Baby Loss Awareness Week

Sarah Champion Excerpts

Tuesday 8th October 2019 Commons Chamber

[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.

[Sarah Champion (Rotherham) (Lab)]

I was contacted by one of my constituents, whose baby died in July at 26 days. She still, now, has been unable to get counselling support. Will the Minister look into giving clear guidance to clinical commissioning groups to make sure that the National Institute for Health and Care Excellence guidance on bereavement is there for everyone?

[Caroline Dinenage]

Yes. That guidance is there. My heart goes out to the hon. Lady’s constituent. If she wants to get in touch with us about any lack of access to care and support, we will almost certainly be able to help and look into it for her.

Bereaved parents need time to grieve. I take this opportunity to congratulate my hon. Friend the Member for Thirsk and Malton (Kevin Hollinrake)—I do not think he is present—who last year had a fantastic private Member’s Bill. As a result, from 2020 the Parental Bereavement (Leave and Pay) Act 2018 will give all employed parents a day-one right to two weeks’ leave if they lose a child who is under the age of 18 or suffer a stillbirth from 24 weeks of pregnancy.

Finally, the NHS commits in the long-term plan to improve access to and the quality of perinatal mental healthcare for mothers, their partners and children, by increasing access to evidence-based care for women with moderate to severe perinatal mental health difficulties and personality disorder diagnosis. We also want to increase access to evidence-based psychological support and therapy, including digital options in a maternity setting; the development of maternity outreach clinics, as I have already mentioned, that will integrate maternity and reproductive health; and psychological therapy for women experiencing mental health difficulties directly arising from or related to their maternity experience.

In conclusion, the Government and NHS are fully committed to reducing the number of babies who die during pregnancy or in the neonatal period, and to providing that absolutely fundamental and much-needed support for bereaved families.

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[Sarah Champion (Rotherham) (Lab)]

Before this job, I ran a children’s hospice. We were able to provide wraparound care to the whole family. We worked with hundreds of families in my time there, and I am really proud to say that because of that care, not one family separated.

[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.

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[Sarah Champion]

Does the hon. Lady share my concern that that is not the case across all health trusts and that we need to make statutory provision?

[Antoinette Sandbach]

I absolutely do, and I shall come on to that. Having been through the system in Wales, where absolutely no bereavement care at all was offered to me—a charity set up by a former Member of Parliament paid for me to have counselling from Alder Hey—I am as aware as anyone of the issues around access to support. Some 130 NHS trusts have expressed an interest in using the bereavement care pathway, and they should be encouraged to take up best practice.

It is not all good news, however. The reality is that while many hospital trusts are now putting that support in place, the gap in provision comes when parents go back into the community. It is there that the issues need to be tackled. The information gathered by the Baby Loss Awareness Alliance showed that there was a clear need for specialist psychological support for parents. A freedom of information request sent out by Sands in July 2019 painted a picture of very patchy support, with commissioners in over 86% of areas across the UK telling us that they do not commission specialist therapies to support bereaved parents. That is quite scandalous when we look at the good progress that has been made in the acute sector. That is where the gap is present.

Less than 40% of commissioners said that that support was available for both parents, so when it was available, it was only available for one parent. That is completely wrong, for all the reasons my hon. Friend the Member for Colchester has outlined. It should not matter whether someone is a mum or dad; they should be able to access specialist psychological support if it is needed. Why is that important? Some 60% of bereaved parents said that, in the end, they did feel that they needed psychological support. Certainly, I did not want to talk to a load of volunteers; I wanted to talk to a professional who could give me the tools and the understanding to cope with the loss of my daughter and to be able to go back to work and start functioning in a normal way.

It is right to acknowledge that women who experience stillbirth, miscarriage or ectopic pregnancy are at high risk of post-traumatic stress disorder, anxiety and depression. I remember giving a speech to a City law firm, where I was told that it was extremely common that mothers never went back to work having lost a child, because of the impact of that loss on them. By investing in that support, we encourage the family to stay together and to get to a place where it is possible to live with loss and still contribute to society.

Where there has been a sudden or unexpected death, 39% of women three months after suffering an early pregnancy loss met the criteria for probable to moderate post-traumatic stress disorder. Some 68% of mothers and 44% of partners reported four or more negative psychological symptoms at 10 days. The important Bill brought forward by my hon. Friend the Member for Thirsk and Malton (Kevin Hollinrake), which allowed some paid bereavement leave for parents, allows some time for parents to come to terms with the issues they face and, very importantly, to find the services that will help them to deal with the loss they have suffered.

I encourage Ministers to read the “Life after Loss” report, which was published last week by the Centre for Mental Health. I support the Minister in the ambition to roll out national centres that will permit parents to access support locally, working with commissioners and the third sector, which can very often have expertise in this area. Support can be commissioned locally without the need for infrastructure, because there is already a third sector organisation. I am thinking of the Petals Charity, for example, which provides counselling. However, its services are not provided all over the UK.

There is another really good example in Wales: 2 Wish Upon A Star. This charity is proactive and not reactive in its approach. It contacts parents within hours of them leaving hospital to discuss their loss and to see what support they need. It can then put a counsellor in a car and on the way to the bereaved parents within hours, rather than them having to wait weeks or months for a referral. If we could roll out that kind of service, delivered by the third sector but supported by the national health service, in areas where there are gaps in provision, that would make a huge difference to parents’ lives.

As chair of the all-party group on baby loss, I said that I would not only celebrate success but hold feet to the fire, so I ask the Government to undertake a review of the current provision, including the evaluation of the models of best practice involving parents and professionals, and to develop quality standards and national guidance to support those planning, funding and delivering specialist psychological support—that must be delivered at CCG level. Acute hospitals are really beginning to deal with this, but the provision at a local level needs to be addressed. I also ask the Government to provide guidance to support local services to effectively assess the psychological support needs of bereaved parents and develop pathways to meet those needs.

It is a real pleasure that we can speak in this debate—an advantage of not proroguing—at the beginning of Baby Loss Awareness Week. It shows the valuable work that is done in this House and that is achieved through cross-party working with a Government who have been really committed to pushing forward this agenda. However, there is more work to do, and with the previous commitment to try to put mental health services on a par with physical health services, this is an area that needs addressing so that that support is put in place.

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[Sarah Champion (Rotherham) (Lab)]

I have a couple of points for the Minister. First, there is a lack of trained paediatric nurses, particularly in palliative care, and anything she can do to encourage people to train in that vital specialism would be hugely appreciated.

The other point is that children’s hospices are wonderful, remarkable places, but virtually all their money comes from the public through fundraising. Again, if there is anything the Minister can do to give them just a base coverage of funding on a statutory basis, year in, year out, that would make such a difference to their being able to commit to those services.

Finally, drawing on my privileged experience of running a children’s hospice and meeting hundreds of families, the one thing that strikes me most is that all those families say that what they liked best about and what they got most from the hospice was being able to talk about their child who had passed. I had not realised that most people out there do not do that. They said that friends would cross the street to avoid talking to them, not because they were being mean but because they did not want to burden them. They did not want them to cry or to crumble. Actually, the one thing those families want more than anything is to talk about their child, because that is what keeps them alive in their heart.

This debate is so important to everybody involved, and I make this plea to everyone watching: please, just talk to that person and celebrate their child. However brief their life was, it was an important life that we need to recognise.