A couple of weeks ago I was privileged to speak at the Wessex Stillbirth and Maternity Safety Learning Event, hosted by the NHS Wessex Clinical Network. The event brought together eight Trusts from across Hampshire and Dorset, as well as speakers from NHS England and Improvement (NHSE/I), the Healthcare Safety Investigation Branch (HSIB) and Sands.
I was there as a patient, rather than in a professional capacity, to share Kaitlyn’s story at the start of the day. I haven’t yet spoken at many events and this one was definitely the largest; I’m not sure how many people were in the room, perhaps around 75 or so. Enough that when I stood up at the front I definitely felt nervous!
It’s one thing being used to speaking to a room full of people for work, but it’s a very different experience when it’s something so personal, that involves sharing your deepest feelings and emotions. I told Kaitlyn’s birth story, and all the difficulties we had being heard and seen the day I was in labour. I could tell it made for difficult listening; after all, although we are still in the midst of various complaint and investigation processes, neither S nor I believe that anyone turns up to work in the NHS intending to do a bad job. It’s neither our personal nor our professional experience. I haven’t met anyone working for the NHS that wouldn’t be changed by being involved in a situation that ended the way ours did, so I knew this was going to be tough for everyone. But it had to be done. People talk all the time in the NHS about getting better at listening to patient experiences and using them to improve the way care is delivered. I feel I have an ongoing obligation both to Kaitlyn and to my own sense of professional integrity to stand up and be that patient now, sharing what happened in the hopes that improvements can be made, and to give Kaitlyn the voice she deserves. I am very grateful to the Clinical Network for being brave and committed enough to have our story in the room that day.
I spoke about the bereavement care we received in the immediate days after Kaitlyn was born. This was where we could all relax a bit, because the care we received in those early days was really good. I do look back and think I wish we had done more, or done things that didn’t occur to us at the time. But I’ve realised that what I’m really aching for is the lifetime of memories with Kaitlyn that I can never have. What’s important is that our bereavement care gave me memories to hold onto and that I actually look back fondly on, even though I was broken and devastated. I am certain that this has helped our family to grieve in a more healthy way than might otherwise have been the case. I shared these thoughts with the room, to highlight the critical importance of good bereavement care. It’s not a “nice to have”, it’s a core essential of maternity services.
I went on to talk about our lives now and how Kaitlyn remains a central part of our family, present in all that we do. We are a family of four, it’s just that one of us no longer has a physical presence. I finished by sharing (with permission) the babies of bereaved families we have met in the last ten months, people that have become our support network and trusted friends. Like Kaitlyn, almost all of the babies whose names and pictures I shared were born in the area covered by the Wessex Clinical Network. I think this really helped people to realise on an emotional level the human impact of baby loss, beyond the statistics.
I was really glad to have S with me for this event. Often I go off and do these things in my non-working time and as S works full time he can’t usually be there. But this time he was able to take some time off work and come with me. Being able to see his face in the audience was a source of strength for me; when I got too nervous, I could look at him and remember we were here for our daughter, to give her a voice.
After my session we went on to hear about the work of the Wessex Stillbirth Quality Assurance Review Panel and the National Maternity Transformation Programme. Putting aside anyone’s personal or political views regarding the former Secretary of State for Health, Jeremy Hunt, I am grateful that he set the ambition to reduce cases of stillbirth and neonatal death by 50% by 2030, with a 20% reduction by 2020. It has galvanised a huge number of people into action and resulted in resources and infrastructure being put in place to tackle this challenge. Perhaps not enough, after all it’s a drop in the ocean compared to what’s needed. But change isn’t made overnight and there has been a lot of change in a short space of time, with the introduction of the Perinatal Mortality Review Tool, the National Bereavement Care Pathway and the HSIB. I did sometimes hear people slip into talking about numbers and targets, as if the numbers were all that mattered. Sentences such as “we’re doing ok because we’re ahead of where we need to be by now” did slip out (meaning that if the end goal was a 50% reduction, and they had already seen a 35% reduction in cases, they were “ahead of where they needed to be by now”). Critics of health targets say that having a target drives this sort of attitude and language, at the expense of a more rounded approach to improving quality. But the unfortunate choice of language notwithstanding, every baby that didn’t die this year that might have died last year is another life saved, another family saved this pain. If a target drives that kind of change then I’m all for it. It isn’t the target that makes people say the sorts of things illustrated above, that is a mindset and a choice made by people, however subconsciously. It is possible to have a target for improvement whilst instilling the right mindset around improving care, and that is the bullseye we need to aim for if we want to make the best possible impact on stillbirth and neonatal death. I saw a good number of people in the room who were doing exactly that.
Each Trust presented the improvements it has made in improving both the safety of services and the quality of bereavement care. I became aware that Trusts are really trying to encourage families to take up post mortem examinations, unless there is a clear reason not to do so, such as having received a diagnosis during pregnancy, or cultural or religious reasons. The conversation was handled very sensitively, and Trusts are working hard to make sure a broader group of staff (such as midwives) have the knowledge and skills to discuss this potentially difficult issue with families. I shared our experience of the paediatric pathology service and how devastated we were to be told that we would have to wait six months for our report. The consultant pathologist for this part of the country gave a reassuring update that report turnaround times have already come down significantly since Kaitlyn was born and capacity is being further increased. This is great to hear; but we know that there are not enough experts in providing this service in the UK. I can understand why it’s not the most popular area of medical specialism, but something is going to have to be done about this capacity issue. Families put their whole lives on hold while they wait to learn what might have happened to their child, whether any other living children are at risk and whether they can ever have more children if they choose. Sometimes there are delays in even a baby even being seen in the first place, as in Kaitlyn’s case, in which case a funeral is delayed. It is further heartbreak not to be able to lay your child to rest and is a hugely off-putting factor when people are thinking about whether to have a post mortem carried out. Research is so vital if we want to make a difference to the number of babies that die shortly before or after birth. Post mortem examinations and the work the HSIB is doing, alongside the work of charities such as Tommy’s, all form part of this research.
The HSIB gave a fascinating talk outlining their work and the findings of the reports they have published so far. They have started around 60 investigations in total into intrapartum stillbirths (i.e. when the baby is still alive at the onset of labour but goes on to be stillborn) since they came into being, and 11 reports have been published. Kaitlyn’s own report is somewhere in that pipeline and I’m very much hoping it will be completed this year. There are themes surfacing from the 11 published reports. Undiagnosed intrauterine growth restriction is a common factor – some babies have a smaller birth weight than they should, and this is going undetected during pregnancy. I have my own entirely anecdotal, entirely unclinical views on this. In our current antenatal care pathway for low risk pregnancies, if your bump is measured small by the midwife then you are referred for a growth scan. If the scan is fine then you are sent on your merry way with no follow up. Instinctively this makes no sense to me. I find it difficult to see how the pace of growth can be tracked without at least two scans being performed. Growth scans currently don’t include doppler studies, which could help to identify circulation issues; this might be starting to occur if the placenta is degrading or there is a problem involving the umbilical cord. I am obviously not a doctor, I’m no clinician of any kind and what I’m sharing here are my thoughts as a mother that has been through two lots of antenatal care and losing one of my babies. There may be plenty of clinical evidence and reasons why the things I am talking about cannot be done or wouldn’t make any difference. Often, I hear the argument that if every tiny thing is looked and checked for, it risks hugely increasing anxiety levels and possibly causing unintended consequences for babies if an unnecessary intervention is made. Perhaps this is true, especially if something is detected that can’t be treated. It’s just that I am constantly struck with the feeling that we haven’t yet got the balance right; our antenatal care for low risk pregnancies leaves women alone to get on with things too much and we are not making the best possible use of the technology that we are privileged to have at our disposal in the 21st century.
Another common theme in the HSIB reports is the management of the latent phase of labour. This is a huge issue for me and a significant factor in both the way we were dealt with on the day that Kaitlyn died, and the way that her case has been viewed since. The latent phase of labour seems to be viewed by everybody as almost not real labour, as if nothing is going on during this time. In fact, the baby and the mother’s body are preparing themselves for labour; risks are present at any part of pregnancy and labour, and the latent phase is no exception. I’m not suggesting that every woman needs to rush to hospital during the latent phase, but if a woman contacts their hospital and needs help, they should not be dismissed and denied access to care simply because they are not yet having the “right” number of contractions in the “right” amount of time. Not all bodies adhere to the labour textbook, much like not all (if any!) newborn babies adhere to the parenting textbook. To hear an independent review body of expert investigators say that the management of latent phase was an issue was almost like a relief to me, a reassurance that I am not going mad to think the things I think. I get the impression that Trusts are finding it difficult to work with the HSIB because of conflicting processes and difficulties communicating – I guess teething issues happen with any new organisation coming into an established system. To them I would say, please keep going and don’t give up. What the HSIB is set up to do is hugely important and a step forward in the way incidents are investigated. I hope that their findings will inform improvements in care and the NHS can learn from its method of investigating. I guess we will need to wait and see. In the meantime I am aware of how much stock I am putting into their investigation of Kaitlyn’s death and this makes me nervous.
The day ended with excellent talks from Sands about parent engagement and the National Bereavement Care Pathway, a hugely important piece of work for ensuring that the quality of bereavement care is consistent across the country and adheres to CQC standards and best practice. Lots of different partner organisations were involved in its creation, including bereaved parents from across 32 hospitals. It was great to have Sands in the room for the whole day; they do such fantastic work and provide important support to families. They have a huge wealth of stories and experiences to draw on and this knowledge is so valuable in thinking about how to provide the best possible bereavement care. Our family has benefitted from the Sands helpline. Through a Sands group I have me a group of wonderful, inspirational women who give me strength on my hardest days. We used the Sands literature to understand all sorts of things we never thought we would have to think about in our lives. One day I hope to be able to train as a befriender through them, so that I can support others going through the enforced life change of losing a baby. And of course many of the people I have come across working for Sands have lost children themselves. If ever you are looking for a charity to support through your time or fundraising efforts, Sands is a hugely valuable organisation and a lifeline to parents like us.
It was a hard, tiring day but I was privileged to be a part of it. There is still so much to be done, but I did take some heart from seeing firsthand the work that is going into reducing stillbirth and caring for bereaved families in my part of the country. Speaking at events like this and making Kaitlyn a fabric of the improvements that need to happen is my way of parenting her. My passion is giving Kaitlyn the voice she’ll never have for herself – so much the better if it’s part of creating change.
A Keepsake for Kaitlyn 