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.

17 Months and waiting for Averil's medical records ..

Another morning trying to get a copy of Averil's medical records.

Another typical response today, from Chess Denman, clinical lead at CPFT.

" Dear Mr Hart,

I am afraid I cannot, at present give you a firm timescale for collection of Averil’s medical records. As Caldecott Guardian for the trust I must be sure that I act correctly and there are some really tricky confidentiality issues that need to be resolved and some of the relevant individuals are away (it being that time of year)."

Another day wondering why the NHS has to hide the truth when things go wrong. 

Seventeen months and counting and so it goes on ....... 

The NHS is totally disrepectful to those it has failed and loved ones who are grieving.

Nic 18/08/2014

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

Independent: Cuts leave NHS mental health services dangerously close to collapse

An investigation by the Health Service Journal (HSJ) has revealed that there are 3,640 fewer nurses and 213 fewer doctors working in mental health in April this year compared to staffing levels two years ago.

Click here to read.

Averil's death - A "cover up" ?

Averil's death was avoidable, she suffered from a treatable illness. 

The care team that were assigned to look after Averil simply didn't provide any proper care and within ten weeks of starting university Averil died. 

Had just one doctor or clinician from this team seen Averil when she needed help, then she would be alive today.

The truth is so obvious that it is seems unimaginable that a medical team would try to explain away their actions and say that the care they provided was satisfactory .... given the tragic outcome, it obviously wasnt.

So after Averil's death it took quite a while to realise that those involved would go to some considerable lengths to hide the truth from us. I suppose their task has been easy really ....

* To never answer questions fully or directly

* To censor the information flow by witholding the majority of Averil's medical records, and keeping the majority of the records hidden for over a year

* To commission reports from friendly sources .... and get a legal team to omit the basic questions.

* To put a legal team to work to ensure that the truth is burried. 

* To suggest that the family is in need of therapy and not able to understand exactly what happened. 

But maybe, just maybe ...  

It would be easier still, to be open and honest and to say "... you know what, we need to be accountable. We failed this young person and our actions resulted in her death, we need to understand and admit what went wrong, so that it won't happen to others in the future".

Although we know that nothing can bring Averil back to us, this open approach may just help one person who is suffering alone in the community with AN. 

Wouldn't that be good therapy  ?

Sadly the culture of Openness and Honesty in the NHS still appears to be a dream and hasn't arrived here yet ....... in fact it seems to be a long way off.

 Nic 13/08/2014

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 .... Roulette with patients' lives and why bad news is burried £££

As an inpatient, Averil's care within Addenbrooke's hospital was expensive to the NHS, with intensive one to one care.

Shortage of inpatient beds means that it is all too easy for there to be considerable pressure for patients to be discharged far too early into outpatient services in the community in order to save costs.  

A game of roulette with patient's lives.

In Averil's case she was discharged into a disorganised and chaotic outpatient community service (NCEDS), where a single inexperienced trainee psychologist saw Averil every couple of weeks, with no cover even for holiday periods when the trainee was away.

In this high risk strategy, the NHS stands to save money.

All too often, sadly this is at the expense of the patient, who may lose out in many ways; especially in the quality of care that they recieve.

With a toxic mix at NCEDS of extremely poor supervision and lack of experience, this cost saving excercise is a recipe that can lead to the tragic death of a young patient and I beleive this is exactly what happened in Averil's case.

Even Averil's cleaner at University knew more about Averil's health than the consultants and team looking after her. 

The community service contract (NCEDS) is up for renewal in 2014. 

NCEDS are determined to hide the bad news of Averil's tragedy in their attempt to regain the contract for community care worth around £3,500,000.

In order to do this, they have delayed every request for information that we have made (sometimes for as long as five months). It seems that they hope that Averil's case will remain buried in red tape until after the bidding process and that once they have regained the valuable contract, no one will care.

Is this the new "open and honest" NHS that we have been promised ?

I see no signs of change.

Nic 11/08/2014

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 world I never knew ....

Before we lost Averil to AN, my world was carefree. i thought i understood how the world worked and what i was about.

But i knew nothing really.

i didnt know or understand what pain and suffering was. 

Only after Averil's death did my life change. i often woke at night from crying in my sleep, and my every thought was of the futile and tragic loss of a wonderful life. A life that had offered so much to so many.

The physical pain of loss was unbearable. It felt as if my soul had been wrenched from my insides and with it had taken away every last breath, every last free spirited and happy thought.

i was left empty. 

Instinctively i knew how Averil's family and friends were suffering .

Gradually i began to also understand a little of the wider pain and suffering of others.

Averil has brought us both the greatest of joys in life and also the darkest possible moments. Now she is bringing me towards understanding.

Every day people are fighting for their loved ones with AN and ED's and every day individuals like Averil are fighting a personal battle to live their lives in "freedom".

No day will ever be without Averil.

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.