Tom McEllistrim (Kerry North, Fianna Fail)
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Last year a public consultation exercise was put in place for the proposed health information Bill which will deal with the collection, use, sharing, storage, disclosure and transfer of personal health information as well as the rights of individuals to control and access their health information. The views expressed in the consultation process are rightly being taken on board in preparing the Bill. Consultation is vital to achieve understanding of the concept of communities and to win support for proposals. It also plays a vital role in informing policy makers and developing their understanding of the views and concerns of the public at local and national level.

There is a need to fast-track the development of the community consultation element of the national strategy for service user involvement in the health service. The objective of the current health reform programme is to deliver better patient care and safety. The health service has not been short of plans, reviews and reports. However, one of the criticisms of health service planning has been that it has tended to be expert driven rather than consumer led. It has thus been disempowering in nature.

The need for community input from local health service providers such as general practitioners, consultants and nurses, as well as ordinary people, is clear. The national strategy for service user involvement states that on a community level, consultation will lead to improved policies to address inequalities in health, services that respond better to the needs of the community, more equitable and inclusive services that help to address social exclusion and reduced complaints and increased trust.

To give the Health Service Executive some credit, mechanisms for complaints for health service users have already been made much easier. In hospitals and local health offices, posters and leaflets are displayed giving people information on how they can have their say. The HSE assures the public that comments and complaints are read every day and are responded to as soon as possible.

In the United States and Canada, local prospectives are developed through the use of community based workshops and forums which examine health programmes to ensure they are accessible, appropriate and relevant. Rural stakeholders, providers and communities are consulted to strengthen understanding about health issues and develop innovative solutions. That type of local consultation could and should be developed here, particularly when so much change is going on in the health service.

The HSE is working to deliver proper primary care services in our communities but what does primary care mean to the ordinary man or woman in the street? They are not looking for primary care because they are not truly familiar with what it is and what it will mean at local level.

If real practical communication systems were in place, people would know, understand and demand these services. Health service surveys point to positive feedback on hospital experiences from the vast majority of patients. However, the mistakes and the crises around misdiagnosis and the negative stories are what the public at large hear and read in the media. Consequently, the HSE frequently finds itself preparing press releases that are essentially rebuttals to various claims from pressure groups, politicians and commentators. As we have learned to our cost in the past, when you are explaining, you are losing. It is correct that the record should be put straight. However, it would be much better to be proactive, positive and communicative with the public.

The health reform debate has often been reduced to soundbite. The community should be encouraged to find their voices in ways other than through protest groups, marches and mass meetings. Those voices should be listened to and respected. After all, experts do not necessarily always have all the answers. The consultation process should be ongoing and built into the system, and not just for a formal exercise at the start of the programme.

Many column inches have been used to refer to the myriad of vested interests in the health sector. Much frustration has been articulated over the years by the Minister and the HSE with regard to those vested interests. The most important interests should be the communities that are being served.

The HSE must tell people why decisions have been made. It is not enough to say that another way of providing a service is safer if it does not explain and discuss why and how. The management structure changes announced last year should bring more decision making to regional level and hopefully assist in this task.

It has been said that the reform of the health service is like turning around an ocean liner but that is easier to do if the crew and the passengers are working with one another and understanding what is going on. I will conclude by quoting an old Chinese proverb which I believe is appropriate. It states:

Go to the people

Live among them

Learn from

Love them

Start with what they know

Build on what they have:

But of the best leaders

When their task is accomplished

Their work is done

The people all remark

"We have done it ourselves".

Barry Andrews (Dún Laoghaire, Fianna Fail)
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I thank the Deputy for raising this matter which I am taking on behalf of my colleague, the Minister for Health and Children, Deputy Mary Harney.

The Department of Health and Children has led the development of the National Strategy for Service User Involvement in the Irish Health Service and the office of consumer affairs in the HSE is now responsible for implementing it. The Deputy will also be aware that last year, the Minister for Health and Children was responsible for the publication of the report of the Commission on Patient Safety and Quality Assurance. That report made the following recommendation: "The proposals in the National Strategy for Service User Involvement in the Irish Health Service should be implemented as a matter of urgency to ensure that patients and their families can influence policy development, service delivery and health service development and evaluation".

Subsequent to the publication of the report the Minister has appointed an implementation steering group led by the Department's chief medical officer. This group will oversee the various projects needed to implement the recommendations of the report. One of the projects is specifically directed at driving service user involvement in the health services.

The HSE has spent considerable time communicating and raising awareness of the National Strategy for Service User Involvement and has developed a dedicated web page with various on-line resources. The office for consumer affairs in the HSE has also established a database of contact details of service users and community group representatives who are interested in participating in local or national events relating to the design, development and-or delivery of Irish health and social services. Since its development in May, it has over 200 service users and community groups registered.

Within primary care, 19 projects are currently being supported under a joint funding initiative between the HSE and the Combat Poverty Agency, the purpose of which is to support and enable disadvantaged communities and groups to participate in local primary care teams and networks. Within the hospital setting, the HSE has committed in its service plan to the following: making available high quality information to service users about their treatment and care; involving service users as much as they want in decisions about their treatment and care; ensuring service user involvement leads to service improvements; guaranteeing service user involvement in service development; and promoting the HSE comments, compliments and complaints policy, "Your Service Your Say" to all service users.

The Department of Health and Children is committed to engaging service users in its policy development work and the Office of the Minister for Children and Youth Affairs has shown considerable leadership in the engagement of young people. The HSE is currently focusing on ways for services users to comment on the quality of care in a national patient survey programme. This is to be piloted in October and preliminary results are to be made available in early February.

Other developments include the following: service panel guidelines are currently being circulated for consultation and will be disseminated across the HSE in October 2009; draft national guidelines for service users outlining what service users can expect from the HSE and what the HSE can expect from service users are also being developed and will be available for consultation shortly; and 30 volunteer patient advocates have been trained through the National College of Ireland and will be working in both the private, public and voluntary sectors.

This demonstrates the considerable commitment that the Minister and the Department of Health and Children, including my office, have given to the importance of involving service users in all areas of our work.