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Chapter 3: Supporting people with long-term conditions to live healthy lives

People with long-term conditions will receive higher-quality care:

  • The Expert Patients Programme will be rolled out throughout the NHS by 2008 to enable thousands more people with long-term conditions to take more control of their health
  • The new contract for GPs introduced in April 2004 will reward family doctors who deliver higher standards of care to patients
  • Patients with complex long-term conditions will be supported by community matrons, and by 2008 every PCT will be offering these services
  • People with long-term conditions will benefit from the rapid implementation of NICE guidance on cost-effective drugs.

Introduction

3.1 With medical technology improving, the provision of universal healthcare, and improved prevention, the NHS continues to make inroads into curable and preventable medical conditions in England. As people live longer, growing numbers of people have medical conditions that they will live with for the rest of their lives. These long-term illnesses are increasingly common and the ability to respond well to the needs of patients with them has become an important part of modern healthcare.

3.2 Long-term conditions affect older people more than younger people and people in lower socio-economic groups are also more likely to be diagnosed with one or more condition. Long-term conditions include diabetes, asthma, arthritis, heart disease, depression, psoriasis and other skin diseases that can be controlled but not cured. They vary in their degree and severity but living with such a condition usually has a major impact on a person's life and on their family.

3.3 The impact on individual patients and the NHS is enormous:

  • About 60% of adults report some form of long-term or chronic health problem
  • People with long-term health problems are significantly more likely to see their GP (accounting for about 80% of GP consultations), to be admitted as an inpatient (on average about twice as likely, given a particular problem) and stay in hospital for longer
  • Use of the NHS increases with the number of problems reported (the 15% of people with three or more problems account for almost 30% of inpatient days)
  • There are some patients with more than one condition whose complex needs mean that they depend very heavily on hospital stays to support them. Ten per cent of patients who stay in hospital for their care account for 55% of hospital stays, compared with 50% of patients who use only 10% of the bed days.

3.4 The NHS needs to provide a much better service for patients with these conditions and provide high-quality personalised care to meet their needs. It needs to enable people to take greater control of their own treatment, and to spend more time at home and in the community with their families and friends. The NHS needs to do much more to support patients in avoiding the fear and anxiety of having to go to a hospital in an emergency, by anticipating problems and working with patients to prevent these worrying episodes. This chapter sets out how the NHS will both respond to these needs and build a responsive service tailored to patients with long-term illnesses.

3.5 The benefits to patients are arguments enough for doing so. But responding in this way will also create a more efficient health service that is better able to meet the needs of all the patients that it serves. There is strong evidence that improved management of these conditions can lead to:

  • Fewer emergency admissions into hospitals, where care is more expensive. Many patients with severe conditions experience periods of relatively poorer health when emergency admission to hospital is required to stabilise their conditions. These admissions account for a high proportion of overall emergency admissions and of total bed-days. This occurs across a wide range of conditions, including heart disease, chronic obstructive pulmonary disease (including bronchitis and emphysema), diabetes and mental health problems
  • Fewer admissions for inpatient care. Slowing the progression of disease can delay or prevent the need for treatment in hospital. For example, better management of high blood pressure and high cholesterol in patients with heart disease means that fewer of these patients will require heart surgery. Effective physiotherapy for patients with arthritis can delay the need for joint replacements.

Personalised support for patients with long-term conditions

3.6 Over the next four years, the NHS will be offering better, more effective, services to people with long-term conditions.

3.7 The NHS will concentrate on giving the right level of support to patients. While patients will need individually-tailored care, patients can be broadly divided into three groups requiring different levels of support. The large majority of patients are usually able to manage their own conditions, given the right advice and support. Another group needs more proactive support in caring for themselves, with particular support on avoiding complications and slowing the progression of their disease. A smaller group of patients with particularly complex needs require an approach known as 'case management', with more active and specialist care.

Self management

3.8 For the first level of care, self-management, people with long-term conditions can often live healthier lives when they are supported to manage their chronic disease. In recent years, drawing on international experience and research evidence, the Expert Patients Programme has been developed in the NHS to find effective ways of giving this option to patients.

3.9 Using trained non-medical leaders as educators, people with arthritis and other long-term conditions have been equipped with the skills to manage their own conditions. Compared with other patients, 'expert' patients report that their health is better, and they cope better with fatigue, feel less limited in what they can do and are less dependent on hospital care. The programme has involved many PCTs across the country and to date has supported over 10,000 patients in this way. By 2008, it will have been rolled out throughout the NHS, enabling thousands more patients to take greater control of their own health and their own lives. The following statements indicate the benefits reported by patients:

  • 'It gave me new ways of analysing and solving some of my problems... I believe that this is one of the most important initiatives for those with long-term conditions.'
  • 'The Expert Patients Programme has really helped me to take more control of not just my arthritis, but also my life.' l 'I have learnt that I need to take responsibility for my health instead of leaving it all to the GP.'
  • 'Coming on the programme has given me real confidence to move on, plan for the future without fear, because I can now plan and pace - really good teaching.'

Disease management

3.10 At the second level of care, there is very good evidence about the positive impact of better disease management on specific conditions like heart disease, chronic obstructive pulmonary disease, asthma, diabetes and depression. With proper support in primary care and systematic and tailored programmes for individual patients, better healthcare and social care can make a very real impact on slowing the progression of these diseases and delaying or avoiding severe phases of illness.

3.11 For example, for coronary heart disease, GPs now have registers of all their patients who suffer from this condition. They can use these registers to invite patients in once or twice a year to check that their blood pressure is under control, that their cholesterol levels are kept in check and that they are provided with support in stopping smoking or taking more exercise. It has been estimated that drugs for cholesterol alone have saved up to 7,000 lives through this approach. Many more heart attacks have been prevented and fewer patients have had to go through the trauma of surgery as a result.

3.12 The new approach to disease management will consolidate this work for all patients who can benefit. The National Service Frameworks provide clear models and frameworks for many of these conditions. The National Institute for Clinical Excellence guidance provides many of the key clinical underpinnings for a number of these conditions. The new contract for GPs provides strong financial incentives to those practices that seek out patients who can benefit from this kind of support and demonstrate that they are making a real difference to their health.

Case management

3.13 At the third level, where patients may often have three or more long-term health problems, the NHS needs to put in much more effort to meet their complex needs and provide a proper personalised service. Evidence for case management has come from a range of sources, both within the NHS and from international experience where it has been successfully implemented. This evidence has shown that high-quality and personalised case management can improve patients' lives dramatically, reduce emergency admissions to hospital and enable patients to return home from hospital more quickly when they do have to be admitted. From the perspective of a more efficient NHS, a range of UK studies have shown reductions in admissions of between 10% and 20% as well as reductions in the lengths of hospital stays of between 20% and 30%. Taking the thought and making the effort to meet the individual needs of patients who need help most is not only good for patients and for their families, but it is good for the NHS.

3.14 The key to meeting the personal needs of these patients will be a new type of specialist clinician, often a nurse, who works with patients and social care providers and who has particular expertise in responding to patients' complex problems. These community matrons will work with patients with complex problems to assess their needs and the support that they need and then work with local GPs and primary care teams to develop tailored personal plans to deliver the best possible care to them. These nurses will act as a fixed point for the patient, take responsibility for their care, and co-ordinate the contribution of all the different professionals who can help, anticipate and deal with problems before they lead to worsening health or hospitalisation.

3.15 The pilot phase of this approach has shown that patients' health is improved quickly and, following on from that, reductions in admissions and long stays in hospital also reduce pressure on hospital and accident and emergency services. This is because case management avoids many of the admissions in this complex group of patients which are due to relatively minor and easy to prevent conditions such as dehydration and urinary tract infections, which could be avoided if the NHS was better able to quickly respond to patients' needs in the community. The addition of these relatively minor problems to patients' existing poor health and complex chronic disease is often the trigger for admission to hospital, which is upsetting for patients and their families and inefficient for the NHS.

3.16 Nine PCTs are working to adapt and implement case management for vulnerable, older people. Strategic health authorities are now developing case management approaches across their health communities for implementation by April 2005. This model of care will be adopted by every PCT between 2005 and 2008 by which time there will be over 3,000 community matrons using case management techniques to care for around 250,000 patients with complex needs.

Care closer to home

3.17 Patients generally prefer to be at home rather than in hospital, provided that they are properly supported. This programme will ensure that more care will be provided closer to home. Where possible, patients will be able to choose where and when they receive care and will be supported in making these choices. This includes making use of contact through the telephone, digital television and the internet, and applying the benefits of telecare, where there is evidence of cost-effectiveness (see Chapter 7).

3.18 In the case of planned hospital care, we will build on schemes already in place in parts of the NHS that enable patients to be treated more quickly and conveniently without having to attend hospital. For example, in Greater Manchester, many patients are now diagnosed and treated by GPs with a special interest, specialist nurses and other practitioners. Similarly, in Somerset, a referral management centre helps patients make informed choices with their GP about where they should be referred for specialist treatment. The result has been a significant increase in the number of patients choosing to see a specialist GP in the community, and this is often more convenient for them than a hospital appointment.

3.19 In the case of emergency care, the emphasis on supporting people with long-term conditions will help reduce unnecessary emergency admissions and enable hospitals to respond more effectively to the needs of acutely ill patients. This includes making use of emergency care practitioners in the ambulance service where appropriate. For example, the London Ambulance Service has 24 emergency care practitioners. They provide a service in two boroughs between 10am and 10pm, mainly for people whose conditions are not life-threatening but who need assistance or advice. Of these people, 83% are dealt with by a single emergency care practitioner avoiding admission to hospital altogether.

Social care

3.20 Effective social care services are often critical to meeting the needs of people with long-term conditions, enabling people to live more independently and, along with healthcare and other services, improving their health and the impact that it has on their lives. The following principles will be essential to ensuring that the NHS and social care services work together to meet the needs of these patients and provide them with the personalised support that they need:

  • Social care, like healthcare, needs to be person-centred and personalised. Services need to cater for the individual's needs, rather than those of the service providers. This is not only about professionals interpreting an individual's needs and tailoring services to those assessed needs, but also involving people themselves, and their families, in the design and delivery of those services
  • Social services are often provided at a time of crisis or significant event in a person's life, and sometimes continue long-term from that point. Social care services and the NHS need to reinforce the focus on proactive services that stop problems happening and help patients to maintain independence and existing networks of support. Picking up the pieces after the event, if it was avoidable, is a failure for those who require social care and health services
  • Social care commissioning and provision will be further integrated with healthcare to deliver a better experience for the individual and ensure the most efficient use of available resources. Patients and their families should not have to take the trouble to communicate between different services. That is the job of local NHS and local authority services
  • There will be a greater role for preventative services to help people avoid hospitalisation. Social care is critical to that work. Effective home care can help patients avoid going to a residential care home. Creative work to meet people's needs with better transport, housing and leisure services can also support this effort, as can excellent examples of work by local authorities to provide people with social and community networks that sustain them and help them to cope with the right support.

3.21 The single assessment process and better care co-ordination will be central to achieving these aims. It will help everyone involved to ensure the full range of health and social care needs of the individual are met. The Department of Health has already put in place a number of building blocks to support greater integration. The 1999 Health Act removes many of the legal barriers to allow joint commissioning of services by the NHS and local government, enabling combined provision and funding. In some areas, there have been joint appointments of senior managers in key roles in PCTs and local authorities to foster combined planning of care for the people that both organisations exist to serve. The Community Care (Delayed Discharges) Act 2003, also gives social services departments strong financial incentives to work with healthcare partners to ensure a smooth transition for patients from hospital back to the community.

3.22 As part of this drive, people will be given further control over their social care needs and the way that they are met. Direct payments - where people are given the financial resources to pay for the services that they need, rather than the services that the council offers - empower people to make their own choices about the design and delivery of the services and equipment that they need. With the option of support and advocacy functions, direct payments can significantly improve people's satisfaction with the help they secure and minimise the risk of making people dependent. Direct payments can also be co-ordinated with health commissioning so that, where needed, PCTs can commission integrated packages of social care and community-based healthcare in partnership with patients. This will be part of an overall strategy to improve choice in social care services.

Older people and long-term conditions

3.23 Older people have a relatively high likelihood of chronic disease and long-term conditions. They make heavy use of healthcare services and are majority users of social care. Frail older people with poor mobility, poor functioning and confusion are more likely to develop urinary tract infections, suffer dehydration, malnutrition and hypothermia, and may fail to take medication. Often, the home environment may make it difficult for them to cope without support, particularly if they are alone, under stress, or have lost confidence in their ability to manage on their own. In all these cases, well-targeted and co-ordinated community-based healthcare, community equipment and social care are effective at providing the personalised care that they need and preventing stressful and disruptive admissions to hospital.

Mental health

3.24 The complex medical and social underpinnings of mental health and its treatment make it different from other longterm conditions, but this has often made it a forerunner in delivering combined approaches to delivering more personalised care, using preventative services, self-care, treatment in the community and, overall, more proactive care. The National Service Framework for Mental Health sets out a comprehensive agenda for improving services for adults. The National Service Framework for Children, to be published later this year, will include a new standard for child and adolescent mental health services.

3.25 A key priority will be to ensure better availability of early intervention and prevention services. In particular, the aim is to ensure a continued emphasis on assertive outreach services that seek to engage those with mental illness who are at risk of falling out of contact with services. Crisis resolution and home treatment services that respond rapidly to people in a crisis and provide support in the community will also be developed. Such teams have already shown that they can help to provide more effective support to patients, and they are well-liked by the people who they serve, helping them to avoid unnecessary time in hospital.

What the future will look like for the patient

Scenario: Sayed

Scenario: Sayed

Sayed (15) has had a cough for a week. He knows most coughs get better by themselves but that they sometimes make his asthma worse so he increases his preventative inhaler therapy. He, his GP and his parents have agreed that he can manage things himself. He accesses his personal care record from home, including personalised management plans for asthma and chest infections. Despite having increased his inhaler therapy as planned, his wheeze is worse and his measurement of breathing (peak flow) has fallen. He rings his GP. Sayed has been on the Expert Patients Programme, and has taken the specific module on managing worsening of his asthma. Therefore they decide that Sayed can go directly to the pharmacy to pick up a three-day course of steroids after the GP sends an electronic prescription. Sayed knows what to do if his symptoms change or if he is still concerned. The next morning he is contacted by the practice nurse who finds he is making a recovery. The following week they talk again and amend his care plan to help prevent future exacerbations.

Scenario: Lucy

Scenario: Lucy

Lucy (30) has had diabetes since childhood. She has registered a profile of interests on HealthSpace, her own secure place on the internet, that holds her personal care record. She regularly receives updated information about managing diabetes from the NHS, Diabetes UK and a diabetes clinic in Boston that her specialist nurse recommended. Recently, she has found that the pharmacy near to work can do full diabetes tests, including blood tests, foot checks and retinal screening. These are put onto her HealthSpace. In 2003, she started on a newer, long-acting, insulin (glarine), as recommended by NICE. Recently, she and her partner have decided to start a family. Lucy went to her GP and discussed the implications. To back this up, her GP sends some general information to her HealthSpace about preparing for pregnancy and more detailed information about what diabetic mothers should do, and gives her a link to an evidence-based website on diabetes in pregnancy.

Scenario: Esther

Scenario: Esther

Esther (82) has had raised blood pressure, angina, heart disease, diabetes and arthritis affecting her knees, hips and hands. The pain was getting worse last year so, instead of increasing her medication, she went on the Living With Arthritis programme jointly run by her PCT and Help the Aged. It was a great success. Unfortunately, she recently had a small stroke but made a good recovery in the specialist-run, community-based stroke unit. Since then, she has had an emergency admission to the local acute hospital with a urine infection, leading to confusion. This, combined with the fact that she has multiple chronic conditions and is on more than five medications, automatically alerts her GP to the fact that she is now at a high risk of repeated admissions. Her GP therefore refers her to a community matron who, working with Esthers practice, the local occupational therapy and physiotherapy service and social services, manages to help Esther become increasingly independent and less at risk. After two weeks of intense input and then occasional follow-up for a further two months, the matron hands back her care co-ordination to Esthers GP practice.

Scenario: Peter

Scenario: Peter

Peter (36) has had psoriasis since his early twenties. About eight years ago it became so bad he had to be admitted to hospital for two weeks, but in recent years it has been much more stable. For the most part, Peter now manages his own psoriasis, using different creams and regimes according to how bad his symptoms are. He receives most of his prescriptions by post after ordering them over the internet. Recently he went to his local pharmacy and got some useful advice about exposure to the sun, which he knew helped his psoriasis but was also a risk for skin cancer. He is very active in his local psoriasis group, and as a result has become an educational resource for other patients with psoriasis. He has also become part of a group of clinicians, managers, patients and carers who advise the local Primary Care Trusts on how to commission services for patients with skin problems. He was particularly pleased to make sure that a number of different specialist providers are now available. He thinks that as a result, there are now providers who will suit the needs of many groups of people, including children, younger patients like himself and the elderly.

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