In this Special Report, Alex O’Neil reflects on some fundamental questions about the future of social care. He uses the extensive work that the Joseph Rowntree Foundation (JRF) has undertaken to look particularly at the lessons we have learned about effective participation, and the involvement of people who use services – and the continuing power imbalances that seem so difficult to shift.
This is a remarkable Special Report in that, although the narrative is relatively brief, there are direct links to a very wide range of the JRF work that lies behind the policy and practice issues discussed. This means that CareKnowledge readers have single-point access to a key resource-set on a topic that lies at the heart of the debate about the kind of social care system we want for the future.
Furthermore, the annexe to the report provides a full reference listing (and links to) all of JRF’s extensive work on person-centred social care, effectively creating a topic-based library of the Foundation’s resources.
Alex O’Neil was Principal Research Manager at JRF in Social Care, Disability, Independent Living and Unheard Voices programme areas (1995 – 2011) and consultant in these areas (2012 - 2014). Prior to that he worked in local government Policy & Research Units (1986-1995), managing one of these between 1990 and 1995. He has worked on the overlaps between policy, practice and research since 1980.
Public Services, Deficit Reduction and User Involvement -
Now (2014) and Then (1995)
“Quality!? We’ll think about ‘quality’ once we get the resources to deliver it”
(conference quote from social worker, 1998)
This is a short presentation drawing on a 2013 programme “Change In Action” (CIA) from Joseph Rowntree Foundation, Over 10-20 years we had seen different strands of “involvement” in different JRF programmes – with older people, people in poverty, migrants, disabled people, Black & Minority Ethnic communities. There were shared and different experiences but also frustrations that, despite all the rhetoric, it wasn’t easy to bring about credible change. Nationally, participation often seemed fake.
The CIA programme was designed to examine the concept of involvement in more detail and explore why change was so difficult to achieve. The programme was directed throughout by people with life experiences from different identities, It was a mixture of Action Learning Set, work with six local organisations about Power Analysis, some more open-ended discussions around 1) isolation, 2) the context of migration, 3) life chances. There were elements of story-telling and film-making with a range of local groups. [ 1 ]
The aim of the programme was to see what might be needed to bring about change and shifts in power and involvement. And, if that was not possible, would we at least be able to say some things about what doesn’t work?
The programme started in 2008 before the “Age of Austerity” and finished bang in the middle of Deficit Reduction in 2013. At the start of the programme we were frustrated that, despite increased rhetorical ownership and resource commitments, we weren’t seeing the breakthrough in change. By the end of the programme, even the existing rhetoric and resources had become more problematic.
This note is about how this relates to the Social Care system (though the programme goes beyond this). I’m also drawing on a much larger body of JRF evidence (specific to the Social Care system) going back 20+ years … ideas of participation, user involvement and the need to reshape care and support for people who need and use services.
At the core of this presentation are two fundamental statements, both of which are (I think) true, but sometimes vested interests and agendas only focus on one.
Then [ 2 ] and Now [ 3 ], there are insufficient resources in the social care and welfare system to deliver on the needs of an ageing society, and on ideas of independent living for disabled people and the expectations of a wider range of people who need or use services. We really must stop promoting the mantra of “We Need to Do More with Less.” That’s always been used as a cover for cuts.
Then [ 4 ] and Now [ 5 ], the social care system (whatever we mean by that) was and remains beset by power imbalances and despite “modernisations” still often reverts to an old style and paternalistic welfare model. It still struggles to be fit for purpose.
There have been many false dawns about reorganising and reforming social care and related systems. I’m not proposing to add to this. We can, however, build from the bottom up with expectations to make this system better with what we’ve got in 2014 and the values that would shape a better system beyond that. What follows is a series of messages for policy makers, managers, people working in practice, service users and society as a whole.
3. WHAT CAN BE DONE? WHAT CAN WE DO?
The “we” is complicated. The reason I use “we” rather than “them” is that we can always blame them. Them, them, they did it; it’s their fault (politicians, society leaders, managers, workers, service users, older people, disabled people). In the Real World, they should do something different, they need to change their attitudes. It’s not us, it’s them.
Here are some ideas, thoughts and practical learning from experience in JRF programmes about what might help make a difference. They’re just some examples that come to mind.
a) Some messages for Practice and Managers
- Even in a system with insufficient resources, with the problems in the social care system, Then and Now, there are examples of People Doing It For Themselves, sometimes in enclaves of good practice, sometimes against the odds. Workers and managers working with users … and with high ideals. [ 6 ], [ 7 ] [ 8 ], [ 9 ], [ 10 ]
- Power is important. In 2014 we are faced with Deficit Reduction. Previously the context was about Personalisation (2008), World Class Commissioning (2007), the Modernisation Agenda (1998) or Direct Payments (1996). The context or language has changed but Power Analysis has proved to be a helpful approach to discover the positive and tackle the negative [ 11 ], [ 12 ]
- Whether it’s co-production, participation, empowerment or notions of Independent Living, there are good ideas, standards and stories on truthful user and community involvement in policy, practice, planning and research [ 13 ], [ 14 ], [ 15 ], [ 16 ],
- In using people’s own stories, there are some home truths about what might be important in the lives of users or communities. If service users are fully in control of the story and the editorial, what will they tell us? [ 17 ]
- As practitioners we too have a story to tell. [ 18 ] None of this provides a formula or a tool-kit, but the materials might add to your own ideas of what might be possible, if we were to start building from our own practice up, rather than the top down
If you have time to read it, an accompanying Annex gives more detailed examples of involving users and communities in programmes.
b) Some thoughts for Service Users and User-led Organisations
During this period, it has sometimes seemed that the most important thing that we can do is to remember what we have learned.
Here are some examples of the development of User Knowledge over the past decade or so, including some negatives about what we don’t mean but also many positives about what we do. [ 19 ], [ 20 ], [ 21 ]. There’s a lot more on this, in the Annex.
c) Some thoughts for Leaders (in Policy, Practice and Society)
The language of Deficit Reduction and Age of Austerity has been with us for some time and will continue to shape diminishing ambitions and low expectations of what we can now expect from each other and from services. Welfare has become a burden. The language of the Poor Law has become acceptable again.
But hang on.
- It’s 1948. The economy is on its knees, Lend Lease will dominate public finances for decades to come, housing is in crisis, cities are still in rubble after the Blitz, there’s rationing, infrastructure is basic at best. Was this really the time to consider a National Health Service and a Welfare State? Well, actually, yes, it was. Leaders were able to bring society along on this venture. And that was a real Age of Austerity.
- It’s 2014 and the rhetoric is hostile, mean-spirited to such a vision for public service, leadership is muted at best, the resources in the system are still not enough to meet need … but the resources currently in the system would also amaze the world of 1948. The personal and consumerist wealth on display begs the question about austerity. Whose austerity?
It has often seemed, in the past decade especially, that there has been a failure of leadership (Policy, Practice, Societal). Current leaders may talk about the NHS being “safe in our hands” but it’s hard to see any now who would have had the nerve or vision to have led us there in the first place. Instead, the language of the debate has become mean. “I’m Alright, Jack.”
What is needed is a strong Societal and Service vision about public service and public services. This is as important in bad times as well as good.
4. AND FINALLY
An older woman in one of our programmes said “A lot has changed AROUND us.” Despite all the changes, the deeper issues and frustrations remain remarkably the same.
- It may be that what we have to say about how things might be improved, particularly to strengthen the real influence of users and communities, is “old hat” for you. If so, it would be great to hear from you and to learn from you.
- It may be that you’ve tried to create a more positive and empowering vision (in your service, locality or more broadly) and not really been able to get past difficult obstacles. Again, what would you (maybe in confidence) want to share with like-minded groups about these difficulties?
- It may be there’s an important piece of the story still missing. What would that be?
- Maybe there are elements of the presentation you agree with and others you don’t.
- It may be that the attached materials can help to stimulate a different kind of conversation in your area. What do you think?
Perhaps we’ve all had enough of toolkits and pilot projects on involvement, so the intention here isn’t to be cynical or to make people feel bad. You are Expert Witnesses within the system; what do you think it would take to shift power and involvement?
I’d love to hear from you.
Alex O’Neil - firstname.lastname@example.org
Discuss this Special Report on the CareKnowledge Forum here.
Public Services, Deficit Reduction and User Involvement -
Now (2014) and Then (1995)
Annexe : wider JRF and other references
Starting a conversation within social care.
If there’s one conversation to be had from all of this evidence with social care policy and practice, it comes from these very short Briefing Papers.
Below is a former insider dip into the JRF evidence – Then (1995) and Now (2013/4) – and is only a small part of JRF and wider societal knowledge and evidence.
The themes all overlap. All projects talk about Problems and Solutions. If you’re a societal leader, the knowledge of service users is still crucial for you. So, the issues for service users, societal leaders and policy/practice inevitably overlap. Should … should.
The purpose isn’t to provide a comprehensive review. And there are sources other than JRF.   Rather it’s to put enough meaning into themes to show that, Then and Now, this is what people mean, these are the persistent issues, this is what can work. “Now” is not so different from “Then”. You will never truly have robust solutions until you talk to, work alongside and share power – real power – with the people.
The Evidence That There's a Problem
There are insufficient resources
- 1996 Charging Policies and rationing services 
- 1996 Costs of Continuing Care 
- 2007 Unmet Need – defined by older people not by policy 
- 2010 Paying for Long Term care 
- 2010 Service user views on the funding of social care 
The Poor Law still shapes our present welfare. And there are other societal barriers.
- 1995 I’m not complaining but … 
- 1995 The experiences of disabled women 
- 1997 User Involvement in Voluntary Organisations 
- 1998 Challenging the system to support 
- 2002 Advocacy and BME Mental Health 
- 2004 Ethnicity and exclusion 
- 2004 One town for my Body another for my Mind 
- 2009 Residential care – problematic routes & models 
- 2020 Commissioners struggle with real involvement 
- 2011 The Standards We Expect? 
- 2013 Need to be honest about power 
Useful Knowledge … People Finding their Own Solutions
Policy and practice - despite all of the above there are still good things that can be done, that are being done.
- 1995 Care Management from Anti-Racist perspective 
- 1998 Support for People with Brain Injury 
- 2000 Implementing Direct Payments 
- 2000 Direct Payments, local study 
- 2001 Involving people with dementia 
- 2002 People with learning difficulties recruiting staff 
- 2004 Direct Payments & Older People 
- 2005 Making Change Happen for BME Disabled People 
- 2006 Palliative Social Care – Vision & Practicalities 
- 2006 Workers & Person-centred support 
- 2008 Person-centred support, what users & workers say 
- 2010 Personal Budgets and Rough Sleepers 
- 2011 Homeless People’s Commission 
- 2011 Involving Older People in Commissioning 
- 2011 That Bit of Help – In Bad times as well as Good 
- 2013 Power and Making Change Happen  
Service User knowledge is fundamental : it should be the system building block, not a cosmetic extra; user outcomes will and should be different; there are many different voices agreeing on similar principles. But there is still a democratic deficit. Let’s not lose this knowledge!
- 1998 Deafness & Ethnicity 
- 2000 Involving Older People 
- 2002 Young disabled people’s transition into adult 
- 2002 Older women, older men & abuse  
- 2002 Black families and Young Carers 
- 2003 Older People’s own definitions of health 
- 2003 What are User Defined Outcomes? 
- 2003 Disabled Adults as Parents 
- 2003 Disabled People in the Workplace 
- 2004 Black Older People and Research 
- 2004 Peer support for people with learning difficulties 
- 2005 User Involvement In Research 
- 2006 Older People and That Bit of Help  
- 2006 Supporting Service User Knowledge 
- 2007 Learning Difficulty, Our Lives, Our Communities 
- 2007 Chinese Older People expectations, commitments 
- 2010 Social Model of Madness & Distress 
- 2011 The Standards We Expect 
- 2013 Who has the power in your care setup? 
- 2013 Ethnicity, mental health & learning difficulties. 
- 2013 Involvement – beyond the toolkit 
Societal Leaders. Where is the visionary analysis? Where is the principled leadership?
- 1997 The Future of Social and Personal Care  
- 2003 Our Voice In Our Future 
- 2004 Older People on Policy, Planning & Practice 
- 2006 The Older People’s Inquiry 
- 2011 Transforming Social Care   
- 2011 Rethinking Disability Policy 
- 2013 Identity, Leadership & Power. It’s not business, it’s personal 
Discuss this Special Report on the CareKnowledge Forum here.