Assembly Information Pack Foreword Headlines This is the first time NHS Citizen has undertaken the production of information packs. This pack has been created to help everyone taking part in the NHS Citizen Assembly discussions on how the NHS can improve self care and personalised services. NHS Citizen has commissioned NHS England to provide the content that has formed this document. This is additional information to use alongside your personal and professional experiences and knowledge. We would like to thank everyone who has been involved in pulling these packs together in a very short space of time. 25-40% of the population do not have the confidence and skills to manage their own health and care. People who have the knowledge, skills and confidence to take on that role are more likely to choose preventative and healthy behaviours, and have better outcomes. Communities have practical skills, knowledge, capacity and passion and the NHS should access them to become equal partners to improve health and wellbeing and reduce health inequalities. The 30 billion identified shortfall in NHS cannot be met through cuts alone. There is a need to invest in patients to increase patient participation and self-management. The NHS needs to: Build and understand awareness of how to support individuals, cares and communities in their own health and care Support culture change to share power and responsibility so that clinicians, patients and health service activities all work in a different way Link and connect with others such as the voluntary and community sector who can provide more than a medicine approach Key ways to achieve this: Shared decision making; a partnership between patients and NHS professionals Self-management support; tools to help patients choose healthy behaviours Personalised care and support planning; starting with what matters to the person and what they want to achieve A personal health budget; an amount of money to support a person s identified health and wellbeing needs Community centred and asset based approaches; recognising local expertise rather than focusing on trying to fix the problems
Self-care and Information Pack 5 Overview What do we mean by self-care/management and personalisation? Why do we need this now? How can we make this happen? An overview of key approaches What does it mean? Self-care/management 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/management is about supporting people to develop the confidence and skills to look after themselves in ways that are healthy, for example, exercising and eating a healthy diet. For people living with long term conditions (such as diabetes or a heart condition), this may include selfmanagement of aspects of their care such as pain management, carrying out blood tests or taking medication. Personalisation starts with what matters to you rather than what is the matter with you. A personalised NHS supports a person s right to determine the course of their own life; it joins-up care around people s holistic health and wellbeing needs, it recognises that there is more than medicine, and that one size does not fit all. Self-care/management and personalisation both depend on a fundamental transformation of the person caregiver relationship into a collaborative partnership 1. There are a number of ways in which self-care/management and personalisation maybe supported in practice: Shared decision making support Support for self-care/management (including tailored coaching, education, skills development and peer-support) Personalised care and support planning Personal health budgets, Personal budgets across health & social care Community centred and asset based approaches to health and wellbeing (including social prescribing) A brief description of these approaches and links to additional resources are covered later in this pack. 1 De Silva D, Evidence: Helping people help themselves, The Health Foundation, May 2011. Why do we need this now? We stand on the cusp of a revolution in the role that patients and also communities will play in their own health and care. Harnessing what I ve called this renewable energy is potentially the make it or break-it difference between the NHS being sustainable or not Simon Stevens 1
Information Pack 5 Self-care and Why do we need this now? With growing numbers of people living with multiple long-term conditions and rising budgetary pressures, there is strong consensus that the NHS needs to shift towards a more preventative, proactive and personalised approach, with much greater involvement of individuals and communities in their own health and care. But supporting people in their own health and care is not just the right thing to do; there are also strong health and economic arguments for doing this now. 1. People are arguably the greatest untapped resource within the NHS, managing their health and care on their own, the vast majority of the time 2. 2. People who understand their role in the care process and have the knowledge, skills, and confidence to take on that role are more likely to choose preventative and healthy behaviours, and have better outcomes and lower costs 3. 3. And people can be supported to take more control. Approaches that build skills and confidence and use peer-support work. And people who start at the lowest levels tend to improve the most, indicating that these approaches can challenge health inequalities 4. Reduced service use Able to work more Active and empowered patients Better disease management Informed decisions Lifestyle improvements e.g. diet More engagement with clinician Improved use of medicines 2 Corrigan P. DIY doctors: patients boost NHS s value, Health Serv J, 2009 Apr 30; 119(6154): 12-3. 3 Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood). 2013 Feb; 32(2): 2017-14. 4 Friedli L. Mental health, resilience and inequalities. Denmark: World Health Organization Europe 2009. 2
Self-care and Information Pack 5 Why do we need this now? Figure 1 The NHS Funding Gap 140bn 135bn 130bn 125bn 120bn 115bn 110bn 105bn 100bn 95bn Resources Costs 2013/14 2014/15 2015/16 2016/17 2017/18 2018/19 2019/20 2020/21 Source: A Call to Action - The Technical Annex, 2013 ~ 30bn The 30 billion identified shortfall in NHS cannot be met through pay and efficiency savings alone. There is a need to invest in the capacity of patients to create value, and this can be done through increased patient participation and self-management 4. Finally, the communities we live and work in and the quality of relationships we have with other people are in themselves important wider determinants of health and wellbeing 5. Assets within communities can be harnessed to improve health and wellbeing and reduce health inequalities 6. Commissioning using an assetbased approach allows the NHS to access the wealth of experience and practical skills, knowledge, capacity and passion of local people, and to exploit the potential for communities to become equal partners in their care. 5 The Marmot Review, Fair Society, Healthy Lives. The Marmot Review 2010. 6 A Glass Half-Full- How an Asset Based Approach Can Improve Community Health and Wellbeing: http://www.idea.gov.uk/idk/aio/18410498 How can we make this happen? Metrics Promoting patient demand Research & sharing best practice Clinical leadership Person centred care Workforce training & education Technology Commissioning Systems Approach Peer support Financial incentives 3
Information Pack 5 Self-care and Patient voices Name: Roger Age: 58 Experience: Roger has COPD and used a personal health budget to have portable nebuliser so he could lead a normal life and manage any attacks in situ, rather than frequent hospital admissions. He is rehabilitating through exercise, attending a local gym, using a Wii Fit at home and gardening, as he breathes better outdoors. His health has greatly improved and he is able to take less medication. I have a lot of auto immune problems which can cause brain fog and I found using the Ask 3 Questions leaflet really helped me to work through exactly what to ask; when to ask it and what to say and it actually shortened the time I spent with my GP and I got a lot more out of it. Name: Jean Age: 64 Experience: Jean has several long term conditions that have affected her day-to-day living. She found the idea of shared decision making very helpful. Name: Pete Age: 20 Experience: Pete has autism and type I diabetes. He has an integrated personal budget for health, social care and education. His blood sugar levels need frequent testing so his carer (chosen by him and his mother) attends college with him to do this, enabling him to continue his education. Pete has also been able to stay living at home rather than entering residential care, he has more opportunities for social interaction and is a happier young man. 4
Self-care and Information Pack 5 How can we make this happen? Realising the inherent potential of people in their own health and care could be the single greatest factor in improving our health and wellbeing and in sustaining our NHS. Despite this, evidence suggests that 25-40% of the population do not have the confidence and skills to manage their own health and care, and that the NHS does not currently work well for them 7. To bring about change, we will need to commission and provide services in a different way. This will be supported by: 1. Building understanding and awareness of how to support individuals, carers and communities in their own health and care and the value/benefits of doing so; 2. Developing key tools/resources to support the commissioning and provision of care and support which is personalised and builds on the capacity of individuals and communities; 3. Supporting culture change; 4. Aligning the system (including incentives); and 5. Measuring what matters. Building our understanding of how best to support individuals, carers and communities in their own health and care To support changes in commissioning and practice, we will need to grow our understanding of how to support individuals, carers and communities in their own care (across different groups, populations and life stages). In particular, we will need to understand the impact of key approaches in three dimensions: health and well-being; financial savings; and added social value (social, economic, environmental and well-being). Developing key tools/resources to support the commissioning and provision of care and support which is personalised and builds on the capacity of individuals and communities We will also need to translate this learning into practical tools and resources to support commissioners and providers, for example by: Developing guidance to define what good, personalised, digital care plans and planning processes look like Developing patient decision aids for shared decisions about treatments Supporting culture change To support implementation, health and care professionals, commissioners etc. will all need to work in a different way. A common theme emerging from implementation studies is that there are very real social and psychological challenges to doing this it is not about bolting on, it is about fundamentally reframing clinicians and patients roles and health service activities 8. This is very difficult. It means sharing power and responsibility between people and their professionals - a major culture change which has been signalled but has not yet happened. 7 Supporting people to manage their health: An introduction to Patient Activation, King s Fund, May 2014, P7 (Hibbard and Cunningham 2008) 8 Evaluation of MAGIC Co-creating Health programme Phase 2: Sustaining and spreading self-management support, The Health Foundation, Sep 2013. 5
Information Pack 5 Self-care and How can we make this happen? National organisations cannot order a shift in power. However, there is a clear role for national programmes to support that shift, for example by: Building coalitions like the Coalition for Collaborative Care. Training the NHS workforce in new approaches to partnership working, such as health coaching and motivational interviewing (this is as much about changing the culture and behaviours of our current workforce as it is those that are coming through the education system). Development of new staff roles to supplement or even replace some of the traditional professions. Aligning the system (including incentives) Change will also depend on the alignment of the main drivers for change including: individuals and communities themselves; workforce; financial levers and incentives; decommissioning (including incentives in the system for decommissioning health care that is no longer needed); and new partners and providers from voluntary and community services 9. The voluntary and community sector offers the means to provide a more than medicine approach and is able to reach people and communities that traditional services leave behind. But they often exist on the fringes of mainstream practice and are not always embedded into local health systems. NHS England and partners are using the House of Care model as a metaphor/checklist for a whole system approach. The House of Care relies on four key interdependent components, all of which must be present for the goal, person-centred coordinated care, to be realised: 1. Engaged, informed individuals and carers enabling individuals to self-manage and to know how to access the services they need when and where they need them; 2. Health and care professionals working in partnership listening, supporting, and collaborating for continuity of care; 3. Commissioning which is not simply procurement but a system improvement process, the outcomes of each cycle informing the next one; 4. Organisational and clinical processes structured around the needs of patients and carers using the best evidence available, codesigned with service users where possible. 9 Corrigan P. DIY doctors: patients boost NHS s value, Health Serv J, 2009 Apr 30; 119(6154): 12-3. 6
Self-care and Information Pack 5 How can we make this happen? An overview of key approaches Measuring what matters Measuring and reporting has often been used by commissioners as a catalyst for shifting the focus of the NHS. Effective measures of how well commissioners and providers are supporting individuals, carers and communities to be involved in their health and care will be essential in helping galvanise all parts of the system to make this fundamental shift in the approach to care. In the US, innovative delivery systems are measuring the knowledge, skills and confidence of people to improve and individualise their care and strengthen their role in improving outcomes. For example, the Pacific Northwest, PeaceHealth system uses patient activation scores in combination with clinical information to tailor care to people s needs. This takes into account people s clinical profiles, as well as their ability to manage their health 10. NHS England is working with a small network of CCGs, the Renal Registry and the Health Foundation to test the feasibility of using such approaches in England. While these approaches are very much in development, a better understanding of how to recognise people s skills and abilities will provide a necessary first step in harnessing people s potential. The use of such approaches may also provide a powerful tool in identifying people with greater needs, in tackling health inequalities and in targeting resources more effectively. 10 Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood). 2013 Feb; 32(2): 2017-14. Shared decision making is described as both a philosophy and a process, requiring partnership between patients and professionals working together to select tests, treatments and support packages based on patient preferences, clinical experience and research evidence. This often necessitates a shift in the perceived roles of patients and professionals, the provision of evidence based information about options, outcomes and uncertainties, and support and feedback to ensure that patients and professionals are actively engaged. 11 Several studies show that people choose different treatments after they become better informed. In addition, there are wide gaps between what patients want and what doctors think patients want. Mulley refers to this as the silent misdiagnosis. There are now a number of approaches to support people to make decisions about their health and care. These range from passive information sharing at one end of the spectrum to decision support tools and more active planning and support at the other. A Cochrane review of over 80 randomized controlled trials demonstrates that decision tools can lead to people having greater knowledge, more accurate risk perceptions and greater comfort with decisions 12. This review also found the use of shared decision making leads to an average 20% reduction in surgical interventions. It suggests that when presented with choice and information, many people choose less invasive procedures. 11 Da Silva D, Helping people share decision making, The Health Foundation, June 2012. 12 O Connor AM, Stacey D, Entwistle V et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev, 2009; 3: CD001431 7
Information Pack 5 Self-care and An overview of key approaches However, despite the benefits of decision aids, there are very few examples of their successful implementation, in the UK. Evaluation of the Health Foundation s Magic Programme13 showed that there are social, psychological and system challenges to the implementation of shared decision making. The study also provides practical learning about how to overcome them. The evaluation report describes the factors that can result in the light bulb moment for clinicians when they understand what shared decision making really is, patients taking decisions that reflect their values and preferences, and organisations putting in the infrastructure and support necessary for the culture change. Self management support can be viewed in two ways: as a portfolio of techniques and tools that help patients choose healthy behaviours; and a fundamental transformation of the patient caregiver relationship into a collaborative partnership (De Silva 2011). A range of initiatives has evolved to support self-management, with passive information provision at one end of the scale and more proactive approaches that more actively seek to support behaviour change and increase self-efficacy at the other. Approaches that tailor support to the person s level of activation, that build skills and confidence, and use peersupport have a positive impact on activation as well as other key outcomes improvement in health outcomes, quality of life and health-related behaviours, and reduced hospital readmissions, overnight hospital stays, and use of the emergency services. Encouragingly, people who start at the lowest activation levels tend to increase the most, indicating that there is opportunity to tackle health inequalities and challenge the inverse care law14. Evidence of cost savings have also been demonstrated through the Expert Patient Programme, which offers peer led educational training and support. A randomised controlled trial of 629 patients found that planned and unplanned hospital attendances dropped by 6%, alongside reductions in the use of primary care and length of stay. Corresponding reductions in the cost of healthcare were at 5%. However, while there is a growing body of research, many limitations and gaps remain. Although it appears that several different types of interventions are effective, there is no indication which are most effective or which will work best with specific patient populations. More controlled trials are needed to develop this evidence base. Additionally, a number of innovative strategies have been tested to support implementation of self-management support in the UK, including the Health Foundation s Co-Creating Health Programme, and primary amongst the evaluation s conclusions is that there needs to be a strategic, whole-system approach to implementation. This is not about bolting on - it is about fundamentally reframing clinicians and patients roles and health service activities15. Personalised care and support planning is a new approach to the way that people with long term conditions and disabilities work together with their health and social care professionals, and/or other supporters. It starts with what matters to 8 13 The MAGIC programme: evaluation, The Health Foundation, April 2013 14 Rogers A, Bower P, Gardner C et al. The national evaluation of the pilot phase of the Expert Patient Programme. Final Report, National Primary Care Research and Development Centre, 2007. 15 Evaluation of MAGIC Co-creating Health programme Phase 2: Sustaining and spreading self-management support, The Health Foundation, Sep 2013.
Self-care and Information Pack 5 An overview of key approaches the person and what they want to achieve. It identifies the best treatment, the right care and support and the actions they can take themselves to help get there - National Voices. Personalised care and support planning is considered a system precondition for, and a central component of, self-management support. It is where the whole system can come together at the individual level and provide an opportunity for taking a holistic view, for partnership, enablement and personalisation. The NHS Mandate includes a commitment that everyone with a longterm condition, including those with mental health problems, are offered a personalised care and support plan that reflects their preferences and agreed decisions. It is worth emphasising that it is the active process of different conversations between clinician and patient (i.e. planning) that are important, and not the final document (i.e. plan). There is no single standard process or methodology for developing a care and support plan, even as National Voices have developed a guide with some common principles16. The Year of Care programme offers a detailed understanding of implementation of personalised care and support planning across health communities, along with linkages to effective microto macro-commissioning. Learning from the pilot found improvements for people, professionals and practices - people reported improved experience of care and real changes in self-care behaviour; professionals reported improved knowledge, skills and greater job satisfaction; while practices reported improvements in team work and productivity17. Evidence on the impact of adult asthma self-management education on health care utilisation and costs also suggests that care and support planning could be a key component in reducing unplanned admissions for patients with asthma18. However, despite numerous examples of innovation, spread across entire health communities has been slow. A combination of consistent health policy, effective incentivisation and strong clinical leadership are needed for wholesale implementation and to allow the clear potential benefits to be fully realised. These experiences have clarified that it is the process of care and support planning that is important, rather than the care and support plan itself. A personal health budget is an amount of money to support a person s identified health and wellbeing needs, planned and agreed between the person and their local NHS team. Our vision for personal health budgets is to enable people with long term conditions and disabilities to have greater choice, flexibility and control over the health care and support they receive. The person with the personal health budget (or their representative) will: be able to choose the health and wellbeing outcomes they want to achieve, in agreement with a healthcare professional know how much money they have for their health care and support be enabled to create their own care plan, with support if they want it be able to choose how their budget is held and managed, including the right to ask for a direct payment 16 National Voices Care and Support Planning guide, Mar 2014. http://www.nationalvoices.org.uk/sites/www.nationalvoices.org.uk/files/ guide_to_care_and_support_planning_final.pdf 17 Year of Care: Report of findings from the pilot programme, June 2011 18 Purdy S. Avoiding hospital admissions - What does the research evidence say?, The King s Fund, Dec 2010. 9
Information Pack 5 Self-care and Personal Health Budgets What difference have they made? Regular Yoga helps me manage my anxiety and means I see less of my doctor. I paid for an APS machine... it means I can get out and live! My budget enables me to do more for my children. Good person centred planning means that now my housemates and staff respect my routines. A years supply of tracheostomy tubes allow me to manage my own care and stay out of hospital. I bought a Sat Nav for 60. It means that I can still find my way around, and help others get out and about. Help with travel expenses meant we could care for our grandfather at the end of his life. My budget meant that I could keep my baby with me, despite needing a heart transplant. Taking control of my care means that I feel a whole lot better about myself. The odd job man helps me manage to stay living in my flat. This is why I work for the NHS! My new washing machine means looking after my wife is easier. Original illustration by Pen Mendonca 10
Self-care and Information Pack 5 An overview of key approaches be able to spend the money in ways and at times that make sense to them, as agreed in their plan Personal health budgets were piloted between 2009 and 2012. The independent evaluation19 and wider learning from pilot sites and early implementers have demonstrated that people with higher levels of need benefit most, irrespective of their health conditions or diagnosis. They enable people to better manage their health, improve quality of life and reduce unplanned care such as hospital admissions, A&E attendance and use of primary care services. with sites selection and early development work happening before then. Community centred and asset based approaches Traditionally, the deficit approach focussed on problems, needs and deficiencies in communities, such as deprivation and illness. This resulted in commissioners trying to design services to fill the gaps and fix the problems. This may have led to individuals and communities feeling disempowered and dependent, becoming passive recipients of services rather than active participants in their own health and wellbeing. The NHS Mandate sets an ambitious objective that people with long term conditions who could benefit from one will have the option to hold a personal health budget, including direct payments. As a first step in their introduction from April 2014, people receiving NHS Continuing Healthcare have the legal right to ask for a personal health budget, including a direct payment. From October 2014 this will be strengthened and this group will benefit from a right to have a personal health budget. Building on personal health budgets and personal budgets in social care, in July 2014 NHS England announced plans for the Integrated Personal Commissioning Programme. The programme will allow funding to be pooled for key groups across local authorities, CCGs and specialised commissioning - testing new commissioning and funding models including joined-up capitated funding approaches rather just rewarding service activity. It will explore how individuals can have more control over how this funding is used through personalised care and support planning, individualised commissioning and personal budgets. The programme will start in April 2015, On the other hand, an asset based approach can also work at the community level to build resilience, strengthen community networks and recognise local expertise20. The community assets that can be tapped into include: practical skills, capacity and knowledge of local residents; networks and connections in a community, the social capital, including friendships and neighbourliness; effectiveness of local community and voluntary associations; resources of public, private and third sector organisations available to support a community; physical and economic resources of a place that enhance well-being. Using this approach, commissioners can re-evaluate how services are delivered in a locality and to build upon the strengths that already exist. It recognises the wealth of experience and practical skills, knowledge, capacity and passion of local people, and the potential for communities to become equal partners in the co-production of better outcomes. This will bring about real and sustainable change with communities becoming equal participants in their own health and wellbeing. 19 www.phbe.org.uk 20 Foot J, Hopkins T. A Glass Half-Full - How an asset based approach can improve community health and wellbeing, Improvement and Development Agency, 2010. 11
Information Pack 5 Self-care and Further information King s Fund report on patient activation, May 2014 Supporting people to manage their health http://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/supportingpeople-manage-health-patient-activation-may14.pdf Evidence for supporting self-management, National Voices, 2014 http://www.nationalvoices.org.uk/sites/www.nationalvoices.org.uk/files/supporting_ self-management.pdf Evidence for supporting shared decision making, National Voices, 2014 http://www.nationalvoices.org.uk/sites/www.nationalvoices.org.uk/files/supporting_ shared_decision-making.pdf Person-centred care Resource Centre at the Health Foundation http://personcentredcare.health.org.uk/ Integrated Personal Commissioning programme, Sep 2014 (for integrated personal budgets) http://www.england.nhs.uk/wp-content/uploads/2014/09/ipc-demonstrator-prospectus. pdf Personal health budgets website http://www.personalhealthbudgets.england.nhs.uk/ Personal Health Budgets stories http://www.personalhealthbudgets.england.nhs.uk/topics/toolkit/howphbswork/ Stories/ Evaluation of personal health budgets http://www.personalhealthbudgets.england.nhs.uk/topics/latest/resource/?cid=8019 No Assumptions A narrative for personalised, coordinated care and support in mental health by NHS England, Think Local Act Personal, and National Voices, Aug 2014 http://www.thinklocalactpersonal.org.uk/_library/makingitreal/ NoAssumptionsFinal27_August.pdf Getting serious about personalisation in the NHS, Think Local Act Personal, Sep 2014 http://www.thinklocalactpersonal.org.uk/_library/resources/coordinatedcare/final_ TLAPGettingSerious_1.pdf Kings Fund report on Making Shared Decision Making a Reality http://www.kingsfund.org.uk/publications/making-shared-decision-making-reality NESTA s People Powered Health Business Case http://www.nesta.org.uk/library/documents/pphbusiness_case.pdf Patient Information Forum s (PIF) Making the Case for Information http://www.pifonline.org.uk/products-page/product-category/making-the-case-forinformation-full-report-download/ Supporting people to make informed decisions about their health and care: learning from the MAGIC programme, Health Foundation Oct 2013 http://personcentredcare.health.org.uk/resources/supporting-people-make-informeddecisions-about-their-health-and-care-learning-magic Patient Decision Aids http://sdm.rightcare.nhs.uk/pda/ A narrative for person-centred coordinated care, National Voices/TLAP/NHS England, I statements http://www.england.nhs.uk/wp-content/uploads/2013/05/nv-narrative-cc.pdf 12
Self-care and Information Pack 5 Views from Gather The issues for this Assembly meeting were drawn from a public conversation online during August, which we used to test an early version of the NHS Citizen Gather process. Gather, is one of the elements that makes up NHS Citizen. NHS Citizen has three connected parts: Discover - find out what people are saying about the NHS Gather have a discussion about what is important to you Assembly - work with others to make the NHS better The 80 issues raised on the Gather site were used to define the five issues that the Assembly is now considering. Once the five issues had been identified, participants in the Gather test had an opportunity to add to their previous points followed by a week of voting which was open to all - each participant who registered was able to vote on whether they agreed or disagreed on each issue. It is critical to remember that this has been a short and stripped down test for crowdsourcing issues and comments, so the discussions were not as detailed as they would be in the final version of NHS Citizen. These are the views of only those who took part and are not the view of the public as a whole. The points raised for Access to Services are shown below, in order of popularity, with the number of votes for and against shown alongside. These do not represent the views of NHS Citizen or NHS England. 10 0 9 0 9 1 7 0 Self-care. Prevention should be our vision. Prevention should be our vision. We (say 50 million) need to take self-care to our hearts, understand the principles and practices, know of the local applications/ initiatives, and apply them to ourselves. Standards for consistent application of continuing care. Consistent standards need promoting across the country as the discussion develops about the nature of health and social care and how we fund them. Culture Change for Patients. Patients and people at risk need to be given structured training and support to accept responsibility for; Self care to prevent ill health, Self management to control long term conditions, Accessing Information to exercise patient s choice. Involve patients in management of their own healthcare. Because the more patients are involved (in a truly active way) in the management of their own healthcare (especially in the case of chronic conditions) the better the health outcomes and the more the benefits to patients but also the more the savings for the NHS. 13
Information Pack 5 Self-care and 7 0 6 0 5 0 5 0 4 0 4 0 Educational pain self-management. There are currently 14million people in the UK living with persistent pain http:// www.policyconnect.org.uk/cppc/about-chronic-pain A rise of 7million since the previous national pain audit of 6years ago. To-date there is little evidence there is any educational pain self-management both in acute/primary care or on the Internet. Therefor I hope this is put on the agenda at the NHS AGM. Urgent and emergency care. What could the NHS do to help citizens decide where the best place is to go to address their urgent and emergency care needs. Joined up thinking. At the moment the NHS is too diversified, and there is no over all thought, about how continuity of care can be achieved with in the NHS. Patients with many conditions are pushed from pillar to post, which costs lives, and the NHS money. It also restricts what the NHS can achieve due to consultants and others attending unnecessary appointments. Publishing headline data. Education of the public by the NHS and not the media. Communication with the public about the services (nationally and locally) the number of patients and the associated costs need to be published in a format that is easy to understand. Modelling of trends will give evidence to leaders and the public of what future care costs and services will be required and help transition the NHS to meet those needs. Choice vs. safety. People seem to have made the assumption that we want to choose where we are cared for when ill. That we should be offered choice a long the patient pathway. Following extensive experience of receiving care in the last three years I can honestly say that most of the choices offered to me were false. Upscaling peer support and making it an integral part of NHS. Friends and families and whole local areas will join in if they see meaningful activities and clear decisions evolve from that lived experience. There are huge barriers from professionals who fear loss of their control but health outcomes are something to be achieved in partnership, and everyone has a right to choose how to go about achieving their own health outcomes: doctor knows best or informed/supported choice & control? Bring it on! 14
Self-care and Information Pack 5 4 1 3 1 2 2 Training patients & public as effective lay representatives. Many people attend groups and committees, ostensibly, as lay representatives and are unable to make an effective contribution because they do not understand the bigger picture. Some are there because of personal issues and some are there so they can impress their friends. I am not aware of any, validated, education programmes. Health Accounts. Each citizen will have a Health Account which belongs to him or her and provides the citizen or an intermediary complete access to the account holder s state of health, what health services are currently being used, the history of use and help in finding other services. Health Accounts will be provided by a number of organisations in accord with standards set by NHS England and HSCIC. Each Account will be unique and so can hold information from eg smartphone apps, wearable monitors, etc. Training for Patient and Public Lay Representatives. Lay representatives provide a vital contribution to the future development of the NHS. They provide insight and are experts in experience. Training and support need to be provided to optimise this essential source of knowledge and opinion. 15