Submission 2001

Health Strategy Review

Introduction

Comhairle welcomes the intention to draft a Health Strategy 2001 to develop health and personal social services over the next 5-7 years. We particularly welcome the consultative processes which have been put in place by the Department of Health and Children to enable the public as well as the partners in the health services to contribute to the development of that strategy. However, we consider that the time limits set for submissions is far too short and does not allow for adequate consultation with clients, staff and Board members. Some of the issues which need to be addressed, in particular in the area of service delivery, require lengthy consideration and cannot be adequately addressed in the time available.

The Health Strategy will deal with many complex medical and social issues. Comhairle does not propose to comment on the medical aspects of the strategy or its aims in relation to health outcomes. Instead, our submission concentrates on those areas of the health services with which citizens experience difficulties. Our concentration is on entitlement, service delivery and citizen involvement in the planning and delivery of services. We also outline issues of particular relevance to disadvantaged groups, including people with disabilities.

Comhairle has responsibility for the provision of information, advice and advocacy services so as to ensure that individuals have access to accurate, comprehensive and clear information relating to social services. It also has the remit of providing information on the effectiveness of current social policy and services and to highlight issues which are of concern to users of those services.

An examination of the problems presented by citizens using the services of Citizens Information Centres (CICs)(See Note) shows that the following are the main health service delivery issues arising:

• lack of coherence between social welfare payments, minimum wages and income limits for medical cards
• lack of legislative clarity about health and social service entitlements
• the gap between formal entitlements and actual entitlements and the gap between policy statements and actual practice
• absence of formal or actual entitlement to what should be core services
• inequality of access
• inadequate or non existent complaints and appeals procedures.

Aims of the 2001 Health Strategy

Shaping a Healthier Future -the Health Strategy which was drawn up in 1994 sets out the principles underlying the provision of health services - equity, quality of service and accountability. It also sets out the concepts of health gain and social gain as the yardsticks by which the services should be measured. There seems to be a broad consensus that these principles and concepts remain valid.

The 2001 strategy needs to

• have clear targets and time scales;
• set out which values and services have priority;
• clearly establish entitlement to public, private and voluntary services;
• set out which service provider is responsible for each service;
• clearly establish the role of the public, private and voluntary sectors in the delivery of services;
• set out the overall direction of spending - in particular, the proportion of spending which is to go to support the private sector both in direct support and in tax relief.

The strategy should have a timetable for each proposed action. In effect, the strategy and the action plan ought to be aligned.

Implementation

We are particularly concerned that many of the commitments in the 1994 Health Strategy in relation to entitlements have not been implemented.

For example,

• National guidelines and legislation to deal with community care services have not been drawn up;
• The clarification of long term care entitlements to health and social services;
• The promised formal appeals system for medical cards etc has not been introduced;
• The promised charters of rights in relation to children, the elderly, mentally ill people etc have not been published;
• There is no requirement that health authorities carry out evaluations of patient satisfaction;
• The commitment to more and better information has not been fully implemented.

While the legislation to establish the Eastern Regional Health Authority has been introduced and implemented, it did not deal with the wider issues of clarifying the responsibilities of other executive agencies.

Overall health expenditure

The question of the level of overall expenditure on health is a matter of political choice. There is probably no optimum level of expenditure and there will never be enough money to meet all demands.

Within whatever overall level of expenditure is agreed, it is imperative that access to services is equitable and that services are delivered in an equitable, efficient and respectful manner. The strategy and its principles needs to be applicable no matter what the level of resources is. This is why it needs to set clear priorities and an action plan to implement them.

Decisions should be made on the proportion of expenditure which should accrue to preventative services, primary care, community care etc and this proportion should be maintained in times of economic stringency. The strategy should set out the appropriate balance between primary health care in the community and hospital, accident and emergency and out-patient care.

The concentration in discussions of health services tends to be on medical care - GP services and hospital services. Sufficient attention is not given to the personal social services even though these services are essential for both health and social gain. The strategy needs to address how these services are to be developed and co-ordinated with GP services and hospital services.

The strategy should address the question of the role of tax incentives in the provision of private health care. The tax incentives for the provision of private nursing homes and the recently introduced incentives for the provision of private hospitals must be regarded as part of the overall health budget and assessed for equity and health and social gain. These and any future related tax incentives should be set in an overall policy framework. It may be that tax incentives are a suitable way to provide for the private health sector but there is no clearly stated underlying policy framework and no assessment against the principles of health service provision.

Health Levy

In a number of pre-budget submissions, the NSSB argued in favour of incorporating the health levy into the general income tax system. This argument was put forward in the interests of simplifying the tax system and removing the specific income traps which the operation of the levy creates.

The health levy, unlike PRSI, does not confer any direct entitlement to benefit.

Comhairle considers that incorporating the levy into the general tax system would improve the tax system. If the health levy is to be retained, it should be increased to the level required to fund the public health system (with a corresponding reduction in the general tax rates) and the anomalies associated with it removed. It should be renamed the health tax so that people could identify the part of their income going to the health services.

Priorities

The strategy should set out the relative priorities of preventative services, community services, hospital services, investment in high tech services etc.

The strategy also needs to set out which values have priority and which services have priority. For example, it should set out the areas to which social workers should give priority - support for families with young children, children in care, services for older people, foreign adoptions etc. This is especially important at a time when manpower shortages almost certainly mean that all the demands cannot be met.

Public, Private and Voluntary services

The 1994 Strategy views the mix of private and public health services provision as desirable. In fact, it would be more accurate to describe the system as a mix of public, private and voluntary. A careful examination needs to be made to establish how this mix can ensure equity of provision.

The Health Strategy must make a clear statement about the role of the private health services. The Government's policy on the development of private health services should be clearly stated. If it is intended that certain groups should be catered for by the private sector, then this should be clearly stated. The future role of tax incentives in the area should also be set out.

The role of the voluntary sector is examined further below.

Organisation of health service delivery

Health services and personal social services are delivered by a plethora of organisations at present. While health boards have the main responsibility, they do not actually deliver the primary care services and the hospital services are delivered by a number of agencies, including health boards. The voluntary sector is the major service provider in a number of areas, notably in services for people with physical and mental disabilities.

The manner of delivery of services needs to be examined closely to ensure that it meets the requirement of equal access to services.

The issue of co-ordination of services has to be addressed. For example, in primary care, there is a need for multidisciplinary teams in the community.

Hospital Services

The strategy must address how exactly equity of access to hospital care is to be ensured. There are difficult issues involved - difficulties of organisation, personnel and geography. The role of private hospitals and private beds in public hospitals must be clearly set out. The siting of specialist services and access to those services from all parts of the country must be addressed.

While efforts have been made in recent years to improve the out-patient arrangements in hospitals, it would appear that these arrangements are still not as patient friendly as they could be. It is still difficult, and sometimes impossible, for people to organise consultations with two or more consultants on the same day. This is a particular problem for older people who are more likely than others to need the services of different specialists.

Health agencies

A number of new agencies have come into existence in recent years. Their respective roles and functions are not at all clear. In particular, the roles of

• the Health Boards Executive
• the Office for Health Management
• the Office of Health Gain

need to be clarified.

The generally stated understanding of the nature of the relationship between government departments and executive agencies is that the department sets out the policies to be implemented and the executive agency implements that policy. The strategy needs to set out clearly the relationship between the Department of Health and Children and its executive agencies e.g. the Irish Blood Transfusion Service, the Irish Medicines Board.

The executive agencies should be obliged to follow the Department's policies on openness, transparency and accountability.

The issues arising in the case of the hospitals involved are different as they are not agencies of the Department in the same sense. It would, however, be open to the Department and/or the Health Boards to include requirements about openness etc in their contracts with the hospitals.

The Voluntary/Community sector

The White Paper on a Framework for Supporting Voluntary Activity and for Developing the Relationship between the State and the Community and the Voluntary Sector provides the blueprint for the relationship between the State and the voluntary sector. The proposals in the White Paper are to be implemented by an Implementation Group which includes representatives of the voluntary sector.

The Health Strategy should set out how the Department of Health and Children and its agencies will adhere to the principles set out in the White Paper. It should set out

• the plans for setting up a Voluntary Activity Support Unit
• the statement of the objectives in providing funding for voluntary organisations
• the criteria for funding schemes - in particular, there should be clear guidelines for Section 65 grants.

The voluntary sector complements and supplements the State as a health service provider and is the dominant provider in some areas. Where the voluntary agencies are the dominant or significant service provider, the standards of service should be the same as for the statutory sector.

In the area of intellectual disability, the contracts with the service providers should include a mandatory requirement to cater for certain people. At present, there are no places in the system for substantial numbers of people and no institution is obliged to provide the services.

As well as the citizens' right to a service, there must be a corresponding obligation on a service provider to provide that service. This should apply not only to areas where the service is directly provided by state agencies but also to areas where the service provision is contracted to voluntary bodies. This is especially important in those areas where the voluntary sector is the dominant service provider. The same standards of accountability should apply to voluntary sector providers as apply to the statutory sector.

Local development

Health Boards do not operate in isolation from other local services. We consider that the strategy should set out the role of the health boards in local development, should specify how the health boards should contribute to local development and how they should interact with bodies such as City/County Development Boards.

Needs of particular groups

The strategy should separately address the needs of particular groups, including

• travellers, whose life expectancy is considerably below the average
• immigrants
• older people
• people with mental illness
• people with physical disabilities
• people with intellectual disabilities

The health strategy should set out how the particular needs of these groups will be addressed through the mainstream delivery structures.

Clarity of entitlement

The gap between formal entitlement and actual entitlement needs to be addressed. There is also a need for clarity in the legislation governing entitlements.

In particular, legislation in the following areas needs to be clarified

• entitlement to medical cards (see below)
• entitlement to community care services
• entitlement to long term care services
• consent to medical procedures in the case of children, adults with intellectual disabilities, adults with dementia.

Entitlement to community care services

At present, there is no clear legislative entitlement to services such as home helps. These community care services should be treated as core services and there should be a clear legislative entitlement.

While progress has been made in improving access to dental and optical care for medical card holders and others who are formally entitled to such services, it remains the case that for almost all adults aged 16 -66 years, formal entitlement remains just that. Legislation should either withdraw such formal entitlements or ensure that they are delivered.

Long-term care

We do not accept that it is appropriate for the Department of Health and Children to make a distinction between eligibility and entitlement as they do in their response to the Ombudsman's Report on Nursing Home Subventions. Anyone who is eligible for a service should be entitled to it. If they are not entitled to get the service, this should be clearly stated.

The Ombudsman's Report highlighted an issue about which the then National Social Service Council first expressed concern in 1978 (Relate, January 1978). This is the inconsistency of legislative provisions in relation to entitlement to long term care. In the Health Strategy, 1994, a commitment was made to address this issue. Specifically, the following issues need to be clarified:

• when do long term care charges apply?
• who is entitled to long term care in health board homes?
• if eligible people are unable to be accommodated in such homes, is there a right to a contracted bed in a private nursing home?
• how is the means test for long term care to be operated?
• how are assets to be assessed?
• how are the needs of the spouse of a long term care patient to be addressed?
• what minimum income must be retained by patients?

We agree with the Ombudsman that there is, at present, a clear legislative entitlement to in-patient services. If it is decided that this entitlement cannot be financed or, for other reasons, should not be maintained, then the legislation must be changed.

Consent

There is also a need for legislative clarity on issues of consent. This arises in the case of children, where it is usually assumed that parental consent is necessary and sufficient - this is sensible but has no legal basis. More difficult issues arise in the case of adults with intellectual disabilities and people with dementia. These difficult issues have to be addressed and clarified in legislation.

Medical Cards

Entitlement to a medical card

Legally, entitlement to a medical card arises if, in the opinion of the Chief Executive Officer of the health board, people are “unable, without undue hardship to arrange general practitioner, medical and surgical services for themselves and their dependants”. There is no definition of undue hardship.

In practice, the decision to award a medical card is almost always made on the basis of the agreed income limits. While there is scope for the CEO's discretion, in practice, this is not widely used. It is the experience of CICs that very few people whose income is above the limits get medical cards, the exception being terminally ill people.

In recent years, various groups have been able to retain their medical card when returning to work or taking up various labour market schemes. This was an entirely sensible labour market policy but it was done without any legislative basis. There was a clear reluctance on the part of the Department of Health and the Health Boards to implement it with the result that, in some cases, the policy was not implemented for at least a year after it was announced. The intention to award medical cards to everyone over 70 is welcome but, again, should be done with a proper legislative basis.

Even if it is decided not to extend medical card coverage, we consider that the legislation on entitlement to a medical card should be clarified.

Families and medical cards

The medical card system is an all or nothing system in relation to GP services. The potential loss of a medical card is a major issue for low income families, especially those with young children. The disincentive to work inherent in the potential loss of a medical card continues to be a significant problem. It may be that the perceived value of a medical card in these cases is greater than its actual value but it remains the case that people make important decisions on the basis of whether or not it affects their entitlement to a medical card.

Consideration should be given to having a system which does not give rise to stark choices.

Among the options that could address the problem are:

• free GP care for all children, say, under 10
• greatly increased income limits per child under 10 thereby allowing many more low income families to qualify
• aligning family entitlement to medical cards with entitlement to Family Income Supplement
• the availability of a new level of entitlement, for example, a subsidy towards the cost of GP services for people, say, with a taxable income below the level of the standard rate band or for the children of these people or some other variation

Medical card income limits

People who would traditionally have been entitled to a medical card - social welfare recipients - have experienced problems in recent years. This is because increases in social welfare payments have not been matched by corresponding increases in income limits for medical cards. People receiving Invalidity Pensions get an extra amount at 65 and are likely to lose their medical card. People between the ages of 66 and 69 may lose their cards. Others have lost their cards because the National Minimum Wage brought their earnings above the income limits.

These problems could be addressed in a number of ways. Everyone whose only income is a social welfare payment should have a medical card. The income limits could be aligned with, for example, the National Minimum Wage or the Family Income Supplement limits.

Preventative health services

Increasing access to preventative health care should be a key element in the Health Strategy. In particular, various preventative care procedures e.g. smear tests, should be included in the range of services available to medical card holders.

Complaints/Appeals Procedures

Citizens do not have a formal means of complaint about the delivery of health services. There are informal procedures available in health boards to deal with a limited range of issues. Informal systems of this nature are not adequate. The Ombudsman and, indeed, the Strategic Management Initiative recognise the need for independent appeals and complaints mechanisms.

The absence of a formal complaints and appeals mechanism has been highlighted by the NSSB for many years. Such a mechanism has been promised in virtually every Programme for Government over the past 20 years. The intention to establish it has been included in some of the national agreements and it was also included in the 1994 Health Strategy. Formal appeals and complaints mechanisms have been put in place in many areas of the public service - most recently in relation to payments to farmers under various EU schemes. The blueprint for such systems exists in the DSCFA Social Welfare Appeals Office (the new Agricultural Appeals Office is based on this). There have been several pieces of legislation in relation to the health services in recent years and legislative arrangements for an appeals system could have been included.

The Charter of Rights for Hospital Patients and similar charters are not adequate mechanisms for the enforcement of patients' rights.

Quality Assurance

We welcome recent developments in the monitoring of social services and the regulation of health professionals.

Social Services Inspectorate

The establishment of the Irish Social Services Inspectorate is a welcome development. We understand that, at present, the Inspectorate is inspecting health board run homes for children at risk. There are, as yet, no independent inspection arrangements for other health board establishments such as welfare homes. We consider that the Inspectorate should:

have an independent statutory existence

have its remit extended to a range of other institutions, including those providing services for people with intellectual disability, welfare and similar homes for older people

Inspection reports should be publicly available without having to have recourse to the FOI Act.

Statutory control of health professionals

We also welcome the proposal to set up a statutory registration system for health and social professionals who do not currently have such a system. - “Statutory Registration for Health and Social Professionals”, Proposals for the Way Forward, Department of Health and Children, October 2000.

(The only professions with statutory registration are doctors, nurses, dentists, pharmacists and opticians).

Statutory registration systems provide an element of consumer protection for clients of the relevant services and a means of redress in cases of alleged misconduct or incompetence. They also provide protection for properly qualified professionals.

The document emphasises that the primary concern in developing a registration system is to ensure the delivery of the best possible service to patients and clients. However, we consider that the proposed involvement of consumers/patients/clients in the Registration Council and Registration Boards is inadequate. The proposed Council and Boards should have greater citizen participation than is proposed.

It is unlikely that consumer confidence in professional self-regulation will increase unless there is greater consumer involvement. The regulatory arrangements for the already regulated professions should be looked at again with a view to improved consumer representation.

Information

Information plays a vital part in enabling people to gain access to health services. Therefore, it is incumbent on the Department of Health and Children and the Health Boards and other delivery agencies to provide good quality, accessible information on health and community services.

There is a requirement to provide information in relation to health education and healthy lifestyles. This information should be specifically targeted at the groups who are most in need.

Information on rights and entitlements, priorities in access to services etc is also required. The quality of this sort of information provision varies from one health board to another. The major voluntary sector providers are now generally covered by FOI legislation but the information provided is minimal. Most voluntary hospitals, for example, describe the services they provide but they do not provide essential information in relation to waiting lists, the criteria which they apply for admission to elective procedures, who actually makes the decisions etc.

The Department should set out an overall policy for information provision and require all providers to adhere to it. Comhairle, as the major information agency would be pleased to co-operate with the Department and its agencies in the design and implementation of a comprehensive information strategy. The independent information providers, including CICs could become involved in an active information strategy that covers both health information and entitlements.

Citizen involvement

There is, at present, very little formal citizen involvement in the planning and delivery of services. The strategy needs to set out how this situation can be improved, how people using the health and social services can be empowered to assert their needs and how conflicts between official policy and the expressed views of communities and individuals can be resolved.

Consideration should be given to how health boards can be more representative and responsive to the people being served. Direct citizen representation should be considered.

The strategy could outline a role for users' forums, for patient advocates and other citizen involvement mechanisms. In this context special efforts should be directed to people where barriers to participation may exist, i.e. people with a disability, older people, travellers and immigrants.

The strategy needs to address how decisions are to be made when there is a clear conflict between the medical view of best practice (for example, the concentration of specialist services) and the local community desire to retain or provide services locally.

Equally it should address the difficult issues which may arise when local communities do not want services (for example, drug rehabilitation services or community homes for people who have been or are mentally ill) placed in their areas.

All health service providers should be brought within the remit of the Ombudsman and the possibility of providing advocacy services either in the public sector or through voluntary organisations should be looked at. (The New Zealand Health and Disability Commissioner's office (the equivalent of the Ombudsman) includes an independent Director of Advocacy).

Footnote

Comhairle registers and supports a national network of 80+ Citizens Information Centres. In 2000, CICs dealt with 313,300 queries from members of the public.