Baby Loss Awareness Week
Stephen Gethins Excerpts(4 years, 9 months ago)
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The Parliamentary Under-Secretary of State for Health and Social Care (Ms Nadine Dorries)
What an important debate this has been, and that is of course thanks to the efforts of my hon. Friend the Member for Eddisbury (Antoinette Sandbach) and the Under-Secretary of State for Work and Pensions, my hon. Friend the Member for Colchester (Will Quince), who has been sitting next to me throughout the debate. In fact, I believe that my hon. Friend the Member for Eddisbury still chairs the APPG on baby loss. This is the fourth year that the House has had this debate, and I hope that my hon. Friends continue to push for it to be held every year, forever. It is such an important time not only to focus on the areas that people feel we should be concentrating on, but also to focus on the achievements and to hear stories from so many people.
In the 10 minutes that I have, I would like to respond to some of the points made. I begin with my right hon. Friend the Member for South West Surrey (Mr Hunt), the former Secretary of State, who, in his usual modest way, omitted to mention the incredible contribution he has made in this area. He spoke passionately about changing from a culture of blame to one of learning; he brought that about in the NHS through his own efforts when, while in the Department of Health and Social Care, he introduced the Healthcare Safety Investigation Branch. He instructed it to undertake, I believe, 1,000 maternity investigations a year, including into stillbirths and other mortality issues.
My right hon. Friend asked how we will share lessons learned between trusts and improve patient safety. HSIB has established a process for doing that. The perinatal mortality review annual report will be published on Thursday, as I think he may know. The HSIB annual report will be published in due course. Both reports will begin to share some of the learning from more than 1,500 cases. We are doing more to share information when things go wrong, and as a result of the former Secretary of State’s initiative, when something goes wrong in one trust, we will ensure that it does not go wrong in another. We all hope that will be the outcome of HSIB. We cannot thank him enough, and I am sure we will be mentioning his efforts for many years to come.
The hon. Member for North Ayrshire and Arran (Patricia Gibson) spoke powerfully about her loss. One of the themes of the debate has been mental health and the support that those who have lost a baby, including fathers and others in the family, need at a time of loss. She moved me to tears. She spoke about testing for pre-eclampsia. In April, NHS England announced that it will make the placental growth factor blood test available across the country, in the light of evidence that the test speeds up the diagnosis of pre-eclampsia. I urge her to push for parity in Scotland, so that the same test given to mothers in England is made available to mothers in Scotland. I am sure that other Members will call for that in this place. I know that other Members in this House have suffered loss through pre-eclampsia. It is a dreadful condition. Our objective should be to do all we can to ensure that no mother has to go through that.
Stephen Gethins (North East Fife) (SNP)
The Minister makes a very good point. I pay enormous tribute to my hon. Friend the Member for North Ayrshire and Arran (Patricia Gibson), who has done phenomenal work in bringing her experiences to the Chamber. I thank the Minister for her remarks. We may not always see eye to eye, but on this issue, it would be great if her Department and the Scottish Government worked closely together.
Ms Dorries
I have already sent a message to my team asking why the test is not being done in Scotland and what we can do to ensure that it is rolled out across the UK. If I can have those conversations with the devolved Administration, I certainly will, and I will certainly push that from my end and in my Department.
Oral Answers to Questions
Stephen Gethins Excerpts(5 years, 7 months ago)
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Matt Hancock
With enthusiasm, I endorse the call from my hon. Friend, who did so much work on this at the Department for Digital, Culture, Media and Sport, both before I was in that Department and when I was Secretary of State there. She made the case brilliantly, and she continues to do so. She is absolutely right.
Stephen Gethins (North East Fife) (SNP)
Matt Hancock
Every EU worker across our health and social care system—whether in the NHS, or working in public health, in local authorities or in social care—is welcome here, and is supported to be welcome here, and we look forward to the settled status scheme rolling out. We are grateful for their service.
Stillbirth
Stephen Gethins Excerpts(8 years, 1 month ago)
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Patricia Gibson (North Ayrshire and Arran) (SNP)
I beg to move,
That this House has considered stillbirth.
I am grateful that I was able to secure this debate today. I know that I am not alone in this place in having direct or indirect experience of the very important issue of stillbirth. I will not attempt to put into words what going through this experience does to those who are left to pick up the pieces. There are no words to describe the pain and, normally, I am a pretty private person. However, I realised that, if I am going to campaign to help to improve this situation, I must speak out and use my experience to make things better, if I can.
Too many people suffer horrendously through stillbirth, but they suffer in silence. I am an MP and I believe that I have a duty to speak up for all those people who feel that they have no voice and that no one cares or understands. I want to work with others to make things better.
Stillbirth is not inevitable; it is not something that just happens. In my case, after five years of IVF treatment and one miscarriage, I experienced what all the medical professionals with whom I came into contact called a “textbook pregnancy”. I was glowing, in rude health and despite my small frame I was carrying a huge baby by the time my pregnancy came to an end. However, what I did not know, and what the medical professionals failed to pick up, was that I was suffering from HELLP syndrome, a form of pre-eclampsia. Apparently, it had been showing up in my blood tests for some time but that was repeatedly missed.
I was returned home, after I arrived at hospital on my due date, as previously arranged, with my hospital bag and ready to be admitted. The great discomfort that I felt—pronounced pain through my whole body—was dismissed as the usual discomfort that comes with late pregnancy. Having returned home, almost immediately, I had to go back to the hospital, where I was kept waiting for over an hour and a half and told that I was being a nuisance. Again, I was told to return home, but my husband refused to allow that to happen. It transpired that, if I had indeed returned home, I would most certainly have died.
As it was, I was sent to a bed with extremely bad grace and administered with high doses of morphine. My baby died overnight. No blood was checked, no monitoring took place and no doctor examined me. The next morning, after my baby was found to have died, doctors wondered why my body would not co-operate as they tried to induce labour. While they waited 48 hours to discuss this, my liver ruptured and I started having fits. My husband was told that I was unlikely to survive.
The reason I tell this story is that the failings in my care are far more common than they should be. Unfortunately, my case is very far from unique, particularly in one significant way. Work undertaken by Sands, the stillbirth and neonatal death charity, showed the importance of listening to mothers’ concerns about their babies. Forty-five per cent. of parents who experienced a stillbirth felt that something was wrong before the medical problem was diagnosed. Too many women are told that their concerns are unfounded and sent home, only for their baby to die soon afterwards. One simple change is for antenatal care to become more collaborative. Listen to mothers’ concerns; women know their own bodies.
To this day, Greater Glasgow and Clyde health board has not admitted that anything went wrong with my care. There has been no apology; apparently, it just happened. When I was discharged from hospital, it was agreed that an investigation into my care would take place and that any lessons that could be learned would be learned. At that point, I—like so many others before me—naively thought that that would happen. How else could the system improve?
Eighteen months later, after repeated phone calls, I received a one-page summary telling me, in language so vague and non-committal that I barely understood it, that the case had been looked at and lessons had been learned. At that point, and with extreme reluctance, I sought medical advice.
From that moment, Greater Glasgow and Clyde health board fought like a caged lion to cover its back to abdicate responsibility, which I realised it had, in fact, been doing all along. However, unlike so many other women, I was in a position to commission two independent reports from experts: Dr Shaxted, a consultant obstetrician and gynaecologist; and Dr Benjamin Stenson, a consultant neonatologist from Edinburgh. Quite frankly, they were astonished at the extraordinary, repeated and glaring errors in the care I received.
Many people would have walked away, and I know many people indeed have walked away, crushed by a system that compounds the huge loss suffered by refusing to accept when mistakes have been made, much less learn from them. I fought on because it was the only way I had of showing that my little boy mattered. I could not allow the loss of my son to be swept aside, ignored and dismissed, as though it were an incident of no importance.
People come to their MPs when they feel powerless, when their own efforts to solve a difficult situation in which they find themselves have failed. People often come to their MP when they cannot make themselves heard when dealing with an institution or organisation that refuses to listen to them, and crushes them beneath its weight. I know how that feels. That is why today I feel privileged to be in a position to offer help to some of my constituents when they feel that sense of powerlessness.
After I was elected as an MP, it seemed to me that the Greater Glasgow and Clyde health board became more interested in settling this case, which had dragged on for more than six years and with no apparent end in sight. I was offered a nominal sum, which I instinctively wanted to refuse. What I wanted was what I had wanted on the day I walked out of the hospital. I wanted an apology and I wanted to see some kind of evidence that work had been done to help to ensure that such mistakes would be much less likely to reoccur.
However, my choice was to take the sum offered, or face the real possibility of a judge awarding me the same amount or less, which in practice would have meant that I would be liable for all costs incurred by both parties. Bankruptcy beckoned, and the Greater Glasgow and Clyde health board was allowed to sweep the entire matter under the carpet, at a time of its choosing and without a backward glance after dragging out the entire process for more than six years. No liability was admitted, and as far as the Greater Glasgow and Clyde health board is concerned there is no case to answer. How is that justice? How can others who have suffered similarly have confidence in a system such as this, and confidence that similar mistakes will not be repeated? Since I have spoken out, many people have contacted me to tell me their own shockingly similar stories.
We know that many stillbirths are avoidable, although it is also true that in some cases we do not even know why such a death has occurred, and I applaud Sands for the work it does to raise funds for research in this area. Governments across the UK must commit the necessary funding to help us to understand more about unexplained stillbirths.
It is thought that around 50% of stillbirths cannot be explained by medical professionals. However, let us be clear—not knowing why around 50% of stillbirths occur does not mean that they are inevitable. The fact is that the majority of unexplained stillbirths occur in low-risk pregnancies. That suggests that routine antenatal monitoring is failing to identify babies at risk, even though such monitoring could save their lives. Around 50% of stillbirths can be explained and much can be done to raise awareness and increase monitoring to help to mitigate risk factors.
Stephen Gethins (North East Fife) (SNP)
First, may I congratulate my hon. Friend on securing the debate and on the courageous way that she has raised this important issue? [Hon. Members: “Hear, hear.”]
Does my hon. Friend agree that sometimes there is a case for a coroner’s inquiry into babies who are said to be stillborn? My sister lost her son, Hamish Kinghorn, and because he was said to be stillborn there could not be a coroner’s inquiry, despite the fact that there were NHS failings during the labour process. It is a difficult job, but that could be one way that can bring succour to the mother, in this case, my sister. This is obviously one of many cases that my hon. Friend is hearing about.
Patricia Gibson
I thank my hon. Friend for those comments. I will talk about the intervention of coroners in a little more detail but, in principle, I agree: there must be a role for coroners in the process.
With greater awareness, parents will be able to make more informed choices about their health and pregnancy care. As with most health issues, social inequalities are a factor. The truth is we are failing to properly identify many babies who are at risk. We lack knowledge, data and research into why babies die.
To put the figures into context, every year around 6,500 babies die before or shortly after birth. That is one baby every hour and a half—the equivalent of 16 jumbo jets crashing every year. Some 4,000 are stillborn and another 2,500 die within a month of birth. Although some work has been done, it is not unfair to say that there has been no significant reduction in the death rates in the past 10 years. There is still a taboo around stillbirth. Folk don’t like to mention it. They don’t know how. It creates discomfort and awkwardness. It is not like other deaths, is it? You cannot talk about shared memories of the lost baby. That leads to those suffering the loss feeling abandoned and isolated. Life must continue behind what is very often a fragile mask of normality.
Thinking of our own lives, almost all of us will know someone who has had a stillbirth or whose baby has died shortly after birth. However, the tragedies are too often hidden. Road traffic accidents kill around 3,000 people each year. Twice as many babies as that die, and still it barely appears on the agenda. Sands research showed that 75% of the public were very surprised by the numbers of stillbirths. There was more concern about cot death and Down’s syndrome, yet stillbirth is much more common. I think that it is not a political priority because it is considered unfashionable. It is not talked about generally and it is even more difficult for people to talk about when they have experienced it.
Will the Minister give assurances that the practice of trusts investigating themselves when things go wrong will be reconsidered? I have formally written to the Scottish Government’s Cabinet Secretary for Health, Shona Robison MSP, to ask for similar consideration to be given to that issue in terms of health boards in Scotland. Ideally, an independent body should complete investigations into alleged failings in care within a specified timeframe. That would prevent long-drawn out investigations or, worse still, legal processes. In my case, those lasted more than six years.
Experts in the field are unequivocal when they tell us with one voice that for otherwise healthy babies to die undelivered near term is an easily avoidable event. In answer to the point made by my hon. Friend the Member for North East Fife (Stephen Gethins), I find myself persuaded by the case put forward by the Campaign for Safer Births that coroners should have the power to hold an inquest for babies who die during labour or are stillborn at full term, which is from 37 weeks on. Coroners currently have no jurisdiction to hold inquests into such deaths.
In my case, Dr Stenson noted “with disappointment” that there was a record in my notes that I did not want a post-mortem performed on my son. He went on to point out that there was no record to indicate who spoke to me or what information I was given. I may or may not have had such a conversation. Quite frankly, I cannot remember, as much of my time in hospital was spent under extremely heavy sedation in a critical care unit and then a high dependency unit. Why was the conversation not had with me when I was more alert? Why was it not properly recorded? I cannot say what my response would have been, but I had no opportunity to make a measured assessment of the relative merits or otherwise of such an important decision. Is that not odd? Is it likely to be unusual? I doubt it very much.
That is what has helped persuade me that coroners should be involved in such decisions. It would mean that particular trends could be noted, informing training needs and highlighting serious failings. It would ultimately help the NHS to deliver what we all want: higher-quality maternity care. Coroners would be in a position to issue a prevention of future deaths report that hospitals must follow to prevent similar mistakes occurring.
In Scotland, 34% of all stillbirths occur at 37 weeks and beyond. The figure for England and Wales stands at 33%. Those figures are truly dreadful and are a national disgrace. The North Ayrshire and Arran health board has a higher rate of stillbirth than the UK average. It comes second in a list of 21 health boards across the UK given red light warnings for high stillbirth and newborn death rates. That causes me alarm, as I know it does for my constituents. Scotland ranks 31st out of 33 high-income countries in the world on this issue. Although international comparisons are difficult—definitions of stillbirth can vary—it is still an appalling statistic.
It is too late to save my little boy. There will be other little boys and girls as eagerly awaited as my baby who are yet to be born. We can do much more in Scotland and across the UK to take action to ensure they have the safest possible care. I urge the Minister to reflect seriously on the suggestions I have put forward. I will also be urging Scotland’s own Cabinet Secretary for Health to continue to work to improve maternity care. We cannot go on allowing 100 babies to die each and every week. It is time that the issue was put firmly on the political agenda. Tears and hand-wringing will not save our babies. Action and political will can. I urge the Minister to take action.