Eastern Health and Social Services Council

Making Your Voice Heard.. The first decade of the Eastern Health and Social Services Council

Contents

Forward

As the Eastern Health and Social Services Council has been in existence for 10 years we have taken this opportunity to review our achievements in a decade of representing the interests of the public. It is not possible to cover all of the Council's work in this short report but we hope that it provides a snapshot of our activities. In addition, it is not possible to list the activities of many Council members who have, over the years, provided a valuable contribution in a voluntary capacity. A contribution that to us remains largely unrecognised.

Health and Social Services are currently a prominent item on the political agenda and many long awaited reforms and decisions are beginning to be made. However user and public involvement has received little attention in a co-ordinated way, unlike England, Scotland and Wales where there has been major consultation on this subject. The success of attempts, to date, to put service users at the centre of service delivery has been patchy and can only be overcome by building the necessary skills at individual, community and organisational level.

The Council's role, powers and resources no longer meet the requirements of modern demands for user ownership of and involvement in services across the range of service provision. We recognise the need to change and would welcome a proactive dialogue on how our role could change to meet modern demands. We would wish to see a service where a user focus is embedded in the culture of all organisations. To make this happen the views of service users, carers and the public must be given the same priority as clinical standards and financial performance.

We look forward to the challenge of making this a reality.

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In the beginning...1991-1992

Its 1991. The United Kingdom's health service is undergoing a radical programme of reform. Here in Northern Ireland, this process is changing the landscape of both our health and social services. The four health and social services Boards are taking on new roles as 'commissioners' of services with services delivered by newly created self-governing Trusts.

Emerging from this challenging environment is the Eastern Health and Social Services Council - a new organisation established by government to give voice to and represent the interests of individuals, groups and the wider community on their health and social services.

The Council's objectives at first glance appeared relatively modest. It was to:

• keep health and social services under review
• recommend improvements to these services and
• offer advice to the Eastern Health and Social Services Board

The Council was to pursue these objectives through a membership of 30, of whom 12 were nominated by district councils, and a further 18 drawn from across a range of voluntary and community organisations.

The Council's first full public meeting took place in September 1991. Since then, the Council has met in public every month, and at venues that have full access for people with a disability.

After its inception, the first major task for the Council was to get its business firmly up and running. Its first year was characterised by fact-finding, consolidating the new membership and getting briefed about the many and often complex issues facing the health and social services at that time.

By the end of the year, the Council was successfully getting down to business - and was ready to make its mark...

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Getting down to business...1992-93

New community care legislation introduced to Northern Ireland in the early 1990s formed an important backdrop to the work of the Council in the formative period. Under this legislation, people needing often elaborate and complex arrangements for their care, such as those with mental health problems or severe physical disability, were to have this provided to them either at home or in a less institutional environment.

This challenging legislation provided an early opportunity for the Council to work with its three associate-councils - those established within the Northern, Western and Southern health and social services Board areas.

This process resulted in important proposals being presented to the Department of Health and Social Services, to the four area health and social services Boards and newly formed Trust organisations. This work specifically recommended that:

• People should be given more and much clearer information about the nature of community care schemes.
• People should have a genuine say about the services they receive and play a bigger part in shaping the nature, range and quality of these.
• More effective arrangements were needed to properly assess the needs of people seeking community care and
• Special effort was needed to make the complaints process surrounding community care schemes more user friendly and better understood.

A second major landmark of this first, formative year of the Council was its recognition that in a rapidly changing health and social services sector, quality should continue to take precedence over efficiency. While the new 'internal market' had emphasised a need for value-for-money among all services, the Council stressed that a critical balance was needed between costs and quality. To help strike this balance, the Council advocated that:

• Patients and other consumers must be involved in setting standards
• There must be a fully open process for setting and measuring the standard offered by all services.

The Council was clearly beginning to make its voice heard...

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1993-94: Progress through information and advocacy

By the beginning of 1993, the Council was making its mark upon the health and social services - and among the ever-growing number of people seeking its help.

The Council stated in this year that its principal objective was "to be visible and accessible to members of the public" and it actively promoted this through a number of landmark initiatives:

• The publication of a range of advice leaflets that offered information on services as diverse as those provided by hospitals, dentists, GPs and opticians.
• The opening of four new 'satellite' advice centres at offices of the Citizen's Advice Bureau in Downpatrick, Bangor, Lisburn and Newtownards.
• The setting up of a special complaints review group with local health and socials services trusts in a bid to better manage a growing number of complaints about their services.
• The Council's recognition that managing complaints from members of the public about their health and social services would form a significant part of its future business.
• The designation by the Council of a new patient advocate - a member of its staff specially assigned to represent patients in their dealings with health and social services organisations.
• The launch of a new and ambitious programme of research to monitor the quality and effectiveness of health and social services and one that continues to this day.

• By the end of the year, the number of people contacting the Council for information and advice was soaring.

  The number of general enquiries to the Council rose more than five-fold over previous year from 169 to 915. And the number of complaints on which people often needed elaborate and continuing advice also increased from 114 to 150.

  So by the start of 1995, the Council was giving a real and effective voice to needs and aspirations of service users - and challenging the health and social services to respond sensitively to these.

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1994-95: Monitoring services through effective research

The councils on-going programme of research into many important aspects of health and social services reached a new momentum in this year.

The objective of a research programme is to gather important information about services - and to subsequently use this to try and further improve them.

The Council commissioned five major research projects this year:

• An information resource to offer people a greater range of advice on many aspects of the new community care schemes.
• A review of the needs of people who act as the immediate carers of people with physical disability.
• A review of infection control measures offered by dentists.
• An examination of the range and effectiveness of 'palliative' care services for people suffering from terminal illness.
• A survey on the quality of food served to patients in local hospitals

The research projects commissioned on palliative care and hospital food were particularly important because of their sharp focus upon the very special needs of the terminally ill, and the value to patients of having hospital meals of good quality.

The Council's survey on palliative care specifically recommended to health boards and government that:

• Highly-specialist care offered by organisations such as Marie Curie and the Northern Ireland Hospice should be emulated by those offering care to patients from within the local NHS.
• People who are terminally ill should be able to work with their doctors and other professionals to plan the best programme of care for them.

The Council's survey on the quality of hospital food was undertaken among patients at the Mater Hospital in Belfast and similarly produced a range of recommendations aimed at improving the quality of meals at all local hospitals. Food for thought!

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1995-96: Building better systems for managing complaints

The mid-1990s witnessed a rapid expansion in demand from the public for more information and advice from the Council. Between 1995 and 1996, there was a growth in this demand of some 60 per cent.

Many of those people contacting the Council continued to seek advice on how to complain against their health or social services. This prompted a series of new initiatives by the Council to ensure that local people could pursue their complaints more effectively - and that health and social services organisations had better systems in place for processing these.

This important new work resulted in:

• The publication of a special leaflet offering people advice on how to make a complaint against health and social services organisations - the first of its kind in the United Kingdom.
• A survey by the Council to evaluate the effectiveness of its complaints service - which showed that more than 90 per cent of people using this found it helpful.

On a wider front, the Patient Advocacy service previously established at Belfast City Council continued to demonstrate value. More than 100 patients accessed the service during the course of the year, and the Council's work within this hospital was reinforced with a survey undertaken among patients using its accident and emergency unit. The objective of this initiative was to measure satisfaction among patients with the services offered by the unit and to help identify ways of further improving these.

Lastly, the Council continued its work during this year on a range of further survey initiatives similarly geared towards improving other care services. These included:

• An evaluation of services offered by the Down Lisburn Trust to the parents or carers of children with a learning disability.
• A survey to try and measure the prevalence of 'informal' caring - where people must look after others without any support from a health and social services organisation.

So, by the beginning of 1997, the Council was clearly well established as an organisation working with flair and commitment on behalf of everyone using health and social services.

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1996-97: Developing a culture of public participation

The Council's role during its formative years clearly pointed to a need for:

• More information for the public on many aspects of their health and social services
• More opportunity for people to pursue complaints against health and social services organisations - and to seek redress and
• More influence for the public over the planning and provision of their health and social services.

By 1997, the Council had made substantial headway in its drive to offer people more information on their care services and complaints processes. However, the next, most logical - and most challenging step - was to develop new ways of giving people a bigger and more effective say over their health and social services. The pursuit of this objective was to be the prime focus of the Council's work in both this year - and in the next three that followed.

The development of a culture that allows for more public participation on health and social services is a process that continues until the present day. Four years ago, this had its tentative beginnings in a number of initiatives undertaken by the Council. These included:

• The development of Practice Charters and Patient Participation Groups among a number of local GP practices. These gave patients a greater say over the services available from their local surgery - and set out minimum standards that patients could expect from their doctor and surgery staff.
• The setting up of a special forum to represent the interests of the parents and carers of children receiving care at Forest Lodge, a facility for people with a learning disability.
• A public meeting to help local people formulate their views on a government consultation on the costs of non-residential care.
• More direct influence for the Council in the business of the Eastern Health and Social Services Board through its involvement in special monthly meetings or 'workshops' aimed at developing policy on all services.

By the end of 1997, the concept of having greater pubic participation was therefore well established - and about to reach even greater heights.

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1997-98: The first Casualty Watch

Every three months, Northern Ireland's four health and social services councils conduct a special exercise known as a 'Casualty Watch'. This involves council staff visiting all accident and emergency units at local hospitals to assess the times that patients must wait there before receiving treatment or admission to a hospital ward.

The first Casualty Watch was carried out in January 1998. By simultaneously carrying out these exercises across all hospitals in Northern Ireland, the councils are able to compare waiting times between hospitals.

The first Casualty Watch was a landmark initiative for the Council because it very clearly demonstrated that it could indeed serve as a very effective 'watchdog' organisation. The fact that this initiative has now endured for nearly four years is testimony to its value - and of the high demand that continues to be placed upon all accident and emergency services.

The Council very much appreciates that doctors, nurses and other staff based in hospital accident and emergency units work very hard on behalf of their patients. The objective of the casualty Watch is to monitor the time needed before patients can see the doctor or nurse - not the quality of the expertise or care offered to them.

Nevertheless, the Casualty Watch has, since its inception, shown that patients attending accident and emergency units must all too frequently wait too long before receiving treatment. This fact has been communicated regularly by the Eastern Council to the Eastern Health and Social Services Board, to local hospitals trusts and to government.

The Council will continue to undertake its regular Casualty Watch until such times as waiting times there are reduced to an acceptable level. Patients who are often in pain and discomfort should not have to face the prospect of a lengthy wait - or wait upon a trolley bed rather than one in a hospital ward.

The Casualty watch is therefore a vigil that will be maintained for the benefits of patients, hospital staff and the wider community...

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1998-99: Breaking New Ground - the Citizen's Jury

The Councils goal of having greater public involvement in health and social services came one step nearer with the Citizen's Jury initiative of July 1998.

This was a ground-breaking initiative here in Northern Ireland, but such schemes are already commonplace in other parts of Europe and in North America.

A Citizen's Jury is a panel of people drawn from all walks of life who are asked to consider an important issue and make recommendations upon it.

In the Spring of 1998, the Council joined with the Eastern Board to organise Northern Ireland's first such venture.

Under the initiative, some 16 members of the public - the jurors - were selected from the local electoral register and asked to make recommendations on two main issues:

• How could Northern Ireland's health and social services be improved?
• How could people be given greater involvement in the running of these services?

After four full days of deliberations, the jury returned the following recommendations:

• There should be more consultation with the community on health and social services.
• New and more innovative forms of consultation should be applied.
• People should be offered information about services in plain and simple language without recourse to often complex health and social services jargon.
• Health and social services Boards and Trusts should make their business more open to community influence, and hold their meetings in more accessible locations - and at times outside of normal working hours.

The Citizen's Jury showed that community involvement in health and social services had truly arrived in style - and was here to stay!

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1999-2000: Quality and the Charter Mark

As the Council's first decade drew to a close and a new one beckoned, a further significant achievement was made.

Since the early 1990s, government has each year recognised the achievements of all its public services through the concept of the Charter Mark. This is an award that acknowledges a high level of satisfaction among the public. To be awarded in this way, an organisation must actively demonstrate effective services, customer satisfaction and value for money.

The Eastern Council was the first such organisation to have been recognised by government in this way when it received its Charter Mark in January.

The Council was very honoured to be recognised in this way.

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2000-01: A new Millennium - and Beyond...

And so to the future.

The Eastern Council has been in business for 10 years and feels that it has done much to improve services for people who need and use them. It equally accepts that much still needs doing - and hopes to play a part in this in the years to come.

In their three year strategy covering the period 1999-2002, the four health and social services councils have already mapped out their tasks for the immediate future. These are:

o That councils should maintain a strong regional presence on behalf of all people using the health and social services. o That councils should give consideration to having themselves renamed, in a way that better reflects their consumer orientation. o That councils should be better funded. o That they should retain a committed and balanced membership, and o That councils should be more independent.

These are challenging aspirations for the future - which the Council will pursue with the same energy and commitment that has characterised its work in the past.

As the debate about future structures unfolds this Council will continually seek to influence the future arrangements fr public representation in health and social services and citizen participation more widely.

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: 1991 : 1992 : 1993 : 1994 : 1995 : 1996 : 1997 : 1998 : 1999 : 2000 :