World Prematurity Day

Julian Knight Excerpts

Tuesday 24th November 2015 Westminster Hall

[Chris Heaton-Harris]

I thank the hon. Gentleman for his intervention. He is absolutely right, and I will come on to that later. I, too, have had a lot of contact from my constituents on this issue. In fact, at my very first surgery—or advice centre—as a Member of Parliament back in 2010, a lady called Catherine Allcott came in, and it is through her that I got involved with the charity Bliss. I asked whether she would mind if I read out a couple of paragraphs about what happened to her and why this issue is so important to so many parents such as her and her husband, Nigel. She very kindly agreed, so to set the scene for Members, I will read out Catherine and Nigel’s story.

Their twins, Luke and Grace, were born in the early hours of the morning of 4 May 2006, at 26 weeks’ gestation. The twins’ premature birth caused serious health problems, including brain bleeds, suspected meningitis, necrotising enterocolitis and heart problems. Although Grace is now a happy, healthy child, sadly, Luke died nearly four months after being born. Catherine tells me:

“One of the things we found hardest to deal with at that time was the fact that there was often only one nurse in the NICU”—

the neonatal intensive care unit—

“usually to three or four babies.”

She was on the unit so much because of the issues she was experiencing and because she felt so uneasy about that situation, and that is why she has been involved ever since.

Catherine says:

“When I was there sometimes I would have to help the nurse on duty by running into the next room to fetch help. I often wondered what happened when I wasn’t there. When the nurses would tell me not to spend so much time on the unit, what was I to do? Tell them I didn’t trust them with so many babies to look after?”

She goes on to say:

“As a committed campaigner for high quality neonatal care I am saddened to think that in ten years very little has changed in terms of staffing units safely and effectively. How many babies have died or now endure life changing illnesses because there simply weren’t enough nurses to care for them appropriately, and what cost is that to the NHS?”

Catherine’s story is really significant. She took me on to the Gosset ward—the neonatal ward—in Northampton general hospital. I was told by a junior doctor who works there that it has all completely changed; it has been refitted and is a much nicer space. There is no doubting the passion and the care that the staff on the ward give, but equally, there is no doubting the pressure that they are under and the fact that we can help to improve the conditions for them.

World Prematurity Day takes place on 17 November every year—we have just missed it, but this was the closest time to World Prematurity Day that I could get for the debate. The day is aimed at raising awareness of the issues facing premature babies. It is co-ordinated by a global coalition of charities and groups, including Bliss, each year.

The global statistics are quite astonishing: 15 million babies are born prematurely worldwide each year—that is 29 babies every minute, and one in 10 of all babies born—and in the UK, that equates to nearly 60,000 babies born prematurely each year. Bliss estimates that 113 babies who need specialist care to help them survive and thrive are born every year to parents living in my constituency. About 61 of those babies are born prematurely, at under 37 weeks’ gestation. Those born at under 32 weeks’ gestation are considered very pre-term. Those babies are born before they are fully developed and often spend the longest time in neonatal care.

Obviously, most premature births have no clear cause, whereas others are induced due to medical necessity. There is evidence that risk factors for premature birth include smoking, drinking alcohol, substance abuse, low or high maternal age, infection, high blood pressure and multiple births. There is lots of research—although we could always do more on this subject—showing that socio-economic factors also have an impact.

I want to underline the fact that prematurity is a global issue, which is why we have World Prematurity Day. It is the world’s biggest cause of death for young children. Of the 15 million babies that are born prematurely worldwide each year, more than 1 million do not survive. We are fortunate in the UK to have the resources to care for all babies born prematurely, but there is a long way to go before babies and their parents are given the best possible chance.

[Julian Knight (Solihull) (Con)]

I congratulate my hon. Friend on securing this important debate and on his unstinting work for the families of those who are facing the challenges of a premature birth. Often, one of the most acute problems facing families in that situation is meeting the costs of constant hospital visits. Will he join me in calling on all hospital trusts across the country to follow the Government’s guidelines on hospital parking charges, which would see concessions and even free parking for families of babies who often stay in hospital for months on end?

[Chris Heaton-Harris]

I concur with my hon. Friend on that matter. I have heard many a story about that. I have also visited the John Radcliffe hospital to see its neonatal unit and talked to parents. In Northampton general hospital’s case, there is a way for someone to get their parking charge back, although actually, if they are the parent of a premature child who is not doing very well, the last thing they think about is where they are going to park and how they are going to pay for the ticket. The grandparent of a baby born prematurely who is not very well does not think about the parking charge when they go in, but it is one of their worries when they leave. We need to do better on that issue and spread some of the best practice that exists in the NHS when it comes to parking charges. Those charges seem like a minor element in the scheme of things, but they are such a big deal to parents, grandparents, friends and family—the support mechanism that builds around a family when a baby is born prematurely and especially when a baby is born unwell. My hon. Friend is completely correct to raise that issue.

As I said, we have a long way to go before all babies born too soon have the best possible chance of survival and of living a good-quality life. The UK mortality rate for babies is quite high for a western European country. I have previously raised in this place an article in The Lancet, going back probably five years now, saying that we ranked 33rd of the 35 top western countries in stillbirth mortality rates. We were in a very poor place, and I struggle with the massive regional variation across our country. I would like to think that we have best practice that spreads across the NHS, but there will always be somewhere that has a number of staff sick and where there is pressure on a unit. However, there should not be a massive regional variation. The Lancet article said that stillbirth was a third more likely in the east midlands than in the south-west, so there are significant issues to deal with. Surely that rate should be equal across the piece.

If the UK could match the mortality rates achieved in Sweden and Norway, for example, the lives of at least 1,000 babies could be saved every year. One thousand babies—that is such a significant statistic. I have met parents of stillborn children and know what they have gone through. Some 1,000 babies each year could be saved with best staffing and better equipment, although the issue is not so much about resources. It is about spreading throughout the whole NHS the best practice that I have seen in various hospitals up and down the country. Concerns about variation in care were highlighted in this year’s Bliss baby report, which found that two thirds of neonatal units do not have enough nurses and two thirds do not have enough medical staff to meet Government standards for safe, high-quality care.

We must talk about this significant issue and raise awareness of it. I sat on the Public Accounts Committee for five years and raised it there when we had the chief maternity officer in front of us, because we should talk about such issues whenever we get the opportunity. I know that those working in the NHS get it—I have spoken to all sorts of people from the top to the bottom of the NHS, and they obviously all care passionately for the parents and want the best outcome for their babies—but we have a long way to go to improve the care available to mothers, fathers and their babies. We need to raise the matter at every opportunity, and when I did so in the Public Accounts Committee the chief maternity officer took me to one side afterwards and said, “We are really working hard on this. This is an issue that we know we can do better on. The Government have announced a strategy to reduce infant mortality by, I believe, 50% by 2030. That is obviously welcome and recognises that we could and should be doing better.

I want to raise a few points about the 2015 baby report by Bliss, which has done so much work in this area. I know that plenty of other charities do fantastic work, but Bliss is one of the biggest, and I have worked closely with it through my constituents, the Allcotts. I very much respect its work. The report, entitled “Hanging in the balance”, found that funding shortfalls, national skills shortages and problems with training and recruitment are leaving many neonatal units without the staff they need to meet Government and NHS standards for safe, high-quality care. It states that 64% of neonatal units do not have enough nurses to meet national standards of safe staffing levels; two thirds do not have enough specialist nurses; two thirds do not have the medical staff they need to meet national standards; and 41% have no access to a trained mental health worker—one of my hon. Friends will raise that point, so I will not go into it in detail—leaving parents and staff without the vital support they need to help them cope.

I emphasise that it is not only parents who need help. When I went to the John Radcliffe hospital, I unfortunately went on a morning when three babies had died the night before. None could have been helped, but although the staff are professional people who know exactly what they are doing and the situation they are working in—they have a huge passion for their role, deliver a huge amount of care and become attached to families in a big way—it was palpable that the unit was feeling down that morning. In fact, I felt that I was getting in the way, so I left as soon as I could. It is not just parents who need trained mental health workers available to them; the staff also need them to help them cope in such situations.

There are insufficient funding accounts for three quarters of nursing shortfalls in neonatal units, and 72% of units struggle with at least one aspect of nurse training and development. From all the time I have been involved with the matter, especially when seen through the glasses that I have put on as Daventry’s MP and from standing beside Catherine Allcott on Gosset ward at Northampton general hospital, I know that attracting people to go into this area of nursing is quite a job. Those who go into it find it remarkably rewarding, but it is also a remarkably tough role. That is one reason why vacancies in this field of nursing specialism have historically been high, and we must address that. The rewards are massive, but occasionally there are unbelievably bad days at work.

We should have a whole host of ambitions nationally. I want to be able to look my constituents, Catherine and Nigel, in the eye and say that I have done everything I possibly can to ensure that what happened to them does not happen to anyone else.

--- Later in debate ---

[Julian Knight]

My hon. Friend touched on the question of divorce following the sad death of an infant. I wonder whether she would like to reflect on the need for more marriage guidance and support structures for those who face that awful situation, and more widely on how working towards a seven-day NHS will help to alleviate many of the problems that come about with premature birth.

[Victoria Prentis]

Turning first to the difficulties in relationships, it is true, as I have found out personally and with great difficulty, that fathers and mothers grieve differently. The interface between two very unhappy people can be, as I know from personal experience, very difficult indeed to manage. I am fortunate that my husband and I had been married for a long time before our son died, and we were able to hold it together. We also come from very stable families who were able to provide us with a great deal of support, as was the Church. It is an enormously difficult area for people, however. On the seven-day NHS, yes, it is always terrifying to look at the units at weekends with lower numbers of staff on duty, and to wonder how those people are coping.

I return to poor mental health. It is important to focus not only on the parents but on the babies. From my work with the Parent-Infant Partnership UK, I know that long-term difficulties emerge from a lack of bonding between depressed parents and their children. The sad by-line “two is too late” is substantially true. If prematurity is not to have a multi-generational impact, early action must be taken quickly.

There are simple, practical solutions that would ease the strain on families. My hon. Friend the Member for Gillingham and Rainham (Rehman Chishti) has been working hard to ensure that more beds are provided in mental health mother and baby units nationwide. We heard, at an excellent lecture that my hon. Friend hosted last week in this place, from a psychiatrist who admits women from Cornwall to his unit in Birmingham. Travelling puts additional burdens on families under strain. Probably 50 or 60 more beds are needed nationwide to meet the commitments we have made to give mental health parity of esteem.

Other associated health professionals need to be in at the off, working with premature babies and their families. Professionals such as physiotherapists, occupational therapists, dieticians and speech and language therapists form a vital part of the care that premature babies need. Such care can have an enormous effect on development and quality of life. I will give the example of a child who is well known to me—a little boy born very prematurely to well-informed parents, who were not told about the importance of physiotherapy to his development. That must be seen in the context of the fact that 20% of premature babies have a cerebral palsy diagnosis. That little boy is now 10, and, rather than playing football with his friends, he has had a punishing sequence of operations and casts on his legs. His parents were told at their last appointment that physiotherapy from babyhood might have alleviated the need for all that. According to Bliss, 43% of neonatal units had no access to an occupational therapist, even via referral to another service, and 12% of units had no access to a speech and language therapist. As ever, early intervention saves trauma, time and money.

The Government have wisely seen the need for co-ordinated care for the elderly, with named GPs and someone in charge of the entire patient experience. So often, we speak of the need for a joined-up approach to end-of-life care. Only a few weeks ago, the Minister responded to a debate on palliative care and spoke of the importance of integration between sectors. We are making great progress on that front; the Economist Intelligence Unit recently reported that we have the best palliative care in terms of access to services and the quality of those services. Perhaps the time has come to look at the needs of premature babies and their families as a whole and to do some joined-up thinking to ensure our neonatal care is also the best in the world.