Baby Loss

Victoria Prentis Excerpts

Thursday 13th October 2016 Commons Chamber

[Victoria Prentis (Banbury) (Con)]

What an honour it is to follow that speech by the hon. Member for Kingston upon Hull North (Diana Johnson). She and I have worked closely together over the last year on difficulties relating to infant cremations, and I very much listened with interest to what she had to say.

When my son died, I was told by our consultant that, one day, it would be possible to put my grief in a box and open the box only when it suited me. Obviously, at the time, I thought she was completely insane; now I realise it is possible to have an element of control over lifting the lid in public—although it is not one I have exercised particularly well today.

Over the years, I have talked about my experiences to raise money for charities, including mental health charities, and I have learned that nothing opens those wallets quicker than a few tears. I have also trained hundreds of midwives for Action on Pre-eclampsia; midwives are fairly used to emotional mothers, so the lid can be fully lifted with them around.

It is an honour to be vice-chair of the all-party group and to have been there at its conception one very late night in the Tea Room. We have well and truly lifted the lid this week in Parliament, which is an achievement in itself. However, just as importantly, we have succeeded in enlisting Health and MOJ Ministers—certainly to date—to our cause. The emotion of the Secretary of State for Health was obvious to all yesterday, and I was pleased to see him here earlier in the debate. The charitable fundraiser in me did wonder whether, next year, we should ask a well-known tissue manufacturer to sponsor baby loss awareness week in Parliament.

In brief, my story is that, following two miscarriages, I developed severe pre-eclampsia and HELLP—hemolysis, elevated liver enzymes and low platelet count—syndrome during my third pregnancy 16 years ago. My son died soon after he was born, and for some time it was not at all clear whether I would survive. To put that in context, my father was slipped from this place at a time of enormous difficulty for the Government, which shows that my condition was clearly very serious. I went on to have two more children, now aged 15 and 13.

With your permission, Mr Deputy Speaker, I would like to touch first on learning points from my own experience and then on some of the work the all-party group has done this year, and finally to make some general points about maternity care going forward.

The learning points from my own experience are out of date, but, sadly, not all of these things have been put right—in fact, most have not. Obviously, physical care comes first where maternal and baby death is a real possibility. However, someone needs to be tasked with the mental care of the whole family, because the death of a baby, as we have heard, leaves deep scars in so many of his or her relations. Memories, clothes and photos make a real difference later, however much they seem like fripperies at the time. Putting bereaved mothers in with live babies is simply not on, however ill they are. Explaining what is going on all the time is critical, and it may need to be done many times to different family members. Medical conditions have to be understood by those who are suffering.

Midwives, as my hon. Friend the Member for Eddisbury (Antoinette Sandbach) said, need considerably more than one hour of bereavement training. They also need training on how to have grown-up conversations on things such as lactation—conversations which were utterly lacking, in my experience. In fact, training all obstetric staff is important, as so many parents go on to have more children. GPs, who are often the first port of call, and other health workers, also need to be aware of the very long-term effects of baby loss.

It is difficult to go back to hospital with whatever condition in the future, let alone one to do with pregnancy. Where possible, parents should not have to tell and re-tell their story at every appointment. HELLP syndrome, which I suffered from, leads to multiple organ failure. I am not a doctor, and I do not really understand what is wrong with me, but if I go to the doctor with a minor condition, I have to go through the whole blinking story again. It would be easy to have a simple flag on my notes so that every time I have my blood pressure taken, for whatever reason, I do not have to re-tell everything.

Fathers, as my hon. Friend the Member for Colchester (Will Quince) mentioned, get ignored. We need proper evidence of the effects on relationships of babies dying. We have some evidence, which he touched on, but it is not broad enough or good enough. Let me read from an article about stillbirth in The Lancet this January:

“Fathers reported feeling unacknowledged as a legitimately grieving parent. The burden of these men keeping feelings to themselves increased the risk of chronic grief. Differences in the grieving process between parents can lead to incongruent grief, which was reported to cause serious relationship issues”.

The effects on grandparents should also be considered. My parents had to cope with the loss of their grandchild and the near loss of their daughter.

Access to mental health provision must be standardised, and good practice copied. According to Bliss, 40% of parents of premature babies need some mental health intervention. I would suggest that every one of those whose babies die needs at least an assessment. Relationship counselling should also be offered as part of an automatic deal, although I do not know at what stage that would be beneficial. At the very least, we need evidence on the effects of baby loss on relationships.

The all-party group is made up of individuals with different experiences and talents. My hon. Friend the Member for Colchester is excellent on parental leave. My hon. Friend the Member for Eddisbury knows more than all others about pathways of care. My role this year has, sadly, been dealing with the issue of infant cremations, not least because of a constituency case I had. I am aware that the Minister is not the Minister who should respond on infant cremation, but it is important that we have a cross-departmental and joined-up approach to the issue, and I would welcome it if he could intervene or at least speak to the MOJ about it.

[Bob Stewart (Beckenham) (Con)]

I have been horrified in listening to this debate. I have never lost a baby in my family, but I am horrified and upset. Surely for a mother who gives birth to a child, stillborn or not, that is her baby or the family’s baby, and surely she and the father should have absolute rights about what happens with the cremation and thereafter. I am absolutely horrified that they do not do so at the moment.

[Victoria Prentis]

I thank my hon. Friend for his helpful intervention.

We in the all-party group welcome the MOJ’s consultation and the subsequent response, which was published just before the summer. It seems that we are—I really hope we are—on the cusp of making some very important changes in this area. I ask that we push for these changes to happen speedily, because they are really important.

[The Minister of State, Department of Health (Mr Philip Dunne)]

I am very grateful to my hon. Friend for letting me intervene during her impressive and important speech. On the back of that comment, I want to inform the House that my colleague the Under-Secretary of State for Justice, my hon. Friend the Member for Bracknell (Dr Lee), announced last month the formation of a national cremation working group. It is now working with all interested parties, and it intends to take evidence from Members of the House. I strongly encourage all hon. Members with such an interest to participate.

[Victoria Prentis]

I very much thank the Minister for that intervention. We in the all-party group were thrilled about the formation of that group.

In that contest, may I give the House a few more examples from the response of the MOJ that we feel are particularly important to take forward speedily? We hope that the MOJ will provide a statutory definition of ashes to make it clear that everything cremated with a baby, including personal items and clothing, must be recovered. We hope that the MOJ will amend cremation application forms to make explicit the applicant’s wishes in relation to ashes that are recovered. Crucially—I know this point is very important for many Members in the Chamber—we hope that the cremation of foetuses of fewer than 24 weeks’ gestation can be brought within the scope of the regulation, where parents wish that to happen. There is some positive news in this very sensitive area.

Moving on to the future of maternity services more generally, my overriding constituency concern at the moment is the future of the Horton general hospital. In fact, if I am honest, it occupies most of my waking moments, and my children complained during our summer holiday in August that I cannot formulate a sentence without the word “Horton” in it, which I fear is true. This summer, I found the lid repeatedly lifted on my own experiences, as we have real safety concerns about the downgrading of our obstetrics unit at the Horton general hospital.

Since last week, a midwife-led unit remains at the Horton general hospital, but all mothers who might—might, not necessarily will—need obstetric care, which is of course the majority of them, have to go under their own steam or be transferred as an emergency to the John Radcliffe hospital in Oxford. In a blue-light ambulance, that journey of between 22 and 27 miles, depending on the route taken, takes about 45 minutes. If my labouring mothers travel in their own car—of course, not all of them have one—the journey can easily take up to an hour and a half, depending on where they live and on the state of the Oxford traffic. The decision to downgrade the service was taken on safety grounds, as the trust had failed to recruit enough obstetricians, but I must say that I have severe safety concerns for the mothers and babies in our area. In 2008, an Independent Reconfiguration Panel report concluded that the distance was too far for our unit to be downgraded. As I see it, nothing has changed except that the Oxford traffic has worsened. I am keen, generally, that we start to be kinder to mothers during pregnancy and birth, and in my view, that does not mean encouraging them to labour in the back of the car on the A34.

We know that personal care leads to better outcomes. We need to take very careful note of Baroness Cumberlege’s recommendations in her “Better Births” report. She said that births should

“become safer, more personalised, kinder, professional and more family friendly”.

We must use the impetus of events such as this week to drive through her major recommendations.

Chief among these recommendations must be the recommendation for continuity not of care but of the carer, which has been shown to reduce premature deaths by 24%. Professor Lesley Regan, recently elected the first woman president of the Royal College of Obstetricians and Gynaecologists for 64 years, has done a plethora of well-evidenced research on miscarriage, demonstrating again and again that a system of reassurance and continuity, with weekly scans and meetings with a midwife, has reduced the rate of recurrent miscarriage by 80%. That figure of 80% is for women who have miscarried three or four times.

My hon. Friend the Member for Eddisbury mentioned the excellent work being done at Queen Charlotte’s as well. In this context, I am troubled that the sustainability and transformation plans might push us towards larger and larger units with less personal care. I may be wrong— I hope I am—and perhaps it is safer for such giant units to deliver the majority of babies, but I worry that in our case in Banbury decisions are being taken about my constituents without their views being considered and without real evidence of the risks involved.

Everyone in the House today is clearly committed to reducing baby loss, and I have never heard such emotion in a debate. We have evidenced-based research to show us how, in part, to do that. I refer the Minister very firmly to Baroness Cumberlege’s report. Yes, better bereavement care is important. Sadly, some babies will always die, as mine did, but let us really now make a commitment to reduce miscarriages and deaths from prematurity.

I need to be able to tell my constituents that they will not have to suffer as I did.

[Hon. Members]

Hear, hear.

--- Later in debate ---

[Fiona Bruce]

The hon. Lady makes an extremely good point. It is vital that we support women in appropriate settings for their situation. As other Members have mentioned, for women who have lost their babies inside the womb but need to go through labour, separate wards should be a priority. They might need to be in hospital for several days. To hear other women around them with their babies must be very distressing. Hospitals need to create better spaces for women at all stages in their pregnancies in such situations.

[Victoria Prentis]

With your permission Madam Deputy Speaker, I would like to share my own experience. As I told the House earlier, I was in hospital for a considerable time because I had been very ill. After I was in intensive care, I was put in a post-natal ward with people with babies. I was in a separate room, but I had to share the bathroom, the midwives and all the other staff, with mothers of live babies. I found it terribly difficult when nice people who had not been told, who were bringing me cups of tea, food and all sorts of care, repeatedly asked me where my baby was. That was so distressing.

[Fiona Bruce]

My heart goes out to my hon. Friend. The compounding of grief in that way is so unnecessary.

Families who have lost babies have spoken about the importance of acknowledging their child’s life. Unfortunately, this is an area where the law adds to distress. Under current UK law, a baby is effectively only considered a person at 24 weeks. This often means that that acknowledgement is not there as it could be. I have even heard of parents lying about the gestation period in order to try to obtain a birth certificate. Alongside other hon. Members, I appeal to Ministers to look again at this. As modern technologies improve, unborn babies are increasingly viable earlier than 24 weeks. The law should move not only with technology, but compassion. I ask Ministers to look at that, too.

There is one last point I would like to mention. It is very sensitive, but I feel I need to mention it. It is the taboo I mentioned earlier, but as one colleague said, if there is one thing we can do in this House it is break taboos. Parents can also suffer a deep sense of loss and bereavement when their longed-for child is not lost during pregnancy due to a miscarriage or stillborn, but due to a disability being diagnosed while their child is in the womb, leading them to have to make the often heart-rending decision to have a termination, sometimes late in pregnancy. There is little, if any, bereavement support or adequate counselling for such parents either before they make that decision or sometime after, yet they too have lost a much-loved child.

In 2013, the all-party pro-life group conducted a detailed, year-long inquiry into abortion on the grounds of disability. I have a copy here with me today. We were repeatedly told by witnesses about the lack of proper counselling and bereavement care for such parents should they want it, which many do. We were also told of some examples of very good practice. One parent told us that they had had a funeral service, which helped enormously. Another told of how they were able to bathe their child before the child was appropriately cared for following the termination. Other witnesses were amazed that this kind of care was available, because they had received none at all. One of our report’s key recommendations was that appropriate bereavement support and counselling should be available for all parents who want it in such situations, even if it is some time later.

I regret to say—I am following slightly in the footsteps of my right hon. Friend the Member for Mid Sussex (Sir Nicholas Soames) who spoke earlier about an uphill struggle—that I have had an uphill struggle in trying to gain the attention of the Department of Health on this issue. I thank hon. Members who have raised their losses in this debate. I hope now that the Department will consider it. Our report was issued in 2013. After the deeply moving Adjournment debate led by my hon. Friends the Members for Eddisbury and for Colchester, I spoke with the then Minister responding to that debate. We agreed that I would send the report to the Department of Health after the debate, which I did. Unfortunately, I received no reply. I sent a reminder some time later. Again, I received no reply. I hope that as a result of today’s debate, the Department of Health will take seriously the additional point that parents in this situation need the same kind of care and support as the others who have been spoken about in this debate today.