Family members of Sudiksha Thirumalesh, the Christian teenager who died while battling the NHS to continue life-sustaining treatment, have called for a public inquiry into how the service handles end-of-life cases.
Thirumalesh was the victim of a rare mitochondrial disorder and was dependent on a ventilator and dialysis.
Calls for an inquiry come the same week that a judge denied the parents of 8-month-old Indi Gregory, who has a similar condition, the right to treatment in Rome. She remains at an NHS Trust in Nottingham, under police watch.
At the time of the legal case, Thirumalesh was fully conscious and speaking. She had been fighting in the courts for permission to go to Canada for expiremental treatment when she died on 12 September aged 19.
The family have described how a gaggin order, preventing Thirmalesh from being fully named in public, had prevented them from fundraising effectivly for her treatment.
Her father, mother and brother voiced their appeals when meeting Lords and Commons Family and Child Protection Group (LCFCPG):
"If the NHS doesn't have capacity or expertise to provide specialist treatment they should communicate that clearly to families right at the beginning and allow for crowd funding automatically. The transparency order placed on us was cruel and prevented us from getting the help we needed," they said.
Andrea Williams, chief executive of the Christian Legal Centre, which has supported both families, called for greater transparency. "Sudiksha's profoundly disturbing case has demonstrated the urgent need for an overhaul into how critical care decisions are made in the NHS and the courts".
There is an urgent need for a more open and transparent system. Justice is done in the light and not behind closed doors," she said. "We are concerned about how many other patients and families have been through similar ordeals and have had to suffer in silence.
"This case should be a wake-up call for the government to set up an urgent public inquiry into the practices of the Court of Protection and the Family Division surrounding end-of-life cases after a series of upsetting cases."