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05 CHAPTER FIVE SELF-CARE, carers, volunteering and the voluntary sector: towards a more collaborative approach

01 A key message from the previous chapter was the need to adopt a whole-system approach in redesigning health care. The NHS is only one part of a much wider 'whole system' of health care.

02 The elements of this wider system we will look at in this chapter are:

• people experiencing ill health who contribute in terms of self-care and self-management
• carers of people with health problems (unpaid, most often family members)
• people who assist as volunteers
• the professional voluntary sector.

03 The service needs to find ways to develop the full potential of patients, carers and other 'non-state' providers to enable them to become co-producers of health care. This will bring

Self-care and self-management

04 Self-care involves the individual taking action to maintain health, prevent illness, seek and adhere to treatment, manage symptoms and side effects, accomplish recovery and rehabilitation and cope with chronic illness and disability. Engagement in self care facilitates a partnership between health service users, their carers and health professionals to ensure optimal health outcomes.

05 Self-care takes many forms, ranging from relatively casual actions to deal with occasional events such as taking an aspirin for a headache, to the development of high levels of patient expertise in managing a long-term condition such as diabetes.

06 There is growing evidence to show that supporting self care has a range of positive outcomes, such as:

• better health and quality of life, with improvements in overall life expectancy and positive impacts on specific symptoms such as pain, anxiety and depression
• improved patient satisfaction
• significant impact on use of care services with reductions in GP visits, outpatient attendances, Accident and Emergency department visits and inpatient admissions (Department of Health, 2005a).

07 The majority of acute healthcare events are self diagnosed and self treated. The service needs to become much better at supporting and informing self care, whether by means of home healthcare manuals such as the Kaiser-Permanente Healthwise Handbook, the provision of enhanced and authoritative information on the internet, or further development of telephone resources such as NHS 24.

08 The greatest potential for self care, however, is likely to be in the context of the management of long-term conditions. The Chronic Care Model introduced as a framework for care in local settings is predicated on support for self care and partnership with informed and motivated patients (Box 5.1).

09 In England, support for self care and self management is a key component of the strategy for supporting people with long-term conditions (Department of Health, 2005b). Figure 5.1 is an adaptation of the Department of Health (DoH) diagram showing the relative contribution of self-care at different levels of the chronic-care pyramid. It can be seen that for the vast majority of people with long-term conditions, care is primarily self-care based. The DoH cites the following as an example: '... people with diabetes have on average three hours contact with a healthcare professional and do self care for the remaining 8757 hours in a year, using the advice given by professionals during the three hours or using skills learned through structured self-care education programmes.'

Figure 5.1 Chronic-care pyramid (Department of Health 2005a)
Patients with long-term conditions: self care and management.

10 A recent DoH report on self care outlines a wide range of initiatives to support self care across the entire spectrum of services, from improving health literacy to installing home adaptations (Department of Health, 2005a). Self-care support is presented as a crucial element of the whole system of care, and it is emphasised that self-care support initiatives can only be embedded successfully in the care system if they are integrated into its routine business and have the full backing of care professionals, practitioners and managers.

11 Programmes to develop and support self management take a variety of forms. They can be specific to a particular condition, or generic in nature. They can be professionally led, or led by patients, i.e. lay-led or patient-led self-management.

12 The last of these options is becoming increasingly important and has been described as follows: 'In essence, lay-led self-management programmes are a conduit through which people living with long-term illnesses can develop self-efficacy, enhancing skills which enable them to feel more in control of their condition. The aim is to complement existing healthcare provision and encourage the development of a partnership between the patient and the health professional, in which the patient becomes the manager of the condition, learning to make the best use of the resources available to him, one of which is the health professional' (Cooper and Clarke, 1999).

13 An early condition-specific example of a patient-led self-management programme was the Arthritis Self-Management Programme which became the basis of the Challenging Arthritis initiatives implemented by Arthritis Care in the 1990s in England and in Scotland. Acknowledging patients as experts in their own care is fundamental to enhancing self care activity.

14 The Expert Patient Programme adopted in England is based on a generic approach in which patients with a variety of long-term conditions come together in a group to be trained in self-management techniques by lay trainers who have themselves come through the system. In England, the Expert Patient Programme has been the basis of a major investment in patient self management and has been given the 'green light' to go mainstream, with the target of rolling it out to all Primary Care Trusts by 2008 (Department of Health, 2005b).

15 In Scotland, the Braveheart Project is a notable initiative combining elements of lay-led and professionally-led approaches to self management (Box 5.2). Participants are patients aged 60 and over with a clinical diagnosis of ischaemic heart disease. They participate in a series of meetings of a mentor-led support group over a period of a year. Mentors are not health professionals, but are individuals with experience of the same or similar conditions who undergo specific training for the project with input from a range of health and other professionals. Sessions cover a wide variety of issues on management and self-management of cardiovascular disease and the promotion of general wellbeing. A randomised controlled trial relating to the project showed significant improvements in exercise, diet and physical functioning among participants, as well as reductions in outpatient attendances (Coull et al., 2004).

16 In general, however, apart from some excellent and pioneering initiatives, support for self care and self management in NHS Scotland is relatively underdeveloped. Moving self care and self management into the mainstream of health care will be a major undertaking. It will require changes in the culture of healthcare delivery away from a top-down 'doctor knows best' approach towards a more collaborative approach in which one of the major roles of the healthcare professional will be to facilitate a range of methods for patients to learn how best to manage their own conditions.

17 We recommend that NHS Scotland seeks to build on some of the success stories in Scotland (such as the Braveheart Project) and looks at what can be learned from the DoH's Expert Patient Programme with a view to developing a more systematic approach to self management. We see this as having particular relevance to managing long-term conditions.

18 The Scottish Executive should work with NHS Boards to pilot self-management approaches supported by information technology.

19 In addition, we recommend that the Scottish Executive Health Department should fund and develop a Scottish Long-Term Medical Conditions Alliance to articulate patients' views across a wide range of conditions. This would help to meet the aim of effective long-term condition management based on generic approaches to managing specific conditions, making patients equal partners in their own care and encouraging self-help initiatives.

Carers

20 One of the issues that came up consistently in our public consultation meetings was the vital role played by unpaid carers and the perception that their contribution was generally undervalued.

21 A central theme of Scotland's Health White Paper, Partnership for Care ( SEHD, 2003), is the need to work in partnership with patients and carers (Box 5.3). Full partnership between the NHS and unpaid carers can bring immense benefits to patients, carers, the NHS and to local authorities in their key role of supporting carers and the people they care for. Supporting the caring relationship can lead to improved physical and mental health for both patients and carers.

22 Development of the relationship between Scotland's NHS and unpaid carers provides significant opportunities to achieve shared national objectives: better health and care provision in the community, increasing emphasis on self care, and reduced NHS and social care intervention.

23 The role of carers in supporting the health and welfare of those they care for cannot be underestimated. Just under a third of carers are the main support for the people they care for, either alone or jointly. Carers living in the same household as the person for whom they care provide high levels of practical and health care - 51% provide personal care, 57% provide physical help such as assistance with walking and 44% give medicines.

24 For many carers, caring is a long-term commitment. One in five carers (21%) has been caring for someone for at least 10 years and nearly half (45%) have been caring for someone for five years or more ( ONS, 2002).

25 In addition to providing health care, carers help to promote independence, prevent or delay admissions to hospital or care homes and facilitate early and effective discharge from hospital.

26 There is evidence that caring can affect carers' own health and that their health is increasingly at risk as their caring responsibilities increase. Female carers with the greatest caring responsibilities have a 60% higher chance of experiencing distress than non-carers, with the risk increasing with the intensity of caring (Hirst, 2004). Carers in Scotland providing high levels of care are a third more likely to suffer ill health as non-carers. Nearly 60,000 in Scotland (out of an estimated 600,000) say they are in poor health (Carers UK, 2004).

27 When a caring relationship breaks down (often because unsupported carers can no longer cope), it can result in the admission of the cared-for person, the carer, or both, to hospital or local authority care. This is particularly true where older carers are caring for older spouses, partners or friends.

28 Recent years have seen major developments in the legislative and policy environment relating to carers. In particular, the Community Care and Health (Scotland) Act 2002 and subsequent Scottish Executive guidance formally recognise carers as 'key partners in the provision of care' and, for the first time, define a legislative duty on NHS Boards to identify and support carers through the development of local NHS Carer Information Strategies. The Scottish Executive guidance also emphasises that unpaid carers require appropriate resources and support to be able to manage their role.

29 Carers require the following types of support and resources:

• information and advice
• training
• practical and emotional support.

Information and advice

30 Unpaid carers require appropriate information and advice at every level of the caring journey. They prefer information directly from NHS contact points or from 'one-stop shops' such as local Carer Centres, rather than having to piece together information from a wide range of sources and agencies. Among the main types of information most needed by carers are:

• Information on the health and medical condition of the person for whom they care. Understanding the gradual impact, symptoms and processes of illnesses such as dementia and Alzheimer's disease, or the causes and patterns of schizophrenia, epilepsy, stroke or kidney dialysis, can enable unpaid carers to understand and plan appropriate medical or care support. This will lead to the empowerment of carers, who can then assist in predicting and preventing crisis interventions, potentially avoiding the need for admissions to acute services.
• Information on health promotion and healthy living. There is increasing evidence that the pressures of caring lead to stress, mental ill health and neglect of people's health and dietary needs. Protecting the health of unpaid carers is viewed by many carer organisations as a public health issue. Viewing the health of carers in this way will provide long-term benefits to the NHS. Healthy carers in the community can be as essential as healthy nurses.
• Information on the range of support that is available to them. Although support is available to carers, information on how to access it is not always readily available. Carers require information on finance and benefits for themselves and the person they care for; short breaks and breaks from caring (respite); equipment and adaptations to support daily living; and practical and emotional support. Making this information easily accessible provides carers with choice on the services best suited to their needs and prevents the inevitable frustrations associated with navigating the 'system'.

Training

31NHS research has shown that systematic training for unpaid carers produces a better quality of life for the carer and person cared for, as well as tangible economic savings from reduced NHS and social care intervention and prevention of repeated hospital admission.

32 A recent randomised controlled trial, for example, looked at the effects of providing unpaid carers of disabled stroke survivors (patient median age 76) with training in basic nursing techniques relating to stroke and hands-on training in areas such as lifting and handling and continence. Improvements were shown across a range of outcomes for carers (in quality of life, anxiety and depression scores) and patients (in quality of life and burden of care) (Kalra et al., 2004). An economic evaluation showed significantly reduced costs of care (Patel et al., 2004).

33 Appropriate training courses on different aspects of caring, preferably early in the caring role, can play a significant part in building carer knowledge and confidence and facilitating peer support.

34 In line with the concept of the 'expert patient', training for carers can create 'expert carers' who are knowledgeable in medication regimes, early symptom recognition, and pain and behavioural management. The 'expert carer' can effectively work alongside the health professional to deliver quality care and, guided by professional advice, can provide peer support in similar circumstances.

35 Training courses for carers funded and promoted by the statutory sector will allow all to participate. Funding for alternative caring arrangements while carers are undertaking training - particularly for those with the heaviest caring responsibilities - will enable carers to participate and provide long-term benefits to the NHS.

36 Training programmes should be designed with the appropriate balance of professional input and peer support to cover topics such as: assessment; pathways to NHS and social care support; use and effects of medication; moving and handling; emotional aspects of caring; healthy living and health promotion.

37 Ideally, carers should have the opportunity to choose from a mixed programme of generic courses, specialist courses and group-work programmes (on emotional aspects of caring) to develop the appropriate mix of training support for their specific needs at different stages in the caring journey.

Practical and emotional support

38 Carers report that they need emotional and practical support to assist in their caring responsibilities. The practical support needs of carers, particularly of those in intensive caring situations providing 50 hours care and more per week, centre specifically on aids and adaptations and the provision of regular and planned breaks from caring (respite). The emotional support required takes the form of mentoring, counselling and peer support.

39 Practical support: aids and adaptations Appropriate aids and adaptations play a significant part in easing living routines, particularly where provision is part of long-term planning to allow patients and carers to shape the environment to their long-term needs. Carers report great improvements to their lives and caring roles as a result of often small adaptations and supporting aids.

40 Many NHS Boards and local authorities provide extensive aids and adaptation stores. These can be accessed by patients and carers, but are not always widely promoted. Carers often report a lack of information about their existence.

41 Increasing carers' access to information about aids and adaptation stores, and reducing the bureaucratic procedures associated with accessing equipment, will enable carers to work alongside professionals in maintaining the patient at home.

42 Practical support: rehabilitation, short breaks and breaks from caring The provision of short breaks and planned breaks from caring is reported by carers as an essential requirement in maintaining the caring relationship. Although 'respite' is often seen as a social care issue, joint planning to increase the capacity of flexible and planned respite services would further assist in the caring role.

43 Emotional support The ability of thousands of unpaid family carers to cope with their role as care providers depends on managing the emotional impact of impairment, illness and caring. Impairment and illness often have significant impacts on 'natural' relationships between people and their life expectations. Frustration, anger, guilt, depression and a sense of hopelessness mix with desires to provide the best possible quality of life for people with support needs and their families.

44 The impact of impairment and illness on the mental and emotional health of carers, siblings and other family members is increasingly well documented. Planned support for unpaid carers should include the provision of emotional support, counselling, peer group support and mentoring.

45 As with training programmes on the practical aspects of caring, NHS investment and support of emotional support programmes and facilities would provide a significant resource to support carers to cope positively with their role.

What the NHS can do to support carers

46 The NHS should take the following steps to help support the agenda outlined above.

47 Make carers' health a public health issue. With increasing evidence of the detrimental impact of caring on the emotional and physical health of unpaid carers, NHS support for unpaid carers should be regarded as a public health issue. Preventative action, healthy living and health promotion for carers are considered to produce health and quality-of-life benefits for carers and the person for whom they care. A practical example is NHS Lothian's inclusion of carers of all ages in free 'flu inoculation programmes (previously only supplied to people over the age of 65).

48 Implement fully NHS carer information strategies. Full and systematic implementation of local carer information strategies is needed to identify and support carers at the point of patients' entry to the NHS. In this context, the systematic implementation of carer registers within new GP contracts would address one of the key gateways for recognition and support identified by unpaid carers and health professionals.

49 Encourage carer participation and partnership involvement in planning. The continued recognition of carers as key providers rather than users of services is fundamental to their role as strategic partners at all levels of health care. Consideration could be given as to how to strengthen the formal role of carer representation within emerging planning structures, enabling carers to provide information on what could be developed locally to facilitate hospital discharge and prevent hospital admission.

50 Develop and provide carer training. The previous section outlined the types of training required so that carers can maintain their own health and wellbeing and maximise their contribution to the health and wellbeing of the person they care for. The NHS should develop a national framework for the development and implementation of the training programmes required.

51 Building 'carer awareness' into professional training. The 'carer dimension' should be included in the professional training and study programmes of professional staff at all levels. A lead has been taken by the Royal College of Psychiatrists. From 2005, the College will require postgraduate accreditation to have a carer-led carer awareness component to the curriculum. Current draft statutory guidance states that NHS Boards and local authorities must ensure that frontline staff and professionals are trained in carer awareness issues. This should include awareness-raising about issues relating to young carers. Training should be provided in a range of ways including induction, joint training and ongoing education and communication in relation to health and social care.

Supporting carers to support the service

52 Better support and training for carers provides three levels of benefit: benefit for carers, benefit for the people they care for, and benefit to the NHS. The system of unpaid care is currently in a fragile condition. Growing numbers of older people and an associated burden of ill health mean an ever-growing demand for unpaid care. Current evidence is that the supply of unpaid care is not keeping pace with this growing demand. Even more ominous is an 'intensification' of caring relationships, with more care being provided by close family members, especially partners, and more care being at the 'intensive' end of the spectrum, involving long hours and high levels of responsibility. If this increasingly fragile system of unpaid care is not supported adequately, its breakdown will pose heavy demands on the healthcare system.

53 Carers will play an increasingly important role as partners as various methods and levels of care and case management are progressively adopted as part of the move towards a more preventative and proactive model for dealing with long-term conditions. These developments are likely to be of great benefit to carers in reducing fragmentation and duplication in the provision of care.

54 As was pointed out in a recent Australian report: 'Care co-ordination and case management, often viewed as primarily a service to care recipients, carries direct benefits for carers, particularly carers of people with impaired decision-making capability. Primary carers have been likened to 'bridges', connecting their care recipients to health and community care networks. Case management... can relieve carers from the time-consuming detail of investigating alternative services etc... Case management is a necessary rather than optional form of support for the 'bridging role' of primary carers...' (Australian Institute of Health and Welfare, 2004).

55 A health service that is increasingly orientated towards the establishment of ongoing relationships with patients in the management of long-term conditions will be one in which supportive, continuous and collaborative relationships with carers will be an essential element.

Volunteering in health

56 Volunteers are a group whose contribution is often overlooked. Not only can volunteers make a valuable contribution to making health care a more 'human' and caring process, but the health and psychological benefits to the volunteers themselves are becoming ever more apparent.

57 The range of contributions made by volunteers in health care is vast. It ranges from generic services such as driving or running shops and tearooms to roles which involve an irreplaceable level of empathy and expertise, such as mentors in patient-led self-management programmes. The benefits of volunteering are summarised in opposite.

58 The Scottish Executive adopted a volunteering strategy (Scottish Executive, 2004) which emphasises four key strands:

• ensuring young people are involved in volunteering
• dismantling the barriers to ensure participation by hard-to-reach groups
• improving the volunteering experience
• employing mechanisms for monitoring, evaluation and ongoing policy development.

59 We recommend that each NHS Board develops proposals to enhance volunteering in line with the principles above.

The voluntary and community sector

60 The voluntary and community sector in Scotland makes a major and growing contribution to the healthcare system. The sector is active in all spheres of health improvement, patient care and patient and public involvement. Thousands of community groups are involved in the health improvement and tackling health inequalities agenda with, for example, more than 100 groups involved in the Have-a-Heart Paisley initiative.

61 Voluntary organisations play a particularly important role in the context of long-term conditions. Patient groups focused on a particular condition or group of conditions, such as Diabetes Scotland, Asthma Scotland, Cancer Bacup and Alzheimer's Scotland, are major resources in supporting self care and self management.

62 Voluntary organisations are also often especially valuable in working with groups the NHS finds hard to reach, such as minority ethnic groups, lesbian/gay/transgender groups, refugees and asylum seekers, homeless people, travellers and gypsies, as well those in isolated and rural locations. They help make services accessible and acceptable.

63 Voluntary organisations nationally and locally are usually supported by a mixture of paid staff and volunteers. Many smaller voluntary organisations could not exist without the support of volunteers, but some of the larger organisations will use only paid staff. Community-based groups are generally active at community or neighbourhood level. They work developmentally and frequently depend upon volunteers and community activists.

64 The sector consists of a wide range of organisations and groups with varying capacities and abilities, many different visions and a range of internal structures. The challenge for the NHS is to engage in productive partnerships with this diverse and multi-faceted set of groups and organisations.

65 The statutory and policy framework in Scotland is increasingly emphasising the potential of the voluntary and community sector as a partner of the NHS in delivering health care. In general terms, this builds on the Scottish Compact between the Scottish Executive, its agencies, the NHS and the voluntary sector.

66 As part of the Patient Focus and Public Involvement Agenda, NHS Boards throughout Scotland are encouraged to bring a renewed focus to their relationship with the voluntary sector and recognise the valuable contribution it can and does make to health care in Scotland. Local compacts are emerging as an important vehicle for developing the relationship between the NHS and the voluntary sector.

67 Full and equal partnership with the voluntary sector is an inbuilt element of the development of Community Health Partnerships ( CHPs). The voluntary sector presence in CHPs will encompass a range of roles including service provision, patient advocacy and involvement in service planning.

Summary of recommendations

The Scottish Executive should establish a national group, including patients, carers, the voluntary sector and health professionals to develop a supported approach to self-management and should fund and develop a Scottish Long-Term Medical Conditions Alliance, to articulate patients' views.

The Scottish Executive should work with NHS Boards to pilot self-management approaches supported by information technology.

The NHS should:

• Make carers' health a public health issue
• Implement fully NHS carer information strategies
• Encourage carer participation and partnership involvement in planning
• Develop and provide carer training
• Building 'carer awareness' into professional training

NHS Boards should develop proposals to promote volunteering in health in accordance with the principles of the Scottish Executive Volunteering Strategy.

As part of the Patient Focus and Public Involvement Agenda, NHS Boards should bring renewed focus to their relationship with the voluntary sector. Local compacts should be developed as an important vehicle for the relationship between the NHS and the voluntary sector. Full and equal partnership with the voluntary sector will be an inbuilt element of the development of Community Health Partnerships.

References

Australian Institute of Health and Welfare (2004) Carers in Australia: assisting frail older people and people with a disability. Canberra. October 2004

Carers UK (2004) In poor health: the impact of caring on health.

Cooper J and Clarke A (1999) Expert patients: who are they? Lay-led self-management programmes: and additional resource in the management of chronic illness. Long-term Medical Conditions Alliance.

Coull AJ, Taylor VH, Elton R, Murdoch PS and Hargreaves AD (2004) A randomised controlled trial of senior lay health mentoring in older people with ischaemic heart disease: the Braveheart Project. Age and Ageing 33: 348-354

Department of Health (2005a) Self care - a real choice; self care support - a practical option. http://www.dh.gov.uk/assetRoot/04/10/08/92/04100892.pdf

Department of Health (2005b) Supporting people with long-term conditions: an NHS and social care model to support local innovation and integration. Department of Health January 2005

Hirst M (2004) Hearts and minds: the health effects of caring. University of York Social
Policy Unit.

Kalra L, Evans A, Perez I et al. (2004) Training carers of stroke patients: randomised controlled trial. BMJ 328: 1099

ONS (2002) Carers 2000. Office for National Statistics.

Patel A, Knapp M, Evans A et al (2004) Training care givers of stroke patients: economic evaluation. BMJ 328:1102

Scottish Executive (2003) Partnership for Care: Scotland's Health White Paper.

Scottish Executive (2003) Community Care And Health (Scotland) Act 2002 New Statutory Rights For Carers: Guidance CCD2/2003

Scottish Executive Health Department (2003) Partnership for Care: Scotland's Health
White Paper

Scottish Executive (2004) Volunteering Strategy

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