Mr. Tony O'Brien:

I thank the Chairman for the invitation to attend the meeting to speak on the issue of advocacy.

Advocacy in all its forms should ensure people, particularly those who are the most vulnerable or incapacitated because of their illness, are able to have their voice heard on issues that are important to them. The requirement for effective advocacy crosses all of our health services, including acute hospitals, the care of older persons, services for people with disabilities and mental health services. Self-advocacy is the ideal form of advocacy, particularly for people who are able to communicate their wishes and preferences. The ultimate goal of any advocacy model should be to empower people and give them the confidence, where possible, to advocate for themselves.

In many cases, advocates are front-line workers or trained volunteers and professionals. While I would like it to be otherwise, sometimes people feel powerless in navigating the health care system or in understanding the care options open to them. Often, when they access services, they are very vulnerable or very ill. It is in these situations that friends, relatives or those who have had similar experiences can and often do advocate on their behalf. While some people are fortunate to have powerful advocates among their family and friends, it is also important there are advocacy arrangements in place which are independent of any aspect of the service or any of the statutory agencies involved in providing care.

The HSE invests in several organisations and groups which, either directly or indirectly, provide health information, advocacy, support with complaints handling and more practical support. Examples of these agencies are SAGE and Patient Focus. We have also established a national patient forum, made up of advocacy groups and patients. This forum has already inputted into the medical card review and that relating to ambulance services. It is available to all our service divisions to support the planning, design and delivery of services.

In 2014, the HSE, together with Atlantic Philanthropies, agreed to fund a national support and advocacy service for older people known as SAGE. This service is managed by Third Age, a national voluntary organisation from which the committee heard earlier this morning.

SAGE is building a team of people capable of tackling the most complex support and advocacy challenges presented by older people, and to date it has dealt with 652 cases. The service has also mobilised 138 volunteers who serve as facilitators for residents' groups in nursing homes and support for vulnerable older people in hospital emergency departments.

Within our disability services are a significant number of community and voluntary organisations, most of which are funded by the HSE, which provide some form of advocacy. The extent of this provision has not yet been systematically documented, and the HSE has established a project to map this. This process will include consultation with people with disabilities who live in residential settings. The HSE is also working with Inclusion Ireland to establish service user and family councils or forums in a number of intellectual disability service settings. In addition, work is under way with the disability sector to establish a national volunteer advocacy programme based on the SAGE model for older persons. Progress will be made on the development of this programme in 2016.

The committee is aware that in December 2014 the HSE appointed its confidential recipient, Leigh Gath, following revelations of abuse at Áras Attracta in Mayo. The confidential recipient provides a place where individuals with concerns about the abuse of vulnerable adults in residential settings can come to have their concerns listened to and investigated. She also acts as an important advocate for the complainant, navigating the system and ensuring the concerns raised are dealt with appropriately.

The HSE also acknowledges the important work of the National Advocacy Service, supported by the Citizens' Information Board, which provides an independent advocacy service for people with disabilities. While the service has a team of full-time advocates, there is still a large cohort of people with significant disabilities who have either no access or very limited access to a case advocate. The HSE would welcome further enhancement of this service and for it to be put on a statutory footing through the commencement of Part 2 of the Citizens Information Act 2007.

The HSE’s acute hospitals division recently developed a plan for greater patient partnership across the hospital system. Hospital groups are putting in place patient advisory councils and some groups have appointed patient advice and liaison co-ordinators. These will be extended to all groups. This work will be supported by a national patients' council.

A key indicator in any assessment of the quality of our health service is the way it reacts to the concerns raised by its clients, patients and service users. Complaints are an important way for the management of services to be accountable to the public, as well as providing valuable information about the performance of the organisation and the conduct of people that work within and for it. It was in this context that in May 2015 the Office of the Ombudsman published a report on its investigation into how public hospitals in Ireland handle complaints about their services. In particular, the Ombudsman looked at how well public hospitals listen to feedback and complaints and whether they are learning from these complaints to improve the services they provide. The HSE has now established a national complaints management office, which will provide leadership in how we respond to and learn from feedback right across our system. In an associated initiative, the HSE will, together with HIQA and the Department of Health, introduce patient experience surveys across our acute hospital system from 2016. We will support the Department of Health in the establishment of the patient safety office and the development of its work.

I should also mention the introduction of the Assisted Decision-Making (Capacity) Bill. The provisions of the Bill will apply to all health and social care settings, and the HSE has established a project team to ensure implementation of the provisions of the Bill once enacted. This will include implementation of the codes of practice for those acting as advocates on behalf of patients and service users. The HSE strategy supports the simplification of legislation governing the complaints process and the extension of the remit of the Ombudsman to include complaints related to clinical areas.

I believe strongly that every patient or user of our services is entitled to be heard on the decisions that affect their lives. Effective advocacy must therefore be supported at all levels of the health service, and the HSE is committed to continuing its work in this important area. There is, however, a very real requirement for advocacy services that are truly independent of and, therefore, not at risk of undue influence from those services. The HSE therefore welcomes the recent announcement by the Minister for Health of the establishment of an independent national patient advocacy service in 2016. We will endeavour to answer any questions committee members may have.