Parents need to know two things when a child dies in order to begin to process the tragedy that has unfolded. What did my child die of, and why did they die of it?
Many parents have to wait months for the results of the Post Mortem to tell them 'what', was the medical cause of their child's death.
But, even more important is the 'why?'
In order to find out, 100% openness, honesty and a willingness to engage with families is required from the health professionals involved in the child's care. It is not enough to look at the medical cause in isolation, investigation into what else has contributed to the unexpected outcome is also needed.
Any errors on the part of the healthcare providers need not only to be identified, but to be considered as to the impact they had on the outcome for the child. This information needs to be shared fully, so that parents feel nothing is being kept from them, and so that lessons can be learned to prevent any repeat of the error.
Parents know, in 99.99% of cases, that nobody involved in their child's care would have wanted to do anything but their best, and that mistakes are unintentional. Most parents set about informing the hospital of the mistakes they believe were made, expecting their concerns to be properly looked at, errors identified, appropriate apologies made, and lessons learned.
In the time that has passed since Jasmine died, we have spoken to countless parents, who, like us, after the death of their child, wanted openess, honesty, to have their concerns heard and dealt with appropriately, to be told the whole truth about the circumstances leading up to the death of their child, and to have sincere apologies and a promise all possible measures would be taken to ensure the same tragedy could not reoccur.
Very sadly, few of them have been able to get what they need without a lengthy, distressing ‘battle’ that lasts many years.
These parents suffer immeasurable extra emotional pain and suffering; caused not by the unintentional act of making a mistake, but the absolutely conscious decision of those tasked with providing information about any mistakes not to give the family the whole truth, or to genuinely engage with the family as part of the investigation process.
This, despite every hospital in the country having a “being open” policy, many having ‘being open’ as a core value, and all claiming that they are open and honest with patients and their families when things go wrong.
Hours, days, weeks, months, often years of the family's time is devoted to searching for answers to questions that just aren’t forthcoming from those they should be able to trust. This extra stress and strain on their health, their personal lives, and their professional lives often takes its toll.
This is cruel, unfair and unjustifiable.
As Sir Liam Donaldson, Chief Medical Officer for the Department of Health 1998-2010, said "to err is human; to cover up is unforgivable; and to fail to learn is inexcusable."