Ms Sheila O'Connor:

Patient Focus would like to begin by thanking the Chairman, Deputy Jerry Buttimer, and other members of the Oireachtas Joint Committee on Health and Children for their invitation to speak on this important occasion of the publication of the Health Information and Quality Authority, HIQA, report. I would also like to thank the clerk to the committee and his staff for their invaluable help in putting this together at such short notice.

I would like to tell the members about Patient Focus and patient advocacy. Most importantly, I will explain a little about our involvement in the Portlaoise scandal. I would also like to tell them about the beginnings of Patient Focus and what we have achieved through advocacy to date. I have provided a backup document, Problems Patients Experience, concerning the most common problems experienced by people who contact us and how we endeavour to help them through advocacy.

Patient Focus is an Irish national patient advocacy service. We were set up in 1999 and established as a company limited by guarantee shortly afterwards. We have charitable status. We have four staff and are funded by the Health Service Executive, HSE, at the rate of €216,000 per annum.

Why is patient advocacy necessary and what is it?Too many people are injured physically, emotionally and psychologically by health care. That is not widely known or understood. We listen to patients' stories which, sadly, are often chaotic. By listening to them we help them make sense of it. Their journey with us can be as short or as long as they want; it is entirely up to them.

Advocacy can mean something as exceptional and unusual as arranging last week’s meeting of the affected families in Portlaoise. More usually, it means providing assistance with regard to obtaining records, attending meetings with appropriate professionals to discover what happened, explaining processes or accompanying patients to investigations and reviews. All of that involves familiarity with and access to people within the health care system. It also involves working with outside professionals such as counsellors, doctors, coroners and lawyers, depending on the seriousness of the matter. We sit on various reviews at local and national level for the HSE, the Nursing and Midwifery Board of Ireland and HIQA. We give regular briefings to the HSE on the issues that arise. We have constructive relationships with decision makers in the political and health care areas. In this we are unique nationally and internationally.

Our ethos is patient and person-centred. We understand it is very important to listen, to go at the patient's pace and to be led by them at all times regarding the decisions they make. This approach springs from the view that the individual person's dignity, autonomy and power of decision making is protected at all times.

Staff members of Patient Focus have been involved in patient advocacy since 1996. In a short space of time, in the mid to late 1990s, the extent of the damage suffered by some patients became very clear to us.

Sometimes this damage and hurt lasts a lifetime. As we began to listen to many sad and disturbing stories, we resolved that the health care system needed to listen too and to take notice of the damage people experience. It also applies to relatives. It is very important that people find their voice. In the late 1990s, it became clear that people were no longer willing to be written out of the history of the practice of medicine. Damaged patients felt they were placed in corners, forgotten about and treated as an embarrassment by the very people and institutions tasked with their care. In the late 1990s, it also became clear to us that patients’ issues fell into a number of categories and the backup documents I have provided to the joint committee explain those categories. They also relate to all areas of the health service.

I will now talk a little about our involvement with the Portlaoise maternity unit and the people who have asked me to appear before the joint committee today, for which I have been very honoured and thank them. Our staff of four provided support to approximately 200 families affected by revelations about maternity care nationally but most particularly in respect of Midland Regional Hospital, Portlaoise. We met Mark and Róisín in 2012, when they told us the awful story of what happened to their baby. From early 2013, we worked with a small number of bereaved families and mothers to bring to the attention of the Health Service Executive, the Department of Health, the Health Information and Quality Authority and the public what appeared to be the unnecessary deaths of four healthy, full-term infants in Portlaoise. These babies were Mark, Joshua, Katelyn and Nathan. They died during labour or shortly after delivery as a result of oxygen deprivation. Then we heard of Amy and Ollie’s little baby, Mary Kate. These parents will explain much better than I can, during the course of this meeting, how difficult the entire process has been for them.

Stories of damaged babies and injured mothers in Portlaoise, as well as concerns about safety in other maternity units, came flooding in to Patient Focus after the RTE "Prime Time" programme. Within days we had approximately 180 contacts from worried people, 80 of which were from Portlaoise. Other concerns came from units throughout the country including, but not exclusively, Mullingar, Cavan, Portiuncula, Tralee, Letterkenny, Wexford and Sligo. There also were serious complaints about care at the three major Dublin hospitals. No hospital escaped. Heartbreaking stories emerged, some from as far back as the 1970s and 1980s, some recent and others as recent as the previous weeks. What united them is they were all visceral in the grief expressed at the loss or damage to babies. I think any human being can understand that completely. Within days of the programme, the Department of Health set up a scoping review of the hospital and concluded that the maternity unit in Portlaoise was unsafe. This caused huge challenges, both personal and financial, for Patient Focus and its staff. Commitments made at the time in terms of increased funding to cover the cost of increased travel, staff work, etc. have not been honoured by the HSE.

A number of reviews have been established, including HIQA investigations and an internal HSE review into some 200 cases. In some cases, individual clinical reviews were also established as a result of the information that came flooding in. The results of most of these reviews, with the exception of the HIQA investigation, are still awaited. We believe these delays are completely unacceptable. The families present will tell members about the effects of such delays and the energy necessary to obtain a review in the first instance. In Patient Focus, we believe that when adverse events occur, an external review of care should be offered immediately by relevant experts. We believe matters should be explained openly and sympathetically to the people concerned within a month of the occurrence. In the interests of patient safety and learning, the HSE can continue to conduct its own reviews. It became clear to us last week that the first anniversary had been reached for a number of other babies who had died in similar circumstances and the parents still had no idea why their little baby died. Moreover, they are still waiting and probably will wait for a considerable time to find that out, which in my view is completely inhumane.

How did Patient Focus develop and what are our achievements? Many changes have occurred since we began our work, much of it achieved by our clients, although many more changes are still required. Prior to the freedom of information legislation in 1997, Irish patients had no legal right of access to their own medical records. Indeed, such was the lack of interest in this legislation within the public health system at the time and even into the mid-2000s, it was very difficult for any but the most persistent patient even to obtain a copy of their medical records.

Today there is still no legal right to medical notes from private hospitals or institutions, or for private patients of general practitioners. That is totally unacceptable.

In the late 1990s, there was no formal complaint system in operation and often the only way patients could receive answers to their questions was to consult a solicitor. In the late 1990s, members of Patient Focus spoke to staff in the system about the establishment of a patient complaint office. They told us of proposals to establish patient liaison offices but that the word “complaint” could not be used because of strong negative feedback from some staff. Some staff believed “patients do not have complaints” or worried it would just encourage complaints from cranks or disgruntled patients. The expression I have quoted is an exact one heard at the time. Indeed, a medical member of Patient Focus who advocated support for damaged patients at the time was described by some colleagues as a "turkey voting for Christmas". This is not really all that long ago. It was ten or 15 years ago.

At this time, the regulation of doctors was effectively in secret also, behind the closed and secure doors of Lynn House, the headquarters of the Medical Council at the time. Poor performance as a doctor was not medical misconduct so medical error, however serious, could not found a fitness-to-practise inquiry and result in the removal of a doctor from the medical register. However, I am thankful the Medical Practitioners Act of 2007 changed all this. It must be said that this was mainly as a result of patients who persisted despite the huge financial and other risks involved to them and their families. These patients were supported by numbers of doctors and nurses actively engaged in their professional work at the time. This has to be said because it is true. Notably, among these patients are a number associated with groups who came together with Patient Focus to claim their pain and hurt as real and to make sure the system heard them. These are the victims of Drs. Michael Neary, Paschal Carmody and Michael Shine. All three of these doctors have been removed from the medical register for serial professional misconduct of different types.

We supported 200 symphysiotomy patients and are very pleased with the response by our clients to the payment scheme. We currently support people who had the DePuy hip implants and faulty breast implants. There were others also, and it must be said that Patient Focus was building on the work of other groups at that time, for example, Positive Action and Parents for Justice. We also worked with the members of what were to become Dignity 4 Patients and the Irish Patients Association. I should have mentioned the staff of Children in Hospital Ireland. They provided invaluable emotional support and support in many other ways.

Let me outline the main area in which Patient Focus works. In addition to the above, Patient Focus supports approximately 450 patients and their families in obtaining answers to their concerns and complaints each year. This constitutes the vast bulk of our work and it is ongoing. Patients without group support are particularly vulnerable because they are on their own. Sometimes even their own families are unable to assist them. This is where advocacy is most important. The concerns of the group of 450 people arise in all areas of health care, including general practice; public, voluntary and private hospitals; nursing homes and the older people sector; obstetrics and gynaecology; disability; nursing; the ambulance service; and children's services.

Historically in Patient Focus, if one can speak historically about such a young organisation, its role in regard to psychiatric patients was to assist them with concerns over their care in the physical health area. However, in 2014 we received an increasing number of requests relating to the mental health service per se. We help where possible, usually in relation to complaints, but our expertise in this is limited. In the past we did work with the Irish Advocacy Network, which we found very helpful and empathic. However, it does not seem to be funded currently. That is probably the reason for the huge increase.

With regard to the future of patient advocacy, Patient Focus welcomes the HIQA recommendation concerning a national advocacy service. We have been doing this work for almost 20 years with few resources but with some considerable success, of which we are very proud. We have the necessary skills to develop such a service and ask for the committee's active support to achieve this in the short term.