Maternity Units: Bereavement Care
(9 years ago)
Commons ChamberRead Hansard Text Read Debate Ministerial Extracts
Will Quince (Colchester) (Con)
I am delighted to have secured this debate on bereavement care in maternity units, which stems from my own experience and from further research. I should stress that I am no expert in maternity or bereavement, but I speak from personal experience. In May 2014, my wife had her 20-week pregnancy scan, at which point an abnormality was identified. Further tests led to a diagnosis of Edwards syndrome. I do not want to go into the detail of my son’s condition, but Edwards syndrome is described as being “not compatible with life”, so we were well aware of the likely outcome. However, our son was clearly a fighter and he survived full term, to 41 weeks, but sadly, in October last year, he was stillborn.
As hard as it is to tell my story, it sets the scene for this debate and will, I hope, give the House a small insight into the experience of the parents of the 5,000 babies who are either stillborn or die within seven days of birth every year in England. It is difficult at the best of times to talk about death, particularly the death of children or babies. We all hope it will never happen to us. But there must be provision, facilities and trained staff ready, willing and able to assist families who find themselves in this awful position.
Jim Shannon (Strangford) (DUP)
I am pleased to be here to support the hon. Gentleman this evening. I realise that he is telling us a very personal story. The figures indicate that 11 babies are stillborn in the UK every day, which makes stillbirth 15 times more common than cot death. Does he agree that we need not only bereavement centres in hospitals but also the presence of someone from the Church to give spiritual, emotional and physical help at that time?
Will Quince
The hon. Gentleman makes a good point, and I thank him for his intervention. The chaplain at the hospital certainly gave us a huge amount of solace. They provide a really important service.
For my wife and I, our care was absolutely fantastic. I cannot praise highly enough the staff at Colchester general hospital who cared for us when we needed it most. The very positive experience that my wife and I had at Colchester represents the model I would like to see rolled out across the country. As the chance of our son being born alive was poor, we were booked into the Rosemary suite, a specialist bereavement suite at the hospital. Crucially, it was far enough away from the hustle and bustle of the maternity unit, with a room that the dad can also stay in and a lounge and kitchenette. It is as near as you can get to a home from home.
The suite gave me and my wife the chance mentally to prepare for what was to come. Importantly, it was away from the noise of crying babies and happy parents and families. It was a place to prepare but also a place to grieve in private, and somewhere that we could be with our son. Importantly, the Rosemary suite also had a cool cot, which is a piece of medical equipment that acts like a refrigerated cradle, so that babies who have died do not need to be taken straight to the mortuary. That means that parents and family members can spend as much time as they want with their baby. Sister Liz Barnes, the gynaecology nurse counsellor, gave us a huge amount of emotional support, both before and after the event. I cannot tell you what a comfort it was to have Liz with us, speaking to us and guiding us through the next steps and, of course, the funeral arrangements.
Having gone through that experience, I had assumed that every maternity unit in this country had a bereavement suite, but sadly that is far from the truth. I have heard shocking stories of a lack of compassion and care shown to parents of stillborn babies in maternity units. An article published in BMJ Open in 2013 on bereaved parents’ experience of stillbirth highlighted some of the problems in care for parents in some of our hospitals. The report carried interviews with bereaved parents and contained some very distressing responses. One mother said:
“They only left him with me for about an hour. Then they just took him away. I was begging them not to take my baby”.
Others talked of a poor experience with hospital staff. One said:
“I thought these people”—
midwives and doctors—
“knew what they were doing. I wish I hadn’t thought that now.”
Another claimed:
“The delivery was just awful from start to finish. They almost treated me like ‘the woman with the dead baby’. There was no sympathy. When I asked to see a doctor, this particular doctor came in and said, ‘We’re very busy.’ And his exact words, I’ll never forget them, “Well, with all due respect, your baby’s dead already’. Which was just the most awful thing you could say.”
Some highlighted a distressing rush to decision making. One mother said:
“I wish someone had said to me in those first few hours, ‘Even if you don’t want to see her now, you can see her in an hour or two. Or in a day or so’. I was left to believe that because I wasn’t ready to see her, that was final.”
Some of these examples are really hard to listen to, but there are also some very encouraging stories within the report. Some mothers spoke of the “very, very caring staff”. Another very movingly said:
“Even though she wasn’t breathing and she didn’t open her eyes, she”—
the midwife—
“still said you’ve got a beautiful baby girl. It just meant the world.”
I will remember until the day I die the midwife who helped me dress our son after he had sadly passed away, and she said, “You have a beautiful baby”. I will never forget that.
The report concludes that in these tragic situations, clinicians and hospital staff
“only have one chance to get it right”.
It also stated that the experience of stillbirth can be influenced as much by staff attitude and caring behaviours as by high-quality clinical procedures. Last month, a study said that the UK provides the best end-of life care in the world, but if we want to maintain this level, we should not forget end-of-life care for stillborn babies and those with very short lives. The impact of stillbirth and post-natal death on parents should not be understated.
As it stands, maternity bereavement care in English hospitals is patchy. A major survey by the bereavement charity, Sands, from 2010 highlighted that nearly half of the maternity units in England did not have a dedicated room on the labour ward for mothers whose baby has died. That is important because these rooms are where they cannot hear other babies, jubilant parents and visiting families. It is absolutely vital that more hospitals recognise the importance of bereavement suites and their role in easing the pain and loss of bereaved families. These bereavement suites should be separate from the main maternity unit.
Even though I was absolutely aware of the likely outcome when I entered the Rosemary suite in October last year, nothing can prepare you for the shock and the numbness that comes from seeing your wife give birth to a lifeless baby. The precious hours we spent in what I can describe only as beautiful silence afterwards helped me and my wife come to terms with what had just happened. No parent should have to face being taken to a room in a maternity ward of crying babies when you have just gone through a stillbirth.
Many charities, such as Sands, Cruse and The Compassionate Friends do a fantastic job in raising awareness of the support that should be provided to bereaved parents. Many of the bereavement suites in hospitals are actually partially funded and provided by the fantastic work of these charities. I know many bereaved parents, us included, raise money after their loss, knowing how valuable these suites are. I know there has been some progress made in this area. In 2013-14, the Government invested £35 million in new maternity equipment and facilities. That helped to fund nearly 20 new bereavement suites and areas to support bereaved families. There is also a growing recognition of the role of bereavement-trained midwives, and that is really important in helping bereaved families after stillbirth or infant death. In February 2014, the NHS published a report on the support available for loss in early and late pregnancy, which stated:
“There needs to be better recognition of the bereavement midwife role. Generally, these roles are not part of the original establishment. Trusts are beginning to recognise the value in having these specialised posts and they are becoming more commonplace.”
It is great to see trusts increasingly recognise the fantastic work that these specialist bereavement suites and the staff can play in these tragic circumstances. I know that my family were very grateful for the fantastic support that we received.
Dr Daniel Poulter (Central Suffolk and North Ipswich) (Con)
I thank my hon. Friend for making a very important and powerful speech, drawing on his own tragic experiences. I have seen such experiences in my own clinical work far too often. Does he agree that whereas we normally leave commissioning to the discretion of local commissioners, we should be pushing in the next mandate to NHS England for there to be standard commissioning for all clinical commissioning groups to ensure that all birthing units have appropriate bereavement space and facilities to look after women who have had a miscarriage or had a stillbirth?
Will Quince
I thank my hon. Friend for that. I could not have put it better myself. I recognise the work that he did when he was a Minister in this area, and the huge part that he played in that £35 million investment.
I wish to see the Department of Health do three things to improve maternity bereavement care in England: first, to carry out a full assessment of the state of maternity bereavement provision in England, including on the number of maternity bereavement suites in each of our maternity units; secondly, to work with NHS England and local clinical commissioning groups to raise awareness of maternity bereavement care; and, thirdly, to consider introducing guidelines that each maternity unit should have a specific maternity bereavement suite for families.
I hope that I have been able to do this matter justice in such a short period of time. Great quality maternity bereavement care had such a positive effect on my family and me. I want the great care that we received to be extended to many other bereaved families across our country. Ernest Hemingway is attributed with saying:
“For sale: baby shoes never worn”
Those words encapsulate in a brutally concise way the sadness of losing a child.
The NHS cannot take away the loss or the grief, but we can make sure that every parent has the time, space and environment in which to grieve in peace.
Antoinette Sandbach (Eddisbury) (Con)
It is a huge honour to follow my hon. Friend the Member for Colchester (Will Quince) who has spoken with such courage about the experience that he and his wife had with the birth of their son. I know that there are many parents who will have had similar experiences, and it is a testament to the support that he received during his son’s birth and death, which he spoke about so movingly, that he has the strength to speak today.
I am grateful to my hon. Friend for asking me to contribute to his debate. Certainly I would not be able to speak in this debate without the support that I received. The night my son died, I woke to find him not breathing. Arriving at hospital, after looking at a flat line in the ambulance for more than 20 minutes, a crash team was waiting for me, but it was too late. The consultant neonatologist was a calm and reassuring presence, and the nursing staff were patient. I readily agreed to a post mortem, as I wanted to know exactly what had happened. Staff at the hospital were wonderful, but I found myself in a plain room with questions being asked of me. I was told that I had to wait for the police. I had left in such a panic that I had left my telephone behind and I could not remember any telephone numbers, and I was there on my own. [Interruption.]
Mark Menzies (Fylde) (Con)
I thank my hon. Friend for giving way in what is a very, very powerful and emotional contribution. Does she agree that this Government are making great strides to help support parents who are at a very vulnerable point in their lives? I look forward to seeing her, during our time in this House, helping to move the debate forward.
Antoinette Sandbach
I certainly do agree with my hon. Friend, and I am very grateful to him for his intervention. That night, I was given a leaflet by the Chrysalis Trust, on which there were telephone numbers that gave me invaluable information about the help that I could access.
I arrived home later that morning to find police officers going through my house. Clearly, they had to investigate the death as it had been away from the hospital. I had to explain to my six-year-old what had happened. It was then that the advice in the leaflet came into its own, because it was made clear to me that I should not say that my son had gone to sleep. It was at that point that I realised that I would need additional help, as I did not know how to cope with what had happened. I called the number for the Chrysalis charity, and it organised counselling for me, which was a lifeline.
I owe a huge debt of gratitude to John from the Alder Centre at Alder Hey hospital, as there was no counselling available in north Wales, and the counselling that was provided was funded through the Chrysalis charity with the aid of a small grant from the NHS trust. The grant was subsequently withdrawn, forcing the closure of that charity.
The two hospitals that serve my constituency, Leighton hospital and the Countess of Chester, both have specialist rooms for babies who are known to have limited life expectancy following birth, with one-to-one-care offered. The support of those staff is invaluable and Leighton, which has an award-winning maternity department, has a trained bereavement midwife. For parents who suffer loss, however, counselling services can be accessed only via a referral from their GP. The Countess of Chester has the newly equipped Lavender suite, with a cool cot that allows parents to spend time with their baby, but a parent presenting at A&E or through the child unit would not have access to that suite. There is a full-time counsellor at the trust, but the workload means that it can be several weeks before a parent can get support. Both hospitals refer to Sands, which has volunteers rather than trained counsellors.
Bliss outlines that 41% of neonatal units nationally say that parents have no access to a trained mental health worker, with 30% of neonatal units saying that parents have no access to any psychological support at all. The Alder Centre offers 24-hour bereavement support and, as the centre has said to me:
“It is important to slow down the decision making to give parents the space in which to make informed decisions, it is vital to have that talking support with someone who can say to you it is alright, take your time.”
Fifteen babies die a day, and there are five deaths a week due to sudden infant death syndrome. That figure has been the same for the past 20 years.
Charities working in this field, such as Sands, Bliss, Group B Strep Support, the Lullaby Trust and Tommy’s, need data so that they can target their research and consider potential common factors contributing to our high infant mortality rates. I urge the Minister to ensure that the British Association of Perinatal Medicine guidelines are followed and that psychological support is available for parents who suffer a perinatal, stillbirth or sudden infant death. I am aware that the Government have made a commitment to put mental health services on an equal footing to physical health services. This area clearly needs careful consideration and a greater degree of concentration by clinical commissioning groups and NHS trusts. I know that there is a national perinatal epidemiology unit at Oxford and would be grateful if the Minister updated us on that and on what has happened to the NHS England plan to support those with counselling needs, the report on which was due to be submitted in March 2015.
Support for parents is arguably just as important, if not more important, when the dreams and hopes of a new baby’s arrival are shattered. The national standards exist, but it is vital to ensure that they are complied with so that every parent has access to the help and support they need.
The Parliamentary Under-Secretary of State for Health (Ben Gummer)
I thank my hon. Friends the Members for Colchester (Will Quince) and for Eddisbury (Antoinette Sandbach) for coming to the House and raising this important matter in an abnormally well-attended Adjournment debate. They are very brave to have shared their personal experiences, and not only the House but the nation will benefit from that. They have raised the issue just at the right time, and I hope we will be able to incorporate the larger part of what they have said in our policy formulation pretty quickly.
My hon. Friend the Member for Colchester said that he was no expert in this field, and I would beg to differ only with that part of his speech, as he surely is, as are his wife and my hon. Friend the Member for Eddisbury. My hon. Friend the Member for Central Suffolk and North Ipswich (Dr Poulter) brought his clinical experience to bear. It is clear from all their comments that there is much to do in this important area. I give an initial commitment that I will try to address all those things in the months ahead.
The description given by my hon. Friend the Member for Colchester of the care at Colchester general hospital is important in two ways. First, he described how care, when it goes well, can completely change what is a traumatic, horrifying experience not into one that is any better but into one that is manageable. Secondly, in relation specifically to that hospital, which has had very serious problems over the past few years, he described how committed and caring the staff are, and how that has shown through in an individual way. Indeed, the experience of Sister Liz Barnes and the rest of the staff at the Rosemary suite should be copied around the country by hospitals that on the face of it, and in other parts of their operations, are performing better than Colchester general hospital. I hope that my hon. Friend will be able to pass back to his hospital and to his constituents the very considerable thanks of the Department and others.
I read the British Medical Journal article, at my hon. Friend’s suggestion. It is a harrowing read. All the stories in it are, by turns, profoundly depressing, shocking and, to someone who is a new father, viscerally arresting, and also uplifting and very beautiful. It contains some very sensible advice about the need for time, for a culture of care, and for careful consideration of parents’ wishes, some distance after the death of a baby, to help us understand how better to look after those who are just entering that most awful place.
My hon. Friend’s first wish was that we look carefully again at the number of bereavement suites around the country. I have already asked officials to look at that. The numbers have increased somewhat since the 2010 survey, so we are now at well over half, but that is nowhere near enough. I will now, as a consequence of his raising this issue, ensure that we get a proper assessment of the number of bereavement suites. Already, all new-build maternity units will have a bereavement suite in the right place. In fact, I intend to toughen up the guidelines so that they are not so much a suggestion, specifically about proximity to the rest of the maternity unit, but something rather more forceful than that. I hope that in finding out how great is the extent of the lack of provision in other hospitals, we can do something to address this in the months ahead.
My hon. Friend raised commissioning and the work of NHS England and local CCGs. My constituency neighbour, my hon. Friend the Member for Central Suffolk and North Ipswich, made a point about the mandate. I will look at this carefully in the next few months. The date for the reassessment of the mandate is coming up shortly. However, the Government are undertaking a whole series of other policy initiatives in maternity and in end-of-life care, and this is the right moment to look at many of the issues that my hon. Friend the Member for Colchester and others raised so that we can get a response that is universal but also respects a lot of the different good work that is going on around the country. In producing a national set of guidelines and policy instruments, I want to make sure that we respect the fact that in different parts of the country organic solutions to these terrible challenges have grown out of local will. Those solutions must be respected and, indeed, spread. I would not want to stamp on that by issuing guidance that was too demanding.
My hon. Friend’s points about guidelines on maternity bereavement were expanded on by my hon. Friend the Member for Eddisbury in terms of counselling. She spoke powerfully of the need to provide equality of care at a distance after the event of a stillbirth or the death of a baby, which is not very usual in the national health service. She highlighted the fact that in some parts of the country this is being done well and in others it is not. That is precisely the kind of variation that we need to eradicate in dealing with the issues which both my hon. Friends raised. My hon. Friend the Member for Eddisbury correctly pointed to the study undertaken by the national perinatal epidemiology unit in 2014, “Listening to parents after stillbirth or the death of a baby after birth”, and I hope to be able to draw on the conclusions of that, which broadly support the point that she made, to see how we can eradicate that variation as quickly as possible.
Both my hon. Friends spoke of the contribution of Bliss, Sands, Tommy’s and other sometimes local charities that do remarkable work. In drawing up policy and guidelines, we need to respect that so that we maximise the enormous good will that there is in trying to help people through stillbirth and the death of a baby. The Minister for Small Business, Industry and Enterprise told me of a constituent of hers who had suffered a stillbirth and had started a fundraising campaign which, within weeks, had surpassed by 10 times the amount that she had expected to raise. That is the power of local bodies which, if we can energise and use it, will enable us to do so much more at a national level. In bringing all this together in the months ahead, I hope we will be able to release that energy, passion and commitment, so much of which is born out of personal tragedy, and that we will be able to do far more than I would be able to achieve in Whitehall or all of us would be able to achieve in this place.
Finally, the vocation of bereavement midwives was mentioned by both my hon. Friends. We are increasing the number of midwives. The mandate has been written in such a way—in part by my hon. Friend the Member for Central Suffolk and North Ipswich—and I hope that will lead to an increase in the number of midwives who have specialist training in bereavement. I will ensure that I get back to my hon. Friends the Members for Colchester and for Eddisbury with details of how that might be achieved.
Our efforts should go further than that. I spoke today to the chief executive of Health Education England about ensuring that there is training in all clinical areas on dealing with bereavement and providing palliative care. I hope we can do far more for all trainee clinicians, especially those dealing with maternity, so that there is a widespread understanding of the issues and it is not left to a specialist group, but is part of the general training in care that should lie right at the heart of our NHS.
The national health service does not mean anything unless we care for those for whom health is not the end point. It is the selflessness of care that should lie at the heart of our national health service because that is the foundation on which we build medical help. That is no more so than in this case where, at the point of greatest expectation of hope and joy, people experience the deepest sense of tragedy. Once again I thank my hon. Friends for making that plain to all of us in the House this evening, and I hope this might be an Adjournment debate with a difference—that it will produce a real outcome, from which they will hopefully draw some encouragement from what is otherwise an unspeakably terrible experience.
Question put and agreed to.