., Mason, V., Shiyyab, N., and Porter, S. (2013) What happens when people with learning disabilities need advice about the law? Bristol: Norah Fry Research Centre.