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. 

News from the NMC

The years since Joshua’s death have been a bit ‘up and down’ to say the least. The early years were without doubt the hardest of my life, but in recent years I’ve been able make sense of what happened in a way that has bought some meaning to Joshua’s life and some small sense of closure. The last few months especially I have actually felt a sense of peace and hope that I haven’t had since before Joshua died in November 2008. I remain optimistic about the direction of change and believe that there has never before been a time when so much focus and good work in the area of patient safety has been happening.

There have been some notable exceptions to this general feeling of positivity. The current situation with the Parliamentary and Health Service Ombudsman remains completely unacceptable and has been a source of great frustration. 

However, this weekend a letter arrived through my door which really made my heart sink and bought back a sense of sadness that I haven’t felt in a long time.

When the Kirkup report published in March this year, the first ‘national level’ recommendation was as follows.

“In light of the evidence we have heard during the investigation, we consider that the professional regulatory bodies should review the findings of this report in detail with a view to investigating further conduct of the registrants involved in the care of patients during the time period of this investigation.”

There are good reasons for this recommendation. The Kirkup report raised some serious issues relating to the conduct of individuals involved in events at the trust. It is vital that proper hearings are undertaken which allow the evidence to be heard. These events are associated with preventable deaths of mothers and babies and it must be in everyone’s interests to allow a proper, open and fair process to be carried out as soon as possible.

The letter I received was from the Nursing and Midwifery Council (NMC) and provided an update on the progress of the NMC investigations relating to 5 midwives involved in events associated with Joshua’s death.

The letter advised that the legal defence acting for the midwives have ‘…indicated to the NMC that they are likely to make legal applications which, if successful could substantially affect the progress of all of the cases.’ In other words, the legal team acting for the midwives are doing their utmost to further delay these hearings or prevent them from proceeding altogether. 

When I read the letter I was reminded of when I first I learned that the legal defence team acting for the midwives involved in Joshua’s death advised them not to cooperate with the Police investigation (the Kirkup report confirms that the majority of staff interviewed by the Police invoked their right to remain silent). I was also reminded that before giving evidence to the Coroner at Joshua’s inquest, ‘model answers’ were distributed to midwives in a process that the trust themselves now accept ‘…went beyond what was proper’. At Joshua’s inquest, the Coroner stated that he believed that the midwives had ‘collaborated’ over key evidence.

During the police investigation, the Royal College of Midwives (RCM) confirmed that they were representing midwives involved in the investigation. I wanted to know whether the RCM were involved in the latest legal attempts to delay or prevent a proper process relating to Joshua’s death from going ahead. In response to my questions relating to this, the RCM have said:

“RCM members have a right to representation and a fair hearing at the NMC. Without such representation in hearings, which could result, potentially in their being bared from their profession and career, there is the potential for injustice. The RCM, as a professional body and trade union, does provide such support to its members.”

I’ve been reflecting on what ethical responsibility organisations that commission legal services should also have towards families affected by avoidable tragedies and the injustice caused to such people by constant attempts to obfuscate processes designed to establish truthful answers and ensure appropriate accountability?

When the PHSO report in to the Local Supervisory System regarding Joshua’s death was first published, I recall the RCM saying in a TV interview that ‘…we mustn’t throw the baby out with the bath water’. The RCM response has been defensive and quite painful to watch unfold. In reality, it should never have taken complaints from bereaved parents to force such changes. Shouldn’t an effective professional body have recognised the need for change and acted much sooner? 

My other great frustration is with the RCM’s ‘normal birth’ campaign. I have long thought that such a blunt tool was an inappropriate way of trying to address a complex set of issues. There is no doubt in my mind that the agenda set at national level by the RCM’s campaign heavily contributed towards the thinking and ethos of the midwives at Morecambe Bay. I remain concerned that although the name of the campaign has now changed, the RCM still champion a top down and blunt national campaign which promotes ‘normality’. In my view, this risks encouraging the same sort of approach that led to the tragedies at Morecambe Bay

In this context, the response from the RCM to the Kirkup report has also been frustrating at times. For example, this comment from Lesley Page.

“The press has picked up on the report’s emphasis on “the ethos of normal or natural birth ‘at all costs’ at the unit which resulted in inappropriate and unsafe care” (Kirkup, 2015, p. 13, 1.4.) I searched carefully to find out what was the basis of this emphasis but couldn’t find much.”

Myself and other families who lost loved ones as a consequence of what happened at Morecambe Bay find this comment unacceptable. Perhaps the RCM will take up the offers below and meet some of the families affected by what happened so they can better understand the clinical situations?

   

   
 All this leads me to the  view that the RCM themselves are a major problem. It seems to me that it is the trade union / medical defence role of the RCM, not their professional body role that has shaped the RCM’s response to events at Morecambe Bay.  

In my view, 2 clear questions come to mind.

 1) Is it time that the professional body role of the RCM was separated from the trade union / medical defence role?

2) Is it time that we had an ethical code of conduct for organisations that commission legal services relating to the NHS, where the impact on families who have suffered avoidable loss and overall public interest has to be properly considered?