Written evidence from the Department of Health, NHS England and Health Education England (LTC 01)

Summary of the evidence

• The Government is committed to improving care for people with Long-Term Conditions so that they are able to enjoy an independent, fulfilling life, and have the support needed to manage their health. The Secretary of State for Health has identified this as a particular priority area for action, so welcomes the Health Select Committees focus on this important area.

• Currently, approximately 70% of the health spend in England is on 30% of the population who have long term conditions (LTCs). The number of people with long term conditions is rising significantly and by 2016 there will be an additional cost pressure on the NHS of around £4bn p.a. (2010 baseline). The majority of this cost pressure comes from continued unplanned use of acute hospital services. NHS England will need to work with partners to shift spend to support more primary and community based care and prevention

• The mandate from the Government to NHS England sets specific objectives related to LTCs that NHS England must meet. Domain 2 of the NHS Outcomes Framework sets out an overarching indicator on LTC; ‘Health-related quality of life for people with long term conditions

• NHS England will work closely with Local Government as well as with other partners (including CQC, Monitor, Public Health England,) to support Health and Wellbeing Boards, and Clinical Commissioning Groups in focussing on improving health related quality of life for people with long term conditions.

• There are good examples of best practice in commissioning person-centred coordinated (integrated) care for people with long term conditions, which are being shared through mechanisms in both health and social care.

• NHS England will focus on parity of esteem for mental and physical health services, whilst promoting service improvement that benefits people with long term conditions and multiple morbidities. Preventative strategies for long term conditions (including reduction in obesity, smoking, and alcohol consumption and increasing physical activity) are priorities.

• Personalised services, including care planning, along with patient education, shared decision-making, and personal health budgets, improve the participation of people with long term conditions in planning their care in partnership with health professionals.

• Together with our national partners in care and support the Department of Health is working to break down barriers to delivering integrated care and support that offers the potential to make measurable improvements in patient and service user experience, outcomes and system efficiency.

The challenge of long term conditions

1.                It is estimated that over 15 million children, adults and older people in England live with at least one long term condition (LTC)[1]. This figure is set to increase to around 18 million by 2025.[2],[3] People with LTCs are high users of health services. They account for 55% of all GP appointments, 68% of all outpatient and A&E appointments, and 77% of all inpatient bed days.[4] Around 70% of the total health and care spend in England is associated with caring for people with LTCs.[5]

2.                Overall prevalence is strongly linked to age. Only 14% of those under 40 report having an LTC compared to 58% of aged over 60, including 25% of over 60s having two or more. There is also a strong link to inequalities; compared to the highest social class (1), people in the lowest social class (5) have 60% higher prevalence of LTCs and 30% higher severity of conditions.[6]

3.                The annual health and social care cost per person per year for a person without a LTC is £1000, this rises to £3000 for those with one LTC, and £8000 for those with three.[7]

4.                Without changes to services, the costs of delivering care to people with LTCs will continue to increase. If there is failure to improve the prevention and management of care for people with LTCs it is estimated that by 2016 there will be an additional cost pressure on the NHS of around £4bn p.a. (2010 baseline). The majority of this cost pressure comes from continued inappropriate and unplanned use of expensive acute hospital services.

The new health structure, mandate and outcomes frameworks

5.                The Department will work with NHS England, Local Authorities, Public Health England, Monitor, Health Education England and the Care Quality Commission to support continuous improvement in outcomes for people living with LTCs. The mandate from the Government to NHS England sets specific objectives related to LTCs that NHS England must meet. The NHS will work to support all people with LTC and their carers by:

• Helping people feel supported to manage their own LTCs in partnership with their healthcare professionals to optimise their functional abilities and quality of life;
• Reduce the time people with LTCs spend in hospital by promoting the co-ordination and continuity of care between local health care providers, local councils, community and carers organisations;
• Lead the drive for a ‘parity of esteem’ between mental and physical health services by ensuring more effective and equitable commissioning of services, including for people with mental ill health, those with learning disabilities and for people with dementia.

6.                During 2012/13, Clinical Commissioning Groups (CCGs) set ambitions for the improvements they intend to deliver locally, including how best to support people with long term conditions. They will be held to account for the outcomes they achieve through the CCG Outcomes Indicator Set. Improving commissioning for people with LTCs will therefore form a vital element of CCGs work to secure efficiency and value for money and better outcomes for their patients.

7.                Local public health services also have a major role to play in preventing LTCs through actions such as reducing rates of smoking and obesity, and in tackling alcohol and substance misuse problems. These preventative activities are the responsibility of Health and Wellbeing boards and other partners such as Public Health England.

8.                Health Education England is responsible for ensuring that the health sector has the right numbers of appropriately educated and trained staff to treat and care for the growing numbers of patients with LTCs in order to deliver high quality services. This will be reflected in the approaches to workforce planning as well as workforce development, education and training adopted by Health Education England.
9.                Health Education England will be looking specifically at the impact of the growing numbers of people with dementia and the provision of training for existing staff, not just the training of newly registered professionals. Training will need to reflect providing support for families and patients to manage dementia, as well as preparing NHS staff to diagnose, treat and care for those with dementia. Training and development will need to focus on early diagnosis of symptoms and this will include training for staff to enable them to spot the early signs of dementia.

Evidence on the specific issues raised by the Committee:

The scope for varying the current mix of service responsibilities so that more people are treated outside hospital and the consequences of such service re-design for costs and effectiveness

10.             NHS England will encourage CCGs to commission a broad range of services in order to manage people with an LTC outside hospitals.

11.             Best practice supports early diagnosis of LTCs. This can help avoid patients presenting late as emergency attendances or admissions. Many of these admissions or attendances could be avoided with improvements to simple early recognition and response models, opportunistic and systematic identification of risk, and appropriate assessment, diagnosis and support for those with conditions sensitive to ambulatory care. Early diagnosis can also lead to better treatment and management and halt or slow progression of disease.

12.             There is also accumulating evidence that properly coordinated and integrated care management can reduce use of acute services, especially for urgent care which is a major driver of cost. Pilots in Torbay,[8] Greenwich,[9] and Gnosall (Staffordshire)[10] showed reductions in acute and/or social care usage. This mirrors the international experience with North American healthcare organisations which operate vertically and horizontally integrated care models, such as Kaiser Permenante and The Veterans Administration.

13.             Integration of services will also require integration of records, either through patient-controlled records or through streamlined data-sharing in different care contexts. NHS England is prioritising the use of information technology and patient controlled records to enable patients to better experience coordinated care. Medicines optimisation and increased involvement of the pharmaceutical profession in the delivery of services will also act to provide better community-based care. The innovation of risk stratification and ‘virtual wards’ aims to identify patients before unnecessary admissions and provide appropriate assessment and treatment in the community.

14.             To deliver this will require the right skills and capacity in community based health and social care services.

The readiness of local NHS and social care services to treat patients with long term conditions (including multiple conditions) within the community

15.             Addressing the challenges presented by LTCs will require major changes in professional mindsets and behaviours and public attitudes.

16.             Many patients with long term conditions can largely manage themselves with the right support and a few hours of contact each year from primary and specialist care. Self-management and education is encouraged as best practice in LTCs, working alongside assistive technology and practical support. For example, all renal units in England now provide the option of home dialysis, allowing patients and carers greater flexibility in managing their treatment as well as reducing transport costs and reliance on health care providers.

17.             The NHS will build on past and current work in order to promote good practice such as ‘Right Care’ and enhanced recovery programmes which place the emphasis on patients’ health results (rather than the volume of services) and support clinical leaders to identify unexplained variation. These new models of commissioning and contracting can be used to facilitate a population-based integrated approach to commissioning services.

The practical assistance offered to commissioners to support the design of services which promote community-based care and provide for the integration of health and social care in the management of long term conditions

18.             The 2010 Spending Review set out substantial funding, up to £1bn per annum by 2014/15, which would be transferred from the NHS to local authorities to specifically benefit social care and improve health outcomes. The Government have made additional investments in priority services such as £300m per annum between 2012–15 for reablement services and a £100m one-off allocation to Primary Care Trusts in December 2012, for transfer to Local Authorities to help reduce delayed transfers of care. Whilst some of this funding has been used to maintain eligibility for social care, the majority has been used to support preventative measures, including integrated services, reablement and early discharge from hospital.

19.             The national partners have formed an Integrated Care and Support Working Group including: the Department of Health, NHS England, Monitor, Public Health England, the Association of Directors of Adult Social Services, the Association of Directors of Children’s Services and the Local Government Association. The national partners are working together to co-produce a framework document on integration for publication in May 2013. The framework will include a focus on improving outcomes and experiences for individuals, the challenges facing localities, the national offer of support, and how we will monitor progress.

20.             As part of this collaboration, the national partners are working to enable and encourage localities to innovate and experiment in ways that will deliver integrated and joined-up care and support at pace and scale. Together the national partners are developing the concept of ‘pioneers’ who will act as exemplars to support the rapid dissemination and uptake of lessons learned across the country.

21.             The NHS will have a clear focus on supporting integration and addressing the challenge of co-morbidities by using policy and commissioning levers to support management continuity and building on the GP practice to support relational continuity. The publication of the Common Purpose Framework and the development of NICE quality standards support this new approach.

22.             The NHS will support the effective local commissioning of LTCs by:

•              Working with Monitor to develop currencies and prices that support improved outcomes for people with long term conditions;

•       Establishing successful networks and partnerships with the third sector, social care and user organisations;

•              Supporting CCGs and other partners at local Health and Well Being Boards (HWB) to address the prevention of LTCs in partnership with Local Authorities and local community action.

23.             Further, NHS England (with NHS Improving Quality) will work with commissioners and providers to spread existing best practice.

24.             By way of example, in the Wirral 52% of urgent admissions were deemed inappropriate, and data indicated that GP referrals to hospital for urgent care and admission rates to residential care from hospital were high. An admissions prevention service was therefore initiated. Benefits of the service included:

•              Improved service user assessment with goals and outcomes agreed with providers;

•              A shift from bed-based services to supporting people at home;

•              Better value for money by making better use of existing partnership resources.

25.             In Lancashire, elderly people with mental health problems have access to intensive short term support to older people. This service dramatically reduced use of acute services and supported early discharge. The key feature of the model is that specialist staff from mental health work alongside care staff to role model best practice care.

26.             A practice in Gnosall, Staffordshire, serving a population of 8,500, by taking a proactive approach to care of the elderly, has reduced predicted costs by £450 000 with fewer people admitted to hospital and those that were having reduced length of stay. This was attributed to the practice having implemented a comprehensive assessment and simple, agreed and person centred care plan confirmed in a letter shared with the patient and family.

The ability of NHS and social care providers to treat multi-morbidities and the patient as a person rather than focusing on individual conditions

27.             Patients should not be seen as diagnoses or collections of conditions but as people living with these conditions. Increasingly people have co-morbidities, requiring input from a number of different health and care professionals; the health and care system needs to be geared up to support the whole person, considering their needs within an holistic context. This approach requires support from a wide range of stakeholders as it is a fundamental shift in emphasis from a disease focussed to a person centred system.

28.             Clinical decision-making is more difficult in people with multi-morbidity because clinicians and patients often struggle to balance the benefits and risks of multiple recommended treatments (the use of polypharmacy in people with long term conditions brings accordant risk of medication errors and resulting injury or death), and also because patient preference rightly influences the application of clinical and economic evidence. The majority of people with an LTC have more than one, and individual levels of disability may vary irrespective of the number of co-morbidities identified (and the severity of illness). Recognising this variation in need is key to the delivery of personalised care.

29.             The NHS will promote and support:

• The use of evidence based assessment and holistic care planning across multi-disciplinary teams;
• Proactive identification of people at risk, or with additional LTCs, to encourage improved management;
• The deployment of staff skilled in motivational interviewing, shared decision making and the promotion of effective self-care, and the use of technology where appropriate such as telehealth and telecare;
• Integrated teams that work effectively together without the constraints of professional or organisational boundaries;
• The use of advanced care planning as a tool to reduce avoidable admissions and to enable more people to die at home.

30.             NHS England will support the piloting of personalised, participative care planning, and learning from these pilots will be shared with CCGs and will contribute to the evidence base regarding the management of people living with multi-morbidities.

Obesity as a contributory factor to conditions including diabetes, heart failure and coronary heart disease and how it might be addressed

31.             Obesity prevalence in England remains high. Approximately 1 in 4 adults and 1 in 5 children aged 10 to 11 are now obese. Obesity is a major risk factor, for example in men the risk in Type 2 diabetes (5 times relative risk), cancer (e.g. 3 times relative risk for colon cancer) and heart disease (2.5 times relative risk).

32.             Tackling obesity requires a multi-agency approach at a national level and across local health communities. In October 2011 the Government published Healthy Lives, Healthy People: A call to action on obesity in England which sets out a national approach to tackling obesity and the role of key partners. The Call to action includes new national ambitions for a downward trend in excess weight in adults and children by 2020 and includes a commitment to help people improve their diet and to be more active, through key initiatives such as the Change4Life campaign and the Public Health Responsibility Deal.

33.             Through the Public Health Responsibility Deal, businesses have signed up to pledges to reduce and cap calories, salt and trans-fats, and increase uptake of fruit and vegetables, as well as label calories when eating out. In addition, the Government is working with the devolved administrations to finalise details of the new Front of Pack labelling system. This approach to front of pack nutrition labelling will help achieve greater consistency and clarity and help consumers make healthier food choices.

34.             Other national programs for early identification of obesity include the National Child Measurement Programme and NHS Health Checks. Local Authorities have new powers and funding to help them meet their public health responsibilities. These include commissioning weight management services so that people receive the support they need to maintain a healthy weight and reduce their risk of developing long term conditions. Public Health England will support Local Authorities with their new role.

35.             The NHS will contribute to tackling obesity and its associated inequalities by “making every contact count” and seeking to support healthcare users in making the necessary lifestyle changes. Primary care will play a central role in providing and signposting a range of integrated interventions, from purely preventative, through brief advice on weight loss, through to weight management services and ultimately surgery. Specialist commissioning for severe and complex obesity will enable appropriate and equitable access to bariatric surgery.

Current examples of effective integration of services across health, social care and other services which treat and manage long term conditions

36.             Where localities have succeeded in integrating care and support, too often it has been despite the national system rather than because of it. This is why the national partners are coming together to tackle those barriers and allow locally-led integration to flourish. There are no ‘one size fits all’ blueprints for integrated care and support models. Each locality needs to develop the right solution for their local population and circumstances. There are however a number of great examples of integrated care and support across the country:

37.             One example is Torbay. Torbay was one of the first areas in the country to become a Care Trust and benefit from full structural integration of health and social care. ‘The Torbay model’ is an early example of excellence, and of genuine innovation.

38.             The Care Trust was created to remove the barriers that existed between health and social care services, and to deliver better and more coordinated outcomes for older people who are heavy users of local services. For each health and social care team, the focus is on knowing their population, concentrating on the most vulnerable, and managing their care in a proactive and integrated manner. This was achieved by co-locating staff and enabling them to work together, improve communication and arrange timely patient/client care. GPs became the single point of contact for all services with a single assessment process created to reduce fragmentation, avoid unnecessary appointments and streamline access to health and care services. This enabled GPs to plan care packages for the most complex and vulnerable patients and coordinate discharge from hospital. Joint budgets were created which pooled funding between adult social care and NHS Community Services. This simplified decision-making, overcoming the issue about which service provider pays and ‘buck passing’.

39.             Torbay adopted a unique approach by developing a notional/fictional character called ‘Mrs Smith’, a typical user of health and social care in Torbay. This helped professionals and managers to focus on how resources and services are being used to meet her needs.

40.             The results of integration have had a significant impact in the local health and social care community. There is now strong evidence from a range of commentators, including the King’s Fund and Nuffield Trust, of improved performance over a range of indicators in the Torbay area, including:

• Reductions in emergency bed day use in the over 65s and over 75s
• Delayed transfers of care from hospital have been reduced to negligible levels and this has been sustained over a number of years
• Increase in the use of home care services and a decrease of people in social care funded residential and nursing home placements.

41.             Torbay is widely regarded as one of a limited number of sites that have managed to implement whole system integration at pace and scale. This has been supported by innovative use of IT/information as well as multi-disciplinary team working and co-location.

42.             In Lancashire, two local Clinical Commissioning Groups, a Community Trust, an Acute Trust and the County Council are working together to deliver integrated care and support and is based around four key themes:

• Risk Profiling of whole populations
• Integrated Neighbourhood Care Teams that are multi-disciplinary and multi-agency
• Self-Care/ Shared decision making
• Rehabilitation – whole system review and remodelling

43.             Based on national and international evidence the ambition is that this approach will lead to a 20% reduction in unscheduled admissions for people with long term conditions.

44.             Dudley Council, working in partnership with Dudley Clinical Commissioning Group, has developed an innovative, integrated approach to the diagnosis, care and support offered to people with dementia (as well as to their carers and families). They have developed three ‘dementia gateways’ located across the borough which provide care and support for those affected by dementia, throughout all stages of the illness. Through attention to the individual needs and wishes of the individual the gateways ensure tailored care, as well as providing extensive support and advice for families and carers. The gateways aim to ensure those affected by dementia enjoy life to the full, and offer a wide range of sessions and therapies, from crafts and memory exercises to gardening. There are also day sessions available to provide a break for family and carers.

45.             Essex is another one of the 4 national Whole Place community budget sites to be implementing integration at pace and scale. They are seeking to develop a Greater Essex integrated, commissioning approach across public services based on CCG boundaries.

46.             The programme will focus on 4 key service cohorts:

• Long term conditions
• Learning Disabilities
• Dementia and Older People
• Right to Control

47.             The ambition is to implement a single integrated approach that supports new commissioning entities across Essex and 7 CCGs in the County. This will deliver an integrated service model which will reduce demand, improve care outcomes and share risk and benefit across the whole system.

48.             Further examples of effective integration of services can be provided on request.

The implications of an ageing population for the prevalence and type of long term conditions, together with evidence about the extent to which existing services will have the capacity to meet future demand

49.             The House of Lords Select committee report on Public Services and Demographic changes – Ready for Ageing (published March 2013) comprehensively sets out the case:

• The number of people aged over 75 is expected to grow from 5.4 million in 2015 to 8.8 million in 2035.
• The demand for hospital and community service spending by those aged 75 and over is in general more than three times the demand from those aged 30–40.
• It is estimated that under current funding arrangements total spending (public and private) on long term care for older people will need to more than double in real terms by 2030 to sustain standards.

50.             The NHS reforms place clinicians at the heart of the new NHS system and provide them with the flexibility to focus on solutions which meet the needs of local populations. The QIPP challenge is on target to save £15bn to £20bn from 2011–2014, and whilst there are difficult decisions ahead, the experience of service reconfiguration (such as stroke services)[11] suggests that there is scope to free up resources to provide care in more efficient and more effective ways. Further, the sorts of local innovations in integrating services (detailed above) demonstrate that local clinical communities, effectively empowered, can find ways to meet this challenge.

The interaction between mental health conditions and long term physical health conditions

51.             People with a physical long term condition are two to three times more likely to experience mental health problems than the rest of the population.[12] When people live with depression and another long term condition, this can reduce their ability to manage their conditions, and lead to poorer physical and mental health outcomes. Therefore, it is essential that an individual’s mental health needs are considered alongside other support.

52.             The NHS is working towards more people with long term conditions and psychological comorbidities being able to access NICE recommended services and treatments.

53.             The Improving access to psychological therapies (IAPT) programme, aims to improve public access to a range of psychological therapies for depression and anxiety disorders for people with LTCs. It includes psychological approaches to assist patients to increase their ability to undertake treatment and rehabilitation programmes, as well as promoting medicines and treatment adherence and self-management.

54.             NHS England will promote parity of esteem for mental health (in line with No Health Without Mental Health) in all its work streams, including the management of people with long term conditions.

The extent to which patients are being offered personalised services (including evidence of their contribution to better outcomes)

55.             People with long term conditions need support to understand and manage their health and wellbeing, to share decisions with professionals, and to self-manage. There is increasing evidence that when patients are involved in managing and deciding about their own care and treatment, they have better outcomes, are less likely to be hospitalised,[13] follow appropriate drug treatments[14] and avoid over-treatment.[15] This requires a more personalised approach to care: one where people with long term conditions have more control of their health, and share decisions with health and social care professionals.

56.             A range of tools are available to help individuals and their clinicians have a conversation where both understand what is important to and for the individual. Health literacy programmes help people understand more about their health and healthcare, and empower them to ask questions. A range of shared decision aids help people think through different treatment options and make informed decisions about difficult healthcare options (e.g. NHS Right Care shared decision-making tools).[16] NICE guidelines recommend a ‘Rehabilitation Prescription’ after episodes of critical illness, taking into account person-centred, measurable goals.[17]

57.             Personal health budgets[18] are another way of giving people more control over how their long term health needs are met. They build on personalised care planning, knowing how much money is available to meet agreed health outcomes, and enables people to meet their needs in ways that work for the individual. They allow people to take a holistic, whole-life approach to planning, and facilitate integration across health and social care (personal budgets have been available for much longer in social care).

58.             Personal health budgets are new to the NHS and early implementation is focused on people receiving NHS Continuing Healthcare (the majority of who will have at least one long term condition), who will have a right to ask for one by April 2014. CCGs will be able to offer them more widely on a voluntary basis to other patients who could benefit.[19] One method of managing a personal health budgets (direct – cash – payments) requires Parliamentary scrutiny before they become more widely available (The National Health Service (Direct Payments) (Repeal Of Pilot Schemes Limitation) Order 2013 was laid in Parliament on 22 April and will be debated in both Houses in due course).

59.             Patient-accessible records, which are an NHS England’s priority, will allow greater personalisation of treatment plans and for patients to better understand their treatment and have a say in how their care is personalised.

May 2013