Investigation and inquest
On various dates in 2014, I commenced investigations into the deaths of Sophie Ryan-Palmer, Katie Joyce, Ryan Loughran and Muhanna Alhayany, four children who had died in 2013 following treatment at the National Hospital for Sick Children at Great Ormond Street in London. The investigation concluded at the end of the inquest earlier today. I made a narrative determination, which I attach.
Circumstances of the death
As you will see from the narrative, all the children were treated with stem cell transplants, but it later appeared that there might be an issue with the cryopreservation of the stem cells.
Identifying the fact that there was any problem at all, still less the nature of that problem, was not straightforward. Those treating the children and then investigating potential causes of their failure to recover, were significantly hampered by the fact that they had no means of benchmarking autologous stem cell engraftment.
This put these children at a significant disadvantage and is likely to do the same for some other children with cancer, not just at GOSH but all over the country.
Coroner’s concerns
1. I heard at inquest that there is concern within the medical community over the whole governance structure for autologous stem cell transplant in this country, most especially regarding the lack of any one appropriate control risk group with a national lead.
2. I also heard that there is at present no disease specific national benchmarking available for autologous stem cell engraftment. The relevant results of an international SIOPEN trial (that aspect of which closed in 2011) have not been made publicly available.
Those treating children following autologous bone marrow transplant, do not know how many days to recovery is normal, so they do not know what is abnormal, and whether the results in their own hospital fall below the results elsewhere.
The failure to unlock the results of the SIOPEN trial could, therefore, compromise the optimal care of some children with cancer.