1 Joint Committee on Health and Children Opening Statement Ms. Sheila O Connor - Patient Focus We would like to begin by thanking Chairman, Deputy Jerry Buttimer and other members of the Joint Oireachtas Committee on Health and Children for your invitation to speak to you on the occasion of the publication of the HIQA Report into Portlaoise Hospital. I would also like to thank the Clerk of the Committee and his staff. Their help was invaluable in putting together this presentation at such short notice. I would like to begin by telling you about Patient Focus and patient advocacy. Most important I will explain a little about our involvement in the Portlaoise scandal. I would also like to tell you 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 patients 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 4 staff and are funded by the 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. This is not widely known or understood. We listen to patients stories which sadly are often chaotic. In this way we help them make sense of it. Their journey with us can be as short or as long as they require. Advocacy can mean something as exceptional as arranging last week s meeting of affected families in Portlaoise. More usually it means providing assistance with obtaining records, attending meetings with appropriate professionals to discover what happened, explaining processes, accompanying patients to investigations and reviews. This involves familiarity with and access to people within the health care system. It involves working with outside professionals such as counsellors, doctors, coroners, lawyers etc. depending on the seriousness of the issue. We sit on various reviews at local and national level for the HSE, Irish Nurses and Midwifery Board and HIQ. We give regular briefings to the HSE as to the issues arising. We have constructive relationships with decision-makers in the political and health care areas. In this we are unique nationally and internationally as an advocacy service. Our ethos is patient and person centred. We understand that it is very important to listen, to go at the patients pace and to be led by them at all times in relation to 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.
2 Staff members of Patient Focus have been involved in patient advocacy since In a short space of time the extent of the damage suffered by some patients became very clear to us. Sometimes this damage and hurt was lifelong. As we began to listen to many sad and disturbing stories, we resolved that the health care system itself needed to listen and take notice of damaged patients and their relatives who were finding their voice at last. They were no longer willing to be written out of the history of the practice of medicine. Damaged patients felt they were placed in corners and forgotten about, treated as an embarrassment by the very people and institutions supposedly tasked with their care. In the late nineties it became clear to us that patients issues fell into a number of categories. In the main these categories have not changed. They also related to all areas of the health service including public and private institutions. Patient Focus involvement with Portlaoise Maternity Unit Our staff of 4 provided support to approx. 200 families affected by revelations about maternity care nationally but most particularly in Midlands Hospital, Portlaoise. We met Mark and Roisin 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 HSE, the Department of Health, HIQA and the general public what appeared to be unnecessary deaths of 4 healthy, full term infants in Portlaoise Hospital. They were babies 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 what happened to them when they started asking questions. Stories of damaged babies and injured mothers in Portlaoise as well as concerns about safety in other units came flooding in to Patient Focus after the RTE Prime Time programmes. Within days we had approx. 180 contacts from worried people and 80 were from the Portlaoise unit. Other concerns came from several units throughout the country including Mullingar, Cavan, Portiuncula, Tralee, Letterkenny, Wexford and Sligo. There were serious complaints too about care at the 3 major Dublin maternity hospitals. No hospital escaped. Heart-breaking stories emerged. Some were from the 70 s, 80 s and 90 s, some more recent and others as recent as the previous weeks. All were visceral in the grief expressed at the loss or damage to babies. Within days the Departmentt of Health set up a scoping review of the hospital and concluded that the unit in Portlaoise was unsafe. This caused huge challenges both personal and financial for PF and its staff. Commitments made at the time in terms of increased funding to cover the cost of increased travel etc. have not as yet been honoured. A number of reviews have been established including a HIQA investigation and an internal HSE review into some 200 cases. In some cases individual clinical reviews were established. The results of most of these reviews, with the exception of the HIQA investigation, are awaited. We believe these delays are unacceptable. The families here will tell you about the effects of such delays and the energy necessary to obtain a review in
3 the first instance. In Patient Focus we believe when an adverse event occurs an external review of care should be offered immediately by a relevant expert/s. Matters should be explained openly and sympathetically to the people concerned within a month of the occurrence. In the interest of patient safety and learning the HSE can continue to conduct its own reviews. How Did Patient Focus Develop and What are our Achievements? Many changes have occurred since we began our work and much of it achieved by our clients. Though many more are still required. Prior to the Freedom of Information legislation in 1997 Irish patients had no legal right of access to their own medical notes. Indeed such was the lack of interest in this legislation within the public health system that, even as late as mid 2000's, it was very difficult for any but the most persistent patient to obtain a copy of their records in many hospitals. Today there is still no legal right to medical notes from private institutions or private medical practitioners outside the public and voluntary system. In the late nineties 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 nineties members of Patient Focus spoke with staff in the system about the establishment of a Patients Complaint Office. They told us of proposals to establish Patients Liaison Offices but the word complaint could not be used because of strong negative feedback from some staff. Some believed patients do not have complaints or worried it would just encourage complaints from cranks or disgruntled patients. Indeed a medical member of Patient Focus who advocated support for damaged patients was described by some colleagues as a turkey voting for Christmas. At this time, the regulation of doctors was effectively in secret, 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 practice inquiry and result in the removal of a doctor from the medical register. However the Medical Practitioners Act of 2007 changed 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. Notable among these patients are a number of groups who came together with Patient Focus to claim their pain and hurt as real and to make sure the system heard. These are the victims of Drs Michael Neary, Pascal Carmody and Michael Shine. All three of these doctors were removed from the medical register for serial professional misconduct. 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.
4 There were others also and it must be said that Patient Focus was building on the work of other groups at that time eg 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. The Main area in which Patient Focus works day to day. In addition to the above Patient Focus supports approx 450 patients and their families to obtain answers to their concerns and complaints each year. In fact this constitutes the bulk of our work and is ongoing. Patients without group support patients are particularly vulnerable because they are on their own. Sometimes even their own families are unable to assist them. This is where advocacy is vital. The concerns arise in the following areas. General Practice Hospital sector public, voluntary and private Nursing home and Older Peoples sector Obstetrics and Gynaecology Disability Nursing Ambulance service Mental Health Our role in relation to psychiatric patients historically is to assist them when they have concerns in relation to their care in the general health care area. However in 2014 we have received an increasing number of requests relating to mental health service. We help where possible, usually in relation to complaints, but our expertise in this is limited. The accompanying document Problems Patients Experience describes the main areas of concern for patients. The Future of Patient Advocacy Patient Focus warmly welcomes the HIQA recommendation concerning a national advocacy service. We have been doing this work for almost 20 years with little resources but considerable success. 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.
5 Briefing Note on Problems Patients Experience These issues haven't changed since the early days and include the following: Inability to obtain files from an institution or practitioner. This issue has in the main changed in emphasis since the mid 90s. Nowadays Patient Focus assists patients to use the process of Administrative access to files or where necessary to use Freedom of Information legislation. Public hospitals in the main have become used to these processes and facilitate patients as a general rule. Difficulties still arise where it is some time since the incident and files cannot be located or when it related to a patient who has died. Furthermore some patients are still unaware of their legal rights in this regard and feel afraid or intimidated to ask for notes. Furthermore there is no such right in private hospitals. This is an anomaly that needs to be resolved. Practitioners too on occasions are very hostile when a patient asks for their files. It ends the relationship on some occasions and results in the patient being sacked by their doctor. This can have serious implications for the patient. A further issue arises here. Missing files are the best form of defence to a medical negligence charge. Patient Focus believes that when files or crucial parts thereof are missing that the onus of proof should change from the plaintiff to the defence. We believe it is no coincidence that crucial documents are often missing from files. Copies of files should, as a matter of form, be given to patients. This would help in this matter. Not giving patients automatic access to their notes is a throwback to a more paternalistic era not so long ago either, when it was not considered unsuitable for patients to have access to notes. In addition notes can be altered. Insufficient sanctions are used against practitioners who alter notes in an inappropriate way. Inappropriate Attitudes This is frequently raised by patients and their relatives. In the main it relates to a paternalistic attitude by practitioners, whether doctor or nurse, to the patient or their relatives. It is often experienced by patients or relatives in conjunction with another issue ie unwillingness by a practitioner to explain when things go wrong, or to accept a request for a second medical opinion. It can also involve the lack of provision for a chaperone for patients in areas where it is advised by the medical council. This can be very distressing for patients who are reluctant to raise the matter because of fears that it would be misunderstood. Also a failure to accept that mistakes can occur and a patient is right to raise the issue if they are concerned about their care. Objections from professional or the fear of it, when a patient or relative asks about hand washing is also an issue for patients. An inappropriately high opinion by a professional of themselves or their institution sometimes is an issue here. Lack of Communication
6 This can be a very serious issue and sometimes has catastrophic consequences for patients as was demonstrated in the very sad and wildly reported case of the removal, in error, of a child s healthy kidney. It also relates closely to consent to medical treatment. Without clear communication between patient and practitioner medical treatment can be experienced by the patient as assault. In Patient Focus we have supported and continue to support clients in cases where the fears or gut instinct of patient and/or relatives were not listened to with tragic results. Delayed diagnoses / Misdiagnoses This is particularly tragic in the case of cancer patients. It was more common in the early days where it sometimes led to earlier deaths of patients. At present the issues relate more to inaccurate causes of death on certificates. But most importantly of all it results in very late referrals to palliative care with all the attendant pain and sadness that causes for patients and families. Health care acquired infections A significant decrease has occurred in the number of patients/relatives contacting us in relation to hospital acquired infections and hygiene issues in the last number of years. It is unclear whether this is because of improvements in these aspects of care or because of the decrease in media attention with hygiene and infection rates possibly due to the inability of HIQA to conduct independent inspections in recent times. Abuse physical, emotional, sexual. Since the earliest days it is clear to us that patients of all ages and both sexes are very vulnerable to abuse of all kinds, including sexual abuse. It is a great worry that, in a small number of cases of complaints of sexual abuse, concerns cannot be properly inquired into either by the institution or regulatory body because of the patient s belief that it is simply their word against the professional s or they will not be believed. This belief causes some patients to go no further that talking to Patient Focus about their experience despite our efforts to support them through an investigation process. This can also put other patients at risk particularly where the professional works exclusively in private practice. Statute of Limitations In a number of cases damaged patients or their relatives take legal action to remedy the wrong they have experienced. Legal action must be taken within 2 years in most cases. This is very difficult for ill patients who are recovering from the consequences of the error to deal at such an early stage with so serious a matter. They may be too ill or simply afraid to seek advice for a significant period. The short time limit can also precipitate ill people or their families into too early a decision to sue. In our experience the two years has often passed when patients are physically and emotionally able to consider the issue of obtaining legal advice.
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