National Bereavement Care Pathway

Will Quince Excerpts

Tuesday 24th April 2018 Commons Chamber

[Will Quince (Colchester) (Con)]

It is a pleasure to lead this debate this evening, and may I thank the Minister for being here to respond?

I never entered politics with the intention of becoming a baby loss awareness campaigner. As with so many in this field, the loss of a child—my son in 2014—brought about my interest and desire to bring about change. And being a Member of this House, gives every one of us the platform to make a difference. It can be a small change that affects just one of our constituents, or it can be something larger that affects everyone in the UK. I am proud that through my role in this House I have been able to play even just a small part in the development and roll-out of the national bereavement care pathway, which is something that will make a difference to tens of thousands of bereaved parents and families up and down the country.

Before I move on to the pathway itself, I want to pay tribute to you, Mr Speaker. You have been hugely supportive of our baby loss awareness campaigning efforts in this place, and I know I speak for all members of the all-party group on baby loss when I say a heart- felt thank you.

Launched last year at 11 sites across England, the pathway has been developed by a number of baby loss charities, royal colleges and professional organisations with the support of the Department of Health and Social Care and the APPG. It is designed to improve the quality of bereavement care experienced by parents and families at all stages of pregnancy and baby loss up to 12 months. The pathway provides a practical framework for all those healthcare and other professionals involved and has been informed and led by the views of bereaved parents at every stage of its development. Parents have stressed the importance of sensitive and consistent care, of making informed choices, of privacy, of not having to repeat their stories to different members of staff and of having opportunities to create memories and spend time with their babies. As one bereaved parent put it:

“Parents don’t need protecting; they just need the chance to be parents, provide their child with dignity and create memories.”

Each year in the UK, thousands of parents and wider families sadly go through the devastating experience of losing a child. While we cannot take away that devastation and grief, good care can make a devastating experience feel more manageable, while poor-quality or insensitively delivered care can compound and exacerbate pain.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on his hard work in this area—we are all greatly moved—and he is right to thank you, Mr Speaker, for all you have done. The combination of both your efforts is highly regarded in the House. Does the hon. Gentleman agree that, with three babies a week being stillborn or dying in the first four weeks of life in a nation as small as Northern Ireland, those suffering this heartbreak must be supported, which is why the care pathway is essential?

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[Will Quince]

My hon. Friend is absolutely right, and I thank him for the support he has given to the APPG since its formation. He is right that just one stillbirth or neonatal death is one too many, and while we should rightly campaign for reductions—we have ambitious targets in that regard—it is absolutely right to ensure that even if we hit those targets, as I will come to later, we make sure we have world-class bereavement care for those parents and families who sadly suffer the loss of a child. Through the pathway, we can work to ensure that they receive the best-quality bereavement care that the NHS can deliver.

Bereavement care has been a priority for the APPG for two reasons. First, there is sadly an inconsistency in the quality and standard of bereavement care across the country. Every parent and family who suffer the loss of a child should receive the same high-quality bereavement care no matter where they live, yet that is not the case at the moment. A report from Sands in 2016 found that only 46% of trusts with maternity units provided mandatory bereavement care training for maternity unit staff. Further, of those who did provide the training, 86% provided their staff with just one hour or less of training each year.

A separate report by Bliss in 2015 on neonatal units found that 41% of units had no access to trained mental health workers and that while some units had dedicated bereavement facilities, many relied on normal accommodation or quiet rooms. That is very important. In the case of 50% of bereaved mothers, care after their baby had died was considered poor enough to have affected their psychosocial wellbeing and any plans that they might have for a future baby. We should therefore be ensuring that parents who suffer the loss of a child receive the best possible care wherever they are in the country, and that is exactly what the bereavement care pathway does.

The second reason, however, is that 15 babies sadly die every single day before, during, or shortly after birth. This takes me to the point made by the hon. Member for Strangford (Jim Shannon). Even given the Government’s ambitious target of a 50% reduction in stillbirth and infant death by 2025, there will still be tens of thousands of stillbirths and neonatal deaths, and tens of thousands of parents, grandparents and wider family members will still go through the tragedy of baby loss. While it is right that we work to reduce baby loss rates by, for instance, tackling smoking among pregnant women, we also need to ensure that there is high quality-care throughout the NHS for the parents who do, sadly, lose a child.

Last month, I had the opportunity to visit one of the first pathway pilot sites, established by Chelsea and Westminster and West Middlesex University hospitals, to see it in action. It was great to chat with staff and discuss what challenges they faced in implementing the pathway, and what benefits they had found for parents. My experience during that visit has been backed up by the recent early evaluation of the first phase of the pathway. Feedback from the pilot sites found that it had helped to raise the profile of bereavement care in hospitals—a vital change, now that that will be assessed as part of inspections by the Care Quality Commission—and that it had also encouraged different teams in hospitals and departments to work more closely together.

That independent report showed not only the need for the programme, but its obvious impact. For example, where bereavement midwives are in post, they are making a significant and positive difference in their trusts. However, more work is clearly needed to ensure that good practice is shared across hospital trusts, so that all staff who come into contact with bereaved parents are equipped and helped to deliver the high-quality care that we all want to see. The findings show the huge potential for improving bereavement care in pregnancy and baby loss, something that I, and the all-party parliamentary group, will continue to proudly support. It has also been useful for healthcare professionals to suggest ways in which the pathway can be refined, and, in particular, how it can be ensured that the documents and guidance that are issued are more practical in terms of implementation.

Last Monday, our APPG hosted a reception to mark the launch of the second wave of pathway sites. A further 21 trusts are now piloting the pathway, providing sites where bereaved parents will be able to experience better care.

[Patricia Gibson (North Ayrshire and Arran) (SNP)]

I congratulate the hon. Gentleman on securing the debate and on all the work that he has done in this field, including his work in the all-party group. Earlier, he gave the chilling statistic that 15 babies die each day in the United Kingdom. Of course we all know that the loss of a baby—the death of a child—is the last taboo. The irony is that, although the rolling out of bereavement pathway sites throughout the UK is welcome and much needed, it is because baby loss is so hard to discuss that it has taken us so long to reach this point.

[Will Quince]

The hon. Lady—and I will call her my hon. Friend—has made a very valid point, and I thank her for all her contributions to the formation and the continuing work of the APPG. She is right: there is a taboo surrounding baby loss, and we must break it. I remember the first debate about it that we held here, in November 2015, and the floods of e-mails and messages that we received from parents out there who were saying, “Thank heavens, someone is now talking about baby loss.” They had felt so enclosed, and unable to talk about it, to the extent that people would cross the street to avoid having to have that awkward conversation.

That is exactly why the pathway is so important. Although NHS professionals up and down our country are caring and compassionate to their very core, not everyone has experienced this kind of grief. It is important that the pathway is parent-led, because that enables parents to share the experience of what they went through, how they were feeling, and how things could possibly improve in the future. I encourage the hon. Lady to continue her work in the APPG and continue to participate in debates like this, because that shows the country as a whole that we are willing, ready and able to talk about baby loss, and will not stop talking about it until as have addressed some of these big issues.

[Jim Shannon]

The hon. Gentleman is being gracious in giving way—I thank him for that. One of my staff members had two miscarriages, and the loss for her was immense. What sustained her through that time of grief, which he knows about himself, was the support of family, friends and all of us associated with her, but probably more than anything else her faith and her Christian beliefs. Does he agree that it is critical that that is part of the pathway?

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[Will Quince]

I thank the hon. Gentleman for his further intervention. He raises a good point, because hospital chaplains provide amazing support for those who have gone through this horrific experience. Whether someone is of a religion or of none, there is an important role for the calm, comforting voice and listening ear of a chaplain, who can sit with them and give them the time that NHS professionals are not always able to give in a busy, hustling and bustling maternity or neonatal department.

[Victoria Prentis (Banbury) (Con)]

My hon. Friend is being generous in giving way. Does he agree that the baby loss services that we have organised, particularly last year, have helped many couples across the UK come to terms with their grief? We had a fantastic one at St Mary’s church in Banbury and a fabulous one downstairs in the Crypt here. Whether or not people are of faith, those services enable them to demonstrate their grief in a public place, which is very helpful.

[Will Quince]

I thank my hon. Friend for that intervention and for the considerable work that she has put into both the formation and the ongoing work of the all-party group. She makes a really good point. Those services are not always religious, although most of them tend to be in some way, shape or form, and they are hugely important and comforting to families. I know that she has organised several, and various charities organise them too. They are about not just the religious element but people being able to come together and pay their respects to the children they have lost. They bring about a community and show people that they are not alone and that there are others who have gone through the same or very similar experiences. Long-lasting friendships often flow from them. I remember a service that I attended with my wife—I think it was the year after we lost our son. There was a lady there in her 80s who still came to the service every year to remember the child she lost in her late teens. That shows that the experience stays with people forever, and that these services are really important.

With the evidence showing that the pathway is making a really big difference in improving the quality of bereavement care in the hospital trusts in which it is being piloted, the aim is to roll it out across the country in October. As I said at the beginning, 11 sites launched last October and a further 21 last week, and a nationwide launch in October is very much the ambition. Sands established the project on behalf of the core pathway group, entirely thanks to £50,000 of funding from the Department of Health and Social Care. I am extremely pleased to see my hon. Friend the Member for Ludlow (Mr Dunne), the former Care Quality Minister, in his place, because he did so much with the Secretary of State to help secure that funding.

[Mr Philip Dunne (Ludlow) (Con)]

I hesitate to rise after that generous tribute, but may I say that I am absolutely convinced that without the work of my hon. Friend and his colleagues in the all-party group, we in the Department would not have given this issue the prominence that it has achieved under their leadership? In particular, I wish to mention the role that Sands has played in driving this agenda forward. I pay tribute to that organisation and all the bereaved parents that it represents, and I congratulate my hon. Friend on securing yet another debate on this topic.

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[Will Quince]

I thank my hon. Friend for his kind words. He makes a good point about the charities involved. One of the great strengths of the all-party group is that we have been able to bring together about 40 baby loss charities, and that number grows at every meeting. This is one reason why we have been so successful. Some of the charities are big, including Sands, Bliss and the Lullaby Trust, while others are very small, including those that make teddy bears or knit little items of clothing for their local neonatal units. We are bringing all those charities together with one common purpose: to reduce baby loss and ensure that we have world-class bereavement care. This is what has genuinely made the difference. When politicians work with the charitable sector, the Government, bereaved parents, clinicians and medical professionals, that is when we can really make a difference, and I genuinely believe that this is a prime example of that happening.

This is also a good juncture to pass on my sincere thanks to the Secretary of State for Health and Social Care. He could not have been more supportive of the formation of the all-party group or of our work, and I have always felt that, with him, we were pushing at an open door at every turn. I know that that feeling will be echoed by other members of the group. Every time we have tried to move the agenda forward, the Secretary of State has been willing to listen and to act, and I thank him for that.

We are also most grateful for the Department’s financial support, in the form of £50,000, to help to launch the national bereavement care pathway. However—this is the big “however”—that funding was exhausted last year. Since then, Sands has continued to support the project, covering the costs of staff, partnership, documentation production, website development and all the engagement activity that supports it. To ensure that the pathway is embedded across England by 2020, in line with commitments on improved patient safety, maternity services and bereavement care, the project has to be suitably resourced. Sands has approached the Department of Health and Social Care asking for support to cover the core costs of the pathway. It has formally requested further funding for the current financial year and the next.

There is overwhelming political, parental and professional support for the pathway. I do not want to put the Minister on the spot, but I ask the Government to commit to provide Sands with additional funding for the roll-out of the pathway, which is so important. This will mirror the commitment given by the Scottish Government, who are funding the roll-out in Scotland. More widely, the Department of Health and Social Care should look to put in place the resources needed to ensure that staff are given the training and facilities that they need to make this a success and to give bereaved parents the best possible care. The loss of a child is something that affects tens of thousands of parents every year. The Government can rightly be proud of the progress made, the ambitious targets set and the plans put in place to reduce baby loss. By committing to funding the pathway roll-out across England, the Government can ensure that families who suffer the loss of a baby receive consistent, sensitive, world-class bereavement care right across our NHS.