Baby Loss Awareness Week

Gareth Thomas Excerpts

Tuesday 8th October 2019 Commons Chamber

[Caroline Dinenage]

My hon. Friend is right, and so much of what the Government have been working on in recent years is about making sure we have the right facilities, skills and knowledge right across our NHS estate.

Let me reiterate what I mentioned a moment ago, which is that we have seen a 21% reduction in stillbirths two years ahead of our ambitious plans. Of course every stillbirth is a tragedy, but I am sure the House will want to join me in paying tribute to midwives, obstetricians and other members of multi-disciplinary maternity and neonatal teams across the NHS for embracing the maternity safety ambition that we set, and for their incredible hard work in achieving this milestone two years ahead of target—that is remarkable. However, there is no room for any complacency, because there is so much more to do.

Many Members will be aware that the neonatal mortality rate in 2017 was only 4.6% lower than it was in 2010, and that headline figure hides the fact that the ONS data show that the number of live births at very low gestational ages, most of whom die soon after birth, increased significantly between 2014 and 2017. In fact, the neonatal mortality rate in babies born at term—that is, after at least 37 weeks’ gestation—decreased by 19% and the stillbirth rate in term babies decreased by 31.6% between 2010 and 2018. The pre-term birth rate remains 8%. Clearly, the achievement of our ambition depends significantly on reducing those pre-term births.

[Gareth Thomas (Harrow West) (Lab/Co-op)]

I apologise to the Minister and to the House for missing the early part of her remarks. On the statistics she has just commented on, is it not the case that we are going backwards in our progress on neonatal deaths? Is it not also true that there is a marked difference in more socially deprived areas since 2014? Does that not suggest that significantly more investment in this policy area is needed urgently, particularly in those areas where social deprivation is most stark?

[Caroline Dinenage]

The hon. Gentleman is right. We are still going forwards, although nowhere near as quickly as we would want to be going, but there have been some backward steps along the way. A lot of the changes that we have introduced have not yet had the opportunity to take full effect, and I am hopeful that as we move forward we will begin to see neonatal death rates reduce. As I just mentioned, when babies are born at or close to full term, the rate has dropped significantly. It is pre-term births that are causing a lot of concern for us, which is why we are putting continued effort into this issue.

In the long-term plan that was published in January, the NHS committed to accelerate action to achieve the national maternity safety ambition. Maternity services will be supported to implement fully an expanded “Saving Babies’ Lives” care bundle across every maternity unit in England by 2020. The development of specialist pre-term birth clinics will be encouraged in England, which should help very much.

NHS England and NHS Improvement will continue to work with midwives, mothers and families to implement the continuity of carer model, so that by March 2021 most women will have a named individual caring for them during pregnancy and birth and postnatally. That will help to reduce pre-term births, hospital admissions and the need for intervention during labour. It will also improve women’s experience of care.

Let me return to bereavement care. Members will be aware that for three years the Department of Health and Social Care has provided funding to the charity Sands for it to work collaboratively with other baby loss charities and the NHS to develop and pilot the roll-out of a standardised national bereavement care pathway for parents who have experienced baby loss, whether through miscarriage, termination after receiving a diagnosis of foetal abnormality, stillbirth, neonatal death or, indeed, sudden infant death. The pathway sets out nine standards for good bereavement care and has so far been adopted by 40 trusts. I hope that many more will follow.

--- Later in debate ---

[Patricia Gibson]

I thank the hon. Lady for her intervention. That is the kind of support we need to put in place, and I am about to talk about wraparound care.

We know that bereaved parents are more likely to develop depression and other mental health issues, perhaps turning to drink or other forms of self-medication, because we know that those who experience stillbirth or baby loss are at a higher risk of mental health challenges. Given what we know, there is really no excuse not to have measures in place in this awful eventuality for those affected by baby loss. The aftermath of baby loss is no more or less traumatic for those affected than living through the immediate experience and the years following it.

[Gareth Thomas]

I thank the hon. Lady for giving way. She is making a powerful speech, and I strongly support her call for better access to mental health support. I think of the difference that the four-hour target made to quality of care and access to accident and emergency doctors and nurses where needed, and I wonder whether we need a similar target in place, to ensure that trusts and the NHS in general can be accountable for whether access to mental health support is given quickly enough to people who are bereaved in these circumstances.

[Patricia Gibson]

I thank the hon. Gentleman for his intervention. The point I am trying to make is that because we know that these mental health challenges very often arise following baby loss, there is no reason why the infrastructure should not be in place for when these issues arise. Sometimes the demand is immediate, and sometimes it is months or years after. Sometimes people will choose not to call on these services, but the infrastructure needs to be there to ensure that people have access to it in a timely fashion.

Someone pointed out to me today a comment on social media from a chap who spoke about “awareness day fatigue”, but he also acknowledged the importance of those with lived experience feeling able and willing to speak about their experience of baby loss, because this can encourage others to talk of their own loss and perhaps seek the support and help they need. We with lived experience who choose to talk about it can also prevent others from going through the awful experience we had by raising that awareness, to stop other people joining the terrible club of which no one would ever wish to be a member.

Raising awareness is very important. It is not and must not ever become some trite stock phrase, although it may sometimes sound so. It is important because every day I wish to God that I had had some more awareness of pre-eclampsia and HELLP syndrome. I may then have been in a better position—I am sure many mothers would say the same—to articulate what was happening to me, instead of being told by the Southern General Hospital that I was wasting their time when I turned up on the day I was due to deliver my baby and that the terrible pain I was in was normal. What did I expect? It wasn’t labour—go home and lie down. Could I not see they were busy? Had I known more about pre-eclampsia, I would have been able to ask to be checked specifically for that condition, because I was not tested for it. I would have been more assertive, instead of being made to feel like an hysterical older expectant mother.

Raising awareness really does matter. Information matters because it can make a difference between life and death. We know that, too often, mothers are not listened to. Raising awareness cannot be seen as a trite phrase or a box-ticking exercise, and I know that many who have lived with the loss of their baby would say exactly the same.

The chap commenting on these matters on social media is right to say that the lack of mental health support must be addressed. We cannot be discharging mums to send them home to their partners and families and leave them to get on with it. They must have the mental health support they need to help them navigate as best they can the biggest loss and the most appalling experience it is possible for them to have.

We have, over the years, come a distance in the realms of baby loss. We have, with some success, shone a light on it and worked to remove the taboo, but we still need to do more to ensure that the isolation of grief does not swallow up those affected by this loss, which goes against everything that nature would suggest. We need to continue to work to break down the isolation, and we can do that with the proper mental health support to help those affected to find their way back to some semblance of normality and find a path through their fog of grief, so that they can rebuild their lives, albeit around the loss that they have suffered.

It is shocking to learn that the majority of bereaved parents who need help cannot access it in an appropriate place and at an appropriate time. This is because perinatal mental health services are focused on women who are pregnant or have a live baby. Last week in the debate on women’s mental health, many of us spoke about new mums needing mental health support—and that is true: they do—but this need not mean and must not mean that those mums whose babies have died are forgotten. They must not be forgotten; they must be given the support they need because we know that they are at risk of developing mental health challenges. We need to do more to ensure that the mental health infrastructure they need is in place to support them. Women who have experienced stillbirth, miscarriage or ectopic pregnancy are at a higher risk of post-traumatic stress disorder, anxiety and depression than those who have not. They also display clinically significant levels of post-traumatic stress symptoms from five to 18 years after stillbirth.

As I was reading some of the testimony from the Lullaby Trust in preparation for this debate, from women who had suffered stillbirth and described walking out of the hospital with no further contact about the support they might need, I recognised that because that, too, was my experience. I did not feel able to discuss my experience or participate in counselling, but that was just as well because it was never offered. In my case, the hospital was trying to dodge questions and withhold information about how my baby died.

In response to the point made by the hon. Member for East Worthing and Shoreham (Tim Loughton), who is no longer in his place, the demand for coroners’ inquests—or, in Scotland, fatal accident inquiries—into stillbirths, where they are deemed to be in the public interest, has risen only because of hospital trusts and health boards pulling down the shutters when things go wrong. That is where that demand comes from, and that has to stop: it has to change. Parents do not want to consult a lawyer when their baby dies; they just want to know what went wrong and how it can be avoided. That is something health boards and health trusts really need to do more to get their head around.

I am pleased that in Scotland there has been new investment in perinatal mental health to ensure that there is support for bereaved parents prior to discharge and that there is appropriate signposting to third sector services that can provide bereavement and other mental health support. We can no longer turn a blind eye to or overlook those who fall through the gaps in our health system. There must be psychological support for those affected by the death of a baby if they need it.