World Prematurity Day

Victoria Prentis Excerpts

Tuesday 24th November 2015 Westminster Hall

[Victoria Prentis (Banbury) (Con)]

It is a pleasure to serve under your chairmanship, Mr Hollobone, although it is not a great pleasure to listen to the debate. The quality, of course, is excellent, but the subject matter is so sad. I am very grateful to my hon. Friend the Member for Daventry (Chris Heaton-Harris) for organising the debate.

It is fair to say that when our son died because he was born prematurely 15 years ago, the focus was, rightly, on the medical situation. I was extremely unwell with pre-eclampsia and HELLP syndrome, which is a leading cause of maternal death worldwide; I am now the patron of the charity in this country. Bliss has reported, and others will speak, about funding and skills shortages in neonatal units. My own experience is that skilled staff worked hard and did all they could for us medically. More could and probably should have been done to create memories. I have spoken and corresponded with my hon. Friend the Minister about that and hope that his excellent work on it will bear fruit. The Minister for family justice is also doing great work for the families of babies who die to ensure best practice during the cremation and burial process.

Today, I want to focus on the other medical services that can make such a difference to premature babies and their families in the long term. This is an issue of growing importance. Just as the elderly are living longer, the very young are surviving in cases where even a few years ago, they would not have done. That is, obviously, good news but, just as with the very old, prematurity presents its own challenges.

First, I turn to mental health, which my friend the hon. Member for Croydon North (Mr Reed) has mentioned. According to Bliss, 40% of mothers of premature babies are affected by postnatal depression soon after birth, compared with 5% to 10% of mothers generally. For those whose babies die, I suggest that 100% need access to counselling, for both the father and the mother, and possibly for siblings and grandparents as well. It is not acceptable that on 41% of neonatal units, parents have no access to a trained mental health worker and on 30% of neonatal units, parents have no access to any psychological support at all. Not only is allowing mental health problems to go untreated needlessly cruel, but it has wider implications.

The Prime Minister made it clear how important family is to him in a speech last year, when he said that

“for those of us who want to strengthen and improve society, there is no better way than strengthening families and strengthening the relationships on which families are built.”

Sadly, however, a very large number—so large a number I am not even going to mention it—of marriages and relationships break up under the strain of a bereavement or the birth of a very sick baby, and more must be done to face that problem head-on.

[Stephen Hammond (Wimbledon) (Con)]

I am on a Bill Committee upstairs, but I wanted to come down to this important debate. I raised some issues about summer-born children in a debate recently. Does my hon. Friend agree that in the long term, unless a family’s wishes about delaying the start of education are recognised, and unless that is embedded in the code by the Department for Education, significant problems will be experienced not only by the premature child but by the family?

[Victoria Prentis]

I agree, not least because I am the mother of a daughter who was born on 28 August. Although she was not premature, I am very aware of the difficulties that prematurity carries with it throughout the lives of children who are born too early.

[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.