Oireachtas Joint and Select Committees
Thursday, 22 November 2012
Joint Oireachtas Committee on Health and Children
World Prematurity Day 2012: Discussion with Irish Premature Babies Organisation
I welcome everyone. Our meeting this morning will be divided into two parts. The first part will be a discussion to coincide with World Prematurity Day. I welcome members of the Irish Premature Babies organisation, in particular Ms Mandy Daly, Dr. John Murphy and Ms Hilda Wall. Members will be aware that last Saturday marked international World Prematurity Day. Almost 5,000 babies are born premature in Ireland every year, equating to one premature baby born every two hours. Premature births are defined as those of less than 37 weeks' gestation, and the most vulnerable of these children in terms of survival are those born at less than 28 weeks' gestation or more than three months early. As someone who was born ten weeks premature and who weighed in at 2 lbs 11 oz, I am glad to say I survived and I am here. I welcome our guests this morning.
Witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if you are directed by the committee to cease giving evidence in respect of a particular matter and continue to so do, you are entitled thereafter only to a qualified privilege in respect of your evidence. You are directed that only evidence connected with the subject matter of these proceedings is to be given and you are asked to respect the parliamentary practice to the effect that, where possible, you should not criticise or make charges against a person or persons by name or in such a way as to make him, her or it identifiable. Members are reminded of the long-standing parliamentary practice or ruling of the Chair to the effect that they should not comment on, criticise or make charges against a person outside the House or an official either by name or in such a way as to make him or her identifiable.
I pay tribute to Ms Mandy Daly for the outstanding work she has done in promulgation and advocacy and I compliment her on it. By coincidence, Dr. Murphy and Ms Daly are both from Cork which gives them an extra benefit at this morning's meeting. I call on Dr. Murphy to begin.
Dr. John Murphy:
I thank the committee for the opportunity to speak this morning. This is a fact-finding mission to inform the committee about a group of patients that one may not come across in one's everyday work, although at the far side of Merrion Square there is a large unit in the National Maternity Hospital. Newborn babies are defined as those in the first month of life. Believe it or not, often this is when the greatest problems occur for small babies. It is a difficult hurdle for children to get through the first month.
As the Chairman noted, we marked World Prematurity Day on 22 November. The idea of World Prematurity Day is to highlight the issue of prematurity for the stakeholders, including doctors, nurses, paramedics and health care professionals who look after these babies. However, it is also a matter for the public because most members of the public have been touched either directly or indirectly by prematurity, whether in the case of a brother, a sister, a father or a grandchild who was born prematurely. I will discuss the issues that affect a large number of babies.
One year ago I was appointed as the national clinical lead in neonatology. Clinical lead programmes are a collaboration between the HSE and the Royal College of Physicians of Ireland. The purpose of a clinical lead is to set standards and then to implement strategies to allow these standards to be brought into being throughout the country. On my left is Ms Hilda Wall, a nursing manager in the hospital in Holles Street and a clinical lead for neonatal nursing. Ms Wall will discuss some aspects of neonatal nursing later on, including the complexity of the speciality. On my right is Ms Mandy Daly, who represents the Irish Premature Babies association and who is doing a great deal of work to help families who have had pre-term babies and to highlight the issues for pre-term infants.
The first slide on prematurity will give the committee a flavour of the speciality. Our speciality is different from others in that it is rather visual with small babies and the things that are done. One can see in the top panel the remarkable amount of intensive care provided to these babies, who are either pre-term or term babies who are very sick. The lower panel shows the more human side. There is a picture of a mother who is giving a baby skin-to-skin kangaroo care, which is an effective way of interacting with the infant and keeping him or her warm. There is also a picture of a baby with a mother and father. That is probably the smallest baby I have ever brought out of hospital, born at 23 weeks' gestation. There is also a picture of pre-term twins and slightly older children. There is a complexity to the intensive care involved but these children emerge as normal children.
The next picture shows a map of Ireland. I decided to use it as a challenge for the committee. There are approximately 75,000 births annually in the country. There are 4,800 premature babies born, a total of 19 neonatal units used to look after these babies and 300 neonatal cots. These are the figures for the country. In the North of Ireland there are approximately 25,000 births and, therefore, on the island of Ireland there are approximately 100,000 births. This is equivalent to the number of births in Sweden, which has a population of 9 million. Therefore, clearly we have a large number of children born, thankfully so, because they will grow up and be part of a young population in the country.
The Chairman referred to the definition of prematurity as being less than 37 weeks' gestation as well as the associated issues. A term baby is one of 40 weeks' gestation.
The more pre-term the baby, the more troublesome the case. Members will note from slide 5 that the incidence of prematurity in Ireland is 7%. The percentage in other countries is much higher. For example, in the United States it is 12%, which is a big problem. During World Prematurity Day, an international speaker pointed to the real problem in the United States in terms of prematurity. We are fortunate in that the percentage in Ireland is a little lower, although overall it is rising. Members will see from the slide that some babies, although pre-term, are relatively big in size and others are relatively small and vulnerable. As such, the care required varies.
Slide No. 6 deals with one of the most important issues we would like to discuss this morning. Not all units in the country are the same size. As shown on the slide, there have been more than 8,000 births in four particular units, which is a large number of births by international standards, a smaller number in four others and 2,000 births between the remainder of the units. This is important in the context of the delivery of care. Level 1 care involves basic care of babies, including resuscitation on a needs basis. Level 2 care, which takes place in more regional centres, involves the provision of supportive or intensive care. Level 3 is intensive care for infants. It is important to be able to interact these three levels, using them quickly and effectively. This is where the term "network" comes in. In this regard it means professional connectivity. We have been working on how to make connectivity happen and on getting all of the units in the country to work together, in terms of the management of premature babies, in a cohesive fashion.
In trying to determine best practise, we visited all the units in the country and met with all the doctors in all the hospitals. We learned about what is being done on a daily basis and of the main problems being experienced. It is important all these hospitals, in terms of the provision of care of infants, work effectively and cohesively. I will comment further on that issue later.
Slide 8 shows how successful the speciality has been. The reduction in mortality rates has been divided according to birth weight panels. In some cases, there has been a drop in mortality of up to 28% or 36% over ten years. It would be a challenge to any group in society to achieve a reduction in mortality of patients of 30% over ten years. It has been a great success. Members will note that the diagram contains information in regard to babies weighing 500 and 750 grammes, which is 1lb to 1.25lbs in weight. These babies are the new challenge for us. These are very much wanted babies of mothers who have undergone IVF treatment and have difficulties around getting pregnant. The challenge over the next five to ten years will be trying to get a better outcome for this group of infants.
Slide 9 relates to the benchmarking report of last year, which was mentioned at the first World Prematurity Day event last year. While many medical services in Ireland have in the past developed in an ad hoc fashion what is needed now is a much more planned approach to neonatal services. The structure of these services needs to planned and implemented. When there is a structured system in place new developments can be applied rapidly. Where there is not a structured system in place and new developments occur they are not quickly implemented countrywide. This is important for the future.
The second last sentence of slide 10 states the philosophy of the lead programme, namely, bringing expertise to the baby or bringing the baby to the experts. In other words, we want these babies to be cared for as locally as possible, by their local doctors with their families as close by as possible. They should only be moved to a bigger centre where necessary and as soon as possible after they have received that care they should be returned to the local hospital. The next slide highlights the importance to neonatal care of a seamless transfer across the system from level 1 to level 3 care and back to the local hospital as soon as possible. We are trying to eradicate post code disadvantage and want every baby in the country to get the service they need in the time they need it.
Slide 12 deals with my final point, which is on one of the most important issues in this area, namely, transport. We are lucky to have a neonatal transport system in Ireland. It operates from 9 a.m. to 5 p.m. However, no service is available after 5 p.m. The service includes a dedicated ambulance and specially trained doctors and nurses, who collect babies from any unit in the country and take them to whatever facility is selected for the treatment they require. This service needs to be developed further. We would like to have a 24/7 service. Babies are regularly born outside of office hours, with some born in the middle of the night and requiring transfer by a dedicated team of staff. During our visit to hospitals around the country the need for a 24/7 service was highlighted. My main priority is to make this happen. A 24/7 transport service would be life saving.
Ms Mandy Daly:
I would like to reiterate what has been said by Dr. Murphy. We are here as a united front today to outline the current situation and to put forward proposals to tackle some of the blockages in the system. With respect to the neonatal ambulance service, money has been ring-fenced for the provision of a 24/7 service. To have it implemented will require a lifting of the moratorium on recruitment. That is one of our key issues today. As a parent organisation we are privileged to work with the medics. Huge strides have been made in the past number of years by the medical community who cater for our children. One of the biggest challenges we faced is the lack of understanding of pre-term birth in the broader community, including among the stakeholders in the field. For every child born, there is a journey for an entire family. As stated by Dr. Murphy, whether we bring the expertise to the children or the children to the expertise, it is vitally important this is done where appropriate and in time so as to prevent life long disabilities which have social impacts on the family and can have a financial burden on the State in general. By adopting the guidelines of Dr. Murphy's working group in relation to the structure of the neonatal system in the country we alleviate the financial and emotional impact on families. We also ensure that each unit has the appropriate skill set to care for the children in their care.
Ms Hilda Wall:
As a manager in the National Maternity Hospital in Holles Street one of my biggest concerns is the availability of space. We want to ensure we provide the best possible care. This requires that babies be managed by skilled personnel, namely, nurses who are delegated to the transport team and dedicated physicians. The bottleneck in the service is returning babies, following care, to their local hospital because often the local hospitals have to get nurses in and arrange for special ambulances, which delays the whole process.
I agree with Ms Daly that transport is a huge financial and emotional burden on parents. A mother who is breast-feeding would be required to travel every day to do so. This involves huge costs in terms of travel, car parking and overnight stays. The logistics behind doing so are huge.
I thank the witnesses for their presentations. I had the pleasure of meeting you all at the launch of the Born too Soon report in Ireland last week. I have one question before I invite Senator Van Turnhout to engage with the witnesses. Am I correct that the funding for the transport service is in place and that what is at issue is staffing of it?
Ms Wall pointed out that it is one thing to get babies to the specialist centre but another challenge to bring them back. Is there not a third leg to the stool in terms of getting them out of the local hospital and back to their own homes? This in itself is a huge challenge, particularly for premature babies with life limiting conditions. Sadly, we face that problem this time every year. Parents with children in ICUs and SCBUs are anxious to bring them home for Christmas but the current funding structure makes it impossible for them to do so. For some children, this will be their only Christmas and the system is falling down if they have to spend it in hospital rather than at home.
The rate of prematurity in Ireland is 7% on average, compared to an average of 5% across Europe.
Why does this differential exist? I presume part of the reason is our genetic mix resulting from being on an island. We have a higher incidence of certain rare diseases for the same reason. What steps are being taken to deal with the prematurity rate?
The statistics on perinatal mortality rates are positive for every category of children except those over 4,500g. Why does the mortality rate increase by one fifth among children in that category? I note the cohort is relatively small but 20% is a significant jump over a ten year period.
The report, Too Little, Too Late?, states that we do not have a national neonatal health policy and criticises the fragmented implementation of policy and the significant disparities across the country. I ask the witnesses to elaborate on this geographical lottery. This brings me to the issue of the transport service. I am trying to understand the precise nature of the obstacles. I see that the service is available on a nine to five basis, seven days per week but logic tells us that babies do not always arrive during office hours. What are the obstacles to a 24 hour service?
I ask for more information on the other supports available to families. I have been working on the issue of pre and post-natal depression, which affects between 10% and 20% of women. They are being told that they have to wait nine months before they can get the appropriate services but this is a critical time for bonding with their children.
I thank the witnesses for their presentations and for the tremendous work they have done over the last few years. Given that the birth rate has increased from 54,000 to 75,000 per annum without a significant increase in staff levels, we have achieved great success in reducing the perinatal mortality rate. I understand smaller units are experiencing problems in regard to availability of junior doctors. Consultants in smaller units may be on a one in two call or one in three call rotation and if they are not assisted by good junior doctors they are put under further pressure. Is anything being done to increase co-operation between smaller and larger units in regard to training programmes for junior doctors? For example, a junior doctor could work for two years in Dublin followed by a year in one of the smaller units. In fairness to the big units in Dublin and Cork, they are very supportive of the smaller units and are on call on a 24-seven basis to provide assistance.
As a mother of three healthy children who were born on time, I do not have the experience of giving birth to a premature baby but I know others who have gone through the experience and how it affects their extended families. It is difficult to manage sick children at home because we have not made the connection between services.
Is there a reason for the global trend of rising rates and is it related to the fact that women are having children later in life? Young women are working later before taking maternity leave and they are coping with more stress in work. Is it just a fact of nature?
In regard to the 300 cots that are available for 4,800 premature births, how are the remaining births managed? The numbers do not add up for me. What can be done in local communities with midwives and nurses to help people whose premature babies have passed away?
Dr. John Murphy:
I am trying to remember all the questions but I may need to be reminded of some. Deputy Naughten asked why the rate is slightly higher among babies weighing more than 4,500g. The numbers are very small but the babies concerned are very big and I suspect it may be related to diabetes.
The obesity epidemic is causing significant problems in terms of diabetes, particularly gestational diabetes, and could well be a factor. For women with a high BMI, labour is more difficult and that may also be a factor. A high BMI is a warning sign and a real concern for obstetricians is women with a high BMI when they become pregnant.
A question was asked about what happens after the baby goes home.
Dr. John Murphy:
Getting the child home is the challenge. "Discharge planning" is a term that is coming more in all aspects of medicine. Up to now it has been the other way around. When a patient is admitted to hospital there is a lot of fuss. Charts are filled and everybody is looking at and examining the patient. Going home is often a much quieter affair and may not receive the same degree of emphasis and attention. The newer concept is that the discharge of the patient is planned almost as soon as the patient arrives in hospital. On the very day the patient arrives, plans are made for what will happen when he or she is going home. Perhaps Ms Wall would like to comment on discharge nurses.
Ms Hilda Wall:
We have one whole-time equivalent in the hospital in Holles Street dealing with this. When we have very premature babies or full-term babies who are ill or babies with a life-limiting condition, we plan their discharge from the day of admission. We walk the parents through the process and through what they can expect and try to link them into the services. We have a very good palliative care team in Dublin to work with them. We also help link them to the Jack & Jill foundation, Sunshine House and the LauraLynn House. We make those connections for them and have meetings with them. Before the babies go home, we have multidisciplinary team meetings so that we link them into the services as well as possible.
That is grand for the children in the Dublin catchment area, but I am talking about children transported from places like Portiuncula and Sligo to Holles Street and about getting those children back to their homes.
Ms Hilda Wall:
The first step is to get them back to their local hospitals and the local hospital will try and link them into the services. Our problem is that if we discharge babies from Dublin, they can be lost in the services. However, if we try to get them back to the local hospitals, they can be linked in with the local services, the local paediatrician, social worker, public health nurse, etc.
The network is pretty much okay in Dublin, but my point is that when children get back to their local hospitals, they are stuck in them for Christmas because the funding is not there to help them get back into their own homes.
Dr. John Murphy:
The Deputy is making a valid point. Some of these babies may be so premature they cannot feed themselves properly and must be tube fed. Obviously a nurse is needed then to go out and help replace the tube. The Deputy mentioned babies with life-limiting conditions, which is where palliative care comes into play. A service is beginning to be developed in this area. A paediatric palliative care consultant has been appointed, mainly for Crumlin, but an effort is being made to roll out a national model of palliative care. We have what we call champions in this area, in other words consultants with a special interest in the area, around the country and the hope is that these will become an integral part of the service and provide the necessary support for families who take home babies with life-limiting conditions. This is being developed as a model of care programme, but it only started in the past year or so.
Dr. John Murphy:
There has not been a national model of care for neonatology and it has been my role to develop that. On foot of visits around the units, I have produced a review report on paediatric and neonatal transport in collaboration with my colleague, Professor Nicholson. That report will be published in approximately two weeks. It is a 200 page report and deals with the units, the services they provide and overall principles of the model of care. The report has gone to the HSE for a final review before publication. It will set out some ideas for a model of care programme for neonatology and how we see the development of services on a more formal basis for the future.
On transport, everybody is agreed transport should be available 24/7 and as far as we are aware, the money has been set aside for that.
Dr. John Murphy:
Mobilisation is very fast and with the good roads it can get to most places in the country within three or four hours. Therefore it has a fast turnaround. The team goes and if the baby is in a serious condition when they arrive, they will continue resuscitation on site with their added expertise and help and then get the baby to a bigger centre as quickly as possible.
Dr. John Murphy:
Outside of that, the local team and doctors working in the hospital will have to arrange to do the transport themselves. Sometimes the consultant may have to leave with the patient, which makes things difficult for the local hospital because that consultant was on call on the rota, but is now travelling in an ambulance to Dublin. This is the reason they are so keen on our programme to be developed.
Dr. John Murphy:
Science has moved on and one of the other big issues that has emerged is that for the first ever we have possible treatment for brain damaged babies or babies who lacked oxygen at birth. This is termed therapeutic cooling. What happens is that the baby is cooled to 32o centigrade for 72 hours. This is a very effective treatment and one in four or five of babies treated in this fashion will be normal. We have had some great results with this treatment in the past two to three years. However, the problem is this treatment must be instituted within six hours of birth. What we get people to do locally is to turn off the heaters and keep the babies cold. Then we collect the babies and keep them cool during transport. This is the opposite of what one might think. It is not a good idea to wrap these babies up when they have suffered asphyxia.
We have had some wonderful success stories in the past two years with therapeutic cooling and one in four or five of babies who would have gone on to have significant cerebral palsy are normal. This treatment can only improve, now we have the first breakthrough in preventing this. Oddly enough, the damage from lack of oxygen to the brain does not happen immediately, but over a period of time and if we get within that window, we have the opportunity to reverse the damage. The committee can, therefore, see why we are so keen to be able to transport patients and teach and train people around the country not to put on the radiant heaters but to keep these babies cool so that we can collect them and transport them cold as quickly as possible.
Dr. John Murphy:
I expect the number of babies we get to access in time and treat will rise. The identification of babies who may suffer from brain damage from lack of oxygen will increase and we will be able to get to more of them and, hopefully, prevent damage occurring. Unfortunately, we cannot prevent damage for every such baby. That will take time, but a certain percentage of them can benefit. The national experience is very encouraging for this. Cooling has been the subject of a large number of trials and is probably the biggest breakthrough we have had in neonatology in the past 25 years.
Dr. John Murphy:
We are doing quite well overall and have good connectivity. We have a great opportunity for a world class neonatal service because Ireland is a small country, we have great roads and good quality hospitals around the country with high standards. However, they need that professional connectivity so that the babies in need can be moved around to the best place. We should have a neonatal service we can be proud of nationally and internationally.
Dr. John Murphy:
I think Senator Burke is right in this regard. Unfortunately, there is a global shortage of doctors. This is happening everywhere. I suppose doctors tend to go to the bigger centres to participate in training programmes. We are trying to implement training programmes for the regional centres so that those involved are trained in all the basic skills before they start their jobs. Ms Wall might like to comment on the availability of advanced neonatal nurse practitioners who can perform as senior house officers.
Ms Hilda Wall:
There are four advanced neonatal nurse practitioners in the country, all of whom are in Dublin. They were slow to come on board because they had to go to England for their training. They commenced training this year in the Royal College of Surgeons in Ireland, in combination with the three Dublin hospitals and the Cork hospital. These practitioners will have the same skills as junior hospital doctors. They will be able to cannulate and intubate babies. They will be able to manage babies who are very ill. This will alleviate much of the pressure in the system. It will also extend the role of nurses, who are obviously keen to be more involved in the care of babies.
Dr. John Murphy:
This approach is along the lines of the American model, which has consultants, senior doctors and highly skilled nurses doing many of the jobs that are done by junior doctors here. When the junior doctors are reduced in numbers, they do more in training posts. The nurses in question are experienced and know all of the practical procedures and skills that are needed. They are taking a significant amount of pressure off the system. I think that is the way forward. It will lead to a better service.
He or she might do a year in each of three different hospitals. The three-year contract gives certainty to junior doctors. They do not have to worry about going for interview a month after starting a new job. I wonder whether we can develop that here as a national policy. Someone who gets a three-year contract could spend two years in Dublin and a year in a regional location. That would give certainty to junior doctors. I wonder if we could try to move that on. We are going nowhere with it. We are losing a huge number of junior doctors. I learned from a survey of medical students who graduated in 2012 that fewer than 35% of them intend to be working in Irish hospitals by the end of their internship years. Part of the problem is the uncertainty with contracts.
Dr. John Murphy:
It is caused by the effect of a lack of oxygen on the brain. It was thought that it was like a road traffic accident in the sense that the injury occurs at the point of the impact, but that no longer appears to be the case. The way the brain works means that the injury that takes place as a result of a lack of oxygen happens over a period of hours, rather than in a single moment. That gives one an opportunity to move in and cool the body down to 32° or 33°, which is approximately 4° lower than normal, thereby allowing the brain to rest and recover. That seems to be the way it works. We cool the body down to 33.5° for 72 hours. It is quite complicated, but the results are very promising.
I appreciate that the Chair might rule this out of order. Given the unique expertise of Dr. Murphy in this area, and the current public debate on the matter, I would be interested to hear his professional view on the Savita case. How does he believe the investigation should be brought forward?
I will return to what Dr. Murphy was saying about the cooling of babies. Is he saying that in the cases of between eight and ten babies a year, the effects of a lack of oxygen at birth, which leads to profound disability for a child over his or her lifetime, can be addressed by putting an ambulance service in place 24 hours a day, seven days a week? If that is the case, and perhaps I am not great on the maths, is it not a no-brainer to suggest that the savings which could be generated from not needing to pour substantial health and medical resources into families, over the lifetimes of the between eight and ten children who would lead normal lives, would immensely outweigh the cost of running an ambulance that is already available? As things stand, it would be a matter of providing out-of-hours staffing for that ambulance. Surely it makes financial and economic sense to proceed along these lines, even if we dismiss the human aspect of the significant quality of life implications for the families, the children and the communities involved.
Dr. John Murphy:
As doctors, we always place an emphasis on reducing the suffering and the handicap for the child and the great burden on the family. That is what drives us in these cases, first and foremost. More indirectly, it is clear that if one can avoid disability, one will bring about substantial cost reductions overall. That is certainly right.
Dr. John Murphy:
Smoking is the issue that needs to be addressed by society because it affects the size of the baby. If the baby is smaller than it should be, it tends to get more distressed and may well deliver prematurely. There is a direct relationship in the case of smoking. Obviously, alcohol is completely not recommended in pregnancy. The number of cases of alcohol-related pregnancy problems that we encounter seems to be quite small. It is not a feature. Young women who are pregnant do not seem to do that. I have not noticed it to any great extent. I am sure Ms Wall agrees.
Dr. John Murphy:
We see some problems that are associated with drug abuse, for example when we encounter girls who are in methadone programmes. Babies who have drug-withdrawal symptoms have to be kept in hospital for a number of weeks. It can take them six or eight weeks to withdraw from the symptoms of their mothers' drug addiction in pregnancy. During that period, the babies often need narcotics until they have recovered.
I thank members for their participation in this section of the meeting. The second section of the meeting will follow immediately. I thank Dr. Murphy, Ms Wall and, in particular, Ms Daly, who was a huge advocate of the establishment of this organisation and who travelled around the country in her advocacy role while publicising the publication of the book. It is important to recognise the work she does on a voluntary basis. I thank her for being here. I also thank Dr. Murphy and Ms Wall. Today's meeting has been a valuable exercise. As a result of this discussion, the committee will follow up the transportation issue with the Department of Health and the HSE. I remind members that the delegation from Dáil na nÓg that will address the committee shortly has prepared assiduously for this meeting. If members could wait for the delegation to arrive, it would be appreciated.