AGE EQUALITY IN HEALTH AND SOCIAL CARE

A paper by Janice Robinson,

Director of Health and Social Care, King’s Fund

Presented to the IPPR seminar, 28 January 2002, at the King’s Fund

The fourth in a series of six seminars on the IPPR project Age as an Equality Issue,funded by the Nuffield Foundation.

For details

Contact: Sarah Spencer

Director, Citizenship and Governance Programme

Institute for Public Policy Research

30-32 Southampton Street

London WC2E 7RA

Direct line: 020 7470 6150

Contents

About the Author

Acknowledgements

Executive Summary

A Word about Definitions1

A problem for older people or all age groups?1

An issue for health and social care1

Age Discrimination in Health and Social Care2

A matter of growing public concern?2

What is the evidence that age discrimination exists?3

Why does age discrimination occur?5

What does the evidence mean?6

Justifying Age-related Approaches to Health and Social Care8

Interpretations of equality in health and social care8

Equality is not the only consideration12

Is Age Equality Legislation Needed?13

What kind of legislation?14

The Costs of Age Equality in Health and Social Care15

References17
About the Author

Janice Robinson is Director of the Health and Social Care Programme at the King’s Fund. She has a background in social policy, and has a special interest in disability and ageing and in developments promoting independent living. She has worked in statutory and voluntary organisations, undertaking research and leading a variety of community care service and policy development initiatives. At the King’s Fund, she heads a team that works to improve the integration of care and support for people who have continuing health and social care needs. Programme activities focus on policy and practice affecting vulnerable older people and their carers, and younger adults with mental health problems.

Current interests include health and social care partnerships; the funding of long-term care; the strategic development of intermediate care; and age discrimination in health and social care.

For further information, please contact Janice Robinson, Director of Health and Social Care Programme, King’s Fund on telephone 0171 307 2696, fax 0171 307 2810 or

e-mail .

Acknowledgements

This paper was commissioned by the Institute of Public Policy (IPPR) as a contribution to a wider debate about age equality in public services. It was presented at a seminar organised by IPPR on 28 January 2002.

IPPR will be publishing a report on Age as an equality issue in summer 2002. This will consider age equality as it relates to employment, health, pensions and education policy. Discussion papers and seminars that have led up to the final report have been supported by a grant from the Nuffield Foundation.

A number of people have contributed their ideas and comments to this paper. Special thanks are due to Sarah Spencer, IPPR; Sandra Fredman, University of Oxford; and Charles Normand, London School of Hygiene and Tropical Medicine. I also want to thank John Appleby and Nancy Devlin of the King’s Fund for their perspective as health economists.

Janice Robinson, March 2002.

Age Equality in Health and Social Care

Executive Summary

There is a substantial body of evidence indicating that older people experience age discrimination in health care. Such discrimination is regarded as unacceptable by the current Labour Government, whose National Service Framework for Older People requires health and social care agencies ‘to root out age discrimination’. The Government’s recent recognition that age discrimination takes place in health and social care, and their determination to put an end to it, can be seen as a major step forward in tackling inequalities in public services.

Scrutinising health and social care services in order to identify age discrimination is a complex and contentious process. Age-based differences in the organisation and delivery of care are not necessarily discriminatory, but it can be difficult to distinguish between those policies and practices that disadvantage older people and those that do not. Arguments can be put forward to justify age-based approaches to care as fair, or legitimate on other grounds. However, it is not always easy to judge the merits of those arguments, or to reach agreement with others on the judgements or action necessary to eliminate age discrimination.

For any real progress to be made in eliminating age discrimination, people involved in scrutinising services will need a good understanding of what age equality in health and social care means. All the indications are that, at the moment, there is considerable uncertainty and confusion among service staff who are held responsible for ensuring that their services do not discriminate against older people.

If the new policy on age discrimination is implemented properly, we should see some reduction in discriminatory health and social care practices. However, it would be unwise to expect any radical change, given the difficulties of enforcing what is essentially a guide to good practice. New age-equality legislation is needed to increase the motivation of staff to organise and deliver their services in ways that do not disadvantage older people, and strengthen the ability of older people and others working in their interests to challenge discriminatory practice and seek redress.

Conventional anti-discrimination legislation is not likely to be effective in combating ageist practices in health and social care. There is a strong argument for creating new laws that place a duty on health and social care agencies to promote age equality and require them to demonstrate that they do not discriminate unlawfully against anyone on grounds of age.

That is not to say that legislation by itself will achieve greater age equality. Education and training of staff will be needed to change hearts and minds, as will review and scrutiny procedures to monitor and assess achievements on age equality.

The measures needed to achieve age equality in health and social care will incur costs. New resources will be needed to establish review bodies required to ensure compliance with the law, for new programmes of education and training, and – perhaps most important – to manage the consequences of ending rationing of services on age-based criteria.

It remains to be seen whether there is sufficient political and public support for paying the price of ensuring age equality in health and social care. In making that judgement, it will be important to recognise and compare the current costs of age discrimination. These are paid by older people themselves, who experience avoidable pain and misery, disability and premature death by being denied access to timely treatment, care and support. They also fall on families who take on the responsibility of caring for older relatives who are ill or disabled.

Costs saved in the health sector also clearly fall on other sectors, notably on local authority social services responsible for financing long-term care, and on the social security budget used for funding disability benefits and care allowances.

Further work is needed to quantify the benefits and costs of promoting age equality in health and social care. However, there can be no doubt that new measures are needed to prevent older people’s exclusion from opportunities to participate in family and community life. Failure to introduce new legislation is likely to perpetuate the tendency for older people to be treated as second-class citizens.

Age Equality in Health and Social Care 1

A Word about Definitions

A problem for older people or all age groups?

In this paper, discussions about age equality in health care focus mainly on the experience of older people, rather than younger age groups. This emphasis on older people – who can be loosely defined as people aged 60 and over – springs from the fact that health care decisions based on age criteria more commonly disadvantage older age groups rather than younger ones. It is nevertheless recognised that younger people – particularly children and adolescents – can also be disadvantaged by restricted access and availability of health services. Reference to the shared experience and consequences of age discrimination at both ends of the age spectrum will therefore be made where appropriate.

An issue for health and social care?

While this paper’s primary focus is on health care, reference is made frequently to ‘health and social care’. Health care entails preventative interventions (such as screening or immunisation), as well as treatment, care and support provided for people with diagnosed conditions that are life threatening or disabling. Treatment may involve medication, surgery, or a range of therapies designed to cure the condition or to minimise or delay its impact.

However, a good deal of the care and support provided for people with chronic ill health and long-term disability has become categorised as ‘social care’, even though interventions are designed to maintain or enhance the health and well-being of individuals. These interventions encompass the personal care required by people who are unable to feed, wash or use the toilet unaided; equipment and building adaptations that assist mobility, communication and the everyday tasks of daily living; and the social and psychological support that facilitates recovery and a return to independent living following illness or injury.

In this respect, it is often difficult to distinguish between health and social care. I will therefore refer to both health and social care when referring to the care of individuals with chronic ill health and disabilities. I will nevertheless distinguish between the NHS and local authorities who have shared and separate responsibilities for organising and delivering care services.

Age Discrimination in Health and Social Care

A matter of growing public concern?

The current discourse about age discrimination in health care is taking place at a time of growing criticism about the availability and quality of services for older people. That concern is not new but, historically, criticism has tended to focus on the provision of long-term care in hospitals and care homes. Ever since the establishment of the National Health Service more than fifty years ago, care for frail older people, including those with dementia, has often been associated with ‘Cinderella’ services. This long-established concern about care services for older people with chronic ill health and long-term physical or mental disability now extends to concern about restricted access to a wide range of health care, including acute care provided in general hospitals and the preventative or rehabilitative care provided by community health and social care staff.

The claim that age discrimination is at the root of the problems afflicting health and social care for older people has been voiced throughout the last decade. Successive reforms of the NHS and of community care have raised questions about the best way of providing and financing care for an ageing population. Researchers have looked at the implications of changes in the funding and organisation of care and have questioned practices affecting older people and their carers that have gone virtually unchallenged for many years. Lay and professional groups, concerned about civil rights, have spoken out against practices seen to be denying older people equal opportunities and equal access. Voluntary organisations, such as Age Concern and Help the Aged, have mounted successful campaigns drawing public attention to older people being subjected to demeaning conditions in hospital wards and denied treatment altogether on grounds of age. Both organisations have called for action to stop age discrimination.

By the late 1999s, when the Labour Government produced the NHS Plan announcing its intention to improve health services for older people,[1] it was compelled to acknowledge that systematic age discrimination was taking place in the health service, and to promise action to remove that barrier to service improvement. The result was evident in the National Service Framework for Older People,[2] where the first of eight standards focused on ‘rooting out age discrimination’ and ensuring that older people ‘are never unfairly discriminated against in accessing NHS or social care services as a result of their age’.

For the first time, NHS bodies and local authorities were required to put in place a number of measures to champion older people’s interests, to scrutinise all age-related policies in health and social care, and to report on action taken to end any unfair discrimination identified.

What is the evidence that age discrimination exists?

At first sight, it is not obvious that age discrimination takes place in either health or social care. Older people are major consumers of care, exhibiting apparently low levels of dissatisfaction or complaint with the care received. Although people aged 65 and over constitute around 16 per cent of the general population, they occupy two-thirds of acute hospital beds[3] and account for 25–30 per cent of NHS expenditure on drugs and 45 per cent of all items prescribed.[4] People over 75 make greater use of hospital, primary and community health services (apart from dentistry) than younger people.[5] Most residential, domiciliary and day social services are provided for older people, notably those aged 75 and over and those living alone. User surveys consistently find that older people are more satisfied with health services than younger users, and there are very few complaints alleging discrimination of any kind (race, sex or age) regarding hospital and community health services.[6]

However, a King’s Fund review of the evidence indicates that age discrimination has been taking place throughout the health and social care system throughout the last decade.[7] That discrimination takes two forms, one direct and the other indirect. Direct age discrimination occurs when a person is treated less favourably than another because of their age, for example, when a 70-year-old who has had a stroke is not helped by the local stroke care team who restrict their services to people 65 years old and under. Indirect age discrimination takes place when care is offered in such a way that particular age groups are disadvantaged because they are disproportionately affected. For example, policies to shorten lengths of stay in hospital and to maximise throughput in hospital beds can have adverse consequences for older patients, who take longer than average to recover from surgery or illness. Where no intermediate care is available to aid recuperation and rehabilitation outside the hospital, older patients – especially those living alone – can be at risk.

While age discrimination is usually defined in negative terms as acting to the detriment of older people, some policies and practices may be regarded as ‘positive discrimination’. For example, people over 60 are entitled to free prescriptions and eyesight tests. Such positive discrimination is undertaken to address (or redress) health inequalities – older people are more likely to need medication and to be on low incomes and unable to pay for their prescriptions. Measures like this nevertheless constitute age discrimination, since they exclude younger age people who may also have high health needs and low incomes. Where there are no alternative measures to meet the needs of those individuals, the ‘positive discrimination’ benefiting older people inevitably discriminates against younger people in similar circumstances.

The King’s Fund review of evidence found examples of both direct and indirect forms of discrimination.

Access to health and social care

The most visible forms of age-related policies and practices occur when upper or lower age limits have been set to restrict access to care. This is evident in:

  • preventative health care. Examples include screening for both breast and cervical cancer, which has been restricted to women aged under 65. A decision was recently made to extend breast cancer screening to all women up to the age of 70 by 2004. Annual general health checks are offered to all patients aged 75 and over who are registered with a GP.
  • a range of surgical and medical interventions. In one study,[8] GPs claimed to be aware of upper age limits restricting access to heart by-pass operations (34 per cent), knee replacements (12 per cent) and kidney dialysis (35 per cent). Other studies[9] have shown that 20 per cent of cardiac care units operate upper age limits and 40 per cent had an explicit age-related policy for thrombolysis. Upper age limits have been fairly common in cardiac rehabilitation programmes[10] and in high or intensive care units following surgery.[11]

There are many more examples where older people are known to experience restricted access to health care, even though no explicit age cut-offs have been set. For instance, older people are less likely than younger age groups to be offered health promotion advice by GPs and other primary care staff;[12] to have their mental health problems recognised and treated; and to be referred by GPs to hospital services because of their age.[13] They have also been shown to be treated less favourably than younger people in some Accident and Emergency Departments,[14] where they were less likely to receive appropriate treatment for their injuries and more likely to die (even when taking into account differences in co-morbidity and frailty).