Voices that need to be heard

I’m aware that I talk about Joshua in my blogs and on Twitter a lot – perhaps too often. Many people now know his story and most know what happened at Morecambe Bay. Joshua’s death is only one of a large number of avoidable deaths caused by serious failures in care at the hospital where he was born and just one of hundreds of avoidable deaths that happen in maternity units across the NHS each year. So this blog isn’t about Joshua (he won’t be mentioned again), instead I want to write more in general terms about the experience of loss due to failures in maternity care, what I’ve learned from meeting other families and what I’ve learned about how the NHS responds.

 Just this week, HSJ reported on the tragic case of baby Kate Stanton-Davies. You can read the full HSJ report here. Some of the most difficult and upsetting aspects to this tragic case include the following:

 Kate’s mother was wrongly classified as ‘low risk’ and not given a choice of where to deliver Kate

 A failure to follow guidelines and best practice

 Poor quality records, retrospective completion of clinical notes and conflicting accounts of events

 An investigation by the Local Supervisory Authority that was ‘not fit for purpose’ and included ‘multiple  inaccuracies’

 The trust’s ‘inappropriate reliance’ on this flawed report meant it had delayed accepting failures had  occurred and could not be assured lessons had been learnt.

 The supervisory report referred to baby Kate as ‘it’.

 Although baby Kate tragically died in march 2009, a proper investigation in order to learn lessons is only just being established now, more than 6 years later. What is most shocking of all is the absolute certainly that were in not for the extreme tenacity and courage of Kate’s parents, a proper investigation wouldn’t be happening at all. 

 The reality of losing a baby is a life changing event, merely getting back to some sense of routine can feel almost impossible. Very few bereaved families also have the strength to battle with the system in the way that baby Kate’s mum and dad have been able to. For every case like Kate’s where the extent of failures and coverup are eventually exposed due to super human efforts of families, there must be 100’s of other cases that are swept under the carpet.

 In recent years, I’ve personally met several families who have contacted me following similar circumstances. Every experience is different, but over time some common themes have become clear to me, these include:

 A sense that the focus of their maternity care was on ‘experience’ and achieving ‘normal’ birth and not on safety

 That their own concerns about what was happening weren’t listened to or acted on

 A failure to recognise and act on signs that indicated that there might be a problem developing sooner

 That following the tragic outcome, the system responded defensively and with hostility

 I have recently heard about a case where a senior manager instructed a clinician to omit key information from a serious incident report because of concerns about ‘how it would be perceived’. 

 Out of desperation, many families who feel that the trust and staff involved haven’t been open and honest with them turn to the legal system which can be drawn out and even more defensive. Sometimes families only gain an acceptance of serious failure years later, meaning lessons from what happened either don’t happen at all or happen much too late. To make this situation worse, families are still being told by the Health Service Ombudsman that they ‘…would not be able to consider their complaint whilst legal proceedings are ongoing’, meaning families who are told this effectively have their right to appeal the trust’s response to their compliant removed. 

 Families who lose babies due to failures in maternity care are often traumatised as well as grief stricken. Their trust in healthcare professionals is understandably shattered, but rather than acting to restore this trust through a caring and compassionate approach, more often than not the institutional response is a failure to be open and honest and only serves to deepen this distrust further. 

 Kate’s mum told me ‘I live for the sake of my living daughter, I fight for the sake of my dead daughter, but every day all I really do is exist because of the pain that is so intense as a result of my loss, and everything I continue to have to live through.’

I remain concerned that due to inadequate systems surrounding the reporting and investigation of serous harm and avoidable loss in maternity services, we still don’t have as full an understanding of the variation in quality and safety and the underlying causes as we could. Projects like Each Baby Counts are hugely important, but until this work is complete, one way we can really start to understand where the gaps are is by meeting families who have experienced avoidable harm and loss and listening to their experience and insights. In fact if we don’t do this, aren’t we missing out on one of the richest and most valuable sources of information about safety and quality and how to improve that there is?

When I was a member of the national maternity review panel, I argued that the review should hold some special workshops and focus groups to ensure that it did properly listen to people with recent experience of avoidable loss and harm. My concern was that the regional events run by the maternity review might be quite daunting to many bereaved parents. For example, just going somewhere with other mums with young children and babies can be emotionally hard for someone who has recently lost a baby.

 I was saddened that I wasn’t listened to regarding these issues.

 After I resigned from the maternity review, I was contacted by one bereaved mum who told me about attending a ‘think tank’ event run by the maternity review. She told me that she felt ‘a lone voice’ when trying to talk about safety. The table she was on was mostly maternity professionals and they had to do a group exercise to discuss a scenario where a mum had wanted a homebirth but had been advised by a doctor against it. The mum then went on to have a straightforward birth and a healthy baby but felt ‘regret’ because she hadn’t had the birth experience she wanted. 

 I felt saddened when I heard this. I thought about how that mum must have felt having a conversation with midwifery professionals about sympathy for someone who didn’t get the birth ‘experience’ they wanted, yet had a healthy and perfect baby – the one thing this mum would have given the whole world to change in her own situation. 

 On further reflection, I now realise that this example perfectly illustrates a wider issue across maternity services at the moment; that there is a real tension between an ethos that focuses on ‘experience’ but where risk and safety sometimes feel played down. 

 I have a genuine concern that in some places, a culture has developed where there is so much emphasis on ‘experience’ and ‘protecting normality’, that the occasional avoidable loss or serious harm caused to a baby because of failure to properly assess and manage risk, is seen as a sad, but inevitable aspect of childbirth and the full impact on the family involved isn’t understood or given the weight it should be. 

  In a system that can currently act to make it so hard for the truth about avoidable harm and loss to emerge and lessons to be learned, it seems to me that a good starting point for any  review looking at recommendations for improvement in maternity care should be to reach out and listen to as many people affected by avoidable harm and loss as possible and furthermore, to actively involve such people in the review process and design of solutions. 

If we don’t do this, I feel that there is a real danger that the most important issues will be missed and that the very people who have the biggest stake in wanting to see services improve, those who truly understand the impact of when things go wrong, the voices that we most need to listen to, won’t truly have been heard. 

2 thoughts on “Voices that need to be heard

  1. phsothefacts.com

    A powerful blog James and yes these voices must be heard. NHS service users must be able to bring their insight to the otherwise closed professional talking shops. Perhaps you can have a word with Dods Parliamentary Communication team who consistently refuse to give reduce rates to service users wishing to attend conferences. Professional groups see complaint handling as ‘risk analysis’, when to the public every incident is of vital importance and every incident deserves full investigation. http://phsothetruestory.com/2015/07/25/when-complaint-handling-becomes-risk-analysis-it-has-missed-the-point/

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  2. T gates

    Great read!!! I too lost my beautiful 1st born baby, he was 4 days old when he grew his wings…
    His 9th birthday is tomorrow, still so over come with huge sadness.. Haven’t been able to find peace with why we were left down so badly by those who were there to help… Huge failings and the tragic outcome could of been avoided so many times…
    It hasn’t got easier, it’s just different now with another two boys keeping us busy but hand on heart my 1st born is always in my thoughts, the photos we take… the memories I have with my living children are also filled with our other son not being here.. It’s tough, really tough knowing he should be here!!

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