I wanted to know how my baby died. Instead, I got dishonesty and hostility

In November 2008 my nine-day-old son, Joshua, died in truly terrible circumstances, as a consequence of failures in his care at Furness general hospital, part of the University Hospitals of Morecambe Bay NHS foundation trust. Joshua’s death instantly turned my life upside down. But as I began to seek answers as to what exactly happened and why, nothing could have prepared me for the years of dishonesty, obfuscation and, at times, outright hostility that followed.

Critical records of Joshua’s care went missing, statements from staff were dishonest, investigations were superficial, the organisations that should have been taking action to ensure the maternity services at Morecambe Bay were safe instead acted to reassure each other that everything was OK.

In March 2015 an independent investigation, chaired by Dr Bill Kirkup, was published. The report found that there was a “lethal mix” of failures at the maternity unit where Joshua was born. The first opportunity the trust had to identify that things were starting to go badly wrong was the tragic death of a baby girl in 2004, yet this was effectively covered up. The family weren’t told the truth, and unsafe care at the unit continued. Between 2004 and 2013, 11 babies and one mother died avoidably.

Throughout this period, the Nursing and Midwifery Council (NMC), the regulator responsible for protecting the public by ensuring nurses and midwifes practise safely, appeared to take little action. In relation to Joshua’s care, the last hearings only took place in 2017, some eight years after Joshua’s death. Yesterday, a long awaited report from the Professional Standards Authority (PSA) finally provided some answers as to why. The report makes difficult and sad reading for me [full report here].

The PSA describes concerns about the evidence it was able to obtain from the NMC to assist its review. We are told that the standard of record-keeping was “very poor”, and that information relevant to the review wasn’t included in the NMC’s case files. The report recounts in heartbreaking detail the experience of many Morecambe Bay families who contacted the NMC. A clear pattern emerges of an organisation placing little onus on what these families were saying, and in some cases simply dismissing people’s concerns with little or no consideration.

In April 2012, Cumbria police met the NMC to given them a detailed list of cases at Furness general hospital about which they had significant worries. But the NMC took no action “for almost two years”. While this was ongoing, midwives under investigation continued to practise, and in some cases were involved in subsequent serious incidents involving avoidable harm and death.

It would be unrealistic to expect any large and complex organisation to get everything right all of the time, but any organisation with such an important public protection role must be open and transparent when things go wrong, so that the organisation can learn and improve and maintain public confidence and trust.

But the report highlights the continued failure of the NMC to be open, honest and transparent about its own actions, pointing to its misleading responses to families and the secretary of state, its failure to disclose external reports looking at learning from cases, and its failure to be open and transparent with information requests.

These are damning conclusions, and highlight an urgent need for change in the leadership and culture of the organisation.

But the response from the NMC this week can only be described as woefully inadequate. On Monday, Jackie Smith, the chief executive, announced her resignation but in doing so made no mention of the problems highlighted by the report, and instead spoke of her pride in all that the NMC had achieved. On Wednesday, the NMC did not put forward a single person to respond to media interview requests. There were, however, dozens of retweeted positive messages about the former chief executive on her own Twitter feed.

In addition, along with other families, I have received an impersonal and hollow letter from the NMC, along with some emails that the NMC should have disclosed to me following a personal data request from me (which they spent £240,000 responding to), but didn’t. One of the emails was between two NMC staff discussing visiting me in Cumbria in 2016 to take a statement about Joshua’s death. Upon seeing my surname the first person writes: “Is it wrong that my default position was to snigger at that name?”; “It’s not wrong it’s totally appropriate,” came the response.

These comments are puerile and silly, but also indicative of an organisational culture that has lost sight of its purpose, and the patients, mothers and babies it exists to protect.

The culture of an organisation stems from the action and behaviour of the people at the top. The response from the NMC so far, highlights an urgent and pressing need for change so it can properly do its job of protecting patients.