When the cleaner knows more about the health of a dying patient than NHS consultants ....

Averil died in the ten weeks after she started at the University of East Anglia, studying the subject that she loved and had fought to study.

Two weeks before Averil, died I called Addenbrooke's to say that Averil's health had deteriorated and was worse than when she was admitted previously as an inpatient and that she was very seriously ill.  

We were promised action, but tragically no appropriate action was taken.

Averil lived in a university flat and her flat mates were very concerned about her deteriorating health and those around her could see that she was dangerously ill. Even her  Aunty in New Zealand 12000 miles away, called me to say that she was worried about Averil after reading Averil's emails.

The Norfolk Community Eating Disorder Service did not monitor Averil's health and nor did the University of East Anglia Medical Centre and her health slipped away in front of those that loved and cared for Averil whilst the medical "professionals" did nothing.

Even though their headquarters were only four miles away from the hospital where Averil eventually arrived by emergency 999 call, NCEDS and UEAMC did not visit for 48 hours because it was the weekend and they say "they were not contracted .... to do so".

In my opinion to say that Carol, Averil's cleaner at her university flat knew more about Averil's health than Dr. Jane Shapleske, the lead NHS Consultant of NCEDS is no exageration.

Carol also did more to save Averil's life than the NHS consultants that were supposed to be looking after Averil.

Carol called for emergency medical help on two separate occassions and told me later that she and friends had become increasingly concerned about Averil's welfare and welbing as the term continued. 

Unbelievably the NHS is still in denial and continues to say that Averil's care was "appropriate" and "satisfactory".

NHS Censorship

When a loved one dies in tragic circumstances whilst in the care of an NHS specialist team, it seems natural to want to know the reasons why, ask questions and also consider if others are still at risk.

Part of this process is to find the facts, look into what actually happened and read through the medical records. 

Over 18 months ago, I asked for Averil's complete medical records. I was told that they would be forthcoming under the "Access to Health Records Act, 1990". After a lot of chasing around, I was finally given a brief set of medical records which contained numerous gaps in Averil's care.

These gaps in Averil's records were crucial to our complaint and to finding out the truth behind Averil's death.

After a lot of investigation, it appears that the lead clinician Dr. Jane Shapleske and head of the CPFT / NCEDS team looking after Averil had been responsible for censoring the medical records, removing many important documents from those that we were given.

How is it that the team responsible for Averil's death can be given the task of deciding what documents Averil's family can be allowed to see ... hiding the truth for as long as possible ?

Sadly, it seems as if those clinicians under the spotlight in a review can just censor medical records with no fear of disciplinary action of any sort, even if it leads to increased risk for future patients as well as untold stress for the family of the deceased.

Nineteen months after Averil's death we have now been promised by the lead clinician at CPFT that we will be given the complete set of medical records relating to Averil's care ...... but we are still waiting and can only wonder at how many of the records will still be there ?

Is it any wonder that trust in the NHS complaints process is in tatters for so many people, it seems as if the only way to improve things for the future is to expose these underhand practices in order to get reforms and make change.

Why did they not listen ?

In early December 2011, when Averil was an inpatient at Addenbrooke's ward S3, Averil's family were invited to attend a series of family days at Douglas House in Cambridge.

These family days were held with Dr. Sarah Beglin and Madeline Tatham, key members of the care teams that failed Averil when she so badly needed help.

Two of the families attending shared graphically their concerns that their daughters had experienced "near misses" after leaving hospital and when living in the community, and as a consequence these patients had ended up in acute wards and a very poor mental and physical condition as a result of the lack of care.

To say that this was just a general discussion on "care in the community" would be untrue.

This discussion was central to one of the daily sessions and was extremely emotional for the families and patients involved. As such I would have hoped, as we all did, that NCEDS and S3 would have taken notice of these sad events, the lack of care and the risks involved when young vulnerable patients are left without support in the community.

These concerns were met with little understanding by SB and MT and they told all at the family day that "a new regime" was now in place and all would be well.

This "new regime" sadly was the one that we experienced with terrible consequences.

Little did we appreciate at the time on that cold December day that these concerns were so very real and that they would would result in Averil's death.

Little did we understand on that cold day, that the new team at NCEDS would be so disorganised and incapable of looking after high risk patients in the community that they would allow a young person to die alone at University without help.

I hope that those involved in the "coffee mornings and family days" will now find time to reflect on the real world and the very real care that young patients need .....

...... especially when these young patients are alone in the world and their lives are hanging in the balance.

GMC Complaints - help please

IN the last few weeks we have learned a great deal about what went wrong in Averil's care and the failings of the medical teams that were responsible for Averil's death.

We are in the process of putting together all of this information in order to make specific complaints to the GMC about the neglect and negligence that occurred. 

We wish to make this complaint as effective as we can, so that other patients won't have to suffer the same fate as Averil and so that the care at CPFT and NCEDS is improved.

If you can help us in any way to make our complaint as effective as possible (maybe you have had a bad experience with Cambridge and Peterborough Foundation Trust or Norfolk Community Easting Disorder Service or you have made a GMC complaint before)  - please let us know and get in touch via the contact us page.

Many thanks for your help and support.

Nic  15/08/2014

UPDATE :

Thanks to all who have offered help, please keep sending in your experiences about NCEDS, CPFT and UEAMC and of making an effective complaint to the GMC. 

Remembering Averil ..

Everyday starts with thoughts of Averil. It just works that way, before my eyes are even open. There she is.

Since Averil died I worry that maybe I won't be able to keep my memories of Averil fresh and close to me as the years roll on - I just hope that Averil will always be there to help me as my memory fades. 

She once wrote about a flight we had, "... Dad fly safe, I will always be there with you handing out the fizzies and choosing the tunes" .

Thinking of that flight together, I sometimes feel like I could just let my atoms float through the clouds and into the universe to be with Averil.  If only it were that simple.

Today has been special, full of Averilshine.

Averil's web site has brought contact with her friends from Addenbrooke's and at University .... and they have sent messages of their friendship and love for Averil as well as their own stories. Thank you for these messages, they mean the world.

Thank you too, for the love of Averil's wonderful sisters who show incredible strength in their lives and smile when their hearts are breaking. It can take great courage to be happy.

Nic 14/08/2014

Averil's death ... "Missing" Medical records

Under the 1990 Act regarding access to medical records, we have a right to see Averil's medical records after she died.

These records are important in order to help us find out what went wrong in Averil's care, which was provided by the Cambridge and Peterborugh Foundation Trust (CPFT) and Nofolk Community Eating Disorder Service (NCEDS).

The records that we eventually received in 2013 were only a minor part of Averil's medical history and many of the notes that we expected to find were missing. 

Little by little .... it has become apparent that we have been given a highly edited set of medical records. 

.... and it should come as no surprise that these records were censored by Dr. Jane Shapleske, none other than the head of the service that we beleive was resposible for Averil's death.

A definite conflict of interests after the death of a patient.

We are still working hard to get access to the full set of Averil's medical records (if they still exist ? ) ... and this is just one of the challenges that patients and loved ones face in trying to find the truth when things go wrong within the NHS.

Nic 12/0/2014

Averil's death ..... A minute's silence

Its getting late and nearly dark and I am driving up towards Scotland to see my sisters after another meeting with the NHS. The traffic has stopped, brake lights reflected in the torrential summer downpour that has the traffic at a standstill.

Lightning flashes from skyline to skyline, it's seems like daylight once more, and a few seconds later, thunder crashes down and the silence is broken. 

Its been another tiring day, and another day with very little progress towards the truth.

Averil didn't have to die ....

She only needed help from the clinicians that were supposed to be looking after her, but to get an admission of negligence or lack of care in the current NHS climate seems a distant hope.

Averil fought bravely to keep her illness at bay, and her sisters and mother and I have fought to find the truth for eighteen months since Averil's death.  

I asked the NHS at today's meeting for "bravery". Bravery to speak out and to find out what went wrong in Averil's care.

The flash of lightning in the moment of asking was there for all to see.

but The Thunder never came and the energy of the question just hung in the room flickering.

There was just Silence.

Nobody spoke. 

It seemed like that the lack of response was just like a minutes silence for Averil.

.... but it was also an empty minute of silence for the NHS. 

A minutes silence for the death of honesty and integrity amongst the clinicians and managers that have hidden the truth about Averil's death. 

A minutes silence for all those suffering from AN and ED's who will not get to know what went wrong and therefore may never see the badly needed improvements in the NHS that they deserve. 

Maybe it was a minutes silence for me too, to help me to think about all of my three daughters and how much they mean to me and how much I love them.

Nic 08/08/2014

Averil's death ........ The Big Picture

The days roll by trying to get answers and accountability from our NHS health service.

Sadly no one involved seems to care enough about Averil's death and the mistakes that were made to be able to say .... we (the NHS) failed in our duty of care to a young person who was our responsibility and who needed our help to stay alive.

It seems that society is able to make the big gestures.

We can launch a helicopter to save yachtsman in the middle of the atlantic or southern ocean, we can raise millions to save an endangered species ... but when it comes to providing a qualified and experienced clinician to look after a high risk, vulnerable young individual just once a week - We FAIL.

And when there is failure as in the case of the NHS looking after Averil at university, there is no one in this monolithic structure that is accountable, no one who says we must learn, we must never let this happen again to a young person or an AN sufferer.

Instead there is denial, even when the evidence is crystal clear and there is a presumption by the NHS that everything will be resolved by a legal department somewhere and that some money will be paid to smooth things over. 

This isnt right now and it will never be right. 

Society needs to understand that it exists partly to protect those members that need help when they are in dire need; not just when they are at sea in the middle of the Southern Ocean, but also when they are "in peril" just 4 miles from the head office of a medical "service" in Norwich which is supposed to be looking after a young vulnerable patient.

Nic 06/08/2014

Courage ..

Looking for the Averilshine today :)

Lost places ..... hold us together

Nic 02/08/2014

The Contract ...

When a young patient is finally alone in the world after ten months in hospital there is a care plan.

A moral contract of sorts.

This contract is one between the health team and the young Anorexic sufferer and their family. It provides for the safety of the patient as they move on in their life and try to live alone, still at risk and still vulnerable.

When the health team does not provide safety and does not provide basic health care - then the health team have broken this basic contract.

When this leads to the death of a patient the contract is left in shreds and so too the lives of the family and friends left behind.

Nic 31/07/2014

Empty Words ..

When I first met with NNCCG over a year ago (the commissioners of the comunity care team that looked after Averil), they were keen that any lessons learned from Averil's tragedy would help them to implement change and protect other AN sufferers arriving at hospital acute wards.

We discussed how I would be involved in meeting with clinicians to explain what went wrong with Averil's care and how implementation of MARSIPAN would enable safe gaurds to be put in place to protect AN sufferers. 

Like many promises made along the way over the past 18 months the NHS haven't even implemented this simple action plan.

At a further meeting with the chief executive at CPFT I was promised an "independent external review" of Averil's case and this offer was made in writing. This has never happened. 

More empty words ...

Averil's diaries and her last days ....

Imagine the heartache of reading the diaries written by your dying daughter.

Averil kept daily diaries throughout her fight with Anorexia and in all there are eight volumes from the time she was admitted to Addenbrooke's hospital in 2011 until she became unconscious in December 2012 in the acute ward.

Averil's last diary is written about her fight to stay alive and stay at University. Her words are heart breaking and give a clear insight into the lack of care she received and her terrible struggle.

Averil's dad 30/07/2014

How does the NHS hide the truth from relatives when things go wrong and a patient dies ..... ?

The strategy seems clear and the Chief Executives of the NHS trusts are masterly at dealing with complaints and the consequences of NHS failures.

The NHS strategy from my perspective seems to be a simple one .... and seems to be followed to the letter by the NHS trusts I am dealing with ..... From what I have seen and my own personal experiences, here is how it appears to work :

Firstly - sympathise with the patients relatives, tell them that "no stone will be left unturned to get to the truth", gain their trust, so that the family actually believes that the NHS management cares about your loss and that your grief is important to them.

Secondly - get the NHS legal team on the case and put in a front person from Corporate Affairs to deal with the family, so that they can assess what information the family has about what went wrong and what failures and negliegence may have occurred.  Information here is the key, and it could be said that the less information the family has ... the less the NHS trust has to worry about litigation or serious complaints.

Thirdly - slow everything to a snails pace and stonewall in the case of difficult questions . The family have to find time in their busy lives to fight for each shred of information whilst the NHS legal team appear take their time.

Fourthly - Rely on the fact that many families will have limited resources and time to press for the truth and innevitably in many cases their quest and therefore their complaint burns out in the sheer exhaustion of the task in dealing with the NHS.

Fifthly - In dealing with difficult cases where the family press for information and will not give up, then procure a report from an author who may well be known to the consultants concerned. The remit and the questions for the report will be set by the CCG's own legal team and establish a remit that may well avoid touching on the basic errors that occurred. In this way the commissioned report may well ommit significant elements. The possibilities therefore are surely that the report will be sypathetic to the NHS as opposed to the patient and family.

Finally - when all else fails and the family are still not going away to leave the NHS boardrooms in  peace, it may be suggested to the family that there is always the legal option. This effectively means that the NHS trust are just able to pay their way out of trouble and avoid unwanted publicity.

In frustration at the lack of progress, this is the stage when many families call on legal help to try and get to the truth. 

This gambit by the NHS for the family to take the legal route, allows the organisation to offer "a no fault payout",  which in the case of a young person with no dependents is often totally insignificant.

Furthermore if the family refuses this "payout" and wish to proceed to court in order to establish the truth, the family could face ruin with the cost of the legal expenses involved. 

.............. Is it any wonder then, that families who are grieving don't wish to tackle NHS bosses and the NHS legal machine that sits behind them ?

The Truth, facts only please ...

After a day of reading the "review" put forward in the latest report commissioned by an NHS organisation, which appears so badly constructed as to be a breach of medical ethics in my opinion - we have decided to put up a new section on Averil's web site that will publish a list of irrefutable facts about Averil's care; simply put it will be a section for the "Truth".

The Truth will shine through, just as Averil's smile could brighten your day, it will be there for all to see.

29/7/2014

"Internal report into Averil's care comes out" with not so subtle suggestion to keep it "quiet"

SO .... at long last we have been sent a review of Averil's care by a doctor, which has been created without our involvement and with the questions raised by NNCCG's own legal team. 

How on earth is that supposed to be independent ?

The covering letter from NNCCG predictably suggests that Averil's care was satisfactory. 

But as Averil's sister Zoe perceptively emailed me straight away ...

 "... if any of the standards of care that [the doctor] assessed in this report and considered to be "satisfactory" were indeed "satisfactory" then she wouldn't be doing a report in the first place ! (and Averil would be alive today).

Averil died because of the negligence and lack of care by NCEDS and UEAMC and the report only makes the cover up seem worse and disrespectful to Averil's memory.

How can NHS organisations that have failed in their duty of care to a 19 year old vulnerable high risk patient ever improve their services if they do not recognise their failures. 

I really do have concerns that after the death of Charlotte Robinson and Averil, that other patients are still at risk and will continue to be at risk.

Nic 28/07/2014

Freedom of Information .. not so far !

Another day of Darkness and Light.

Darkness

When I asked for Averil's medical notes after she died, there was a long period of silence from the NHS. Eventually I was told that the notes would require "sorting out" in order to "protect" Averil and those reading the notes. 

Eventually I received an abreviated medical file that was "filtered" by the team that were looking after Averil. 

The medical file that I was given contained some, but not all of the information that we required in order to file a complaint and certainly there are big gaps in the records, (this was also highlighted by the Serious Incident Report).

So now we are working to get Averil's COMPLETE medical records so that we can establish what went wrong. This eighteen months after Averil died.

Naturally I am concerned that these records maybe "lost" before we can eventually see them. 

Light

More wonderful comments, feedback and thoughts for Averil from all over the world via the web site, Twitter and facebook with offers of help in our quest to find the truth ....... The first step in the long road to help others and also grieve for Averil.

Update on "When a Review is not a Review"

Another day of chasing NNCCG to get a copy of their "review" of Averil's case by Dr. Vize. Several phone calls to try and find out why the promised report has been delayed.

Finally a call back from Diane Collier, head of "Corporate Affairs" at NNCCG. In other words their legal team front person. The message for us was that the "review" had not been "reviewed" by NNCCG and therefore could not be released to us.

I suppose it is hardly surprising since the questions and remit were put together by NNCCG legal team, it would be unlikely that they would hand over this document without trying to evaluate its impact and check that it was what they had hoped for and expected.

The questions for the "review" are shown here in a copy of the document to Dr. Vize and as anyone can see straight away, the remit doesn't even ask the basic question that any lay person would ask.

For instance "Who actually looked after Averil in the ten weeks at University ? (during which time her health deteriorated so much that she was unable to even walk up the stairs to her flat) .... what experience of Anorexia did that person have ? and what qualifications to look after a High Risk patient ?"

It seems that by not asking basic sensible questions and setting a proper remit, NNCCG hope to once again cover up the truth. The Patients Association always propose that any inquiry or review has the patient and family at its centre.

How can we hope to protect young Anorexic patients in the NHS care when these legalistic games are being played out by "corporate affairs" officials?

It's time to get real and see that an external inquiry should be held, perhaps then we can start to protect sufferers of AN from the tragedy that happened to Averil and at last gain some confidence in the NHS complaints system.

"To Those Responsible for the Death of Averil Hart"

To Aidan Thomas chief Executive at CPFT, Mark Taylor the chief executive at NNCCG and Dr. Suzanne Edmonds at the University of East Anglia medical centre ...

You may wish to bury us in red tape and draw Averil's case out as long as possible; but we will not go away until the truth is heard. We require a full and proper external inquiry, with both Averil's family and the Patients Association at its heart, to establish the terms of reference and remit.

The fact is :

Averil died from a treatable illness simply because of the lack of care provided by the NCEDS team and the UEA Medical centre.

If they had done their job properly then Averil would still be alive today.

Averil's death was entirely preventable by proper care and early intervention and this is well known by all involved.

Even Averil's cleaner at University did more to save Averil's life than the NCEDS team headed by Dr. Jane Shapleske who couldn't even attend Averil in the hours after she was rushed to hospital by ambulance.

So to those members of NCEDS and UEA medical centre I would just simply like to say...

"I hope you never have to lie at the bedside of your son or daughter, as they die a long and terrible death due to the lack of care of a medical team."

"I hope that you never have to live with the truth that a medical team were so disorganised, under funded and poorly run that your son or daughter died a tragic and terrible death as a consequence of a catalogue of NHS failings."

"I hope that you never have to put your faith and trust into a medical organisation to look after a loved one, only to be let down by a complete lack of care, compassion and ability to provide appropriate medical care which results in their death."

"I hope that you never have to try find the truth from an NHS organisation that is so ingrained in trying to protect itself that it will go to any lengths to hide the truth of what happened."

"God rest your soul my darling Averil, please forgive me for not protecting you from those that did not and do not care, but yet call themselves "medical professionals"."

My fight to expose the truth will go on and I hope the conscience of at least one of those involved will allow them to blow the whistle on this terrible tragedy...  in hope that we can protect other young patients and expose the cover-up that continues in CPFT, NCEDS and the UEA Medical centre.

There are now many good people who wish to help Averil's family and friends and on the advice and in conjunction with the Patients Association we will be pressing for an external inquiry into what happened.

Read about our experience here.

Nic Hart, Averil's Father

Averil's Aunty Runs in her Memory

Its been a tough weekend, with thoughts of Averil never far away.

Averil was very central to all of our lives and brought us so much joy to us. She was able to find something special in even the smallest of things in her day and spread that joy to all she knew.

Sunday started with a lovely text from my sister Zoe, Averil's aunt, who was running in "Race for Life" with her friend Mandy.

Zoe was wearing Averil's pink tutu and running in Averil's memory.

Thank you for making us smile :)