Just after 07:00 this morning outside University Hospital Bristol, a lady walked past, an NHS staff member. She took a leaflet off me and walked away. Seconds later she made me jump as she came behind me and said ‘have you been here long?’ Before I could say anything she asked ‘will you be here much longer, would you like a cup of coffee?’
I said ‘no thank you’ and explained I was OK and she went on her way. My immediate thoughts were, what a lovely gesture.
When she asked had I been here long and would I be here much longer, I nearly answered 18 months and as long as it takes but I didn’t want to appear rude to what might be the only pleasant person to speak to me all morning.
Minutes later a man passed and took a leaflet. He was wearing his NHS tag around his neck but he looked like maintenance staff. He walked on and stopped and took a second to read the leaflet I had given him before turning back and saying ‘was this your baby?’ After confirming it was he said ‘I am really sorry’. Another kind gesture. He had nothing to be sorry about but found time to say sorry about what had happened, a mark of respect, a sign of a nice man with a good character.
These two people are not what the NHS is about, they are what decent people are about and when decent people work in the NHS it makes the difference.
Working for the NHS is like a badge of honour, like the Police or the military. You see the staff with their lanyards hanging round their necks on their way to work, on their way home and walking round the shops. NHS staff showcase that lanyard like no other organisation, but let’s make no mistake, not all NHS staff are made equal.
At the same hospital on the same day, a lady walked past me with her NHS lanyard and badge of honour displayed above her coat. She said ‘we are sick of seeing you here with your leaflets and reading your lies’. I am not sure who she meant when she said ‘we’ as she was by herself.
I know the lady as I see her daily and when she walks by, usually with her colleagues they look at me like they have scraped me off the bottom of their shoes.
If she is sick of seeing me and my leaflets I wonder if she can ever imagine how sick I am of being there. I wonder whether she realises just how sick I am in general or how sick my family are due to the sheer nightmare her employer has put us through.
I wonder if it has ever crossed her mind what has actually happened in our lives that has forced me to get up at stupid o’clock every morning and spend day after day stood outside a hospital handing out leaflets. It’s not a pleasant hobby when the winter kicks in.
I wonder what makes this lady so certain that what I am saying is lies. I mean you really have to ask yourself how she came to that conclusion. A member of a profession that is an evidence based business and yet so sure that I am lying, without a drop of evidence.
I don’t expect much in life and actually it’s amazing how you adapt to circumstances. It’s amazing how thick your skin grows when you need it too and when you receive constant abuse from individuals who blame me, rather than accepting the truth. Individuals who protect the badge of honour, no matter what the cost.
I bet they never look at their colleagues the way they look at me, and yet they left a child to die and lied to cover up all the details of his death. Strange isn’t it.
What I used to accept as polite has changed in the current arena I operate in. Ignoring me, crossing the road to avoid me and even raising your hand at me and rolling your eyes have all become the new polite. Ignorance is now politeness and I have to accept it. I accept these now as the basic everyday responses from some NHS staff. They believe that their attitude is some sort of stand against an injustice. They don’t know what a stand is.
It’s sad really that an organisation that makes big claims of being ‘caring’, is far from it. I see it more than most. I could make a fly on the wall documentary on the real NHS. I see them everyday, most of them are not who they claim they are.
When you don’t know the facts and you choose to judge me, it just makes the problem worse. It shows why the problem is actually there. Defend at all costs. We don’t need to know the facts because they don’t matter, it never happened.
I consider myself a decent person and when I stand outside University Hospital Bristol anyone that is nice to me I say thank you to. Anyone that ignores me or frowns at me, I wish them a good day and anyone that is abusive to me I wish them a lovely day. You see, standing outside a hospital day in, day out accusing NHS staff of covering something up, I may as well put a bullseye on my head. It makes me unpopular, and in the eyes of most NHS staff it makes me a liar. I think some confuse my calm and overly polite demeanour as stupidity.
Most don’t know me and most don’t know Bens case they just choose to dismiss me and dismiss his case because they don’t want to believe it.
Ben was two months old when he was negligently left to die. His death was covered up by NHS staff and yet most NHS staff believe I am the problem.
I would love to see the size of the bulge under the carpet in Bristol Hospital with the amount of shit they brush under it.
Just after 07:00 this morning outside University Hospital Bristol, a lady walked past, an NHS staff member. She took a leaflet off me and walked away. Seconds later she made me jump as she came behind me and said ‘have you been here long?’ Before I could say anything she asked ‘will you be here much longer, would you like a cup of coffee?’
I said ‘no thank you’ and explained I was OK and she went on her way. My immediate thoughts were, what a lovely gesture.
When she asked had I been here long and would I be here much longer, I nearly answered 18 months and as long as it takes but I didn’t want to appear rude to what might be the only pleasant person to speak to me all morning.
Minutes later a man passed and took a leaflet. He was wearing his NHS tag around his neck but he looked like maintenance staff. He walked on and stopped and took a second to read the leaflet I had given him before turning back and saying ‘was this your baby?’ After confirming it was he said ‘I am really sorry’. Another kind gesture. He had nothing to be sorry about but found time to say sorry about what had happened, a mark of respect, a sign of a nice man with a good character.
These two people are not what the NHS is about, they are what decent people are about and when decent people work in the NHS it makes the difference.
Working for the NHS is like a badge of honour, like the Police or the military. You see the staff with their lanyards hanging round their necks on their way to work, on their way home and walking round the shops. NHS staff showcase that lanyard like no other organisation, but let’s make no mistake, not all NHS staff are made equal.
At the same hospital on the same day, a lady walked past me with her NHS lanyard and badge of honour displayed above her coat. She said ‘we are sick of seeing you here with your leaflets and reading your lies’. I am not sure who she meant when she said ‘we’ as she was by herself.
I know the lady as I see her daily and when she walks by, usually with her colleagues they look at me like they have scraped me off the bottom of their shoes.
If she is sick of seeing me and my leaflets I wonder if she can ever imagine how sick I am of being there. I wonder whether she realises just how sick I am in general or how sick my family are due to the sheer nightmare her employer has put us through.
I wonder if it has ever crossed her mind what has actually happened in our lives that has forced me to get up and stupid o’clock every morning and spend day after day stood outside a hospital handing out leaflets. It’s not a pleasant hobby when the winter kicks in.
I wonder what makes this lady so certain that what I am saying is lies. I mean you really have to ask yourself how she came to that conclusion. A member of a profession that is an evidence based business and yet so sure that I am lying without a drop of evidence.
I don’t expect much in life and actually it’s amazing how you adapt to circumstances. It’s amazing how thick your skin grows when you need it too and when you receive constant abuse from individuals who blame me rather than accepting the truth. Individuals who protect the badge of honour no matter what the cost.
I bet they never look at their colleagues the way they look at me and yet they left a child to die and lied to cover up all the details of his death. Strange isn’t it.
What I used to accept as polite has changed in the current arena I operate in. Ignoring me, crossing the road to avoid me and even raising your hand at me and rolling your eyes have all become the new polite. Ignorance is now politeness and I have to accept it. I accept these now as the basic everyday responses from some NHS staff. They believe that their attitude is some sort of stand against an injustice. They don’t know what a stand is.
It’s sad really that an organisation that makes big claims of being ‘caring’, is far from it. I see it more than most. I could make a fly on the wall documentary on the real NHS. I see them everyday, most of them are not who they claim they are.
When you don’t know the facts and you choose to judge me, it just makes the problem worse. It shows why the problem is actually there. Defend at all costs. We don’t need to know the facts because they don’t matter, it never happened.
I consider myself a decent person and when I stand outside University Hospital Bristol anyone that is nice to me I say thank you to. Anyone that ignores me or frowns at me, I wish them a good day and anyone that is abusive to me I wish them a lovely day. You see, standing outside a hospital day in, day out accusing NHS staff of covering something up, I may as well put a bullseye on my head. It makes me unpopular, and in the eyes of most NHS staff it makes me a liar. I think some confuse my calm and overly polite demeanour as stupidity.
Most don’t know me and most don’t know Bens case they just choose to dismiss me and dismiss his case because they don’t want to believe it.
Ben was two months old when he was negligently left to die. His death was covered up by NHS staff and yet most NHS staff believe I am the problem.
I would love to see the size of the bulge under the carpet in Bristol Hospital with the amount of shit they brush under it.
To all NHS staff if you have the time to read the following it may inform you in some of your future decision making, in regards to your patients and their families. I hope in some part what I have written can be of help to you and the future of the NHS.
I must first state that my intention in writing this letter is not to in anyway harm or harass anyone and not to cause any alarm or distress. All information provided in the document is truthful and therefore will not constitute any libel, defamation or any other similar claim.
My aim is not to be vexatious, nasty or personal but merely to present facts of the matter allowing people to make up their own mind and to use the information as they see fit.
The path which I am currently on was chosen by NHS staff, not myself, or any member of our family. Unfortunately this path does not have yellow bricks or an Emerald City at the end of it, of that I can assure you.
I have however offered on many occasions the opportunity for NHS staff who chose this path, a way to get off and that is by offering the truth, a truth that should have been offered from day one but wasn’t. Nevertheless I would once again state that without the truth it will take more than the wonderful Wizard of Oz to put an end to this journey.
I have followed recent medical cases and one in particular and it was clear that the outcome was not a big favourite with the NHS fan club. An outcome that has been fiercely contested. From my little knowledge as a mere mortal I have gathered that there have been several breakdowns and misunderstandings along the way.
Based on my above experience I would like to once again publicly offer all involved in our own case, the opportunity to stand up and break ranks by coming forward and being honest. A big ask I know but if you don’t ask, you don’t get. For anyone involved, I offer the opportunity to be removed from any further involvement in what has already turned out to be a messy case. For those involved in the case who wish to remain silent, then that is indeed a choice that will no doubt come with future consequences and I hope that the consequences are not met with outrage and anger from the NHS fraternity who will be able to recognise that several windows of opportunity were given for the truth to be told.
Now I must reiterate that my intentions are not to cause any harm or distress or to harass any individuals and my actions must certainly not be constituted as a threat but how shall we say it, more of a promise. I will pursue this for as long as it takes and along the way I will ensure I publicly expose those involved over and over again with factual evidence. I will be relentless in my pursuit of justice at whatever cost. My actions may appear futile in the rose tinted eyes of some NHS staff, but to me, it is the opposite action that is being used to meet the original action.
If you know any of the people involved and feel it may be within there interest then feel free to forward on this letter and maybe one day they will thank you for helping them out. Maybe one day as a valued worker within the NHS you may also recognise the choices they made were the wrong ones and the consequences which followed could have been avoided with the truth.
So let me explain exactly what I am talking about.
NHS staff were responsible for the death of our two month old baby boy Ben, a death they subsequently covered up. Some will argue that they never covered up his death they covered up the negligent failings which led to his death, potato potahto.
The level of care they offered our son on the intensive care unit at Bristol Children’s Hospital fell way way way below the expected level, to a level we believe is criminal. Now I know some medics at this point will be sighing that another family are pursuing the excellent staff that just made a little mistake but hear me out.
Whilst Ben was on the PICU ward in Bristol, staff failed to appropriately monitor his temperature leaving him hypothermic for days on end, failed to appropriately monitor his ventilation despite his condition requiring optimum ventilation management, told us Ben was of no concern to them and that others could die, showing a total lack of respect and total complacency around Ben’s illness. Staff failed to carry out appropriate or regular monitoring despite the suspicion of a bacterial infection waiting over 40 hours to take tests, twice. Failed to carry out blood tests despite saying they had, failed to carry out blood cultures despite saying they had, failed to administer antibiotics for 3 days despite suspecting a bacterial infection, failed to take any action after Ben turned blue and wasn’t ventilating, left him without senior care for 6 hours whilst blue and deteriorating, decided to give antibiotics but failed to do so for 9 further hours, prescribed antibiotics for chest Sepsis and forgot to give them for a further 6 hours, administered a drug days outside protocol causing collapse and hours later Bens death.
Now I think any credible medic will agree that the standard of care fell way below what was expected, especially considering Ben was on what would be considered by some to be one of he most reputable children’s wards in the country. Any medic who disputes this falls way below an expected level, has no place in our NHS. Facts are facts.
So what else did they do?
After discovering a positive bacterial infection, they failed to tell our family about the result for 12 months, yes 12 months. They failed to add any reference to the bacterial infection in any medical records before, during or after Bens death, failed to carry out a post mortem after telling us one was not necessary, failed to add the hospital acquired infection to the death certificate. Staff also failed to contact the Coroner claiming that the death was expected despite all Doctors stating they were shocked when Ben died and it was unexpected.
So we all make mistakes and we all forget a few things here and there so I don’t want to be too hard on these Doctors. I mean surely they would just tell us what happened and we could all live happily ever after.
They failed to provide us with a discharge or death summary, failed to offer any bereavement support, failed to contact us after Ben died and later claimed they had but claimed they never left a message as they didn’t want to bother us.
We then met Consultants 7 weeks after Ben died were they finally told us 50 minutes in to a meeting that Ben had developed a secondary bacterial infection. The honesty was overwhelming. They then went on to lie saying they never knew about the infection until long after death, lied telling us they had carried out blood tests and blood cultures and lied stating the both bloods and cultures were negative. No tests were ever taken when they claimed. We also know it was the infection that brought the Consultants to the bedside. How does something bring you to the bedside that you claim to only have known about 12 months after death. Honestly I am not kidding 12 months after death they disclosed the result that was reported hours before Ben died. You couldn’t even make it up if you tried.
Following the meeting where they told us they never knew about the infection before Ben died they later sent internal emails discussing the positive result before death. Good honest Doctors. More lies.
They were investigated for their lies. The outcome was they didn’t mean to lie. The person who investigated them was one of their colleagues. They were that close she failed to even take a statement off one Doctor. An independent investigation decided the investigation was not appropriate or robust. No further investigation was done.
The Chair of Child Death Review removed references to failings, references to deteriorating blood results, references to inappropriate ventilation management and references to hypothermia. She also withheld the Child Death Review minutes for 18 months, coincidentally until one week after the inquest, claiming they did not exist. When we finally received them they disclosed more recognition of failings and failures in protocol. It was finally admitted in the Child Death Review that Ben had died of Pseudomonas, Pseudomonas Sepsis, Sepsis Syndrome, Septicaemia, Sepsis. Interestingly enough despite it being a hospital acquired infection the microbiologist claimed that the infection had come from our home water and refused to accept it was hospital acquired. I think the tests on admission they did, or claim to have done may prove that theory wrong.
A further meeting we discussed in detail Bens care and discussed the poor level of care. We discussed that it was disgusting that Ben wasn’t given antibiotics and was told that they had forgotten, but that they were also not necessary. We left the room and staff admitted that we were right and that antibiotics should have been given days earlier. We know they admitted this because they were recorded, not only on our recording but also on their own. After they admitted we were right they realised the recordings were still on and conspired to delete the hospital recording and attempted to delete our recording. Unfortunately they failed to delete ours so therefore could not delete their own despite agreeing to delete it after the meeting had finished.
They were investigated for conspiring to delete the recordings. The outcome was they didn’t mean to say it and there comments were said in haste. The person who investigated was one of their colleagues. An independent investigation decided the investigation was not appropriate or robust. A further investigation was done coming to the same conclusion. The Trust refused to release the investigation stating it was on the advice of their legal team. Open, honest and transparent? You make up your own mind.
The investigator removed all reference to failings stating they were not relevant. Candour? I think not.
In a further meeting the silence was broken. They admitted, we got it wrong and we are sorry. We missed the infection and we are sorry for not getting in and treating it. We should have given him antibiotics days earlier and had we done so they would have treated him. They admitted that all involved agreed that Ben should have been given antibiotics earlier. They agreed that when Ben was blue that was the Sepsis getting hold of him. They told us that they were not covering. This was six months post mortem. Imagine being a family and hearing this. A mixture of hurt at knowing he could have been saved and relief that we now knew.
From this day onwards they changed their mind, they changed their story. From when they admitted they should have given antibiotics, apparently he no longer died of an infection.
An inquest 18 months after Ben died they all told the Coroner there was never any sign of an infection, antibiotics were never needed and antibiotics would not have saved Bens life. They all told the Coroner that Ben died of an air leak around his heart, an air leak that caused a cardiac arrest and caused Bens death. What they told the Coroner was more lies. Interestingly enough the Coroners own independent expert told the same lie. Collusion? Not for me to say.
They knew they had administered a drug Day’s out of a documented protocol which had caused the air leak and the cardiac arrest but claimed Ben had deteriorated with an air leak before the drug was given. This was despite previously telling us that Ben was stable at this stage. But that was the other story. More lies, more inconsistencies and most of all absolute perjury committed by all Consultants at the inquest. The Coroner said she was not willing to comment on their lies.
They told us he had an infection they missed, they told the Coroner he didn’t. They told us antibiotics would have treated him, they told the Coroner they wouldn’t. They told us antibiotics should have been given earlier, they told he Coroner they shouldn’t. They told us there is no way we can say he had an air leak before he had a cardiac arrest, they told the Coroner the air leak caused the arrest. More lies and more cover up, absolute perjury.
They told us the Pseudomonas infection had brought Consultants to the bedside and they told the Coroner they knew about the infection that night. We know there are five Doctors who knew about that infection before Ben died. The Trust claim it was only a trainee who knew and he took no action. They knew and the Trust CEO still claims today that they didn’t. They won’t admit they knew because when they do we start again. Why did you not document? Why did you not tell the parents? Why was it not on the death certificate? Etc etc. Let’s just blame the trainee who has currently been left out of the picture but will no doubt be pursued at some point for his lack of effort to take action on a dying baby after he found out he had an infection.
Oh and just to top all this off after two and a half years they finally admitted liability for the negligence that led to Bens death and claim they had only just realised.
Now after all of the above I once again offer each and everyone of them an opportunity to clear their name, to be honest and to do exactly what should have been done from day one. If they are being forced to lie then say so and we will leave them alone. Of course they need to say who by. If they feel out evidence is wrong, just let me know I will remove it.
Dr Jess Spaull Junior Doctor
Dr Suzanne Dean Paediatric Consultant
Dr James Fraser Paediatric Consultant
Dr Matthew Christopherson Paediatric Consultant
Dr Peter Davis Paediatric Consultant
Dr David Grant Paediatric Consultant
Dr Margrid Schindler Paediatric Consultant
Dr Ian Jenkins Paediatric Consultant
Bryony Strachan Chair of Women and Children’s Services
Rebecca Dunn Deputy Divisional Director
Ian Barrington Divisional Director
Sean O’Kelly Medical Director
Robert Woolley Chief Executive
Profession Michael Stevens
Dr Jane Luker Deputy Medical Director
Each and every one of the above have played their role either negligently allowing Ben to die, causing death through reckless practice, conspiring to cover failings and delete evidence, inappropriately investigating covering failings, withholding evidence, lying about failings, lying about test results & perjury.
I will continue to expose each and everyone now and forever more with factual evidence. If what I was saying was not true it would be removed and I would be in court for defamation. Ask yourself why I am not? I was arrested twice for harassment for exposing them. The cases were dropped. It was just an attempt to discredit me and my own unblemished character.
I will ensure that all future employers are aware and all family and friends. I am not harassing anyone, I am presenting facts. I will be like the news channel in their life that never turns off presenting old news over and over again to new people. I will keep going until everyone knows, every colleague and every person.
If anyone believes anything I have written is incorrect and would like to discuss it and prove me wrong I will remove it.
I hope they take me up in my offer, it may save their careers. I hope that other medics realise that lying and covering a baby’s death is not cool, it ruin lives. Think before you lie.
This is not Kansas and I am not Dorothy.
This is real life and Ben was a living breathing little boy who they left to die and covered up his death.
These Doctors are not the victims of my repetitive campaigning, they are the victims of their own selfishness. They are what is destroying the NHS whilst people sit back and blame everything else.
Ask yourself, is this the NHS you signed up to work in? Are these the people you thought you would be working with?
This is not system failure due to shortage of staff or any other reason. This is individual failings and individual lies that have failed the system, failed the NHS and failed our family. There are no excuses!
If you are coming in a car you might as well fill it with protestors!
The only thing I have discovered from Bens death is a system riddled with corruption— Allyn Condon
This is Bens story and the extreme failings which led to his death. I know there are other families out there with tragic stories and enough is enough. We will no longer be railroaded down these avenues with no solutions. We will be organising a protest in late 2018 and would urge medical staff, whistleblowers and anyone who cares about the NHS to join us.
In life, learning tends to happen in your early years and besides some little bits and bobs you pick up along the way, we are all generally know it alls by the time we hit 40. In 2015 our son Ben died age 2 months old and what followed has been the steepest learning curve in my life.
Following our first child Nate, we suffered 11 miscarriages so when Ben came along, he really was our little miracle baby. Weighing in at just 3lb with a beautiful mop of blonde hair on his head, he was absolutely perfect.
We spent several weeks in Southmead Hospital where Ben was looked after by some of the most amazing staff we had experienced in the NHS. They not only cared for Ben but they cared for us. A day never went by where we didn’t feel reassured that the staff in the NICU unit were doing everything within Bens best interest.
Ben never had any issues, he was a perfectly healthy baby. He was growing well and feeding well and due to his excellent progression he was allowed to go home around 35 weeks.
After spending 3 wonderful days at home, Ben took poorly and on Friday 10th April 2015 we called NHS 111. We were concerned about moving Ben as he appeared to be deteriorating. We expected an ambulance to be sent out as Ben was so young. Despite us explaining clearly his condition, the call handler logged all the wrong answers. She pre diagnosed Ben as having a cold and didn’t want to trigger an ambulance. She logged the answers wrong to avoid this happening. In the end we received no ambulance and no call back. We had been let down badly by NHS111 so instead finally rushed Ben to hospital ourselves.
Following Bens death Care UK done a full investigation and RCA and discovered that NHS111 had got it totally wrong. The call handler was suspended and retrained before returning to work 6 weeks later hopefully better prepared to deal with these cases. We fully accepted the apology we received from Care UK and the call handler and felt no need to pursue the matter any further, I mean after all they had accepted responsibility and said sorry. What more could we have ever wanted.
Interestingly Care UKs involvement in itself flagged up an issue which would later become significant in what we discovered. In a meeting 10 weeks after Ben died, the Care UK representative asked us a question in relation to Bens discharge summary. We didn’t have the answer as we didn’t have a discharge summary. He went on to explain that maybe we had been confused and that following a death it was not called a discharge summary it was a death summary. After again reassuring him that we did not have one he told us that he had a copy that he could send to us. It was one of those wow moments. Are we really sitting here with a total stranger 10 weeks after Ben had died and he is telling us he has a copy of our sons death summary, a document we don’t even have ourselves. Surely this was some sort of breach.
On the evening of the 10th April around 19:45 we rushed out of our house with full intentions of heading to Bristol Children’s Hospital. For some reason unbeknown to us we had developed an opinion that this was the best place to go. The centre of excellence when it comes to paediatric care. Unfortunately just after we left, Ben took a turn for the worse so we instead opted to take him to our local hospital, Weston General.
On arrival to Weston, Ben was in a very poorly state and within minutes he had a team of excellent staff surrounding him, who never left his side. I don’t recall there ever being less than 5 staff in Bens room at anyone time that night. They could see that we were in a mess and not only looked after Ben but took the time to make sure we were OK, after all our 2 month old baby who was still only 36 week gestation was really poorly. I always remember our oldest son Nate was only 4 at the time looking very anxious. We had no one to look after him due to all of our family living up North. Two nurses kindly offered to take Nate and took him to an ambulance and made sure he was OK. Easter had not long passed and they were feeding him chocolate. They looked after him for 4 hours until we were eventually transferred to Bristol. I will never forget the care they gave that night in Weston, it was nothing short of exceptional.
So on we went to Bristol Children’s Hospital unaware that our lives were about to change forever.
From the minute we arrived at Bristol Children’s Hospital we realised it was not not like Southmead NICU, it was very different. The staff were different, they were much more abrupt and they certainly were not in the same ball park as Weston for their bedside manner. One of the first Consultants we met was really nice but he kept calling Ben a ‘she’ at first it didn’t really bother us but after he had been told several times and continued to do it, then it started to become a little inconsiderate.
Ben had been started on a broad spectrum antibiotic in Weston to cover for any possible bacterial infections. Luckily the day after he got to Bristol, they ruled out any bacterial infection and diagnosed Ben as having human metapneumovirus (hMPV) a viral lung infection. We had never heard of it and could hardly even pronounce it. We were told it was a common respiratory virus similar to RSV and whilst Ben appeared very poorly he would get better after around 5 days.
The days went on and Ben started to show signs of improving. His CRP infection markers had come down, his temperature was stable and his ventilation requirements were good, or as good as could be expected for someone with a viral infection. On Tuesday 14th April Ben took a turn for the worse. His Oxygen Index was up in the mid 20s, his ventilator had a leak of around 70% and nurses were pushing pressures up, his CRP started to creep back up, his temperature was low 34’s and he just didn’t look well at all, a significant difference to the day before. We discussed what was happening with Bens main Consultant Dr Suzanne Dean and she told us that they suspected a secondary bacterial infection and they were going to look to start antibiotics again. We were also told later on that a child who has had broad spectrum antibiotics stopped can become a sitting duck for a secondary bacterial infection. It was therefore no surprise that at this stage this was their mindset to restart them considering their suspicion.
Dr Suzanne Dean informed us that they would monitor Ben but if he got worse they would start the antibiotics and that they would repeat his bloods to check for infection. She noted in the medical notes, ‘if Ben becomes clinically unwell start antibiotics’. Antibiotics were not started. It took 40 hours for bloods to be repeated and that day Ben was diagnosed with ARDS. We would later discover that a premature baby with hMPV and ARDS has a mortality rate of over 60-70%. It was therefore quite strange that after Ben was diagnosed with ARDS we were still being told that Ben just had a cold and he would get over it. We were slightly concerned at the mixed messages. He just has a cold and he will get over it and his poor condition is suggesting he has a bacterial infection and we will treat it. Ben never did get over it, nor was he treated.
On the 14th, 15th and 16th of April Ben was left hypothermic for over 12 hours each day with temperatures down to 34 degrees. It was OK though because we were told we did not need to worry about Bens temperature. We would later discover that despite this being a worrying temperature for anyone let alone a neonate, Bristol Children’s Hospital did not have a temperature Care plan for neonates, so why bother with the temperature. His Ventilation leak was over 90% and after we had been told that a maximum leak of 15-20% was protocol, this appeared a little excessive. I mean if his ventilator had a 92% leak what was it actually doing. When we raised this issue and the fact that the alarm kept going off we were told to stop worrying, it’s not relevant and don’t look at the numbers they will just drive you mad. Well they must know what they are talking about, I mean after all that is what they are trained to do!
On Thursday 16th April Ben had deteriorated really badly. His temperature was still low 34, his x rays were much worse again and his ventilator and oxygen requirements had increased. They still hadn’t started antibiotics despite two days earlier saying they would. We were told that they definitely thought that Ben had secondary bacterial infection. We asked what the plan was and we were told that they would start antibiotics and they would carry out and bronchoalveolar lung culture (BAL) and that they would repeat blood tests and blood cultures. It was quite concerning that despite all of these tests some of the staff still maintained that Ben just had a cold and he would get over it. The ward Matron William Booth told us ‘Ben is of no concern to us, we have children on the ward who are seriously ill and could die’ how much more serious than 70% mortality rate do you need to be before the complacency stops and before you become a concern.
The BAL was taken and as suspected, Ben had a pseudomonas bacterial infection. The only problem is the result was reported the day after five hours before Ben died and staff forgot to tell us. In fact we didn’t find out about that test result until 12 months after Ben died and only then it was because we discovered it ourselves. The Trust eventually claimed it was only discover by a trainee and he never took any action. We know that’s not true as Dr James Fraser told us ‘the intelligence around the Pseudomonas brought Consultants to the bedside’ interestingly those Consultants it brought to the bedside were the Dr Peter Davis and Dr Matthew Christopherson who forgot to tell us about it, forgot to add it to medical notes and forgot to add it to Bens death certificate. Interestingly it was Matthew Christopherson who also failed to send us the death summary but managed to send it to every other Tom, Dick and Harry. Dr James Fraser also confirmed at the inquest that Consultants knew before Ben died about the bacterial infection, something the Trust CEO Robert Woolley still denies to this day. The problem the CEO has is by admitting what has already been admitted everything else becomes a lie, the cover up becomes real. We already know that the negligent failing that led to Bens death were covered up and we have the evidence to prove it but no one really cares. It’s just one baby, it doesn’t matter. It doesn’t affect the hospital stats that much and the hospital regulators don’t care in the slightest. If we ignore it, then it might just go away.
Like I said, no blood tests or blood cultures were taken on Thursday 16th April despite us being told they would be and despite us being told they had been. In fact to prove a better level of care throughout the week and to prove that they had not been complacent about Ben, they not only told us at the time that they had taken those tests but they also repeated this in a meeting 7 weeks later, this time not only telling us the tests were taken but also that they were negative. They told us Ben couldn’t have had an infection before the day he died, how could he the tests were negative. The phantom tests.
Friday 17th April, the day Ben died. At 05:30 I went in to see Ben and he was really bad. He was blue. He almost looked dead at that stage. I asked why he was blue and what had been done about it. Nothing it appeared. I was told Bens infection markers had risen again and that antibiotics would definitely be started. We now know this was not possible to know this as the blood tests were not taken when they should have been. Instead they were taken early hours Friday morning at the same time as blood gases were done. Those blood gases went missing and took us 18 months to get. I went to get Jenny and we went back at 07:00 and Ben was worse. That morning Ben wasn’t ventilating. The Nurse Daisy Cook repeatedly took him off his ventilator and repeatedly asked for Consultant attention. It never came. Interestingly enough in the medical notes we eventually received, it had the same notes as before, no change. We knew they had not looked at Ben, we were there. For three days they had been telling us about an infection and they had failed to treat it.
As Friday went on Ben got worse and still no senior Consultant came. We would later discover they were treating really sick children, we had already been told Ben was not a concern. They prioritised every other child on that ward over Ben. How does the baby that’s not a priority end up dying? How are you so complacent you just don’t treat him? Eventually at 14:15 the severity of Ben’s condition was evident to all and along came the cavalry. First off all we were asked to leave the room whilst they administered Surfactant. What we didn’t know was they were about to administer a drug two days out of the stated ARDS protocol. A drug that can cause lung air leaks especially in neonates. 5 minutes after we left the room we later discovered a blood transfusion was done. Surely they must have known they were doing his before we left the room. Surely they should have just come and told me. I was sat next door. Following the blood transfusion they paralysed Ben with Rocuronium despite his appalling condition. After the Rocuronium Ben deteriorated further and became very unstable and staff proceeded to administer Surfactant, out of protocol.
At 16:00 we were asked to come back on to the ward as Ben had suffered a cardiac arrest. 45 minutes after the cardiac arrest, a pneumopericardium was discovered. We were devastated that Ben had developed an air leak around his heart but were told that they had appropriately treated it. We asked what had caused it and were told that Bens lungs were badly damaged by the hMPV. No mention of Surfactant and no mention of the secondary bacterial infection they were now well aware of. As the day went on we watched Ben go though a series of horrific procedures until eventually just after 21:00 he passed away. We had to watch staff try and resuscitate him but we now ask why. They knew he had hMPV, they knew he had ARDS, they knew he had Pseudomonas and they knew he had Sepsis and was in septic shock with blood poisoning. They had told us at 19:00 that he was going to die.
At least of something good was going to come from all of this, they did eventually get to tick that box to say they had given antibiotics. Even if it was three days after they had said hey would. Even if it was just one hour before he died. That box was ticked.
We didn’t discover antibiotics had actually been given until 7 weeks after Ben died. In fact, with no prescription record, we are still not sure if they were ever given. 7 weeks later, this was the same time we were told he had developed a bacterial infection. 7 weeks late and 50 minutes in to a meeting. Well at least they had 7 weeks to get their stories straight. The only problem was they didn’t.
At 11:00 on the 17th April Jess Spaull the Junior Doctor who had been looking after Ben asked Senior Consultant Dr David Grant if they should give antibiotics. He agreed. By the time Dr Spaull had finished treating the sick children on the ward, she finally got round to prescribing antibiotics at 14:30. Well better late than never as they say. Despite the prescription chart being written at 14:30 for ‘chest Sepsis’ staff must have decided that if we leave him for a little longer it won’t do any harm. I mean they had only decided 3 days earlier. By the time Dr Spaull had left the ward at 18:00 she realised that antibiotics had still not been given and reminded staff. Staff still failed to give them until 20:00 and an hour before Ben died and hours after they knew he was going to die. You have to ask why Dr Spaull never gave them herself. I think from what we are told that she may have been busy with patients who were more of a priority. Ben doesn’t matter because those other children were saved. Ben was just collateral damage to them. We were later told by the Chair of the Child Death Review Margrid Schindler that they ‘just forgot to give them’. I am not sure if Dr Margrid Schindler is a reliable source of evidence though as after all she herself removed evidence from the Child Death Review pointing to failings, conspired with a General Manager Julie Vass to delete a recording with evidence of failings and withheld the Child Death Review minutes for over 18 months until a week after the inquest when they magically appeared with the evidence that they had discussed the failure in protocol that caused the air leak that according to the Avon Coroner Maria Voisin caused Bens death.
Why would you want to hide a failure in protocol that was one of the major causes of Bens death from a Coroner? I just don’t know. I can’t work it out.
So Ben died of hMPV. Five hours after discovering a hospital acquired bacterial infection, Dr Matthew Christopherson told us they were 100% sure that Ben died of hMPV and that no post mortem was necessary. No post mortem on a child who was premature, had hMPV, had developed ARDS, had Pseudomonas, had developed Sepsis and had an air leak around his heart. I don’t know maybe we are wrong but I would have thought a post mortem would have been a good idea to see what really went on. Actually no one wanted to see what really went on as they know their failings were so bad, they were so far below the expected standard that they amount to gross negligence manslaughter. Of course they didn’t want a post mortem. Despite all of the above they claim that it was really unexpected that Ben died, so unexpected they never bothered contacting the Coroner to tell her. They later said that they didn’t contact the Coroner as they would only do that for unexpected deaths. Talk about sitting on both sides of the fence.
So after Ben died, staff waited for us to cremate Ben before inviting us to a meeting to tell us he had an infection. The invite to the meeting was the first contact we had from Bristol Children’s Hospital since Ben died. We even had to go to our GP to ask him to contact the hospital for bereavement support. He contacted them explaining our situation and months later the hospital claimed they had contacted our GP chasing us which was not true. Just another excuse and another failing.
The lies had started hours before Ben died but this was only the foundations for what was about to come.
In our first meeting, the Senior Consultants Dr James Fraser and Dr Suzanne Dean raised alarm bells when they announced 50 minutes in to he meeting that they had discovered a bacterial infection but told us they only discovered it days after Ben died. They also told us throughout the week that Ben had a stable temperature of 36.5. Now we knew they were lying but allowed them to continue. They told us ventilation was optimum and pressures were not high. We must have had signs across our heads saying ‘stupid parents’ or at least that’s how they treated us. Now don’t get me wrong their pretend compassionate looks were really good. They almost had us fooled. The little rub of the eyes and the pretend tears. Award winning!
They told us they had taken blood tests, they lied. They told us they had taken blood cultures, they lied and they told us that they only discovered the infection after Ben died, they lied. They even lied claiming they only just found out before the meeting, they lied. In the next meeting they corrected this lie and reverted back to the lie it was discovered days after. Just another lie. When you look people in the face and they tell you that they only discovered an infection days after your child dies, why would you not believe them? These are compassionate medics working for our glorious NHS. Hours after looking us in the face and telling us they discovered the infection after Ben died we discovered that thy had discussed over email with the microbiology team that the infection was discovered before death. Maybe they just found out after the meeting? Maybe. Or maybe not because even now, even with the evidence and the emails to show, the Trust just deny any knowledge of the result before death. Protect the lies, protect the cover up. Unfortunately though these lies can’t be protected they are out in the open, no one can’t hush me up as they covered our baby’s death. At every turn whenever they got caught, rather than admitting it and holding their hands up they create a new lie and hope the old one goes away. They are stacking up and at some point they will fall. Now if Consultants or Doctors want to come and say ‘we were made to lie’ that’s OK we can then work together to ensure whoever made you lie is brought to justice but until then the liars remain in the firing line and the NHS suffers as a whole.
So we know they didn’t want us to know about the infection at the time, they didn’t add it to medical notes, they didn’t add it to the death certificate, they failed to send us a death summary, they failed to contact a Coroner and they told us a post mortem was not necessary. So let’s look at why they didn’t have a post mortem after we asked would there be one. In an email dated December 2015, Dr Peter Davis told his colleagues ‘there is no way the Condons asked for a post mortem they were just too distraught, especially mum. Her grief and wailing was so bad that all the other parents left he unit and after half an hour of that the Condons left and never returned’ nice touch Dr Davis. Not only was he lying to justify why he didn’t do a post mortem but his callous words show what type of Doctor he really is. We never left the unit we stayed with Ben all night, in fact we carried him down to the chapel of rest. Peter Davis eventually admitted he had a made a mistake, a mistake apologised for. In actual fact Peter Davis has left the ward and not returned it was based on his own leaving that he bizzarly assumed that we had left and not asked for a post mortem. Further spin, further lies. There was no post mortem as no medical staff involved in Bens care wanted to be exposed for the gross negligence that caused him to die. The care was so bad that the thought of accepting it and learning from it never crossed their minds. All that they wanted to do was cover it up.
The child Death Review then declared that Ben’s collapse was from Pseudomonas Sepsis and sepsis syndrome and severe Pseudomonas and sepsis was added as a cause of death in June 2015. All of a sudden the truth started to come out and lies became clear.
A third meeting in August we sat and discussed Ben’s poor care, the failings of staff, the complacency towards Ben’s illness and the failure to give antibiotics. The staff in the meeting did not agree with our version of what we described but we were presenting medical facts. We then left the room for a break. Whilst we were out of the room staff agreed that we were right and antibiotics should have been given days earlier. They said we were right and we had a point. At this stage staff remembered that they still had their recording running and stopped it. The Senior Consultant who had chaired the Child Death Review and omitted any reference to bacterial infection from the report then asked ‘can we delete that last part, I didn’t know it was still recording and it could get us in to difficulty’ the general manager in the room then said ‘I will take that bit out when we have finished’. Staff then realised that our recording was still on and after attempting to delete it State ‘I don’t know how to do it without deleting the whole recording’. We then entered the room, so they had no further opportunity to delete the evidence. Hospital staff knew they could now not delete their own as it would be inconsistent with ours. A senior Paediatric Consultant and A General Manager conspiring to delete evidence of negligent failings that led to a baby’s death. Classy!
We discovered the recording on our way home and was devastated. We made a complaint to the hospital. The General Manager retired. Nothing was done about it until we raised the issue again. Eventually an investigation took place. It was found that there was no wrong doing. We later discovered that the Deputy Divisional Director had removed all reference of failings from her report in relation to failings and antibiotics. The hospital said this omission was due to the evidence not being relevant. Not relevant! What they meant was it exposed he cover up even further and we wouldn’t want that would we.
An external investigation stated that the investigation was neither robust nor appropriate. The Trust then carried out a further investigation coming to the conclusion that there was never any intention to delete and the comments were said in haste. We requested detail of the investigation and were refused them on the advice of the Trusts legal team.
The Trust carried out an internal review using MHPS to answer an external complaint so they did not have to provide details of the investigation to our family. Transparency at its best! They even discussed this process being criticised by the Ombudsman. Strange to know it’s wrong but still do it, who would have thought it from such an honest bunch.
Following these meetings we had a fourth meeting and this time it was with the Clinical Director Dr Ian Jenkins who had been brought in to look over the case with fresh eyes and investigate what had gone on.
He told us, I am sorry on behalf of the hospital and all the staff that we got it wrong. We just didn’t get Ben’s case right. On a Friday morning he was developing an infection right there in front of us and I am sorry on behalf of us we missed it and failed to treat it. He said I just want you to know I am not covering (really) He said had we given antibiotics the day before that would have treated him and given him a better chance. He said he had spoken to all of his colleagues and who had treated Ben and some more and they all agreed that antibiotics should have been given earlier. He went on to say I would have banged him with antibiotics the day before.
We also for the first time discussed that Ben had an air leak that had caused him to deteriorate. The Clinical Director told us he had the Surfactant, he then had the cardiac arrest and then he developed an air leak around his heart. He went on to say, there is no way we can say that air leak was there before the cardiac arrest, there is just no clinical evidence to support it. This was the first time we had been told about the contribution of the air leak as a major factor which was strange as Ben had now been dead six months.
Following the Clinical Directors admissions of failings and admissions that antibiotics should have been given, the hospital sent us a letter failing to mention any infection and telling us that Ben had died of an air leak around his heart and that the air leak had caused the cardiac arrest. We contacted the Trust back and they said that Ben never died of an infection he died of an air leak around his heart. How bizzare, they spent so much time and effort covering it up and when they eventually get round to admitting it and admitting it should have been treated earlier they then deny the significance of it. Another classy moment!
We were shocked as the Child Death Review clearly pointed to the collapse coming from Pseudomonas and now they had admitted they should have treated it. No sooner had they admitted their failings and all of a sudden he did not die of an infection. How is this learning? How is this open and honest? Is this really the transparency the Duty of Candour look for?
It was clear from the meeting that the Clinical Director had said there is no way we can say that the air leak was there before the cardiac arrest, the air leak happened after the cardiac arrest. (Surfactant 15:00 cardiac arrest 15:45 pneumopericardium discovered at 16:25)
For the following year, the Trust maintained their new version of events that Ben died of an air leak around his heart. At the inquest all Consultants told the Coroner, there was never any sign of an infection, antibiotics were never indicated, they were surprised to find out Ben had an infection and that they had only carried out a lung culture as a matter of routine as opposed to because they had suspected an infection. They showed themselves as bare faced liars under oath. They didn’t care the damage they had caused and continued to cause to our family.
Each and every Consultant at the inquest lied to the Coroner under oath committing perjury and she failed to do anything about it.
In relation to the air leak, all Consultants told the Coroner that Ben died of an air leak around his heart and that the air leak had caused the cardiac arrest. The Consultant who administered the Surfactant two days out of protocol told the Coroner that Ben was suffering from an air leak at 14:40 (20minutes before he gave Surfactant) despite his statement to the Coroner stating that there was no clinical signs of the air leak around the heart prior to getting the X-ray at 16:25.
Not only were Consultants denying Ben had an infection and claiming he never needed antibiotics but also that Ben had an air leak prior to the Surfactant being given, despite no clinical evidence.
Both of these areas were lies and lies that we have documented and recorded. All of the Consultants lied to the Coroner committing perjury both in respect of the infection and the air leak around Ben’s heart.
Following the inquest we received the child Death Review minutes something that the Trust claimed never existed. On the minutes we discovered that they had discussed the failure in protocol during the Death Review and discussed the Surfactant causing the deterioration. The references to Ben collapsing following Surfactant were removed by the Medical Director prior to him sending us an email.
So, inquest out of the way, lies told, infection covered up, air leak decided as to what caused Ben’s death. Or so says the Coroner.
Over the following months that Trust failed to provide the information in respect of the Doctors who knew about the infection before Ben died and despite us now knowing several Doctors knew prior to Ben dying about the positive infection the Trust claim it was just the trainee that knew.
Dr James Fraser ‘It was the intelligence around the Pseudomonas which brought Consultants to the bedside. We knew about the bacterial infection that evening’
CEO Robert Woolley ‘None of the Consultants knew about the positive Pseudomonas result reported before death until several months later’
The lies and cover up just doesn’t stop and it’s now coming from the top.
October 2016 University Hospital Bristol release a statement to the media admitting that their failure to give antibiotics caused Ben’s death and admit full liability for negligence. They released the statement to the media after providing us an apology on a password protected email. We read the apology on Twitter. Absolutely appalling!
On the bottom of the letter they also admit that they had now changed the protocol for administering Surfactant but there has never been any acceptance that this was given out of protocol and despite the Coroner agreeing that Ben did not die of an infection and he died of an air leak, I believe the Trust are further trying to avoid gross negligence as they know the Surfactant given out of protocol caused the collapse that led to Ben’s death. They also know the damage to his lungs was caused by an infection they failed to treat.
The Trust admitted to negligence two and a half years after Ben died stating that antibiotics should have been given and that it was new evidence which led to this decision. The evidence was always there and they chose to lie about it. They chose to cover it up and they chose to not learn from it putting other lives at risk. They continue to lie about it to this day, the CEO continues to lie.
The failings which led to Ben’s death are so severe they can not be anything other than gross negligence manslaughter.
The Police state that they believe Doctors remained focussed on saving Ben’s life. This is despite the hospital admitting liability for not remaining focussed on saving his life. The Police have no evidence to show anything other than gross negligence manslaughter and choose to ignore it. Who did they speak to that told them they remained focussed. According to Avon and Somerset Police they never interviewed anyone.
The Police have listened to the recordings from the inquests and despite being very clear that the Doctors have lied to the Coroner state that no perjury committed and had there been it is their opinion that the Coroner would have dealt with it. The Coroner can not deal with perjury if she believes the lies she is hearing are the truth as Consultants lie under oath.
The Coroner following the inquest said it would be inappropriate for her to comment on the lies we had raised with her. Why would she comment, after all this is just a baby’s death.
The Coroner at the inquest removed evidence that she said was not relevant. The evidence was that the Consultant had said that Ben had an infection that they missed and had they treated with antibiotics earlier it would have treated Ben.
The Coroner was not interested that the Consultant had told her tests were done as routine when she had told us they were done as she suspected an infection.
The Coroner was not interested that a drug had been given out of protocol at a time when Ben was extremely unstable.
The Coroner was not interested fullstop.
Ben’s case has been referred to the Mr Hunt 3 times, the first by ourselves, Mr Hunt told me personally that he did not investigate individual cases but promised he would not let Ben’s case go away. The second time via South Gloucestershire Council and the third via Mrs May.
Mr Hunt has referred us to CQC, NHS England and Health Watch. All have told me it is not there responsibility to investigate.
Gross negligence manslaughter is a serious breach of care. failings that are deemed so bad that they become gross negligence manslaughter. I think you will agree our son’s death falls in to that category.
I have attached below some links to recordings that show what I have been talking about is factual based. I would also be happy to answer any question you may like to ask and I am happy to provide all of my evidence that will support each and every one of my claims.
Do you honestly think that anyone has learnt from Ben’s case? The only thing they have learnt is that if you are going to cover up a baby’s death that was gross negligence manslaughter, then don’t get caught next time. Make sure you cover up to a higher standard.All doctors are still practicing and not one has faced any disciplinary for their role in Ben’s death or the subsequent cover up.
There was no RCA done, no clinical incident report, no serious incident. All we have to show is a pile of evidence showing how corrupt these Doctors are.
https://youtu.be/jNjomSvZqJg this is the meeting that they lied and then the other meeting where they slip up and tell us that they knew and also tell the Coroner that they knew. The clip also shows the wording of the emails following the meeting on internal emails.
https://youtu.be/83hCcrqu9yo The conspiracy to cover up the details of a baby’s death. Whilst the Police currently do not believe this is criminal as they state they were not covering up a criminal offence, if it is proven that Ben died of gross negligence then this will become conspiracy to cover up gross negligence
The Consultants knew when Ben collapsed that afternoon that they had grossly failed him over a few days. They knew there were consequences and they chose not to face them, they chose to cover up the gross negligence. Had they faced them we would have accepted an apology even for gross negligence manslaughter.
Whether you are a family who has suffered loss, a Doctor or Nurse who works in the NHS, a whistleblower or just someone that cares, then I urge to to be part of our protest outside the Department of Health this year. This cannot continue.
allyncondon 