Baby Loss Awareness Week

Lilian Greenwood Excerpts

Tuesday 9th October 2018 Commons Chamber

[Antoinette Sandbach (Eddisbury) (Con)]

I beg to move,

That this House has considered baby loss awareness week 2018.

I rise to open today’s debate on Baby Loss Awareness Week, and if you, Madam Deputy Speaker, or others wish to read the account of Fiona Crack and her husband about their daughter Willow that is on the BBC site today, you will understand why this debate has continuing endurance and relevance. I am also extremely grateful to my colleagues and the charities that have worked with us on the all-party parliamentary group on baby loss. I want to use my time to highlight some of the successes, to describe how we can ensure that we build on them and to mention a couple of areas where we must focus our efforts more closely as they have become areas of concern.

Looking back over the past year, I am proud of the higher profile of parental bereavement issues. Whereas before many people felt that they did not know how to approach the subject or what to say, we are increasingly seeing people coming forward and offering words of sympathy, kindness and condolence, and the 60 charities working in this field have produced an excellent video, which is available on YouTube under the title “Baby Loss Awareness Week”. Members of the public and anybody watching this debate can watch and see how to approach and discuss the subject.

This change has come about because of a slow and steady change in how we in this country treat those who have lost a child. All of those involved in Baby Loss Awareness Week can be proud of this change, from those of us in this place today to the fantastic charities and voluntary groups, such as Sands, the Lullaby Trust and the 60 other charities that have been involved in the initiative. In addition, doctors, nurses and midwives on the frontline have been changing attitudes during the past few years.

It is not just attitudes that have changed in the past year, but policy. I am delighted that the past year has seen two major policy shifts: the implementation of a pilot of the national bereavement care pathway; and the passage of the Parental Bereavement Act 2018 into law. I am sure that my hon. Friend the Member for Colchester (Will Quince) will want to discuss that Act in more detail, and I pay tribute to my hon. Friend the Member for Thirsk and Malton (Kevin Hollinrake) for his able stewardship in taking the Bill through Parliament. This is a significant step in ensuring that those who lose a child can mourn their loss while knowing that they have a period of paid parental leave from their employment. It marks the introduction of a new benefit such as has not been seen in this country for many decades, and I welcome the progress that the Government have made on that.

I want to spend a little longer concentrating on the national bereavement care pathway. Good care cannot remove parents’ pain and grief, but it can help them through this devastating time. In contrast, poor care can significantly add to their distress. The national bereavement care pathway sets out to deliver that good quality care and it was designed to address the previous postcode lottery in quality of care. The first wave of pilots was launched this time last year, during Baby Loss Awareness Week 2017. Eleven trusts were joined by 21 more when the second wave started in April of this year. This week, we take another step forward, as all the documents, tools and resources are being made publicly available for the first time. The national bereavement care pathway is paving the way for excellent care after pregnancy and baby loss. It aims to improve the quality of bereavement care experienced by parents and families at all stages. That includes miscarriage, stillbirth, neonatal death, molar and ectopic pregnancy, termination of pregnancy due to foetal abnormality, and sudden and unexpected death in infants of up to 12 months. This bereavement care pathway provides healthcare professionals with detailed guidance, training programmes, staff resources and simplified paperwork so that they can provide high-quality bereavement care when families need it most.

We are lucky because an evaluation of the first wave of pilots has taken place, and the results have been really positive. Parents have responded overwhelmingly positively, considering what they went through at the time. Some 95% of parents surveyed agreed that the hospital was a caring and supportive environment; 98% of parents agreed that they were treated with respect; 90% felt that they were provided with information that was easy to understand; 92% felt that the decisions they made in hospital were the right ones at the time; and 96% felt that they were communicated with sensitively. That is so important, because that shows that there has been a huge change in advice and support. I think my hon. Friend the Member for Banbury (Victoria Prentis) will be talking about the less encouraging statistics for areas that have not been able to roll out the pathway.

It is not only parents but medical professionals who feel the difference. At the beginning of the pilot, medical professionals were interviewed and asked what was preventing the delivery of the best possible quality bereavement care. One said that

“people were in their own little bubbles. There wasn’t much sharing, nothing was passed around as a standard.”

Medical staff also identified a lack of staff training, poor bereavement suite facilities, complex paperwork, long delays in getting post-mortem results back, staff not knowing how to communicate with parents about their loss, and different levels of awareness or knowledge between departments at the same hospital. The evaluation shows that significant progress is being made on a number of those concerns. Some 77% of the professionals who are aware of the pathway agree that, overall, bereavement care has improved in their NHS trust during the period of the pilot. That is something that our national health service can be really proud of, because it represents a significant change. Two thirds of professionals who are aware of the pathway agree that it has helped to raise the profile of effective bereavement care in their trust. The proportion of health professionals who feel prepared to communicate with bereaved parents, able to discuss bad news with parents and supported to deliver good-quality bereavement care has increased. If this were an exam, the student would have passed with flying colours.

The testimony of one parent who was involved in the pilot says it all:

“There was a doctor who was really, really helpful with me. It was such a shock and took such a long time for me to process why and how this happened; I must have gone in about five times, where she had to sit me down and tell me the same thing again and again. It was never too much trouble for her, and I needed that. Having patience with someone is really, really important—because you might have said it five or six times but I need you to say it again. She’s a doctor, she’s a very busy woman but she always made time to speak to me.”

This kind of care, and this kindness in care, is so important for parents in that position. They are going through the worst experience of their lives, and they are not always thinking straight. They are guaranteed to be sleep deprived and distraught. The kindness of a doctor or the concern of a midwife can be the first small building block on the road to recovery.

However, despite these successes and others, which I am sure colleagues from across the House will mention, we must continue with our work. In the most recent year for which figures are available, 5,500 babies were stillborn or died within 28 days of birth in the UK. Some of our European neighbours have managed to cut perinatal mortality rates by up to half, which shows there is still more to do. I welcome the Government’s target of halving perinatal mortality rates in the UK by 2025.

One thing I am becoming increasingly concerned about is the rising number of child death cases in hospitals. Although I am pleased that the light of transparency is being shone into these hospitals, I cannot help being concerned by the number of such cases in the last year. Shrewsbury and Telford Hospital NHS Trust has been the subject of horrific news, with the investigation into maternity care expanding to more than 100 cases. Likewise, in my own area, the Countess of Chester Hospital is the subject of a criminal investigation amid allegations that a member of medical staff was involved in 17 deaths and 15 non-fatal collapses. More broadly, a recent study found that the baby death rate was 10% higher than expected for a maternity unit.

Just last week, we saw the news from Wales that Cwm Taf University Health Board may have failed to properly investigate historical cases of stillbirth and neonatal deaths in its maternity units. I know that that case—the most recent—is devolved, and there will be things that the Minister cannot say while investigations are ongoing, but I would be grateful if he reassured the House about the steps that are being taken to address these specific issues, and what plans he has to ensure that when such issues arise in the future, there is a plan in place to support affected parents and ensure that the investigation is as quick and thorough as possible.

[Lilian Greenwood (Nottingham South) (Lab)]

The hon. Lady is speaking with great authority on this issue, as she always does. Does she agree that one thing the Government could do in this area, particularly when it comes to stillbirth, is to extend the power of coroners to investigate stillbirths of full-term babies? We have discussed that previously, and it is the subject of a private Member’s Bill. Does she think that that would help in the investigation, and therefore the prevention, of unnecessary deaths?

[Antoinette Sandbach]

I know that across the House there is a great interest in the need for coroners’ investigations, and I believe that the hon. Member for East Worthing and Shoreham (Tim Loughton) will be introducing a private Member’s Bill. I think that the idea has support from the Government. It is incredibly important for parents to give consent to post-mortems—that can be a very sensitive area, particularly for parents from ethnic minority backgrounds—because very often, medical findings assist with the research to discover the causes of stillbirth and neonatal death. The hon. Lady makes a very good point.

In closing, I hope that colleagues will recognise that this year has been one of significant policy wins.

--- Later in debate ---

[Will Quince]

I thank my hon. Friend for raising those very good points, which are entirely valid. His points about support, both in hospital and post-hospital, and about the support available to fathers, are very important and I shall come on to them in a moment.

Just before we move on to the debate proper, I want to talk a bit about my right hon. Friend the Member for South West Surrey (Mr Hunt), because we have not had a chance since his elevation to the position of Foreign Secretary to praise him for the work he did on these matters when he was Health Secretary. From the beginning, we also felt supported by Ben Gummer—I think I am allowed to call him that now, as he is the former Member for Ipswich; he encouraged us to set up the all-party parliamentary group. However, the former Health and Social Care Secretary, now Foreign Secretary, could not have been more supportive, and we felt from the very beginning that we were pushing against an open door. He knew that the issue needed to be addressed, and he threw the full weight of the Department behind it. I thank him on the behalf of the APPG, and I know that all the charities feel the same way. He was hugely supportive and continues to be so.

We produced a video for Baby Loss Awareness Week, which is live now, and my right hon. Friend features in it, showing how passionate he is about tackling this issue. I also want to say how much the rest of the APPG and I are looking forward to working with the new Secretary of State for Health and Social Care, my right hon. Friend the Member for West Suffolk (Matt Hancock), who has already reached out to me and other members of the APPG, as have his special advisers, to continue that work, which they recognise is important.

Several colleagues have already referenced the hugely important work done by charities up and down the country. That includes both big charities such as Sands, which is marking its 40th anniversary this year, the Lullaby Trust, the Mariposa Trust, Tamba and so many others and small charities that provide support locally. The support that they provide to parents at the most difficult time in their lives is so valuable, and I thank everyone who works in and volunteers for those charities.

[Lilian Greenwood]

The hon. Gentleman is making a powerful contribution, as he always does, and I congratulate him and all the members of the APPG on their work. Will he join me in congratulating a local Nottinghamshire charity called Forever Stars? Not only is it doing fantastic work supporting parents who have lost a child, but it has managed to raise £300,000 to create two new bereavement suites at the two Nottingham hospitals over the past year. I know that that has already been touched on in the debate, but it makes such a difference to parents who have experienced the loss of a child when they have somewhere suitable to be with their baby and deal with the aftermath of a terrible situation.

[Will Quince]

I thank the hon. Lady for her intervention. I will absolutely thank and pay tribute to that charity. In so many cases, bereaved parents want to do something to make a difference and to provide a legacy for or mark the life of their child, however short, and raising money to support our NHS or to provide support for bereaved parents is hugely worth while. If I heard the hon. Lady right, an incredible £300,000 was raised: I pay tribute to the work that parents across the country do to raise such sums, which support the NHS in providing world-class facilities. I will discuss this further in a bit, but although we do have world-class facilities and bereavement suites some of our hospitals do not have them, which is an issue in and of itself.

I have thanked charities, but it is also important to thank the clinicians and support staff within the NHS who work so hard in this area. They really are heroes, and their work is incredible. Midwives do an incredible job, because although they are so often there at the best time in someone’s life—when a child is born—they are sometimes sadly also there at the very worst time in someone’s life. Their ability to, in effect, wear both hats and provide that caring, compassionate, empathetic support is a credit to them. We really do have world-class staff in our NHS.

I also thank all the clinicians who are working so hard on the national bereavement care pathway. Numerous colleagues have mentioned it already, and it is important to reference the progress made so far. I do not want this to be a back-patting debate, because I will move on to some areas where the Government could do more, but we have achieved quite a lot in just over three years. The first, and probably most significant, achievement was the Government’s commitment to reduce stillbirth and neonatal death by 20% by 2020 and by half by 2025. I note that that target has been moved forward—I think the target three years ago was 2030—thanks to the work of the Secretary of State for Health and Social Care, Health Ministers and clinicians. Having spoken to the Department and to clinicians up and down the country, I understand that those targets are realistic and achievable and that we are on track to achieve them, which is quite incredible.

However, it is important to note that even if we achieve the target of reducing stillbirth and neonatal death by 50%, that still means that around 2,000 or 2,500 babies are dying in the UK every single year and that a similar number of families will be going through a horrific personal tragedy, so we must ensure that we have world-class support. That is why the national care bereavement pathway, which I think it is fair to say was a concept initially drawn up based on the APPG’s work with charities, is game changing. The pathway is game changing, because what we had and continue to have across our NHS is world-class bereavement care, but it can be found only in pockets. It is not consistent across the NHS.

A particular hospital trust may have one or perhaps even two specialist bereavement suites and one, two or maybe more specialist bereavement-trained midwives or gynaecological counsellors, and all sorts of charities may be supporting bereaved parents within that hospital trust. In other hospitals, however, there may be no bereavement suite and perhaps just one or even no specialist bereavement-trained midwives or gynaecological counsellors. That is an issue, so a national bereavement care pathway that provides consistent, compassionate, empathetic care and support across our NHS, whichever hospital one visits, is so important.