#peoplepoweredhealth: how to make it stick – in one minute

As promised, here are my reflections on “how to make #peoplepoweredhealth stick”, which I shared at Nesta’s People Powered Health event. For context, I was given one minute and was speaking alongside some terrific speakers, so decided to offer a particular angle on what I thought might work…

  • There are limits to progress that can be made through hard levers, like policy, regulations, guidance, draft contracts
  • Policy makers, commissioners providers, practitioners – i.e. people – are rarely motivated by efficiencies and technical
  • They are motivated by good relationships, happiness, positive contact, seeing the difference they make, feeling like they are good at what they do
  • My reflection on making people powered health stick is to support people to come together as people, rather than in the roles they have, so that they can directly and personally experience what it is that motivates people
  • Part of making it stick is trying to move beyond our protective labels and roles, and emphasizing our common human bond.

 

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Public services: only a means to living full and active lives

GYA

I’m involved with the Get Yourself Active campaign and recently wrote a blogpost for it, which is reproduced below. There’s also a fantastic post by Anne Beales of Together UK (on small steps and grand plans) and from Leanne Wightman (who is doing a great job of running the whole project) on the opportunity of Get Yourself Active. You can follow Get Yourself Active via @GetYrselfActive

There were some headlines recently about how people were using their Personal Health Budgets. Concerns were raised about whether items like games consoles, a summer house and satnavs were the best use of public money, with the inevitable calls for resources instead to be focused on traditional ways of doing things – beds, staff, medical equipment.

A positive aspect of the debate was it provided an opportunity for people who have Personal Health Budgets and the professionals who support them to explain why they’re so important in meeting their care and support needs. Kevin Shergold, for example, highlighted:

The PHB has given us freedom to live our lives as we choose – in a way that’s sensible and cost effective. Developing a severe disability might seem hopeless, but I want people to know that it’s possible to live a good, full, interesting life when you have the right support and choice.

This gets to what I think is a vital but often unasked question: what is the point of public services and so the money that funds them?

The vast majority of people with lived experience and who have used care and support services say that they want a life, not a service. Their focus isn’t on getting a few more hours of home care here or seeing an occupational therapist there; it’s about living as full and enriching a life as possible.

Norman Kirk – a New Zealand Prime Minister in the 1970s – described it this way:

People don’t want much. They just want someone to love, somewhere to live, somewhere to work and something to hope for.

He could well have added “something to do”, because wanting to be physically active or play sport is often reported by all people, including disabled people, as a key source of general wellbeing.

The point of public services and the money that funds them, therefore, covers being a means to support wellbeing and achieve what people want to do in their lives – including being active and playing sport. We have already heard from a number of people through the Get Yourself Active project that using their personal budget in this way has changed things for the better.

This means there are three main reasons why I feel Get Yourself Active is such an important contribution:

  1.  It helps to support people who use care and support services and the professionals who work in them to recognise the value of physical activity and sport
  2.  It provides a much-needed wider focus on how Personal Budgets can be used to directly support such activity, and not just focus on traditional ways of meeting people’s needs
  3. And, by the way, it helps councils and their partners meet the general wellbeing requirements of the Care Act.

If this leads to more stories about how Personal Budgets are being used to fund exercise classes, gym memberships or being involved sporting activity, I for one won’t be disappointed. It will mean that public services are doing their job well.

 

Commissioning

IPCMy current work is on the Integrated Personal Commissioning (IPC) programme, working for Think Local Act Personal and closely with NHS England.

A natural question to ask is “What’s that?”, and it’s a very good question.

Before answering that, though, I think there are questions we should ask before, such as:

  • “What do we mean by ‘integrated’, ‘personal’ and ‘commissioning’?”
  • “What difference do each make?”

This is the third of three posts looking at each topic individually (see the introduction to this short series and the posts on ‘integrated’ and ‘personal’). It’s a very quick way into the issue of commissioning, sharing information that I’ve found useful in my own learning. It’s not intended in any way to be comprehensive! Thus, if there are things you think should be added feel free to do so in the comments or on Twitter. I’ll update the posts accordingly.

What do we mean by ‘commissioning’?

Put bluntly, the core role of commissioners has been to buy services for their populations, although it has always been more than this.

This is from Health Select Committee’s report on Commissioning in the NHS (pdf) – a report which notes (rightly) that the vast majority of the public don’t know what commissioning is despite its central importance to the running of health and social care.
Commissioning models in the NHSThere are endless reports, chapters and even books on the topic of commissioning. Below, therefore, is a very brief summary of some of the key developments in commissioning relevant to health and social care.

Commissioning in the NHS began in earnest with the ‘purchaser-provider’ split of 1991 and has
been maintained since then (though in various guises – see Box 1 to the right). The “more” than buying services for populations that commissioning is has best been captured by the commissioning cycle. There are hundreds of versions of the commissioning cycle, but each is essentially a variation of the following:

IPC_commissioning_cycleAs with integration, commissioning can happen at a variety of different levels. This is most obvious in health:

Commissioning levelsCommissioning in social care also emerged at the same time as the purchaser-provider split in the NHS. It took a slightly different form, however, with more emphasis put on the role of care management – where social workers were central to assessing need, arranging packages of care and managing and negotiating resources. This new approach was reflected in the Caring for People White Paper (1989).

Commissioning has come a long way since then, at least in the number of commissioners. The Barker Commission highlighted particular the problem of increasing fragmentation of commissioning responsibilities between different organisations within the NHS and local government – estimating there to be over 400 organisations with responsibility for commissioning. The main response to this has been “joint” or “integrated” commissioning across health and social care.

The development of personalisation in adult social care was a focus of attention in commissioning, especially focusing on the role of market shaping, market facilitation and market development. This was a new role for local government, best captured in the work of the National Market Development Forum (pdf).

Finally, an alternative to top-down commissioning is bottom-up commissioning, or more nicely what we might call people- or community-led commissioning. At the individual level this is essentially what Direct Payments are (and what we are seeing in the extension to Personal Health Budgets; see the post on Personal for more information on what this is and its effects). At a collective level it is best represented by the idea of co-production in commissioning or people-powered health.

(It’s worth noting that relatively little attention has been paid to decommissioning. Two honourable exceptions are this paper from IPC (pdf) and this decommissioning toolkit from the National Audit Office.)

Here is a selection of what I’ve found to be the most useful documents on commissioning:

What difference does commissioning make?

[It is] clear that there are few examples of robust evaluations of commissioning in the academic literature. Moreover, the grey and practitioner literature tends to focus on commissioning in single government departments, local initiatives or single services/client groups. It has been noted that the efficiency, effectiveness and efficacy of commissioning and strategic commissioning is typically taken for granted rather than demonstrated… The evidence base on the outcomes of commissioning remains under-developed and such evidence as exists is equivocal – Williams et al. (pdf)

Asking whether commissioning makes a difference is a very interesting question. One of the issues with it is knowing exactly whether what is happening in practice is actually good commissioning. Mark Britnell, who led the development of World Class Commissioning within the NHS, commented:

It might strike you as slightly odd—it did me coming into the department—that no-one had defined what good commissioning was in 20 or 30 years. (para 137) (pdf)

Having thus defined what good commissioning looked like, an assurance framework to quantify how good commissioners were showed that most commissioning wasn’t very good: in only one of ten competencies did people achieve better than half marks in their ranking:

Source: King's Fund
Source: King’s Fund (pdf)

If knowing what was happening in practice was actually commissioning was one problem, the other major issue was in understanding the difference commissioning makes is. The main issue here was the lack of a counterfactual: if commissioning is the only option, there’s nothing to compare it against.

Against this backdrop, we therefore shouldn’t be surprised to read that nearly all flavours of commissioning attempted in the NHS have not had much impact against a variety of themes, including efficiency, equity, changing patterns of service delivery, quality and partnership working.

The best of what we do have is therefore as follows:

Overall the research suggests that examples of fully integrated commissioning are limited, and that this approach is typically confined to a small number of service areas. It follows that research into the nature and, in particular, the effectiveness of joint commissioning is also relatively limited… The evidence that is available suggests that the nature and success of integrated commissioning arrangements varies significantly between local areas and between services.

Commissioning evidence of impact

In social care there is a similar issue. Only recently has the University of Birmingham attempted to create a comprehensive framework of what good commissioning in social care is. Even then, there is no requirement to use this framework or measure commissioner performance against it. Much of what we know about the effectiveness of commissioning in social care comes from the literature mentioned above.

People-led commissioning is an emerging area; as such, the literature is nowhere as well developed. There are some bits of evidence, however, most notably the findings of the People-Powered Health initiative (pdf). Other evidence is available from particular sites, such as work in the Isle of Wight done by the Health Foundation.

Personal

IPC

My current work is on the Integrated Personal Commissioning (IPC) programme, working for Think Local Act Personal and closely with NHS England.

A natural question to ask is “What’s that?”, and it’s a very good question.

Before answering that, though, I think there are questions we should ask before, such as:

  • “What do we mean by ‘integrated’, ‘personal’ and ‘commissioning’?”
  • “What difference do each make?”

This is the second of three posts looking at each topic individually (see the introduction to this short series). It’s a very quick way into the issue of what we might mean by ‘personal’, sharing information that I’ve found useful in my own learning. It’s not intended in any way to be comprehensive! Thus, if there are things you think should be added feel free to do so in the comments or on Twitter. I’ll update the posts accordingly.

What do we mean by ‘personal’?

The last 15 years have seen a shift towards more responsive, personal public services. Adult social care has been at the forefront of this shift, with policy areas such as health acknowledging and adopting the difference that social care has seen as a result.

I’d suggest a ‘personal’ approach to health and social care broadly encompasses two interconnected, perhaps even indistinguishable areas: personalisation and person-centred approaches.

Peronalisation quadrantsThe landmark policy statement for personalisation was the Putting People First Concordat of 2007 (pdf). In this we see the key principles of a personalised approach: “Replacing paternalistic, reactive care of variable quality with [a] focus on prevention, early intervention, and high quality personally tailored services… [where] people have maximum choice, control and power… People who use social care services and their families will increasingly shape and commission their own services” (p.2). The Care Act (2014) has since embedded many of these principles in legislation (see also the “policy and legislation” box here (pdf) (p.4)).

The second chapter of the Five Year Forward View is explicit about preventative, person-centred, empowering approaches in health. This itself builds on Domain 2 of the NHS Outcomes Framework which focuses on enhancing the quality of life for people with long-term health conditions through personalised care and support planning. Bothe the 5YFV and Domain 2 of the NHS Outcomes Framework are why we see such a focus on person-centred approaches in the Vanguards/New Models of Care support offer, whose Chapter 4 shares what that key programme will do to empower people and communities through, for example, person-centred care and support, and services created in partnership with people and communities (pp.18-19) (pdf).

Because personalisation and person-centred approaches have been around and developed over the last 15 years in particular there is no shortage of information about them. There are, I think, four sources that provide the best introduction to personalisation and person-centred approaches:

  1. Getting Serious About Personalisation in the NHS (pdf) – written for those who are working in health and care organisations that will need to change systems and practices to deliver personalised, integrated care and support
  2. Think Local Act Personal’s personalised care and support planning tool – This includes a section that usefully defines what personalised care and support planning is, its origins, its values and principles, related behaviours and beliefs of professionals and what personalised care and support planning looks like in health and care settings
  3. The Collaboration for Coordinated Care (C4CC) provides useful links to some of the best person-centred resources around
  4. The Health Foundation has a subsite focused on person-centred care, with a wide range of resources exploring this vast topic. This incorporates the link to key areas of person-centred approaches such as shared decision making and self-management

What difference does ‘personal’ make?

Like integration there is no shortage of evidence regarding personalisation and person-centred approaches. Here’s the evidence that I’ve personally found most useful.

  • The Individual Budgets evaluation – the first significant, robust study on the difference that personalisation makes – especially through the mechanism of Direct Payments / Personal Budgets (SPRU, 2008)
  • A partnership of In Control and Lancaster University has published three Personalisation Outcomes Evaluation Tool (POET) survey findings. These surveys explore the difference Personal Budgets have made to people with them and their carers, as well as their experience of the process. Findings are available for 2011 (pdf), 2013 (pdf) and 2014 (pdf)
  • HSCIC’s annual adult social care survey includes comparisons of the experiences of people on Direct Payments or Personal Budgets compared to other forms of social care support. The latest data available is for 2013/14 (pdf) (and see, for example, Figure 2.8 on page 53 – reproduced below)
  • ASC satisfactionThe Social Care Elf and Mental Elf have usefully summarised some key studies on the effects of personalisation and Personal Budgets for key user groups: for older people, for people with mental health problems, and for carers
  • A significant formal evaluation of Personal Health Budgets (pdf) was published by PSSRU in 2012
  • Building on their surveys for adult social care, In Control and Lancaster University have also produced three POET surveys capturing the difference Personal Health Budget have made to their holders and their carers, as well as their experience of the process: 2013 (pdf), 2014 (pdf), 2015 (pdf)

There is equally significant evidence on the topic of self-management and shared decision making (often called “patient activiation”). National Voices has produced a summary of systematic reviews on the topics of self-management (pdf) and shared decision-making (pdf). Similarly, the Health Foundation has pulled out its take on the best reviews of existing evidence. Finally, NIHR has a synthesis on the evidence available on interventions that support self-management of long-term conditions.

Integrated

IPCMy current work is on the Integrated Personal Commissioning (IPC) programme, working for Think Local Act Personal and closely with NHS England.

A natural question to ask is “What’s that?”, and it’s a very good question.

Before answering that, though, I think there are questions we should ask before, such as:

  • “What do we mean by ‘integrated’, ‘personal’ and ‘commissioning’?”
  • “What difference do each make?”

This is the first of three posts looking at each topic individually (see the introduction to this short series). It’s a very quick way into the issue of integration, sharing information that I’ve found useful in my own learning. It’s not intended in any way to be comprehensive! Thus, if there are things you think should be added feel free to do so in the comments or on Twitter. I’ll update the posts accordingly.

What do we mean by ‘integration’?

It’s perhaps easier to ask the question: “Integration between what?” because there is no one type of integration. Integration could mean:

  • Across sectors (e.g. health and social care; health, care and education; health, care and housing etc.)
  • Within one sector (e.g. between mental health and physical health)
  • Across different levels (e.g. prevention, early intervention, primary, community, secondary and tertiary health services)
  • Across providers
  • At parts of a process (e.g. single assessment or review).

There is also a question of the extent to which integration happens. So, for example, it’s possible to link things together, co-ordinate things or fully integrate them (see page 15 here (pdf)). Finally, there’s the option of whether integration is “real” (i.e. mergers between organisations or physical assets, such as teams) or “virtual” (i.e. partnerships, alliances or other relationships between organisations).

Since integration can mean a whole host of things in practice, there are various “typologies of integration” that try and capture these. See, for example, Fulop’s typologies of integrated care (p.4) or a discussion of macro, meso and micro levels of integration (pdf). Thus, locating yourself in what type of ‘integration’ is being done is important in the first place.

Useful overviews of what integration is:

We most typically associate integration in the current context within integration across health and social care. A 2011 discussion paper from the King’s Fund that covers this topic quite comprehensively is here (pdf). A 2015 article on the same from Richard Humphries is here.

What difference does integration make?

You can fall into this rabbit hole and never emerge, so significant is the literature on the difference (or otherwise) that integration makes. It literally has its own journals (note: plural).

Even so, here are a few of what I’ve found to be the most useful bits of research on the difference integration makes:

Finally, from a policy point of view, it’s worth noting National Voices’ “Principles of Integrated Care” and the continuing Shared Commitment to Integrated Care.

Integrated. Personal. Commissioning.

IPCMy current work is on the Integrated Personal Commissioning (IPC) programme, working for Think Local Act Personal and very closely with NHS England.

A natural question to ask is “What’s that?”, and it’s a very good question.

Before answering that, though, I think there are questions we should ask before, such as:

  • “What do we mean by ‘integrated’, ‘personal’ and ‘commissioning’?”
  • “What difference do each make?”

Over the next couple of weeks I’m therefore going to write 3 posts on each of these topics, and for each I’m going to try and answer those questions.

Each post will be a very quick way into the issue, sharing information that I’ve found useful in my own learning. None will be in any way comprehensive! Thus, if there are things you’d like to add to each post or disagree with, feel free to do so in the comments or on Twitter. I’ll update the posts accordingly.

What can we learn from the Right to Control?

The Right to Control was a new rights-based approach to support and services for disabled people. It brought together a range of government funding streams across social care, housing and employment with a view to improving people’s experiences across these funding streams and, ultimately, improving people’s lives.

I write about it in the past tense because the Right to Control is no more. The pilot ran for two years from December 2009 with a further extension until the end of December 2012. A Ministerial decision in 2014, however, decided not to roll-out the Right to Control any further.

The decision was based in large part on the findings of a formal evaluation (pdf). This

did not find any evidence of the Right to Control having a positive impact on customers, either in terms of their experiences of applying for and organising support or services, or in terms of their day-to-day lives, including employment outcomes.

The evaluation notes, however, this lack of evidence is most likely due to the fact people did “not experience the intended Right to Control customer journey” and that the short space of time for which the pilots existed may not have been sufficient for the full effects of Right to Control to be felt.

What was unique about the Right to Control, compared to pilots regarding Individual Budgets (as were) and Personal Health Budgets (as are) was its attempt to unify – to integrate – funding streams around an individual. It was therefore similar to parts of what the Integrated Personal Commissioning programme is seeking to achieve.

The question is this: What can we learn from the Right to Control? From my reading of the evaluation, other documentation available around the Right to Control, and from conversations with colleagues who were heavily involved in several of the pilot areas, I would suggest eight (by no means comprehensive) things we can learn*.

1. Create demand from the bottom-up by building the understanding and expectations of people who could benefit from the change. There is no point having new rights or the potential for more choice and control if the people these are intended to benefit aren’t aware of them or equipped to expect them. This isn’t just limited to people who use services, either: carers and staff are also important to focus on. For example, employment support in a northern pilot area worked so well under the Right to Control because there were two Disability Employment Advisors who were looking for a way to change a system they saw every day wasn’t working for the people they supported. The Right to Control gave them a vehicle to change things.

2. To build meaningful demand, market development must start as soon as possible. The Right to Control evaluation notes the following specific conditions needed to be in place: (1) People were aware they could request changes; (2) People had information and advice to make confident choices; (3) People had meaningful choices. The first two are extensions of my first point. The third – meaningful choice – is facilitated by two vital, complementary process: (1) coordinated care and support planning, and (2) market development. I’ll deal with coordinated care and support planning in a separate post. On market development, the most important lesson from the Right to Control is that market development didn’t start soon enough. It takes time to start, (re)negotiate or end contracts and agreements with providers of all sizes, to inform and work with them of the types of changes anticipated, to keep people and staff up-to-date on changes to the local ‘market’, and all the other similar activities that make for successful market development. Start early on market development, and be proactive about it.

3. The third lesson is no surprise at all: change on this scale takes time. By “change” I mean both practical and cultural change. Practically, for example, it took around twelve months in most of the Right to Control pilot sites just to get the right people around the table and to start having the right kinds of conversations. Where most good progress was made was for people with mental health problems accessing employment support. The reason for this was because the then Community Mental Health Teams became the most common entry points into the Right to Control because of greater partnership working that had existing from before the Right to Control pilot started. Of course, change taking time is no great lesson, but it is one that bears repetition, especially when the current demands on public services in health and social care are so pronounced, and when numbers are seemingly the only way we can convince people of progress.

4. One of the biggest cultural barriers in the Right to Control is represented by the question: “Whose money is it anyway?” Reasonably often, local managers referred to budgets as “their money”, resulting in difficulties in pooling budgets or integrating them around individuals. It’s actually a very good question, and surfacing these types of questions and discussing them was seen to help progress towards the Right to Control’s aims.

5. User responses to the question of “whose money is it anyway?” are probably best captured by this paraphrase:

We don’t give a toss where the money comes from – we just want a life.

What enabled this voice to be heard was co-production of the Right to Control. Co-production itself was therefore a major driver in changing attitudes, which helped to create confidence, support and a shift in relationships and mindsets between “professionals” and “people”. (It’s worth noting the formal evaluation concluded co-production would last well beyond the life of the Right to Control pilots themselves – a point proven so far, writing from the distance of 18 months since the programme finished.)

The last three lessons from the Right to Control are strategic ones that should be cause for reflection at higher levels in local government, health bodies and central government.

6. The first is to recognise that funding streams need to be integrated locally because they are separated centrally, i.e. government is asking local areas to merge budgets that they themselves had split up in the first place. As a participant in the evaluation ruefully notes:

What we need to do is look at pooling budgets at a much higher strategic level. It’s very difficult to align funding streams once the money is allocated, if not impossible, so hence the focus on pooling budgets at a much higher level, to have the one-pot approach.

Anything that central agencies can do to integrate funding as soon as possible should be done is the lesson to take from this.

7. The second is to be consistent in the intentions and outcomes of the programme. The Right to Control started as a new legal right to support disabled people to have better lives; it ended (via the evaluation) with a decision that questioned its economic efficiency and impact on primarily social care measurements. What if the evaluation had captured stories from two sites about people with learning disabilities signing housing tenancies for the first time, or fifty people gaining employment because of direct control over funding they never knew was previously spent on them?

8. This links to the final lesson: the Right to Control didn’t connect politically at either a local or national level. The Right to Control squarely support two significant agendas that have existed since 2008 – prevailing attitudes to public services (the idea of empowered consumers) and the zeitgeist of austerity (more for less) – and yet remained unloved, to the point where it was ended and largely forgotten. Reflecting on why it didn’t connect and the roles that different people/organisations could have played in addressing is useful for any current or future change programme.

There are many other areas of learning that can be drawn from what the Right to Control did and didn’t achieve during its time. In the ones above I’ve drawn out the ones that seem most relevant to me for current and future public service reforms, not least of which is Integrated Personal Commissioning and what it seeks to achieve.

*I should note that I was involved in the Essex Right to Control Trailblazer.