Tackling Disabling Practices: Co-production and Change

Here’s an interesting blog piece written by one of our partners in the NDTi, Sue Turner

LD Nurse Research

In this blog Sue Turner discusses a  three year research project by the Norah Fry Research Centre, School of Policy Studies in partnership with Disability Rights UK

The Equalities Act 2010 requires public sector organisations to put reasonable adjustments in place for disabled people, so that they will not be disadvantaged when accessing services. Unfortunately we know that this does not always happen. Why is this and what can be done about it?

Broadly, these are the questions the ‘Tackling Disabling Practices’ project is trying to answer, recognising that top down policies do not always work, and using different theories of change to understand what is happening. The project is big, consisting of five different strands through which questions about what leads to change at a practice level can be asked, and crucially how disabled people are involved in, and are part of making change happen.

Briefly the strands are:

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Co-production and User-Driven Commissioning – Bernd Sass, Disability Rights UK.

At our co-production workshop in Bristol on 23 September 2015 I referred to disabled people who bring whole systems change into the NHS – after recovering from deep crises and taking every opportunity to remodel our own lives. What is this special gift, why is it so valuable and hard to get hold of by the NHS, social care and partners?

Patient and Public Voice – what’s in it for us?

Perhaps it’s a good thing that personalisation/co-production now features in so many more project plans and strategies than ever before. However, we are far from reaching the full potential of person-centred care which would be truly owned and driven by disabled people. The key forums in health and social care – like the recent EXPO in Manchester – still largely focus on a medical lense of ‘long-term conditions’ or safeguarding rather than ‘disability’ or ‘disabled people’ – is this because the latter suggests there is a lot more to doing ‘with’ rather than to people and this should be avoided at all cost?

Disabled people are experts in mastering crises from birth or from diagnosis and then manage change every day. At first glance, we may think we experience a different kind of crisis in health and social care as far as funding models are concerned. But what is there to learn from disabled people when it comes to the new models of delivery in Better Care Fund, Vanguard and IPC sites? How can we foster ownership and make services and support more directly answerable to people? Peer support has been a natural response in the disability movement, yet how it works and what it needs is still not understood and incorporated by the centre. Undoubtedly, if people are supported and some resources go with them, they will tap far more into their own support networks while opting for less intensive care, support and treatment options. To this end, statutory systems need to build a lot more on how people lead their own holistic lives – with and irrespective of any long-term condition.

There’s also great potential to create collective spaces, plugging the gaps between individual ‘choice’ and wider determinants of health inequalities affecting groups, by people banding together to form peer-led commissioning organisations for example. How can we have a health and social care system that largely excludes those with lived experience from service planning and delivery when most would be very happy to explore and then pass on their most valuable insights?

There’s a lot of confusion with the increasing ‘voice work’ that is going on – what is happening with all the voice that is being gathered? Some professionals produce fancy ‘you said – we did’ tables which often just mask inaction. In some local areas peer support is popular but largely used as a means to promote self-management so people can be discharged better. And at the earliest possible point disabled people then have their ‘patient activation’ measured: “great, you smile more – tick – off you go!” Essentially, this approach builds on people as change targets: something is done to people who are seen as inflexible when compared to dynamic professionals. Even if any such action may lead to good (health) outcomes in the short term, this applies to individuals only and there would be no aim for co-production to improve whole systems with disabled people acting as change agents or sponsors.

We’ve found lots of ways to help professionals and providers ‘let go’ of ‘their’ service users and move towards genuine co-production – if system partners such as local CCGs and Adult Social Care departments, NHS England, Department of Health and Public Health England support us. Staff training (on the NHS Constitution or even on patients’ journeys) could be delivered by patients. Disabled people could lead on new, refreshed pathways and promote them to the wider local public – such creative swapping of roles and breaking down boundaries would make NHS Citizen the tangible social movement that it claims to be. A ‘right to peer support’ at diagnosis and crisis points would change the landscape of services and support immediately. We’ve also developed models to support providers to help service users kick-start their own user-led organisations (ULOs) with a role in quality-checking for example – or in the case of housing providers, a ULO’s role could be that of a handyperson’s service to repair and maintain the buildings people live in themselves.

Disability Rights UK pushing user-driven commissioning in several sites

At the heart of all this is our programme on user-driven commissioning which we started in 2012 and for which we now establish new project sites – we are very happy that we will be able to use an ESRC grant (through partnering with the University of Bristol) to study the impact disabled people can have on NHS and social care systems and processes.

User-driven commissioning is a tried and tested approach to support, gather and translate lived experience of people’s pathways into experience and outcome measures for contracting. A previous example related to the co-procurement of a five-year Children and Adolescents Mental Health Services (CAMHS contract.

Typically, the development stage for user-driven commissioning starts with an upfront commitment by the commissioner, eg making 20% the defined stake for a new Lived Experience group to exercise in a forthcoming procurement round. We then bring together a group of local disabled people/patients with lived experience of a certain care area or also across care areas, eg Personal Health Budget Holders in the context of the Integrated Personal Commissioning programme. With a range of games and team-building exercises, the lived experience group will be facilitated to open up to each other and explore and share life stories. People will then move on to map out risk and protective factors in feeling good about themselves. They will then go on to explore the range of existing services and support – also taking into account and building on what their peers may have fed back in the past. After that people will set out a vision of what a landscape of ideal services and support would look like. Depending on the purpose agreed with the statutory body beforehand, the group will then take a more specific focus, eg on experience and outcome measures (to be translated into metrics) or co-procurement as a distinct stage in the commissioning cycle.

The project sites will come to an end once a tangible impact has been achieved. This can take the form of a refreshed service specification with clear indicators written into provider contracts and informing new payment profiles. The impact can also be a whole new landscape of services and support after a fully-fledged procurement exercise, steered by the lived experience group exercising a defined stake of say 20% in the decision-making on the winning bidder(s), following defined ITT questions put to them.

A think piece about micro analysis of interaction AND co-production. Can it work?

‘Getting Things Changed’ is the short title for our current ESRC research project, which is essentially about social practices, how they may be disabling or excluding to disabled people, and how they can be changed. The whole project is co-produced with disabled people, and our fourth Ideas Workshop in this study was held at the end of September this year, led by Disability Rights UK (a partner in this project).  This got us thinking further about co-production and what it really means for our project. Here are some reflections about why co-production might be an important and innovative ingredient at the ‘micro’ level of change. We are writing in order to get some debate going – to see what others might think about these ideas, both from within the discipline of Conversation Analysis, but also from other parts of our project and beyond.

Our project about ‘Getting Things Changed’ is both with and for disabled people. That means we want co-production and disabled people’s voices to be present in the research, but it also means that we are interested in the effects that disabled people themselves can have in instigating changes in social practices. At the micro level, one ‘end’ of our spectrum of approaches is about the interactions that happen on an everyday basis, the human communications in which we all engage. We are planning to take a close look at some of the conversations that happen between support workers and people with dementia, and also those between young people with learning disabilities and their PAs, and we will be utilising the tools and insights of conversation analysis to help us unpick what is happening. So, first of all, what has conversation got to do with co-production and change?

Conversation Analysis (CA) is a thriving, academic and insightful discipline with a growing body of knowledge about the structures of social action, and we have some eminent scholars in the field to help us in our work, Charles Antaki and Celia Kitzinger.

CA has and still is discovering more about the basic structures of human interaction, the way conversations work – for instance turn-taking rules, the devices people have for hedging in a conversation, the ways questions and answers are interpreted. All this and much more is the basic stuff of CA. However, all along there has been a parallel and very large branch of CA which is commonly referred to as ‘Institutional CA’, looking at particular social practices that happen for instance in doctors’ surgeries, telephone conversations with helplines, classroom talk and so on. Nearly always, these institutional situations involve one ‘professional’ participant and a layperson – the person who may be receiving the service, the learner, the person being helped. Social practices at this level are things done in and through talk. Applying CA in these contexts can help us understand for instance how doctors routinely elicit information and offer advice to patients, or how support workers discuss activities with disabled people they are assisting. All of this is brought alive by the understandings we have of the basic structures of conversation – for instance, that questions not only elicit answers, but that they set the agenda, and determine the subsequent flow of the conversation.

It turns out that the asymmetries and inequalities in these ‘institutional’ conversations can be described and analysed, using the basic tools of CA. For instance, not only does the doctor ask the questions, but in some ways, he or she is enacting and occupying a position of power in doing their ordinary job. What does all this have to do with understanding how to change things?  Having carried out a detailed analysis of what is actually said or done, this knowledge can and is sometimes used to help people make changes to their practices. Charles Antaki and Celia Kitzinger, for instance, have both used their findings in this way, and so have many others. We looked at the creative work done by Liz Stokoe (http://www.carmtraining.org/) when discussing this approach in our second workshop.  This is the territory of ethical, engaged CA, and increasingly it has a place in the conferences and in the pages of academic journals and books. For instance, CA has helped us to see how audiologists can introduce the topic of hearing aids with their patients, and can use more effective strategies to persuade patients with hearing loss to use their hearing aids. Closer to home, one of our colleagues in Bristol analysed how fathers can be most successfully recruited to parenting courses. And all this knowledge may be taken into the field – i.e. applied and explored by those who can make changes in their own practices, the social care or health practitioners in these cases.

Now for the new and upcoming questions for ‘Getting Things Changed’, and particularly for the first strand of the research, where Sandra Dowling is leading the work with young people with learning disabilities. Of course, all the above is rich and challenging for us, and will engage us in collecting and exploring video data about what happens when a young person with learning disabilities starts to engage with personal assistants. However, we are aware that the type of conversation that happens in these circumstances can all too easily be dominated by the personal assistant, by the professional – and that disabled people can become sidelined or compartmentalized into positions which are less than powerful. We have seen this in much of our other work in this field, where disabled people regularly run their lives on the terms set by support staff, rather than exercising their own choice and control. Why is this?  Is there something intrinsically unequal in a conversation between a support worker and a disabled person? And may this be about power, shaped up and repackaged every time people engage with each other?

We know that support workers and personal assistants do not want it to be this way! And neither of course do young people with learning disabilities, as they take the first steps into adulthood.  Therefore, we want to be able to use our analysis not just for academic insights, but in order to make changes on the terms of  the young people themselves. It occurs to us that previous interventions using CA have mostly been about professional practices, whereas we want to engage with young people themselves, as well as their PAs, to find out what matters to them – and to help tilt the power imbalance back towards a more level and equalising conversational style. Easier said than done, of course!  But to help us in this, Sandra is recruiting some advice and active assistance from a disabled people’s drama group, The Misfits http://misfitstheatre.com/. These actors with learning disabilities draw on their own experience to literally act out and explore the way interaction works, and so they are well placed to advise us and to help us analyse and interpret our data. Through drama, we hope to be able to reflect on our findings, to take back our thoughts to our participants, and thus to see whether conversations can become literally more ‘co-produced’, both by the disabled person and by their personal assistant.

We’d love to hear from others in the project, or beyond, about the problems we might face. Others may well have adopted similar approaches, and we no doubt will meet criticisms which can help us ensure that we shape up our project in a robust way. However, right now, we are very excited by the entrance of The Misfits into the first strand of our research, and will look forward to working with them – as well as our future participants in this project.

Co-production and change for disabled people

Val Williams discusses research around support for disabled people.

Social practices can be enabling or disabling

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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/wpcontent/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.

What is co-production?   The clue is in the name – it means working together to jointly produce something.

coproductionforchange

Lorraine: One of our aims in hosting this blog is to take a ‘warts and all’ approach to discussions. In order to do this one of the things we need to do is to take an objective look at the challenges faced by those trying to adopt coproduction – this week’s blog fits the bill perfectly and we look forward to a lively debate!

Dr Jenny Morris has written many books about both feminism and disability. Prior to retiring in 2010 she worked on disability policy for 25 years, including leading the Labour government’s Independent Living Strategy and working on the Right to Control. She writes a blog at jennymorrisnet.blogspot.co.uk. Here is her blog on co-production.IMG_0283

Most initiatives which use the term in the context of health and social care in the UK are not co-producing anything. But here’s an example from 1996, in fact before the term was adopted…

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Project Job Vacancies – Research Assistant x2, Research Associate x2

Norah Fry Research Centre (University of Bristol) and Disability Rights UK (DRUK) are seeking four researchers to fill part-time posts in a large three-year disability study funded by the ESRC. The project is led by Norah Fry Research Centre and is in partnership with (DRUK), whose office base is in London. The project is about understanding and changing practices that pose barriers to disabled people across the UK, and the research assistants and associates are required to join the empirical strands of the research, where they will play key roles in the project. Each of the posts has its own job description, and the strands cover Conversation Analysis (collecting video data); narrative data; Health-related audits of reasonable adjustments; policy and document analysis, and analysis of user-driven change. All of the successful candidates will be supported by a research strand leader, and will have overall supervision by the PI (Val Williams).

Research Assistant  x 2

Research Associate x 2

Getting Things Changed: Workshops

We are starting off our project by holding workshops about different theories relating to ‘change’, in order to tackle some of the well-known barriers faced by disabled people.

We want to dig down to the level of practice, recognising that top-down policies do not always work, when social practices are entrenched.

Workshop 1 Social Practice Theory

Our first workshop was held on April 27th 2015 – Dr. Stanley Blue helped us to look at Elizabeth Shove’s Social Practice Theory, and what that might mean for the practices involving disabled people. You can follow some of the things we discussed by reading the first post Understanding How Change Happens.

Workshops 2 and 3 are being held at the end of June 2015

Professors Charles Antaki and Celia Kitzinger are leading Workshop 2, which will be called ‘What’s Going on Here?’. We will look at how a micro-analysis of interaction can be taken into practice, and what that might mean for making changes in how things are done.

Professor Andrew Sturdy and Helen Ballard are leading Workshop 3, which is entitled ‘Power and Resistance’. We will be looking at some broader ideas about how change happens, both at the organisational and the individual level.

Widening the Conversation

We are planning to take this conversation wider, especially by holding discussions with disabled people’s groups and other interested parties. If you want to join in, please comment on these posts.