Lynn Ruane (Independent) | Oireachtas source

The Government's amendment arises on foot of the amendment I tabled - on the basis of the Scally report - on Committee Stage. I thank the Minister and his officials for taking on board the essence of the debate on Committee Stage. I wish to make a few observations. Obviously, I will accept the amendment and not press mine. However, it is important to put on record what a patient advocate is and should look like. It is not something additional but the priority of the role. I have had some conversations over recent days with the Irish Platform for Patient Organisations, Science and Industry, IPPOSI, and the organisations under it that do a great deal of work on patient advocacy. They have been in contact with the Department so, hopefully, some of their recommendations can be taken on board.

I will outline some of their concerns and some of the values and roles they believe a patient advocate should have. They say in their communication that the text of the vacancy notice would preclude many patient advocates from applying. Candidates should have a career history at a sufficiently senior level in a complex organisation of scale or equivalent experience, board level experience, a proven track record of organisational management and organisational improvement, experience in transformational change and reconfiguration in complex environments and a track record in implementing major system wide reform. They feel it is unlikely that patients, their families, carers or their representatives who have been involved in patient advocacy would be able to apply under the high level criteria in the vacancy notice. Perhaps with regard to the two patient advocates we should consider broadening some of those terms so we truly get to the essence of what a patient advocacy role would look like.

The text of the proposed amendment referring to the opinion of the Minister concerns them. They indicate that recruitment for State boards that is ongoing could be directed, overridden or vetoed by a ministerial appointment because in the Minister's opinion the person has worked in different sectors for a long time, perhaps has been involved with the HSE and has somehow displayed patient advocacy throughout that time, even though it has not necessarily been a central part of the person's profession. They are worried about what the phrase "in the opinion of the Minister" means. The Ministers of the day change and so do opinions, so it is important to come to an understanding of what a patient advocate is so the opinion does not change from Minister to Minister and we end up with something that does not resemble a patient advocate at all. Given the context they believe that of the eight members due to be recruited from the applications following the recent vacancy notice two positions should be reserved for genuine patient advocates so the patient's voice can be heard meaningfully at the board. In identifying these two individuals, real patient advocacy experience should be prioritised over the vacancy notice requirements which call for senior management board level experience, organisational change record and so forth.

I will outline the values the group believes should be central to the role. As a patient umbrella group, it believes that public and, more particularly, patient confidence in the HSE is of paramount importance. It maintains that patients are priority partners and that trust is best achieved through working together in partnership. In the group's experience meaningful patient partnerships should be initiated as early as possible in the design stage of the proposed initiative, and in this regard it has reached out to the Department on these matters. Its members believe that one of the primary functions of the HSE board should be to promote the development of a more patient centric health service and that current HSE patient involvement mechanisms are not fit for purpose. They must be replaced by a modern, representative and active patient involvement infrastructure. The group believes the board should be tasked to oversee the development and implementation of a national patient involvement policy and that the policy should call on national directors, clinical leads, regional directors, hospital group CEOs and community healthcare organisation chief officers to strengthen patient involvement across the HSE at all levels.

Some of the issues the group has identified regarding patient advocates relate to the shared purpose. It says the HSE should facilitate discussions between stakeholders to identify each other's values, expectations and objectives and to identify how patient advocates can influence the direction of the HSE. The group refers to respect and accessibility. It recognises that the patient advocate role often can be difficult and a lone voice among professionals. It asks that all board members, particularly the chairman, receive training on patient centricity so all members can act as patient advocates in the broadest sense of the term. With regard to representativeness and diversity, the group underlines that patient advocates at the oversight level must be able to speak on behalf of the broader patient community, rather than from their condition-specific perspective. It recommends that patient advocates have extensive personal or professional experience of representing, communicating for and defending Irish patients. In the interests of giving a voice to patients who are seldom heard in healthcare prioritisation the group feels that consideration must also be given to the gender, age, ethnicity and socioeconomic background of patient advocates. Regarding the responsibility of that role, the group maintains that the patient advocate role on the HSE board must have clearly agreed and, ideally, co-created responsibilities which will be established up-front and in writing and will be revisited regularly.

On the capacity and capability for engagement, the group believes that the level of knowledge and resources that patient advocates have access to as part of their role will determine the meaningfulness of the engagement. The IPPOSI is happy to offer its extensive experience in this area to help build the capacity of new patient advocates. It also supports the fair remuneration of patient advocates for time and expenses. On transparency, communication and documentation, the IPPOSI recommends that steps be taken to open the HSE board meetings to the public. It suggests that, at a minimum, meeting schedules, agendas, minutes and accompanying documents should be published in a clear and timely manner on an easily accessible section of the HSE website.

In the context of continuity and sustainability, the group states that at least two advocates should be appointed to the role, as will be the case. In addition, alternative patient advocates must be identified to ensure representation during times of absence or illness. It correctly points out that where a vacancy arises due to personal circumstances or death it should always be filled within three months so the patient advocate role is consistent and sustained and has continuity.I felt it was important because our latest discussion on Committee Stage was on what a patient advocate looks like, what their role should be and what the essence of their responsibilities are in order that it is not caught up in the higher level running of the board and that it is truly representative of patients. It was important to put some of these points on the record as these are the organisations that are working on building the capacity of patient advocates. I am happy to resend any of that information on to the Department.