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Aligning System Levers to Enable Person-Centred Care for People with Long-Term Conditions

C4CC aims to help make person-centred care the norm for people living with long-term conditions. To achieve this, the overwhelming majority of the changes we need can only happen at the local level. But decisions made at a national level also have an impact, either to support or hinder the ability of people locally to work in a person-centred way.

Decisions made at a national level, which have an impact on how things happen throughout the health and care system, are often referred to as “system levers”.

System levers include:

  • Legislation
  • Targets and standards
  • Measurement
  • The NHS payment system
  • National financial incentives
  • Rules about competition
  • Regulation
  • National demonstrator programmes (for example the Vanguards and Integrated Personal Commissioning)

Discussion of system levers can quickly become technical and complex. This paper attempts to keep things simple, so that we can plan and take action. It addresses three questions:

  • What do we mean by system levers?
  • What does this mean for person-centred care for people living with long-term conditions?
  • What needs to be done, and how might C4CC help?

In summary, we suggest that the C4CC partnership should aim to:

  • Get really clear on what the problems are
  • Work with system leadership bodies to align levers to enable person-centred care
  • Work with national demonstrator programmes to ensure the new models of care are person-centred

Download System Levers Discussion Paper (PDF)

Feedback on the paper is welcome. Please send any comments to England.C4CC@nhs.net, by Friday 6 November 2015.

The Collaboration Test

As the Coalition for Collaborative Care gets underway, what should its relationship be with the not for profit sector?

Connecting with people and communities has been something the not for profit sector has for years often done better than the public and private sectors, but it’s only recently that making those kinds of community connections has started to appear prominently in government and NHS policies. Partly driven by the necessity of redefining what public services can do during austerity, a consensus is building that public services are not something that ‘professionals’ do to ‘patients’ or offer to ‘customers’, but are increasingly built on the success with which responsibility, knowledge, resources and – ultimately- power can be shared between people or families with long term support needs and workers who bring expertise, skills and kit, but who can’t magic up long term health and wellbeing for another person.

The need for collaborative care is a strong argument for collaboration between the public and not for profit sectors. It’s also a challenge to the not for profit sector: does every charity and social enterprise have the kind of close, trusting relationship with individuals and their communities that the not for profit sector advertises? How do you maintain a strong connection with a community if you are a very large national charity for instance? Some national charities demonstrate that they can combine the clout of being big with the ethos of being localised, but good local relationships can’t be assumed, just because an organisation has a charity number.

It’s also important to understand that whilst collaborative models of care are a strength of charities, community groups and social enterprises, ensuring those models ‘get into the water supply’ (as Canadian social entrepreneur Vickie Cammack puts it) of public services can’t just be the role of the not for profit sector. We need a way of building the expectation of collaboration into every contract for every kind of service, whether public, private or not for profit. In the absence of a better term so far, I’m calling this the collaboration test and it’s a test I believe should be universally applied. The test would be something like this:

Does this intervention or service leave each individual, family or community it is offered to:

  • Better informed (or mired in jargon and bureaucracy)?
  • More confident of their own capacity and more resilient (or more reliant on outside help and expertise)?
  • Better connected to those around them (or with new barriers between them and their family, friends and neighbours)?

It’s easy to see how many not for profits directly try to achieve these goals, particularly where they are delivering community-based initiatives. Adopting these tests universally would help to drive resources towards such initiatives, because they are harder to pass, the more institutionalised or industrialised a service becomes.

But every intervention, and particularly every intervention which is intended to be long term, can be delivered in a way which is confusing, undermining and isolating, or in a way which shares knowledge, resources and power and which aims to minimise its negative impacts upon relationships and connections (close to home, not in a distant hospital, for instance) and where possible to support those informal support networks, for instance, through the professional sharing information and expertise with family carers and being contactable in an emergency.

The ‘customer service’ paradigm for public services is over. It looked achievable and affordable briefly during the boom years, but it can lead to unmet expectations and weaker civic society relationships, which hurt the whole concept of public service during austerity.

If you do a great job of carrying out a procedure, or providing treatment, but you fail the collaboration test, your service is not giving itself the greatest possible chance of success – which means it’s also failing the value for money test. So ‘efficiencies’ which shave a few minutes off contact times, at the expense of people or families having the knowledge, networks and back-up they need to live well with a long term condition, are, in fact, inefficiencies. But if we think collaboratively, then every intervention becomes potentially a preventative intervention. That’s why it’s the key to a public service culture which we can afford, as well as one which feels like it’s on our side when we need it most.

Alex Fox is CEO of Shared Lives Plus  the national charity for Shared Lives and Homeshare services. He is the lead board member for Building Community Capacity in the Think Local, Act Personal partnership.

We launch our vision for the future

We officially launch our vision for the future at the ‘Future of Health’ conference in London today (Friday 21 November).

Our coalition creates a major new alliance which is committed to improving care and support for people with long-term conditions. We are bringing together some of the sector’s most influential national groups and organisations alongside people living with long-term health conditions to champion a system-wide transformation in how they receive and use care and support.

Our vision for the future focuses on re-framing the relationship between a person with long-term health conditions and the professionals supporting them. This allows the expertise of both to be used most effectively to help the person plan to manage their condition and maximise their well-being. It will draw strongly on the House of Care developed by the Year of Care Partnerships which highlights what is required to achieve person-centred coordinated care. You can read more about our vision by downloading the paper below (also in Easy Read or by watching our short film:

Director of the Coalition for Collaborative Care, Martin Routledge, said: “We want the Coalition to light the blue touch paper for big changes in how people with long-term conditions and professionals work together to produce better lives. Today, we have launched our Vision for the Future but of course the future has to start now. There is huge potential for people’s expertise to come together in new and better ways that improve outcomes. But this is accompanied by frustration that the promising practice that can be seen in patches around the country is not quickly becoming mainstream.

“C4CC wants to work with those determined to move person-centred collaborative care from the margins to the centre of practice and experience. We are confident that the unique nature of our coalition – bringing key organisations and people from across the system and with lived experience into the room together with a clear focus and purpose – models the change we are trying to make. We believe we can have a real impact.”

There is good evidence to suggest that engaging with people with long-term conditions to co-design their care, leads to better outcomes and more successful independent living. We aim to ensure that professionals and people have the right support, knowledge, skills, power and confidence to achieve this.

Fiona Carey from the Coalition’s Co-production group, said: For me, person-centred care is about two things. First, it means healthcare professionals seeing me as a whole person with a productive and complex life rather than a series of single conditions. Most of the time I manage my own care myself and while I truly value the expertise of healthcare professionals they need to make the most of, and value, my expertise and experience.

“Second, systems and budgets need to be much more joined-up. Explaining repeatedly, and ‘dealing’ with disparate services, wastes everybody’s time and resources and doesn’t help anyone.”

Halima Khan, Director of the Innovation Lab, Nesta said: “We want to create a better deal for people living with long-term health conditions. The Coalition will support a change in the relationship between professionals and those living with long term conditions – a change that will support a more collaborative approach that allows the patient to be more in control of their own health. These initial conversations can then pave the way for access to a whole range of additional social solutions – such as peer support – which enable people to live much better with their condition.

“The Coalition provides the opportunity for the sector to make a real difference to people’s lives. We know that the changes required of the health system are beyond the remit of any one, single organisation. We have to work together. This is fundamentally about re-designing the health system for the 21st century. ”

Vision paper thumbnail

Our vision also puts a strong emphasis on a much more holistic approach in which there is less focus on a person’s condition in isolation and more on the full spectrum of support that is required to enable people to be included in and play active, valued roles within their own communities – an approach developed by Nesta in its People Powered Health programme and often called ‘More than Medicine’.

But achieving these challenging goals requires a big shift towards much greater use of these approaches to support people. Though some have been developed for a number of years now, they are still not happening at scale despite policy support and evidence showing they work.

David Pearson, Adass President and Board co-chair for Think Local Act Personal (TLAP), said: “In the future, the work of this Coalition has the potential to transform lives and make a huge difference to millions of people living in this country. It’s absolutely right to focus our collective efforts across health and care to get the best outcomes for people and families regardless of their health condition or care and support needs. By linking with the Think Local Act Personal Partnership, we will ensure the Coalition builds on what we have learnt in implementing personalisation in social care.”

Bridget Turner, Director of Policy at Diabetes UK, said: “The Coalition is championing a complete change in the way in which care and support is provided to those living with long-term conditions. The voluntary sector has a crucial role to play in promoting and supporting this transformation.

“We know that the whole package of care required by someone living with long-term health conditions such as diabetes relies on good conversations to identify individual’s needs and circumstances and work together to agree goals and priorities. High quality clinical care is important, but there is also a need to think much more broadly about signposting to the wide range of community and support solutions which can make a significant difference to quality of life, health and wellbeing.

Dad play with son outdoor at park“The Coalition has an important role in shaping and implementing these changes, by working more closely across sectors and, of course, with people who are living with long-term conditions.”

Our coalition will take action in support of professionals keen to develop their practice and people with long term conditions wanting to work differently with professionals. We will also take action to influence how professionals are trained, develop and share the evidence for new ways of working and seek to pull the policy and system levers that shape professional practice.

Sam Bennett, TLAP director, said: “TLAP has worked hard to extend its influence in the NHS because we recognise the whole heath and care system needs to change so people, carers and families have more control and can live more independently. We welcome C4CC’s arrival and will forge a strong partnership to align our respective goals and practically deliver on our shared ambitions.”

Nigel Mathers, Honorary Secretary of the Royal College of General Practitioners and convening chair of the Coalition, said: “As a GP, 50% of all our consultations are now taken up by people with long-term conditions. The consistent message from our patients is that they want better partnerships with us, particularly those who have long-term conditions.

“The Coalition for Collaborative Care brings together a wide range of organisations committed to making this change. We want to transform the way we currently support people with long-term conditions by building the ‘House of Care’ in every community.  We hope the synergy created by working together will help us to embed this, and other initiatives designed to support self-management and share decisions with our patients, into every day clinical care in the NHS. The more people and organisations we have in the coalition, the better and I hope to welcome many more to our number over the coming weeks and months.”

By bringing together and enabling partnership working between leading organisations in health, social care, the voluntary sector and people living with long-term conditions, we are aiming to build joined up, powerful momentum – supporting those determined to make person-centred collaborative care a reality for everyone.

Download the vision paper (also available in Easy Read) below.

Vision paper

Vision Easy Read

Find out how you can get involved and help make a difference to the lives of people with long-term conditions.

Of the people, by the people, for the people

Simon Stevens fires the starting gun for a new deal for people with long term conditions

Major editorials in the serious papers, leading the national TV news, immediate responses from political and professional leadership – The NHS Five Year Forward View certainly grabbed attention.

The powerful focus on people with long term conditions and on a serious shift towards person centred collaborative care is long overdue and very welcome to the Coalition for Collaborative Care. Point 5 in the executive summary was music to my ears, following through on the messages Simon Stevens has started to send over recent months:

When patients do need health services, patients will gain far greater support over their own care – including the option of joint budgets combining health and social care. The 1.4 million unpaid carers in England will get new support and the NHS will become a better partner with voluntary organisations and local communities

The Forward View reminds us that people with long term conditions spend less that 1% of their time with health professionals and that the rest of the time they manage their own lives in their families and communities. It quotes our partner organisation National Voices, quite rightly saying:

Personalised care will only happen when statutory services recognise that patients own life goals are what counts;- that services need to support families, carers and communities; that promoting well-being and independence need to be the key outcomes of care; and that patients, their families and carers are…experts by experience

C4CC believes:

  • That people with long term conditions are in charge of their own lives and should be the main decision makers about the actions they take in managing their conditions. People can express their own needs and decide on their own priorities in partnership with professionals. Professionals need to recognise people’s assets, strengths and abilities, not just their needs, and support them to live their lives as well as possible.
  • People are interested in their lives rather than just their conditions and help should be coordinated around the whole person’s needs. The relationship between a person and a professional should be one of equals where each is seen as having expertise.
  • That as well as being the right way to support people, this approach works. People are more likely to follow through on decisions they make in partnership, which helps people manage their conditions and so stay well and independent. For people approaching the end of their life, taking this approach to decisions is often especially crucial

The NHSE Chief Executive is telling us that now is the time to take this seriously.

Stakeholder summit

On Monday 30 June 2014, the Coalition for Collaborative Care hosted a meeting of ninety people at Mary Ward House in London. Participants represented over fifty organisations and every table included at least one person with lived experience of long-term conditions.

The aims for the day were to:

  • share progress around making person-centred, coordinated care a reality for people with long term conditions, by hearing some practical case study examples and sharing experience in the room
  • continue to identify what needs to happen at a local and national level and brainstorm ideas for overcoming common barriers to progress
  • describe how the Coalition for Collaborative Care plans to support and enable work going on in this area around the country and to seek any further ideas and requests from the people in the room

This page includes slides presented at the event:

It’s time to stop talking and get on with it

A year ago when health, social and voluntary sectors care professionals, managers and people with long-term conditions (LTCs) met with academics and other interested individuals at the Kings Fund and then at Nesta the message was overwhelming – stop talking, get on with it.

We reviewed the delivery landscape for people with LTCs and multimorbidity and decided enough was enough. We felt it was time to pull together and use our collective ideas and experience, to roll up our sleeves and start turning aspirations into reality.

A small but expanding group has been meeting and is now called the Coalition for Collaborative care with an emphasis on Action for Long Term Conditions. So why has it taken this effort to ensure the routine provision of person-centred coordinated care when people with LTCs have been demanding this for so long?

First, having a LTC is very different from an acute condition. Most of important developments in medicine and technology in the last century have been about helping care professionals to do things to people or for people.

People with LTCs need practitioners to work with them to make the best decisions in their daily lives and achieve what matters most to them.  This demands new attitudes and new skills from practitioners – and habits are hard to change. But the systematic processes in care and support planning make this easier to get right every time.

Second, achieving personally-tailored solutions for each of the 15 million people with LTCs is a complex business that no one practitioner or organisation can provide alone.  Participants at last year’s workshops described how the great things they were doing weren’t as effective as they hoped because there was always some other part of the overall system that was missing.

The House of Care describes a flexible but systematic and practical way in which the experience of all the coalition stakeholders can be used by local health and social care communities as they redesign their integrated services. It shows us not only which elements need to be in place, but that they need to be linked:  if one is missing – the structure is not fit for purpose.

Finally our health and social teams all want to make sure they are making a difference to people’s lives. It’s why they do the job. But care and support planning and the House of Care will not happen by chance. We now have tried and tested training programmes, practical learning and resources from the Year of Care programme and People Powered Health pilots to make it easier for teams to get going. The launch of the Coalition for Collaborative Care means there are no excuses any more. It’s time we all set about building a local House of Care.

Sue Roberts, chair, Year of Care Partnerships, Northumbria Healthcare NHS Foundation Trust

Let’s change the nature of the conversation

It is exciting and encouraging to be part of the Coalition for Collaborative Care. Working within NHS England my role has been described as tackling the biggest challenge facing the NHS – enhancing the quality of life for people with long-term conditions. As a clinician I trained in a speciality and worked as a GP. I then found myself immersed in the world of commissioning. My experience has taught me that there are immense assets within and outside NHS England, but also beyond the NHS that can be mobilised to support the outcomes and ambitions we have set. When I first started at NHS England I came across the House of Care – a whole system approach to support personalised care planning and person-centred coordinated care. Intuitively and intellectually it made complete sense and touched my values as a clinician. This is why it is central to the work we are doing here and why we are promoting the House of Care.

The potential of the coalition to change the nature of the conversation with individuals who have long-term conditions is something that is needed and supported by NHS England. I am delighted we are part of the coalition working with colleagues across the NHS to support its aims and ambitions. We are working in partnership with so many different organisations who are focussed on the person, not just the conditions they suffer or the system that provides their care.

The changes required will be challenging for clinicians and others who either live with or support people with long-term conditions. It will take time, energy, resilience and focus. The coalition brings this energy and focus and resilience together in one place and I know everyone is eager to roll up their sleeves and get to work.

Dr Martin McShane, Director for Improving the Quality of Life for People with Long Term Conditions, NHS England

We can help GPs find better way of working that will improve the lives of patients with long-term conditions

As a GP every day seems to bring new challenges. For example, 50 per cent of all our consultations are now taken up by people with long-term conditions and the complex problems presented by multimorbidity. Our consultation rates have been steadily increasing over the past decade and the consistent message from our patients is that they want better partnerships with us, particularly with those who have long-term conditions (half of the over 50s). So how can we meet these challenges?

One approach which has been shown to be effective is care planning – a process by which people have access to their test results and share decisions with their doctor about the key priorities for their future care. This approach was pioneered by the Year of Care Partnership and the RCGP.  However to implement care planning four things need to be in place.  First is a commitment to partnership working.  Second our patients (people with long-term conditions) need to be engaged and involved in the process. However, care planning is not possible without a further two other elements – the resources to support this change in the way we work with our patients and the necessary practice organisation required to ensure that patients receive their test results in the right way in the right time. These four components make up the House of Care.

A wide range of organisations are now committed to this new way of working and have come together to form the Coalition for Collaborative Care.  Our main objective is to transform the way we currently support people with long-term conditions by building the House of Care in every community.  We hope the synergy created by working together will help us to embed care planning and other initiatives designed to support self-management and share decisions with our patients into every day clinical care in the NHS.

We have a wide range of new ideas and innovations to help clinicians and patients implement this way of working which can bring about improvements in quality of our care as well as health outcomes.  The more people and organisations we have in the coalition the better and I hope to welcome many more to our number over the coming weeks and months.

Nigel Mathers, Honorary Secretary of the Royal College of General Practitioners and convening chair of the coalition

If you are ambitious and determined to improve the lives of people with long-term conditions then join us

The Coalition for Collaborative Care is an important step towards a health and care system fit for the twenty-first century. The coalition brings together a diverse set of people and organisations united by our commitment to make significant changes to the way people interact with health and care services. We want people with long-term conditions to be in control, working with health and care professionals to improve how they live with their long-term condition. At the same time, we recognise they have knowledge and should be actively supported to manage their conditions. This includes help to take the often challenging steps towards long-term behaviour change in areas like diet, smoking and exercise and connected to one another to create powerful networks that support better health.

The coalition is important because this is the first time a group of people and organisations, who can influence and implement large-scale system change, have come together to do just that. We will campaign and influence, but also take on the hard work needed to transform the wiring of the system as well as support tangible change on the ground. This dual focus – on the system and local adoption – makes us as ambitious as we are determined. Our firm commitment is to improving a whole range of influencing factors from financial incentives for clinicians to the evidence base underpinning the approach; from training for healthcare professionals to developing networks of patient leaders. The focus is on action and on large-scale change – moving collaborative care from the early adopters to the mainstream.

Nesta’s own work in this area is People Powered Health . This recognised that the necessary changes to the health and care system are beyond the remit of any single organisation: it is a systems challenge. This is why we’re particularly pleased to be part of the coalition, working alongside others to take deliberate and intentional steps towards a health and care system that is entrusting, enabling and empowering.

If you share our vision for the future of the health and care system then come and join us, there’s plenty of work to be done.

Halima Khan, Director – Innovation Lab, Nesta 

We need to stop thinking of self-management support as a fringe activity

We have been talking about the chronic care model (the Wagner model) in this country for about a decade now and truth to tell, most health economies have struggled with it perhaps because it seems quite conceptual. Successive attempts at refinement by policy teams have failed to mould it into something that could be used to inform frontline delivery. So despite national recognition that we need to transform public services for people who live with long term conditions, progress over the last decade has been limited.

Now we have the House of Care, which you could argue is derivative of the Wagner model but it is a distinct improvement, primarily because it can be used as an implementation checklist by health and social care teams.  It makes system transformation doable.

When the House is built, it represents a transformed public service delivery system for people who live with long-term conditions and it also shifts the system from being reactive and disease centric towards being proactive and person centric. This is important because teams can begin to work in prevention mode, rather than always working in treatment mode. This is a shift in role for the workforce that we should not under-estimate.

The teams who implement the House recognise that people who live with long-term conditions are the principal actors when it comes to managing their health – usual management is self-management. They recognise that self-management support is more than an expert patient programme and is an organising principle for the system – the House is a gateway to services that support people with long term conditions to become knowledgeable, confident self managers. This is because the bottom line is that we can only implement self-management support effectively in a proactive system; in a reactive system, patients visit their healthcare professionals only when their self-management resources are exhausted

So, let’s stop thinking of self-management support as a fringe activity, let’s stop putting it at the bottom of our shopping list and (crucially) let’s stop thinking that we don’t need to fuss with self-management support as long as we buy a few expert patient programmes. In short, let’s stop thinking that self-management support is what somebody else does; self-management support is everybody’s job and the House is the perfect delivery system to put self-management support in its rightful place – centre stage.

Alf Collins, Clinical Associate, The Health Foundation