Letter to the Prime Minister

A letter to the Prime Minister from the chairs for three select committees calls for cross party talks and consensus on a long term settlement for social care. Having given evidence to the recent Communities and Local Government Committee on this issue, I ‘m heartened to see the three committees coming together to call for positive change.

We have been here before of course. There have been cross party talks and the beginnings of consensus, but they have either gone nowhere or unravelled as pre-election party politics put point-scoring ahead of doing the right thing by older and disabled people. The Dilnot reforms gained cross-party support but were an early victim of austerity.

The temptation will be to aim for big, simple, government-sized announcements, like the complete integration of heath and social care. These will not solve the issue, and could even do more harm than good if, for instance, the whole system is integrated around the power bases of the big local hospitals, at a time when we need desperately to shift power and resources into the community. There is clearly a need for a big injection of funding to avoid widespread catastrophe and whole care industries such as home care collapsing completely. But again, short term funding is necessary but not sufficient, if it is spent only on the things we spend it on now.

So by all means let this lead to more money and more joined up health and care systems, but the more important and much trickier challenge is to use this moment not simply to shore up today’s approaches, but to invest in scaling up the most promising community and family based initiatives. The goal should not be integrated bureaucracies but unified goals: a health and wellbeing system which aims to create and sustain wellbeing, which connects people and supports family carers, which values resilience. It has never been more appropriate to take some risks. We have of course been calling for ambitious investment in initiatives like Shared Lives and Homeshare which have demonstrated they work. But we also need to be prepared to scale down bureaucracies and organisations whose unresponsiveness demonstrates they are too big, through accelerating approaches like personal budgets, personal health budgets and the involvement of voluntary, community and social enterprise organisations in designing and delivering interventions in people’s lives which are focused on health, not just illness and which are social as well as genuinely caring.

Always compassion

I chaired the final session of a King’s Fund conference on co-production and the six principles of the Five Year Forward View today. Mark Doughty who developed “life changing” arthritis as a young man and is a senior consultant with the King’s Fund reflected on the difference between the kinds of relationships we take for granted in most of our lives – respectful, compassionate – and the relationships we have within ‘the system’, which can feel far removed from that. Initiatives like the late Dr Kate Granger’s “Hello my name is” campaign and the work of Andy Bradley and Frameworks for Change are attempting to bring the compassion back into what should already be compassion-focused fields of work, but too often aren’t.

Delegates suggested that the gap between the relationships we want and the relationships we have if we work in or are users of health and care services can often come down to time. As resources get tighter, time gets more and more pressured. Stress levels rise and even the common courtesy of remembering to introduce ourselves to people who might need intimate or highly stressful care from us can go by the wayside. Bradley’s work has a strong focus on self-awareness and self-compassion as the building block for compassion for others.

It could be argued that the current cuts to health and care service budgets make creating the time and space required for compassion simply impossible. But even within stressed and faltering public services there is an element of choice about what people at each level within the organisation choose to value and allot time to. Neil Churchill’s presentation on Always Events – practices which are identified jointly by people using services, practitioners and managers as being important to compassionate, effective care – showed that the case for compassion is often also the case for achieving outcomes and creating better value for money.

Deciding what is important and what to spend time on is of course about power. Part of the reason that the Hello My Name Is campaign was – shockingly – needed, is that there is a pervasive history of medical professionals believing in status and deference within the NHS. What felt important to ‘patients’ is not automatically felt to be what is most important to the services which they use and ultimately pay for.

We can experience the demands of ‘the system’ as all-powerful and inhuman, but in reality there is no ‘system’, there is only us, and what we choose to value and give time to. At present there are, though, more divisions between the different tribes of our public service world than there are shared beliefs around which we can build our public service sector into a unified movement. Our challenge – which is also the challenge of making co-design and co-production into Always Events in all public services – is to insist upon compassion and connection as always more important than anything else we might achieve, and when the pressure, stress and frustration mounts, to model it even as we fight for change.

 

It’s still time to Transform Care

We are involved in lots of very promising work at the moment around Transforming Care: the work on which NHS England is leading to get people with learning disabilities and mental health problems or other ‘complex’ or ‘challenging’ needs out of medical institutions and into ordinary homes in the community. The programme is also aiming to reduce significantly the number of people who go into such institutions when they have mental health and other crises.

So far the various post-Winterbourne View scandal workstreams have been a great (ie bottomlessly depressing) example of what can happen when the full might of government and the wider system suddenly throws some of its best leaders, hundreds of millions of pounds and countless staff hours at a problem, backed up by all the pressure of targets and ambitious timescales: a target setting industry springs up, there are huge amounts of activity, much of it happening under almost intolerable stress, but the best spin you could possibly put on the results of several years of this is a gentle decline in the numbers of people in ATU. Some people have left, whilst others have taken their places. Where there is a bed, it will be filled. Collectively, we did lots of perfectly sensible things, but missed several essential things, without which real change could not happen.

Most importantly, ‘we’ – people working in leadership roles in the sector – turned out not be the right people to be making change: we didn’t have the courage or imagination to cede our leadership roles and power to people with learning disabilities and their families because there was neither the time nor resources to do so in our important and urgent work. Except that it turns out there was all the time in the world, because here we are five years later pretty much still on the starting line, and all the money we needed, because we have spent millions. People with learning disabilities and their families would, I believe, have led us slowly and haltingly in the right direction, with results no worse and potentially a whole lot better.

I’m optimistic that the work we are now doing with NHS England will get real results. We have had really strong interest from CCGs who are expressing an interest in the NHSE funding to demonstrate and scale up Shared Lives as a health intervention, not just for people with learning disabilities but lots of other groups as well such as people with mental health problems and older people leaving hospital. We are also developing an alliance contracting model in which we hope Shared Lives provider organisations and other like-minded providers with different models will work together, with the involvement of advocacy and self-advocacy organisations, to put a different offer in place. And we are a strategic partner in the IPC programme, with funding to support the IPC areas to think differently about providing personalised health care in general and Shared Lives specifically.

We’re doing this work because one of the intractable problems at the moment is that pared-down commissioning teams can see that new models might be better, but don’t have the capacity, expertise or relationships to develop them. Providers with good models can’t develop new models without a commissioner helping to define what is needed and in a position to purchase it. Commissioners are reluctant to block purchase care in any case: they are aware they are supposed to be helping individuals to make very individual choices. But without new models of care to choose, individual choice remains theoretical, so we have the worst of both worlds: neither old-style commissioning using its buying power to demand and invest in a better model, nor a functioning marketplace in which personal budget holders can find providers with something they want.

Our work will bring Shared Lives as a new model of care to many more people, but Shared Lives of course cannot be the only solution, and making it available doesn’t on its own shift the current power imbalances. Without changes at a deeper level, I worry that care will remain untransformed for too many people. Here are four changes it is not too late to make:

  1. We need a contracting model which pays for outcomes not time, which any commissioner and provider can use. Where care is paid for by the hour, the incentive for providers is to maintain, not reduce, extremely high levels of support, even where people no longer need it and the ‘care’ is now getting the way. Our alliance contract model will attempt to build this kind of contracting model and our outcome measuring tool will be one way in which those outcomes can be measured, but models of that kind need to pushed out right across the system.
  2. We need to build marketplaces in which people who are receiving care and their advocates can share limited information with suitably vetted providers, so that providers can start making offers to people who have a personal budget or Personal Health Budget, with the support of brokers. This will require investment but save more money than it costs.
  3. We need to build proper scrutiny into the system, led by people and families. Rather than the patchy system of Learning Disability Partnership Boards which work only when commissioners choose to engage with them, but are essentially an optional extra, commissioners and clinicians who are currently unaccountable must be obliged to report regularly on progress to a group led by self-advocacy and families’ organisations. This will focus their minds and make failure and stasis less of an option.
  4. We need ways to move resources from the state system into support for people who live in the community or with their families, to avoid the current cliff edge where a family in crisis can be told “there’s’ no money” one day, only for thousands of pounds a week to be found the day after the family collapses, to pay for institutional care. One way to do this would be for commissioners to be obliged, whenever funding is identified for emergency or medical care, to offer that money first to the existing provider, or to family carers, for them to draw up an alternative spending propose to sustain family or community care. Another would be for individuals to be able to share in savings made when a medical care package is replaced by community care, to build up a contingency fund to spend when in crisis.

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We need to talk about PAM

There is a lot of excitement in the health service about self-care and patient activation. Patient activation is the field of trying to help and encourage people with long term health conditions to be more active in understanding and managing their health. There is a patient activation measurement (PAM) system which tracks the extent to which people are taking responsibility for their own health, managing medication and ‘self-caring’, rather than relying on medical professionals. ‘Activated patients’ are likely to be living more healthily and experiencing fewer health crises.

Patient activation is an unfortunate term for a potentially useful idea. If you start by thinking about people with long term support needs as patients, who need to be activated by doctors, you’ve already lost. This is borne out of the kind of thinking that talks about whether you take the medication your doctor wants you to take as ‘compliance’ and ‘non-compliance’. It sounds like it’s about taking personal responsibility for our own health, which we should all do, but it is yet to escape its roots in ideas of responsibility which are defined by the medical profession: to do what the experts tell you, so that you can reduce your risks of avoidable hospital admission and ultimately cost the NHS less money.

People who get this agenda acknowledge that the terminology is not helpful. So what would be more helpful formulation of this agenda? As always, we need to apply an assets focus to this question. An assets focus assumes that people have expertise in their own lives and looks for what they can or could do, not just what they need and can’t do. It requires looking through person’s eyes and those of people closest to them, not through a professional or service lens.

Looked at through these lenses, an individual with a long term condition is not primarily a patient: they are living their lives – sometimes their whole lives – alongside the condition, and whilst no one wants to use emergency and medical services more than necessary, that is unlikely to be anyone’s number one goal in life. So patient activation is actually about what in social care has for years been called choice, control and independent living.

At a deeper level, it is about supporting people with long term conditions to live well. The key NHS contribution to that will be about supporting their health and wellbeing, but this will only translate into living well when the system as a whole (health, care, housing, the voluntary/community/social enterprise sector) is designed around informing, empowering and connecting. We need to recognise that what we are measuring is both the positive and negative impact of service interventions on the strength and capability of the individual and their families. So if we want to avoid this becoming another failed attempt by services to fix us, we need to reframe the PAM in several key ways: Continue reading

Big changes in small places

There is a shift being planned for the NHS which has the potential to be one of the biggest in its history. Certainly more long lasting and with more potential to create real change for people than the scores of restructures which the UK’s favourite public service has had to endure during its nearly 70 years of history.

It’s a shift that has often been talked about as desirable, more recently talked about as essential, but never, if we’re being honest, one which has been backed up by real system change.

It’s the shift from hospitals to communities, but it can’t just be moving familiar approaches into smaller buildings. It’s the move from formal to informal care, but it can’t be about sacking your heart surgeon and replacing her with a volunteer, which is what many people will read into that kind of change. It’s the shift from a biomedical to a social model, but we’ll have to find some plain English for that. As Anu Singh eloquently outlines in her recent blog, it can mean support to self-manage rather than rely entirely on medical professionals, peer support or group activities, and health coaching, but it has to be about more than those new programmes, it has to be a change which takes root across the whole system.

This won’t be easy. Whether we work in healthcare or not, we are all taught that health professionals know best. The expertise of our health professionals, based on years of training and incredible advances in research and medical technology is fantastic and we should never take for granted that we access that for free: it often stops suffering and saves our lives. But that attitude of ‘doctor knows best’ is less useful when we feel that we aren’t really responsible for our own health, or can’t manage our own care. And it can be lethal when the health system ignores the insight of people themselves or their families which is a lesson we never seem to learn. It is these ingrained attitudes which both people using services and those working in and managing them find so hard to shift.

We talk about them as culture change, which is often code for things we don’t really think are achievable, and our responsibility. I’ve blogged before about the changes which are achievable and are the responsibility of us all:

  • Building asset based thinking throughout the system: this means everyone being trained to think first about what people can or could do with support, then about what they must rely upon services and professionals for.
  • Passing the ‘connection test’: expecting all services to connect people and avoid disconnecting people from their family, friends and communities, and having the courage to measure both the connections and disconnections.
  • Thinking whole-person, which for most people means thinking whole-family and whole-community. Family carers are not just another group of people with support, they have expertise, are often care coordinators and they provide untold hours of support. They need training, breaks, information and access to emergency back-up: the same things that paid professionals need to care safely and well, without damaging their own health.
  • Continuing to shift power to people, not just as individuals (eg Personal Health Budgets which shift control of money from services to individuals) but also as groups (eg people with Personal Health Budgets given the opportunity to link up, pool resources and feed into planning processes).

We are excited that Shared Lives, thanks to a £1.75m grant from NHS England, is going to be one way of showing people that these cultural shifts can be practical, affordable initiatives that will help people live well, enable others to contribute their skills in a very human way, achieve better health outcomes and save money. £1m of funding and additional expert support is being made available to Clinical Commissioning Groups (CCGs) to enable:

Because Shared Lives carers are trained and paid, but not by the hour, doing much for which they expect no payment and involving their family and friends informally, Shared Lives is able to combine the best features of paid and unpaid support: the formal and informal, professional and personal. This way of working can’t be forced, but it can be facilitated: the matching process ensures that everyone involved makes a positive choice to spend time with each other, rather than being assigned or placed. As a nurse who is now a Shared Lives carer put it: “I can still use my nursing skills but there aren’t the same power structures and bureaucracy in my kitchen as there are in the hospital.”

The shift in power and the cultural change cannot be separated. The experience of doing things so very differently changes the lives and thinking of everyone involved, commissioners, people using support, managers, Shared Lives carers and even their kids. But it’s achievable, scaleable, affordable and most of all, it’s happening right now, in an ordinary-looking family home not far from you. As strategic partners of the NHS England Integrated Personal Commissioning programme, we will be spreading this new way of doing and thinking nationally with lots of NHS organisations.

Many people fear big changes in the NHS. They think of iconic hospital buildings closing. The values of the NHS being erased for the profit motive of faceless private sector multi-nationals. This change is happening in small places, but those small places are everywhere.

Charities, community groups and social enterprises at the heart of health and care

Today we launch the final report and recommendations from the Joint Review of the Voluntary Community and Social Enterprise (VCSE) sector’s role in the health and care system. This follows a year and a half of hard work by an advisory group (which I have chaired) made up of people from the VCSE sector working together with people from national and local government. It’s been hard work and the co-produced process has at times challenged the usual systems for producing reports, with lots of pragmatism required on both sides. But I feel (and hope you’ll agree!) it’s been worthwhile, in order to build a consensus around a clear view of what the VCSE can and could do, the challenges it faces and the ways in which many of those challenges could be overcome. I’m incredibly grateful to everyone on the group, NCVO who provided the secretariat, communications support and much more, and to lots of colleagues working behind the scenes and in numerous agencies we liaised with, who have all worked so hard to get to publication (see www.gov.uk for full report). Here is the blog which I wrote for the launch:

The goal shared by everyone who delivers and organises health and care services is wellbeing: its creation and its resilience. Whilst we do not want to spend increasing proportions of our lives in medical nor social care, we will all draw upon primary, acute or specialist services at various points in our lives and we want to find them available, caring and well run when we do. However, whether for people with lifelong disabilities, the ever growing older population or those with long term health conditions and support needs, our dreams remain rooted in living well at home as part of welcoming, inclusive communities. To achieve that goal, we need health and care systems which are organised around and support our lives: which can reach us in our homes, support our families to care, and release the full potential of communities.

When people talk about the difference that charities, social enterprises and community groups can make to delivering health and care services, they often focus on the ways that those organisations can reach people whom mainstream health and care services find ‘hard to reach’ or ‘challenging’, get to know them more deeply, and draw upon volunteers to achieve more than paid staff alone can achieve. All true, and extremely valuable, but, our review of the voluntary, community and social enterprise or VCSE sector found, only half the story.

There was indeed wide agreement that good VCSE organisations are better placed than other kinds of organisation to achieve some of the health and care goals which are now seen as crucial to the sustainability of our NHS and social care systems. It is VCSE organisations which often support groups and communities which are otherwise neglected, not only responding to health needs but also starting to address the social determinants (poverty, housing, exclusion) of health and deep-rooted health inequalities. Through drawing on people power as well as money, VCSE organisations are often uniquely able to offer support which looks at the whole person and whole family, thinking preventatively and whole-lifetime. Many of our recommendations are designed to identify, measure and invest in those added kinds of ‘social value’ which VCSE organisations bring into a system desperately searching for more bang for its buck.

The current funding trajectory in some areas is towards large, narrowly focused contracts, which can be appropriate to holding big providers to account, but can be poor ways to create the diverse local marketplace of big, small and niche providers called for by the Care Act and needed to reach whole populations and to offer people genuine choice. The most creative planners and commissioners are drawing on the full range of investment approaches, using contracts creatively alongside grants for community development work, personal budget and Personal Health Budgets for personally tailored support packages, social prescribing to link up vulnerable people with effective charities (with funding following the prescription to ensure that’s sustainable), and social investment to take risks and innovate.

So developing the VCSE sector as a distinct form of health and care provision is crucial and brings value into the system that money alone cannot buy. But for many of the VCSE organisations and local commissioners who responded to our consultation, just as important as how much funding VCSE organisations could win through competing to provide services, was the extent to which VCSE organisations were involved in planning those services: co-designing the local health and care goals and playing a full part in developing responses to local needs and building on local assets and community resources.

Traditionally, the health and care system has been designed largely by the state Continue reading

Latest Shared Lives news

Cathy Newman of Channel 4 News met a Shared Lives household: https://www.youtube.com/watch?v=wb_DyYvE9zE

Our £1.75m partnership with NHS England has been launched with funding awarded to five areas and their Clinical Commissioning Groups to develop Shared Lives as a form of healthcare.

The Shared Lives Incubator social investment programme developed in partnership with Social Finance and Community Catalysts is investing in Shared Lives in three areas.