After 1046 days of investigation by the Public and Health Service Ombudsman into Averil's death which has involved the resignation of five investigators and multiple failed draft reports we have been given just a few days to highlight the failings of the current draft which contains 871 sections. Many of these sections contain serious factual errors and do not reflect the truth about what happened to Averil or the cover up by the clinicians and NHS trusts after Averil's death.
Put simply Averil starved to death.
Averil's death was caused by the negligence of the Norfolk Community Eating Disorder Service, with the only clinician looking after Averil (who was a trainee with no experience of eating disorders) going on holiday without cover ..... leaving Averil to die.
Open message to Rob Behrens the Ombudsman.
When we spoke on the phone recently I don't think I had a real chance to truly convey to you my sense of the opportunity that lies before us right now.
This is an opportunity to make a difference to many patients that currently need help.
I have dedicated the past four and half years since Averil died to ensuring that the truth about the care that she received is known and that it is out there for all to see, so that things improve for others. It would have been only too easy for me to leave Averil's funeral and feel that nothing could bring her back. That I should start grieving for her right there and then.
Instead I have put my grief and my life on hold.
When Mark Taylor of the NNCCG told me that Averil's care was 'satisfactory', as did Aidan Thomas CE of CPFT, Anna Dougdale CE of NNUH, Keith McNeal CE of Addenbrooke's and Dr. Edwards of the UEAMC as well as those from NHS England, I simply could not accept their word that Averil's had been cared for properly.
This was because I knew with total certainty, that the lack of NHS care had totally failed a wonderful person and caused Averil's death.
Averil helped so many people when she was alive. She was courageous in fighting her illness and even in her darkest moments she gave optimism to others and helped them to live. I simply could not just leave Averil's coffin without picking up the banner of that courage and start fighting for those in a similar situation.
After two years of fighting for the truth, It would have then been easy when the investigators at the PHSO, firstly Alessandro Pulzone and then Russsel Barr and later Sarah Fox told me that Averil's death was a result of hospital negligence. I could have said that I had done enough because we had made "a little progress".
But I knew that Averil was failed where she lived, not just where she died. She was a vulnerable young person and was failed at University, by those appointed to carry out her care plan.
At this point I took a deep breath and with those that have helped me, we continued to fight to ensure that the Ombudsman's report was a true reflection of what had happened.
To this end we continued to provide evidence and work to show the Ombudsman exactly where the failures had occurred.
So here we are, after four and a half years of meetings, emails, travel to all corners of the UK. We have spoken to those involved with Averil at University, those who are specialists in the care of AN patients, charities, the scientific community and also to bereaved families and those whose daughters and sons are still being failed and may die in the months to come. This knowledge has given us incredible resources to fight for the truth and for improved care.
Fortunately, I have been blessed not only by Averil's courage, but also by the help and fortitude of some amazing people who are working behind the scenes on every aspect of Averil's case.
Those that have helped me include Averil's mother Miranda, who has worked in medical publishing all her life for the Lancet, Pulse and Medicine International. My sister Cleo who is a senior consultant Psychiatrist, her husband Bernie who has spent his life in Medicines Sans Frontieres and working as a GP with specialism in patient safety. Three interns, Henry Cooksey, Kate Vango and Rob Chinnery with legal and medical backgrounds. Behind the scenes we have been helped by whistleblowers who know Addenbrookes and CPFT from within. Last, but not least, we have been helped by Katherine Murphy, who has stood shoulder to shoulder with us at every single meeting ensuring that Averil's tragedy is not lost in the corridors of NHS bearocracy.
Since Averil died, all of these individuals have given their utmost to help and continue to do so on a daily basis. Together we have a knowledge base of the illness as well as the care that Averil received which amounts to more than ten years of work.
Sadly this has not been matched by PHSO, whose work on Averil's case has often been sporadic and ill informed by poor investigative techniques. Sadly the "dedicated" investigator(s) and resources we were promised at the first meeting have never materialised in any meaningful way.
So maybe Rob you can start to understand that when I got your message to say that you were personally going to take charge of the inquiry into Averil's death, that I felt a huge sense of relief and hope.
The "Hope" was that you would want everything in the report to be a true reflection of what happened to Averil. Not just relying on a few worthwhile recommendations to paper over the cracks of a poor investigation, but a robust report that does not shy away from showing exactly what happened to Averil and the cover-up by CPFT and others.
The NHS trusts involved have continued, even to the present day, to spend money on legal fees in protecting their reputation whilst still claiming that Averil's care was satisfactory. Sadly they have spent little time or resources to investigate thoroughly what happened or to make the changes that are required to improve patient safety. We estimate that the combined spend on defence of the indefensible has cost the NHS over half a million pounds so far. In the meantime the PHSO shy away from looking back to see where their own investigation failed in the early stages, seemingly hanging on to the idea that expert opinions that were based on poor evidence are still valid.
Please therefore take a moment to understand where we are and what we still have to do.
I feel that we are close to generating a worthwhile report, but that we must pull together to make it across that thin line which will allow the whole truth to be published bravely with the courage that Averil possessed.
It is nearly time for me to start grieving for my wonderful daughter Averil, but before I do so, we need to do more work to create a report that truly reflects the circumstances behind Averil's untimely death.