After Averil died it took a little while to piece together what had happened. It was obvious in the beginning, as we rushed from A&E unit to A&E unit, that the hospitals that were meant to be looking after her didn't know what they were doing. They were unable to care effectively for Averil, missing several opportunities to save her life.
But the full extent of the tragedy only became clear in the weeks, months and years that followed.
At Averil's funeral I tried to convey to everyone the courage that Averil had shown. Leaving S3, moving away from her family, starting university... all the while suffering with Anorexia and being without the care that the NHS should have provided by the NHS that was failing her and that ultimately allowed her to get so weak that she couldn't even climb the stairs to her room.
It slowly became apparent that Averil had not received ANY care at all in the two weeks before she died.
Her trainee Care Co-ordinator had simply gone on holiday and no effective cover had been arranged. The lead clinician of the community care unit (NCEDS), had not even seen fit to take appropriate action when Averil's family called to let her know that Averil was seriously ill and that she required urgent care.
They simply left Averil to die.
There was no communication between the Norfolk Community Eating Disorder unit and the GP surgery on the University of East Anglia campus and the doctors simply told Averil that they "would see her in a month", by which time Averil had died.
SO WHAT DOES NHS FAILURE look like ?
NHS failure looks like a young girl dying of treatable illness due to their lack of care.
It looks like chaos, well paid clinicians doing nothing to save a young person’s life and then covering up the mess to retain their jobs and their reputation.
It looks like the lead clinician at NCEDS, deleting emails and holding back Averil's medical records from her family for nearly two years whilst emailing others to try and prevent Averil's anonymous case study being published.
It looks like the author of MARSIPAN Guidelines for the management of really sick patients with anorexia nervosa, caving in to external pressure and removing Averil's case study from the latest edition of MARSIPAN in order to "protect the reputation' of the NHS trust involved.
It looks like the lead consultant at Addenbrooke’s telling Averil's family not to tie themselves up in knots wondering "why" Averil died, knowing all along that his mix up with the Junior Doctor in the middle of the night had caused Averil to become hypoglycaemic and suffer a heart attack.
It looks like five officials dealing with Averil's investigation at the NHS Ombudsman resigning one after the other and producing poor quality reports that do not reveal the true NHS mess that allowed Averil to die.
It looks like the Ombudsman telling us that they believe that clinicians are lying in Averil's case but refusing to investigate the cover up that occurred.
And sadly it looks the NHS’ lack of concern for the safety of their patients in the future....... Parents continue to contact us to tell us they are experiencing terrible care for their loved ones, many of which are in a similar situation to Averil, even after all that has happened.