World Prematurity Day 2013 and Neonatal Care
The next item of business is a members’ business debate on motion S4M-08110, in the name of Rhoda Grant, on world prematurity day 2013 and world-class neonatal care in Scotland. The debate will be concluded without any question being put.
Motion debated,
That the Parliament celebrates World Prematurity Day on 17 November 2013 and understands that 8,000 babies are born sick or premature each year in Scotland; welcomes Neonatal Care in Scotland: A Quality Framework, which creates new standards for neonatal care that aim to help ensure improvements to the care of premature and sick babies, ensuring that they receive the world-class treatment that they and their families deserve; commends Bliss Scotland and the health professionals involved in drawing up the new standards, which include increasing the number of staff in units, involving parents in the care of their baby and offering proper support and facilities to families, and looks forward to the implementation of these standards.
12:33
I am pleased to open the debate to mark world prematurity day, which fell on 17 November.
I vividly remember visiting my great-nephew just over a year ago in a special care baby unit. He was only a few days old and just out of an incubator. My niece told me that we could see him but we were not allowed to lift or cuddle him. When we were peering into his cot, a nurse told us that we could pick him up and hold him. That was a special moment. Needless to say, he is now doing well and getting up to mischief, and those days seem far away.
Other babies are not as lucky. In the United Kingdom, one in 300 babies dies within four weeks of birth. In Scotland, one in seven babies are admitted to neonatal care every year because of early birth, being small or being too sick. Therefore the quality framework for neonatal care is welcome, and I pay tribute to the work of the professionals and parents who have been involved in drawing it up, as well as to Bliss Scotland and Sands—the Stillbirth and Neonatal Death Society.
Bliss Scotland drew our attention to the problems that are faced in neonatal care in its “A chance for change Bliss Baby Report and Manifesto: Scotland 2011”. It tells us that there is a significant shortage of nurses for sick babies in at least three level 3 units, and four neonatal units reported having problems with recruiting doctors and consultants. There is a lack of counselling services for parents who need emotional support and a lack of accommodation for them when their babies are in facilities that are away from their homes.
The British Association of Perinatal Medicine has outlined staffing guidelines. There should be a nurse ratio of 1:1 for babies who need neonatal intensive care, and the nurse should have a post-registration certificate in neonatal intensive care. The BAPM also recommends a nurse ratio of 1:2 for babies who require high-dependency care and that the nurse should have had training in neonatal care, and that there should be a nurse ratio of 1:4 for babies who require special care.
Three out of the eight neonatal units that responded to Bliss Scotland gave information on nursing levels and occupancy rates that did not meet those standards, and units are not meeting the minimum standards for nurse training. The Royal College of Nursing standards say that 70 per cent of nurses who work in neonatal intensive care units should have a qualification in specialised neonatal care, but half of the level 3 units that responded to Bliss Scotland did not meet that standard. They reported that it is difficult to release nurses for training.
Neonatal units are also having problems with recruiting consultant-level doctors. One nurse said that posts cannot be filled because of a lack of applicants and funding. Because of that, neonatal units have to close their doors to babies who need that specialist care.
In June 2010, fewer than half of the units provided parents with access to counselling. Counselling is crucial because parents who have gone through the trauma of having a child in neonatal care are at higher risk of developing depression or anxiety. We can all imagine the stress that is caused by a seriously ill loved one, but the illness of a tiny baby causes untold stress, so counselling and support are crucial for those parents.
Bliss Scotland also found out that there is a need for 38 more overnight rooms to accommodate parents. Babies and families have to travel far from home to access care because there are only 16 neonatal care units in Scotland. That has emotional and financial implications for the families who need to be close to their child. Access to overnight rooms that allow parents to be close to the unit is crucial for them and their baby.
We also need to make sure that adequate specialist transport is available. My region covers the majority of Scottish islands, and listening to parents whose child has been airlifted to a neonatal care unit while they have been left behind on an island is heart-rending. It is difficult enough to be separated but somehow having sea between the parents and the baby makes it worse. Fathers also often have to face making an awful decision about where they should be if their baby’s mother is also seriously ill. Those parents need practical and emotional support. It is right that specialist staff who care for babies in transit are given priority on flights and in ambulances, but we need to find ways of allowing parents to travel if they are fit and able to do so.
We also need to make sure that there are sufficient allied health professionals to support families and children. Physiotherapy, nutritional support and indeed speech therapy might be needed to help young babies with swallowing, as that is often an issue for babies who need intensive care. We also need palliative care support for parents; that is one of the most difficult areas and it is essential that parents are supported through it.
The quality framework deals with many of those important issues, but it requires to be implemented quickly. World prematurity day takes place every November. It allows us to focus on issues, gives us the opportunity to gauge the improvements that have been made during the year, and allows us to renew our efforts to ensure that we offer a world-class service to premature babies and their families.
12:39
I congratulate Rhoda Grant on bringing this important debate to the chamber. It has a personal note for me, as many of the children in my family spent time in neonatal care because of premature birth.
In March this year, I attended the launch by the Friends of the Special Nursery at Aberdeen neonatal unit of the miracles and memories scrapbooks project, which aims to bring together pictures and stories from people and families who have experienced the care and support of the Aberdeen special nursery.
One of the mothers, Julia Ann Roberts, commented to me that the neonatal care has led to a community spirit among the parents who have experienced prematurity and the care of the neonatal unit. Many of them are now dedicated fundraisers who work extremely hard to raise money to support the work of the special nursery.
One of my constituents, Donna Scott, petitioned the Parliament on the subject of donor breast milk and the establishment of a donor milk bank to cover all of Scotland. I am delighted that she was successful in achieving that aim with the support of the Scottish Government and the national health service. We now have a system in which, regardless of geography, premature babies can access donor breast milk, which as we know is vital for many premature babies.
Donna Scott and other parents who have been in contact with me have made a point about the number of beds that are available in units, particularly in Aberdeen. One point that has been brought to me frequently is about the number of mothers who have to be relocated to Ninewells in Dundee. They could not fault the care that they received there but, as Rhoda Grant highlighted, the geographical displacement causes obvious difficulties, particularly for the wider family, who want to visit and support the mother and child during what is a difficult time.
Another interesting point is about parental leave, although I realise that that is not devolved to the Parliament. Many fathers have only two weeks of statutory leave, but if a child is in a neonatal unit for a number of weeks, that leave can often be eaten up during time when the child is not at home. The mother’s maternity leave is also eaten into by the time that the child spends in the neonatal unit.
One of my constituents, Wendy Eastell, told me that, when her daughter was born prematurely at 27 weeks, she had 24 weeks of maternity leave. One week of that was spent in labour and 11 weeks were spent while her daughter was in the neonatal unit, which meant that she had only 12 weeks at home with her daughter before she had to return to work. At that point, her daughter was only term plus 11 weeks and weighed only five pounds. There can also be difficulties for mothers with breastfeeding and attachment if they do not have that vital time with their baby because it is spent largely in the neonatal unit.
Presiding Officer, I have a couple of other constituent examples that I would like to raise, so I ask you to be a little flexible with my time so that I can at least put them on the record. A number of people have contacted me. I will not be able to raise all their points, but I have told them that I will send their comments to the minister after the debate.
One example is my constituent Alison Martin, whose daughter Sawyer was born six weeks prematurely. Alison said that the staff at the neonatal unit in Aberdeen allowed her to be as hands-on as possible with the care of her daughter and that she cannot fault the care that the unit provided.
One of the more harrowing cases that I have come across is that of my constituent Dani Rose Mackay, who was pregnant with twins and was taken in at 21 weeks with pre-term premature rupture of membranes, or PPROM. One of her twins had no water, but one did. A week later, the other twin had no water either. Both babies had heartbeats right up to labour at 25 weeks, but one of them, Lucy, had stopped growing. Her cord flow was bad and she did not cope with the labour, and her heartbeat stopped during it.
Dani had been moved to Dundee at 24 weeks because Aberdeen had no room—a point that I raised earlier—but labour was stalled with steroids, magnesium and a contraction-stopping drug. At 25 weeks, she was found to be fully dilated, with her daughter Amie’s foot visible, and was induced. That failed, and 17 hours later Amie was born after surgery, although not a section. However, Dani’s cervix closed, so Lucy was induced and was stillborn, with waters intact, another seven hours later. Her waters had not ruptured, but had diminished due to placental issues.
Dani felt that there was a disparity between the service that she was offered in Aberdeen and that in Dundee. Obviously, that predates the guidance that has been implemented, so I hope that it will perhaps change some of that. She said that she would love to see discharge packs being given to mothers when they leave the neonatal unit and more appointments being offered, which would enable mothers to chart the progress of their children. Perhaps having a dedicated outpatient department as the first port of call for mothers who have spent time in the neonatal unit could be looked at.
I hope that I have been able to put some thoughts in the minister’s head. I thank Rhoda Grant for bringing the debate to the chamber.
12:45
I thank Rhoda Grant for lodging the motion, which reminds us that 8,000 babies are born prematurely in Scotland each year. That is 8,000 families, all of whom have the right to the highest possible quality of care, and 8,000 reasons why we should all join Rhoda Grant today in welcoming the new quality framework for neonatal care and commend our healthcare professionals, in partnership with Bliss Scotland, for producing it.
When put in place, the framework will offer new guidance to the NHS and offer support in the delivery of safe and effective person-centred care.
In this field of study, the impact of premature birth on adult development is at present still relatively unknown. The Bliss campaign, however, has engaged with the EPICure study at University College London over the past 18 years and has contributed to a longitudinal study of the effects of premature birth. The next phase in that study was announced on Sunday 17 November.
The purpose of the study is to ensure that the interventions made at an early stage are based on well-informed evidence. With so much riding on the success of the framework, it is vital that we establish a better picture of which interventions are most effective. That can be determined only by looking at the long-term development of premature babies as they grow into adulthood.
In its response to NHS Scotland’s 2007 publication, “Better Health, Better Care: A Discussion Document”, Bliss outlined the importance of getting it right for premature babies and their parents. At the time of the consultation, the main issue that was identified to be working against the shift towards better-quality neonatal care was a shortage of nurses to deliver the specialist support. As Bliss stated at the time,
“While the care that neonatal nurses, doctors and other health professionals provide for sick and premature babies is excellent, the service is compromised by nursing shortages. While demand for neonatal services is increasing, the numbers of neonatal nurses employed is remaining almost static.”
That was in 2007. It is therefore encouraging to see that the new quality framework aims to improve safety through ensuring that duty rotas always have the appropriate level of staff on hand to meet the neonatal unit’s needs, with a high baby to nurse ratio.
Rhoda Grant quoted the British Association of Perinatal Medicine recommendations on that, which are: one nurse to one baby in neonatal intensive care; one nurse to two babies in neonatal high dependency care; and one nurse to four babies in neonatal special care. Until recently that was not the case in Scottish units, so Bliss was right in its contribution to the development of the framework to make the case for a greater number of nurses. Perhaps the minister will update us on that in his wind-up speech.
All parents going through the pregnancy and birth process hope for a positive experience and the chance to bond with their newborn baby. Wherever possible, that should not be compromised by the baby being premature.
Anyone who has experienced the birth of a baby as a mother or father will know what a moving and indescribably special time it is. Quality neonatal care does not simply mean creating a safe clinical environment; it also means providing a nurturing and understanding place for parents and their new babies at that crucial point. “Neonatal Care in Scotland: A Quality Framework” seems to recognise the importance of that point. I have no doubt that Bliss was in part responsible for the immense progress made in changing the quality of care accordingly.
It is great to see that steps are being taken to provide better person-centred care and a chance for parents to have greater involvement in the decision-making process. That includes clinicians collaborating with parents in the production of a care plan, including time spent with the baby as and when it suits the parents.
Today we recognise the incredible work done by healthcare practitioners, campaigners and parents themselves, who in times of great difficulty can show such fortitude when given the right support. We also acknowledge, as I have done several times in my contribution, the vital role played by Bliss.
I commend Rhoda Grant for bringing forward the motion and give it my full support.
12:49
I, too, commend Rhoda Grant for securing this debate on the very important—but not widely discussed—topic of premature birth and care of babies who are born too early, too sick or too small.
Rhoda Grant, the minister, other members and I have been active in the chamber this week on a variety of health-related issues. On Tuesday, we discussed a bill at stage 1 that will set the scene to enable integration of adult health and social care across Scotland. It is aimed at improving the wellbeing of many people who are at the upper end of the age spectrum.
Today, we are discussing the other extreme of life. There are many fewer patients at that extreme, but first-class care can set tiny babies on the path to a normal, healthy childhood and the lifestyle and lifespan to which most of us aspire.
My first encounter with prematurity was when a colleague anaesthetist with a special interest in neonatal and paediatric care became the father of a baby who weighed about 1.5 pounds. I remember seeing that tiny scrap of humanity in an incubator and wondering how on earth she could possibly survive. Mercifully, she became one of the tiniest babies to make it in those days, and I am delighted to say that she grew into and through childhood and is now a very successful and healthy adult. She must be in her mid-40s by now.
My memories of that tiny baby were rekindled yesterday when I received an email from a North East Scotland constituent, who asked me to take part in this debate. He told me of his experience, which he is happy for me to share with members. I will quote from his email, because it highlights the importance of what the debate seeks to achieve. He said:
“In September 2007 my daughter was born 3 months early and weighed 1lb, which is the same as a baby of 22 weeks gestation. My wife and I were fortunate to stay in a city which has an excellent neonatal care unit. Without this, the care and attention provided by the doctors and nurses there, and the support provided by BLISS, ... there is a very real chance that my daughter would not have survived. Happily she did, and in August this year she commenced primary school with the rest of her friends. Please continue to support neonatal care, as the service provided saves lives each and every day.”
That uplifting story is about just one of the 8,000 babies who are admitted to neonatal care every year in Scotland either because they are born prematurely or because they are seriously ill. However, not everyone in Scotland has such a good experience as my constituent had. A report by Bliss Scotland in 2011 revealed a significant shortage of neonatal nurses in special high-dependency or intensive care units, and the need in 2009 to close more than half of Scotland’s neonatal units to new admissions at some point during the year.
The report also revealed a lack of support for parents, including a shortage of overnight accommodation for parents who have to travel far from home to receive appropriate care for their babies. Having had the experience of staying for five weeks with a son who had to go to Birmingham for transplant surgery, I know how important it is to have accommodation close to the hospital, with other people around who are undergoing and understand the fears and strong emotions that close relatives experience at such stressful times.
I therefore commend the activity of Bliss Scotland, which works hard to get the best possible care and support for all premature and sick babies and their families, and I welcome its contribution to the new standards for neonatal care in “Neonatal Care in Scotland: A Quality Framework”, which was published in March this year. Those standards deal with areas such as the nurse-to-baby ratio and the appropriate training levels that are needed to deliver safe, effective and patient-centred care; the co-ordination of care between units; and the facilities and support that should be available for all families. If they are properly implemented, they should result in the gold standard for neonatal care that has been agreed by the British Association of Perinatal Medicine.
It is important that Scotland’s health boards now set out detailed plans for implementation of the new standards within a 10-year timeframe. I hope that the minister will assure us that the Scottish Government will hold health boards to account via regular reviews and open discussion on their progress towards ensuring that all babies who are born prematurely or sick get the best possible care. I look forward to his response at the end of the debate.
12:53
I thank Rhoda Grant for bringing this important debate to the chamber to mark world prematurity day.
As we have heard from Malcolm Chisholm, in Scotland 8,000 babies a year are born too soon, too small or too sick. The care that premature babies receive during their first few minutes, hours, days, weeks or months impacts on the rest of their lives. For mums, dads and grandparents, that time can be one of the hardest and most anxious times that they will go through.
I speak from experience: my youngest son, Luca, was born at 33 weeks and weighed just 3.5 pounds. Like many mums, I had absolutely no warning that he would be premature. On the day he was born, we had driven back from holiday, arrived home at about 6.30 and sat down for tea. All of a sudden, I felt a pain that I knew was not a good sign. We rushed straight to the hospital in Kirkcaldy in time for Luca to be born just after eight o’clock. We saw him very briefly before he was whisked away. I was left in shock, holding a photograph of my new baby that the midwife had given me. That was me until the next morning, when I was able to visit Luca for the very first time in the neonatal high-dependency unit.
That was the start of a very long and stressful three weeks. All I wanted to do was hold my new baby and take him home, but there he was in an incubator, all wired up and being fed through tubes. Doctors and nurses were now his primary carers; as parents, we felt that we were watching from the sidelines. The care that Luca received from all the staff at Forth Park hospital in Kirkcaldy during that time was first class, but there is no doubt that, as a family, it was one of the most scary and stressful periods of our lives.
Thanks to our fantastic national health service in Scotland, Luca is now an extremely healthy and vibrant three-year-old. However, I never forget how lucky we are that he was born here in Scotland, because around the world every year 15 million babies are born too soon and 1 million of those babies die: premature birth kills one baby every 30 seconds somewhere in the world. That is a shocking statistic that is all the more shocking because 75 per cent of those deaths could be easily prevented by keeping babies clean, warm and close to their mum and by breastfeeding—proven low-cost interventions that can and do save little lives.
I am really pleased that here in Scotland we now have a comprehensive set of new standards for care of premature babies. It is vital now that we work to ensure that they are fully implemented. Central to that must be parental involvement and engagement. Parents whose babies are in special care are faced with multiple worries—not only about the immediate health of their baby, but about whether their baby will face long-term health problems. They also have worries about leaving their baby behind in hospital, about how they are going to manage looking after their other children, about how they can afford the petrol for the constant trips back and forward to hospital, about how their partner will manage to get time off work after their two-week paternity leave is over and, for some, about whether their little one will ever make it home.
Families deserve better support in neonatal units than they have at present. As other members have said, lack of accommodation means that it is very difficult for parents to spend time bonding with their baby in the early days. Lack of crèche facilities in hospitals means that it is very difficult for parents who have other young children to manage. We know how important breastfeeding is, but breastfeeding can be extremely difficult for parents of premature babies when they are kept apart from their baby and have to travel back and forward to their home from a hospital that might be quite far away.
When my son was in special care, I remember being shown a corner of the ward where mothers could express milk behind a curtain. However, there was hardly any privacy, so it did not surprise me that that facility was rarely used. If neonatal services are to be family friendly, mums and dads need to be fully involved in shaping them. When your baby is in a neonatal unit, it is very easy to feel that you are a bystander. That situation needs to change. Parents need to be at the centre of the care. The new standards will go a long way towards helping to deliver the family-centred approach that we need. I hope that the Scottish Government will make the standards a reality as soon as possible in order to ensure that premature and sick babies have the best possible care and quality of life.
12:58
I congratulate Rhoda Grant on securing time for the debate on an area of extremely specialist healthcare provision in NHS Scotland. I welcome Cara Hilton to the chamber, as this is the first debate in which I have had the opportunity to hear her speak. I thank her for sharing her experience, which has given us a personal insight into the matter.
I take this opportunity to acknowledge the support that is provided across the country by organisations such as Bliss Scotland to parents of sick and premature babies. They do a tremendous amount of work to raise awareness of premature birth matters.
The Scottish Government is committed to ensuring that sick and premature babies receive the highest possible quality of care by the most appropriate professional at all times. We recognise the vital role of our neonatal units in providing intensive and specialist care for sick and premature babies. Only on Monday this week, I was in the Victoria hospital in Kirkcaldy visiting the neonatal unit, which I am sure is a significant improvement on the previous facilities there. The level of neonatal care from the staff is first class. I also had the opportunity to see a BabySam system in operation there: a small camera is located above the incubator so that a mother can observe her baby on a tablet device from her hospital bed at any time. Parents have found that facility to be tremendously useful.
I am pleased that Rhoda Grant’s motion welcomes “Neonatal Care in Scotland: A Quality Framework”. We are extremely fortunate in Scotland to have a high level of expertise available to us, which was provided in the form of the neonatal expert advisory group that we established to develop the framework. The group included key experts from the health professions and other services, and stakeholders from across the country including support groups Bliss and Sands. The expert group also played a vital role in engaging with the managed clinical networks that were established in 2010 to ensure that we had agreed pathways of care and protocols for maternity and neonatal surgical services, and that services, staff and facilities meet the predicted demand from the population.
The framework outlines NHS Scotland’s commitment to providing the highest possible quality of neonatal care for babies. It aims to be a dynamic framework that supports staff in order to allow them to improve services at local level. The framework has been regularly reviewed by neonatal staff throughout its development.
I believe that the framework is ambitious. It needs to be, in order to secure the best form of care for premature and sick babies. We know that implementation of the framework will take time. I acknowledge that Cara Hilton and others are anxious to see things happen as quickly as possible, but I am also sure that members appreciate the complexity and the specialist nature of some of these matters, and understand that health boards need time to implement the framework effectively. We will make sure that that happens.
We have heard mention of workforce issues. Those issues are not unique to neonatal care, despite the specialist nature of the work, but the framework offers boards opportunities to move to a much more modern and stratified service that focuses on the provision of safe care and ensures that the sickest babies are cared for by the right staff with the right skills at the right time and in the right place. A neonatal nursing workload and workforce planning tool that identifies the nursing needs of sick and premature babies has been implemented across NHS Scotland through our neonatal units, so we are making progress. The tool takes into account the staffing recommendations of the British Association of Perinatal Medicine, which Rhoda Grant and Nanette Milne mentioned, and it captures actual nursing workload in real time so that we can see clearly the level of work that is being undertaken.
Many of the requirements that are set out in the framework to deliver high-quality, safe and person-centred neonatal care are already in place at units across the country. The framework makes it clear, however, that boards must put in place plans or pathways to repatriate babies to the unit that is closest to their home as soon as is clinically appropriate for the level of care that they require, and parents should be supported to help them to understand the situation and the choices that they face.
Mark McDonald mentioned the challenges that exist when babies are transferred and parents have to transfer to other units. That is why we need to ensure that boards are working in a co-ordinated way so that we have the right staff in the right place to provide the right care to parents at that point, and then to allow babies to return to more local units, when possible.
We are also working to provide more information to parents. We are undertaking a patient leaflet programme in partnership with Bliss to support and inform parents of what the framework means for them, and what they should expect.
In drawing my remarks to a close, I reassure members that, where any service change is considered as an option to meet the high standards that the experts set out in the framework, boards should work in consultation and in partnership with their local communities. Scottish Government officials are reviewing the implementation plans that have been received from NHS boards and we will meet the three managed clinical networks to go over them in more detail. Facilities for parents, workforce issues and other points that have been raised in today’s debate will be highlighted and discussed at that meeting, as will potential funding opportunities.
I hope that I have reassured members that we are determined to ensure that the framework is implemented across the country so that babies who require such specialist care receive it at the right time.
13:05
Meeting suspended.
14:30
On resuming—