A story of NHS failure.

Yesterday, I was told about this presentation, put together by Luca Cadrillo, which analyses Averil’s case from an academic perspective.

A story of Failed teamwork.

It is heartening to see that Averil’s tragedy is being used by others to learn, and to ensure future patients benefit from greater understanding of where care can go wrong. There is no shame in learning from mistakes.

Tomorrow, I am continuing to encourage such learning by meeting the All Party Parliamentary Group for Patient and Public Involvement in Health and Social Care. Alongside others with similar experiences, I will be explaining how the NHS trusts involved in Averil's care allowed her to die without the care that she so badly needed and how they have failed to learn from Averil's tragedy.

Hard reading ....

The ombudsman's initial summary arrived in the post over Christmas, it laid out the facts behind Averil's case and the negligence that took place.

Reading through the pages of the summary it seems clear to me that Cambridge and Peterborough Foundation Trust and the NCEDS service, together with the University of East Anglia Medical Servce simply left Averil to die at University without proper care.​

The cover up continues but slowly the truth is coming to the surface.​

Nic 05/01/2015​

Jeremy Hunt listens to us.

A good meeting in London with the Health Secretary Jeremy Hunt to let him know the facts behind Averil's case. There were several minutes silence at the meeting as top officials took notes and listened to the horror that resulted from NHS departments in chaos and the tragedy that ensued.

An opportunity to let Jeremy know exactly what happened in Averil's case and the negligence by NCEDS and UEAMC that resulted in the death of a vulnerable young girl.

An opportunity to tell him that the University of East Anglia Medical Centre and now Cambridge and Peterborogh Foundation Trust have refused to answer our questions.​

An opportunity also to tell him how the lead clinician from NCEDS kept medical records from us for 18 months​ and about the cover up that continues behind the scenes.

Another small step to get to the truth and hope that change will result for other sufferers of ED's.​

Jeremy Hunt now has a complete file on Averil's case.

Nic 23/12/2014​

The ombudsman investigates Averil's case

The long fight to reveal the truth behind Averil's tragedy is moving into new territory now.

The ombudsman has started work to look at our submission regarding the complete lack of care and negligence by NCEDS, CPFT and UEA medical centre.  They have promised substantial resources to look at why Averil's care by the NHS was so completely hopeless and also look in depth at the cover up that followed Averil's death.

Nic 23/12/2014

Averil's Birthday today.

A quiet day missing Averil and thinking of her Life and the joy that she brought to us all.

Christmas is not the same without her.

Nic 21/12/2014

A service of dedication

An emotional day at Norwich Cathedral organised by BEAT for those lives lost to Eating Disorders.

A candle lit for Averil. 

A wonderful choir and some very emotional readings, one by a father who had lost his daughter to AN.  A similar story to Averil's in many ways .

Neglect by the NHS of a young person being cared for in the community with a treatable illness and resulting in the tragic and unnecessary death of a wonderful young person, leaving her family with so much pain and suffering.

It was good to meet some of the families after the service and make contact with others who understood, who were suffering and who were calling for change.

Nic 22/10/2014

The Cover Up - continues behind the scenes.

At last more of Averil's medical records arrive and also information supplied under the freedom of information act, several hundred pages.

There is a vast volume to read through, much of it a disturbing chronology in Averil's care and much of it relates to the behind the scenes work at CPFT, Addenbrooke's, NCEDS and NNCCG to cover up the negligence that took place in Averil's care.  Amongst the lies and deception that goes on ("what shall we tell Mr. Hart" ... can we limit our exposure ... keep our defence unions involved .... problems with Averil's medical records .... dont let the CEO know the current situation .....), there are a "few good men" who know that the truth may hurt, but that it is the only way to move forward.

I only hope that at some stage these voices will be heard. 

In the long term, I am now confident that Averil's case will be in the public domain for all to see and that the cover up will be exposed. 

Nic 23/10/2014

Hope ...

Averil lived her life bringing sunshine and a zest for life to many each day ... tragically she died of a treatable illness let down by professionals we all trusted to care for her.

Averil sent us this email from hospital in early 2012. 

 Averil's email  reads .... "

Hope is the Thing with Feathers - Emily Dickinson 

Hope is the thing with feathers

That perches in the soul, 

And sings the tune without the words, 

And never stops at all. 

And sweetest in the gale is heard;

And sore must be the storm 

That could abash the little bird 

That kept so many warm. 

I've heard it in the chilliest land 

And on the strangest sea; 

Yet, never, in extremity, 

It asked a crumb of me. 

2012 will be a great year, i can feel it! 

Have a wonderful day everyone 

I love you - Bill x"

It is difficult to read Averil's emails without dying a little inside. What is there to say or do that will make any difference or create any meaning in life now that she is lost so tragically ?

I can only Search for Hope ......

Hope

Please perch in our souls

Please sing the tune without words

Please never stop at all

and please take our endless love  

across the skies to Averil

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".

Things go from bad to worse for Aidan Thomas and CPFT ..

In my view the care provided to Averil by CPFT and NCEDS was negligent in numerous ways and resulted in Averil's death.

The NHS organisations involved got many things badly wrong. Just basic things, such as actually appointing someone who has experience of Averil's illness to see her and look after her.

Even Averil's cleaner at her flat at university did more to save Averil's life than the clinicians involved.

Now Aidan Thomas and Mark Taylor at NNCCG (the Chief executives) are being totally disrespectful to Averil's memory and her family by insisting that the care provided to her was "satisfactory".

Clearly there is no accountability in the NHS and it is time that those responsible for Averil's death were held to account by others.

Trust is at an all time low even for those who work at CPFT.

 .......... Across England, Cambridgeshire and Peterborough NHS Foundation Trust got the worst reviews, with two fifths of staff (41%) saying they would not recommend it to loved ones.

Can it get any worse for CPFT as an NHS organisation or for Aidan Thomas - maybe it is time for him to let someone more competent try to turn this organisation around and start a new journey that is open and honest and puts the patient and their families first, maybe then those that work for CPFT would recomend the care that they provide to their own loved ones and families  ? 

Nic 02/10/2014

More help arrives ...

At times over the past eighteen months of dealing with CPFT/NCEDS and UEAMC it has seemed as if the system is all powerful and that patients and their loved ones are are completely powerless in their quest for the truth.

But wonderful things happen in small ways every day, with contact via the web site, twitter and other social media. 

Others who have been subjected to medical negligence in a wider context and those who have specifically been affected by the NHS trusts that neglected Averil are coming forward with their own stories and offers of help.

This help changes my world and by contact with others, it helps change more than my world, it spreads hope that we can change and improve things.

This help also gives significant inside information into the failings of CPFT over the past few years, not just in Averil's case, but in other serious cases.

Little by little the pieces of the jig saw are coming together and we are learning more about the endemic problems that resulted in Averil's death. 

UPDATE 02/10/2014 : 

Further contact today from individuals inside CPFT who have sent their condolences to Averil's family and also important information about the culture of lies and fear at CPFT and links to other serious cases of negligence and cover up.

Thank you for your help and support.

PS. If you would like to help us or provide more inside information into negligence or bad practice at Cambridge and Peterborough Foundation Trust (CPFT), Norfolk Community Eating Disorder Service (NCEDS), or the University of East Anglia Medical Centre (UEAMC)  please contact us via the contact page on the web site - your comments can be made anonymously too.

Happy Birthday Alex ..

Lovely to see a picture of Alex in the wilds of New Zealand. 

We are with you in spirit. 

Nic 21/09/2014

Living without Averil

A busy station and a quiet moment with Alex, Averil's partner, before he heads to New Zealand.

We sit across a coffee table as the anticipation of Alex's flight later in the evening grows.

The station is buzzing with passers by, but there is a stillness which echoes our thoughts of life without Averil. 

We talk of the good times, the special joys of knowing and living with Averil, we talk of the sadness and heartache of living without her now. 

Time stands still and then passes in a flash, we laugh as we recall the good times, and struggle to hold back the tears that we know are close to the surface. 

Alex's rucksack is full, ready for adventures. He will be travelling with memories of Averil always with him and our thoughts and love close beside.

Nic 01/09/2104

Every day a song

Averil loved music. She always had a song on her lips.

Averil's Song for the day was shared. It was a joy to find new music and give it away for inspiration and a sense of togetherness and wellbeing.

Averil's playlist is as joyful and wide ranging as her taste in books and poetry, and friends.

http://www.averilhart.com/music/ 

Even in the darker times since Averil is no longer here to sing, I can hear her voice ring out with joy to the world, and I often choose her a song for the day, something new and adventurous .... or just something simple and beautiful. I imagine the song floating into the universe, energy waves that will be united with Averil.

Today it is "Breathe, by Rhodes". 

https://m.youtube.com/watch?v=jspAlOnwXr4

The song and its sister "Darker side", also by Rhodes, has given me an evening of peace and I imagine it would bring a smile to Averil too.

Nic 08/09/2014

Nb. Reminds me also of a tribute from Laura, a friend from S3 ward at Addenbrooke's:

Beautiful girl with a beautiful spirit - always there to cheer up the breakfast table with an inspiring quote of the day.... and her 9.30am showers with beautiful singing ....

NHS Accountability ... the bottom line.

A long week culminating in a very positive discussion with Anna Dugdale at the Norfolk and Norwich hospital after an external review into Averil's care that suggested that changes are needed and will be made.

In contrast nothing from the clinical lead at CPFT or Aidan Thomas CEO, just more denials and a continuation of the cover up of the lack of care that resulted in Averil's death.

On Wednesday I went to London to meet with the Care Quality Commission (CQC) to explain my views and experience of the complaints system and how it had been handled by the various trusts that had "cared" for Averil.  At the meeting were other families that had suffered loss through NHS negligence.

Each family had a similar story to tell. 

In each case the story was of loss and grief and the terrible struggle to get those involved to admit what had gone wrong and provide information.

Some of the cases that we heard had been going on for a number of years, and a similar theme evolved.

Tragic failures of the NHS and then denial by those at the top such as Aidan Thomas at CPFT and those involved such as Dr. Jane Shapleske at Addenbrooke's.  In many cases it seems that relatives understandably give up in their fight for the truth, but even when there is a final exposure of the failures and an empty apology after years of struggle - there is no Accountability.

Everyone at the CQC meeting agreed ... we need Accountability in order for there to be change...

And we need change in order for the NHS to be a safer place for vulnerable, high risk patients.

Nic 06/09/2014

NNUH ... some progress. Thank you.

Anna Dugdale is the Chief Executive at the Norfolk and Norwich University Hospital (NNUH), where Averil was taken after being found unconscious at her University flat.

The NNUH hospital failed Averil in many ways and it is clear that they did not provide appropriate care for her. As a result Averil's condition became critical and she was later transferred to Addenbrooke's hospital in Cambridge.

After rebutting our initial complaint about Averil's care, I met with Anna Dugdale and she agreed to an independent review of Averil's care at the hospital in which we would be involved. She agreed to be open and honest and to answer all of our questions and she agreed to try and implement change from the findings of the review.

Although there is much to do at NNUH, we can at last see the seeds of change, and for that we are very thankful.

Anna has also made it far less painful for us than other organisations such as CPFT and NNCCG, in getting answers to what happened and why.

Anna has treated us with respect and dignity, an experience which has been totally lacking from the other NHS organisations we have been dealing with.

By working with us and recognising that failures occurred, Anna Dugdale has not only saved Averil's family the pain of having to fight to get answers, she has also saved the hospital time and money.

More importantly, Anna may be saving lives in the future by implementing change for vulnerable patients that arrive at the acute ward with advanced Anorexia Nervosa. 

Nic 05/09/2014

Aidan Thomas chief executive at CPFT .... and how the NHS deal with negligence.

So after several months of waiting for answers to questions about the care that CPFT and NCEDS provided to Averil, finally today, we get a letter by email from Aidan Thomas the Cheif Executive of CPFT.

As we have come to expect from Aidan Thomas, the letter simply gives none of the information that we requested.

Here is the last paragraph  ....  "I need to be asbolutely clear that we will not be answering anymore of your emails or letters received after todays's date containing detailed questions as we feel we cannot add anything meaningiful to what we have already said or offered"

This response clearly shows that CPFT will not face the truth .. they won't even answer the basic questions that were raised in 2013 and they are now in "cover up mode". 

Why do they refuse to answer questions about the experience, training and supervision by Dr. Jane Shapleske of the only person from NCEDS to see Averil ?

The facts are simple:

Averil died because of the lack of care provided by CPFT/NCEDS (and the University of East Anglia Medical Centre).

Unbelieveably a new trainee from NCEDS with no experience, being the only person to see Averil during her ten weeks at University.

There was no proper supervision of this trainee by Dr. Jane Shapleske and NCEDS did not even communicate with Averil's GP surgery.

Tragically, Averil simply starved to death whilst in the care of these NHS organisations.

They did not even respond to emergency calls to save Averil's life.

As cheif executives, when things go wrong, why won't Aidan Thomas at CPFT, Mark Taylor at NNCCG and Dr. Suzane Edmonds at UEAMC be accountable for their organisations and the services that they provide and admit what happened and simply say that terrible and basic mistakes were made in Averil's care ?

Covering up mistakes endangers patients lives and is totally disrespectful of Averil and her family.

Nic 04/09/2014

Averil's photodiary

Here is a page from Averil's photodiary and her words. 

Averil was so right ... "every moment of light and dark is a miracle".

For all those that new and loved Averil   ..... it will take such courage to be happy without her.

 "a goodbye, a smile, a smile" .

Its 6.00am and I am starting my day with thoughts of Averil and her sisters and a "cup of warming tea".

A robin is singing on the windowsill. 

Nic 03/09/2014

Accountability .......

Our wonderful Averil died whilst she was at University of East Anglia.

Averil died of starvation living in the community, whilst she was being "cared for" by a specialist eating disorder unit (NCEDS) headed by Dr. Jane Shapleske and a GP health care centre (UEAMC) accountable to Dr. Suzanne Edmonds.

Neither of these organisations was fit for purpose, yet eighteen months after Averil died they refuse to admit to ANY fault. 

Clearly they neglected Averil's care or she would be alive and with us now, and in my opinion individuals within these organisations were clearly responsible for Averil's death.

What is needed ......

We need proper care in the community for vulnerable, high risk individuals with eating disorders.

We also need truth and openness from the very top, it is long overdue.

When things go wrong those responsible should be held to be accountable and the NHS itself should strive to find the truth rather than relying on grieving relatives to establish and prove failures within the system.

Without hearing the truth from individuals like Dr. Jane Shapleske at Addenbrooke's and Aidan Thomas at CPFT  - how can things possibly get better for those that need help in the future. 

Nic 01/09/2014

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.