NHS Citizen Assembly Stocktake (March 2015) Self-care and personalisation. Version 1

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1 NHS Citizen Assembly Stocktake (March 2015) Self-care and personalisation Version 1 1

2 Self-care and personalisation One of the great strengths of this country is that we have an NHS that - at its best - is of the people, by the people and for the people. Yet sometimes the health service has been prone to operating a factory model of care and repair, with limited engagement with the wider community, a short-sighted approach to partnerships, and under-developed advocacy and action on the broader influencers of health and wellbeing. As a result we have not fully harnessed the renewable energy represented by patients and communities -NHS Five Year Forward View Self-care and personalisation are part of an overall approach to enable and empower individuals and communities to take an active role in their own health and care. Self-care is about supporting people to develop the skills and confidence they need to look after themselves. A personalised NHS aims to support a person s rights to determine the course of their own life. This is underpinned by National Voice s narratives for person-centred care 1 : I can plan my care with people who work together to understand me and my carer(s), allow me control, and bring together services to achieve the outcomes important to me. The NHS Five Year Forward View 2 published in October 2014, sets out how the health service needs to change, arguing for a new relationship with patients and communities. It makes a specific commitment to do more to support people with long term conditions to manage their own health. With help of voluntary sector partners, it signals the need for significant investment in evidencebased approaches such as group based self-management education courses for people with specific conditions, as well as encouraging independent peer-to-peer communities to emerge. NHS Citizen Assembly Many of these themes were covered at last year s NHS Citizen Assembly, where citizens and NHS England discussed how we could work towards an NHS with truly personalised services that supported people to live their lives. The conversations identified seven key issues: 1) Developing the self-care agenda through a communal endeavour to unleash the power of people 2) Making the most of digital tools to give people more control over their care 3) Providing more support to carers 4) Training for staff to listen to patient needs and provide them with the required confidence and skills to manage and make decisions about their health and care 5) Training for patient champions at all levels of the NHS could help facilitate engagement 6) Commission NHS Citizen (that is patients and service users) to design a national process for co-production

3 7) Care should be patient-centred and holistic. This requires more joined-up thinking and services working together beyond silos. In this respect the role of care-coordinators could prove pivotal Following the NHS Citizens assembly, NHS England responded to each of these issues (see Annex A). This paper provides an update on progress for each of the identified areas. 1. Developing the self-care agenda through a communal endeavour to unleash the power of people and 4. Training for staff to listen to patient needs and provide them with the required confidence and skills to manage and make decisions about their health and care Revolutionising the role of patients and also communities in their own health and care is a key objective of the NHS Five Year Forward View, published earlier this month. To follow, we have commissioned Realising the value: a new relationship with patients and communities to build and strengthen the evidence/practical case for this and to enable us to effect change through the commissioning system. To effect change across the commissioning system, we believe that five components are needed, which together form the broad scope and objectives of this work: To understand the value of individuals and communities in their own health and care in three dimensions: health and wellbeing; NHS sustainability; and wider social value. A clear and creative articulation of the value of individuals and communities in their own health and care, in England, building on the existing evidence and research To demonstrate what works in terms of creating value by modelling the impact of a range of individual and community centred approaches such as peer support and social prescribing. Innovative tools/training packages to support culture change, for both health and care professionals and individuals and communities themselves, underpinned by behavioural psychological techniques. To align the system and measure what matters An assessment of system levers and drivers To bring this together to effect change locally - A model to support change locally, developed and tested across 2-3 local health economies, based NHS England has announced that a consortium led by Nesta and the Health Foundation in partnership with Voluntary Voices (National Voices, Regional Voices, NAVCA and CSV), the Behavioural Insights Team and Newcastle University, has been selected to take forward this work to empower patients and engage communities in their own health and care. 2. Making the most of digital tools to give people more control over their care The National Information Board will support the development, diffusion and adoption of low-cost high-efficacy apps with a particular priority on mental health services, for example for cognitive behavioural therapy. The NIB, in partnership with the Behavioural Insights Team and Nesta, will start by launching a dedicated apps innovation prize process in mental health. The goal of the prize is to accelerate the creation and adoption of a next generation of mental health applications. The prize will focus on digital tools that have a measurable impact on mental health outcomes, using valid measures and improve the cost effectiveness and sustainability of mental health treatment. 3. Providing more support to carers 3

4 The five and a half million unpaid carers in England make a critical and underappreciated contribution not only to loved ones, neighbours and friends, but to the very sustainability of the NHS. To make this contribution, carers often make great sacrifices to support the people they look after. The NHS Five Year Forward View commits the NHS to find new ways to support carers, to build on the new rights created by the Care Act and to help the most vulnerable carers the approximately 225,000 young carers and the 110,000 carers who are themselves aged over 85. With input from carers themselves, leading charities, and partner organisations, NHS England has identified and developed ten principles that will help commissioners to deliver the level of care and support carers have told us they need. The work distils the latest research, case-studies and bestpractice which was collected at four evidence summits held across England. The principles are: 1) Think Carer, Think Family; Make Every Contact Count 2) Support what works for carers, share and learn from others 3) Right care, right time, right place for carers 4) Measure what matters to carers 5) Support for carers depends on partnership working 6) Leadership for carers at all levels 7) Train staff to identify and support carers 8) Prioritise carers health and wellbeing 9) Invest in carers to sustain and save 10) Support carers to access local resources This work forms part of NHS England s Commitments to Carers 3, published on 7 May, and has been undertaken in partnership with NHS Improving Quality and RCGP to develop a suite of products will help commissioners and practitioners to deliver what carers have said is important to them in ways that have been shown to be effective in practice. 5. Training for patient champions at all levels of the NHS could help facilitate engagement The initial scoping phase of Participation Academy was completed in October This provided an outline of the functions and requirements of the Participation Academy and identified opportunities and priority areas for development. A number of development activities are now underway including: Establishing a reference group, developing links with partners and further co production and engagement processes Development of initial structure for the Participation Academy. Collating existing content and identifying possible new content to be developed. Establishing the appropriate platform and technical specification for the Participation Academy. It is anticipated a basic prototype of the Participation Academy will initially be developed. 3 4

5 6. Commission NHS Citizen (that is patients and service users) to design a national process for co-production A specific Senior Co-production Lead role will work closely with the NHS Citizen team to support thinking, joining up and development of an NHS Citizen led Co-production model. Key approaches will include: Establishment of a citizen-led working group to oversee development of a co-production model to ensure that it is fully co-designed from the beginning and works in synergy with existing programmes. Build on existing knowledge and expertise to establish clear definitions of co-production identifying what this means for NHS England. Capture the learning and good practice in co-production. Highlight where co-production has worked particularly well and identify what are the common themes that have worked well. Develop proposals for a co-production toolkit and potential piloting across specific NHS England programmes. Develop a proposal for recruiting and training NHS Citizen Co-production ambassadors to test and support use of the Co-production toolkit. 7. Care should be patient-centred and holistic. This requires more joined-up thinking and services working together beyond silos. In this respect the role of care-coordinators could prove pivotal Integrated personal commissioning (IPC) 4 is a new voluntary approach to joining up health and social care for people with complex needs. NHS England, the Local Government Association (LGA), Think Local Act Personal (TLAP) and the Association of Directors of Adult Social Services (ADASS) are working with health and social care leaders to help build a new integrated and personalised commissioning approach which will, for the first time, blend comprehensive health and social care funding for individuals, and allow patients to direct how it is used. The goals of the programme are: People with complex needs and their carers have better quality of life and can achieve the outcomes that are important to them and their families through greater involvement in their care, and being able to design support around their needs and circumstances. Prevention of crises in people s lives that lead to unplanned hospital and institutional care by keeping them well and supporting self-management. Better integration and quality of care, including better user and family experience of care. The programme is aimed at groups of individuals who have high levels of need, who often have both health and social care needs. This will include: Children and young people with complex needs, including those eligible for education, health and care plans. People with multiple long-term conditions, particularly older people with frailty. People with learning disabilities with high support needs, including those who are in institutional settings or at risk of being placed in these settings. People with significant mental health needs, such as those eligible for the Care Programme Approach or those who use high levels of unplanned care. 4 5

6 How we will continue to involve citizens As set out in the Five-year Forward View, for a person-centred NHS that promoted self-care and personalisation to become a reality, citizens, patients and communities will need to be involved in every level of design and provision of the NHS at national and local levels. The NHS Citizen programme will continue to promote participation across NHS England s functions, while NHS England will continue to support CCGs to meet their legal duties to involve patients and for patients to be involved in the services they commission 5. Specifically for self-care and personalisation, The Coalition for Collaborative Care (C4CC) 6 is a group of organisations who have agreed to work together to improve support for people with longterm conditions. The aim is to ensure that people living with long-term conditions can access healthcare which focuses on the whole person, and where different organisations and communities work together with each individual, carer and/or family to achieve the best possible outcome. The Coalition's co-production group plays a central role in this work. The co-production group is a team of people with long-term conditions and their carers. The group works with the C4CC central team and partners to influence and co-design the work of the Coalition on an on-going basis

7 ANNEX A - Self-care and Personalisation As explained in the information pack provided by NHS England for this issue group, self-care and personalisation are part of an overall approach to enable and empower individuals and communities to take an active role in their own health and care. Self-care is about supporting people to develop the skills and confidence they need to look after themselves. A personalised NHS aims to support a person s rights to determine the course of their own life. The ambition is to join up care around people s holistic health and wellbeing needs. However, there are still many limits to how the system works in empowering patients and carers. This paper provides a brief response to each of the key issues identified below: 1. Developing the self-care agenda through a communal endeavour to unleash the power of people 2. Making the most of digital tools to give people more control over their care 3. Providing more support to carers 4. Training for staff to listen to patient needs and provide them with the required confidence and skills to manage and make decisions about their health and care 5. Training for patient champions at all levels of the NHS could help facilitate engagement 6. Commission NHS Citizen (that is patients and service users) to design a national process for co-production 7. Care should be patient-centred and holistic. This requires more joined-up thinking and services working together beyond silos. In this respect the role of care-coordinators could prove pivotal 1. Developing the self-care agenda through a communal endeavour to unleash the power of people NHS England will launch a new programme to effect this change through the commissioning system by: Demonstrating the value of individuals and communities in their own health and care and the impact of key approaches such as peer support and social prescribing; Developing key tools/resources on how to commission these approaches; Supporting partnership working between patients and professionals; Measuring and rewarding what matters (including patient and clinician activation); and Promoting adoption and spread of this agenda in partnership with local communities and/or communities of interest. This programme will run initially for , as per the scope of the proposed Realising the Value project, but would need further funding to support adoption and spread, beyond Making the most of digital tools to give people more control over their care 7

8 While linked to the above, NHS England will deliver an additional component, in collaboration with NESTA, to understand the impact of digital tools in the context of self-management support. This programme will aim to run concurrently in Providing more support to carers NHS England will aim to effect this change through its Commitment to Carers work programme, the key aims of which are: Raising the profile of carers; Education, training and support; Develop and deliver tools/resources on how to commission support for carers to develop knowledge, skills and confidence; Design and implement measures and incentives. In November 2014, NHS England will launch commissioning support principles, which will aim to: Increase the identification and recognition of carers; Provide good practice evidence for benefits of long-term funding for carers services; Reduce the number of carers who end up with poor health as a result of their caring responsibilities contributing to disability and frailty; Identify and share local examples of good practice. Develop case studies to exemplify the diversity of practice and communities. Produce commissioning support principles to inform commissioning process and decisions on services. 4. Training for staff to listen to patient needs and provide them with the required confidence and skills to manage and make decisions about their health and care This is covered by item 1, bullet point 3 - supporting partnership working between patients and professionals. Specifically, NHS England will work in partnership with key stakeholders to deliver a new programme to assess the current levels of health and care professional activation (using the Patient Activation Measures survey) and support their training and development, in approaches to partnership working ( ). 5. Training for patient champions at all levels of the NHS could help facilitate engagement The Participation Academy that NHS England is developing will be a vehicle for promoting training opportunities and learning networks, but won't be an organisation providing training. This would be provided through commissioned programmes such as the Expert Patient Programme and Patient Leadership training. NHS England will 8

9 build on existing work with patients and service users, working through NHS Citizen, to identify the most relevant training needs and how they can best be provided. 6. Commission NHS Citizen (that is patients and service users!) to design a national process for co-production Here we propose that NHS England will support the development of a national model for coproduction via the NHS Citizen approach, which will be taken forward by working through the coproduction arrangements being set up for Coalition for Collaborative Care, of which NHS England is a partner ( ). The model will be based on: research into the barriers of co-production; training for co-production right across different levels of the NHS, from GPs to commissioners and at national and local levels measurement and incentives. 7. Care should be patient-centred and holistic. This requires more joined-up thinking and services working together beyond silos. In this respect the role of care-coordinators could prove pivotal NHS England will: provide renewed focus to support commissioners to embed personalised care and support planning ( ); support delivery of personal health budgets - for people with continuing health care needs - who from October 2014 will have the legal right to have one, giving them more control of the care they need; launch the Integrated Personalised Commissioning Programme, which will provide opportunity to develop and test approaches to pool funding across health and social care for people who need the most support, through personalised care and support planning and the option of the personal budget ( ); and explore how we can promote and embed new roles, such care coordinator roles in partnership with Health Education England ( ) 9

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