Connor Wellsted – our boy for ever more

I’d like to tell you about a little boy called Connor Wellsted. I spoke to one of his foster parents, Shazia, and she told me about Connor, his life, and what is understood about his death following his inquest.

Connor was born in April 2012 in Sheffield, he was born prematurely and acquired a brain injury shortly after birth following a cardiorespiratory arrest which starved his brain of oxygen.

Connor lived with significant disabilities, but he was loved, and enjoyed life. In November 2012 Connor went to live with Barbara and Shazia, who became his permanent foster parents. It’s clear from talking with Shazia that they were extremely loving and loved having Connor in their lives.

Connor thrived with their support and developed more than some had expected. Connor signed to communicate and said a few words. He was a very happy little boy and was progressing well.

When Connor was 2.5yrs old he really benefitted from a stay at @Childrens_Trust. They had always said that Connor and his family were welcome to return, so in early 2016 his carers felt it would be a good time to reapply for him to go.

“We thought we were doing the best thing for him, to go there”

At the time Connor wasn’t yet walking but Shazia felt that there was a window of opportunity before Connor turned 5, while his brain was developing, to make the most of the opportunities on offer.

As with most things it took nearly a year for the CCG to process his application for a further period of rehabilitation, and eventually on 19th April 2017, Connor and Barbara started a planned 6 week stay.

“Couldn’t fault what he was getting there, in terms of therapeutic input. He was there to receive what we thought was the best care. He’d been there for 4 weeks. He’d been well but had a few issues, like he had diarrhoea. He got a very, very sore bottom. We were concerned about that”.

Shazia explained the overnight set up at The Children’s Trust. Children receiving rehabilitation would stay in units, houses. Up to six children per house who were cared for by the staff overnight. Parents accommodation was in a separate block. During the day Barbara or Shazia looked after Connor, unless they were on a break or eating a meal. They attended all the therapy sessions, during the daytime with Connor, but from bedtime the staff took over the care.

Shazia recalled how at Connor’s inquest, much emphasis was placed on the fact that The Children’s Trust is not a hospital. They tried to use that in their defence and argued that Article 2 did not apply to Connor’s inquest. They suggested that as they were a charity, they were not a public authority under the Human Rights Act as providing services for the benefit of the public doesn’t constitute a “function of a public nature”.

This felt hollow to Connor’s foster parents. The Children’s Trust employed trained nurses, acknowledged and recognised that the children in their care were all vulnerable as a result of brain injuries. Connor’s stay was totally NHS funded, and the care was regulated by the Care Quality Commission.

The Assistant Coroner for Surrey, Dr Karen Henderson, took submissions from both sides before ruling that Article 2 did apply, considering the Children’s Trust provision to be akin to that provided by GPs, making them a hybrid public authority under the Human Rights Act.

As I understand it the coroner considered that Connor’s age, vulnerabilities and his staying at the Trust (a hybrid public authority) meant that Connor was under State control at the time of his death, and therefore the automatic procedural duty to protect Connor’s life, and in turn investigate his death, was triggered.

So what happened to Connor? Four weeks into his stay, Connor seemed to be doing well. Shazia had visited for 5 days the week before, switched positions with Barbara on the Sunday. Barbara was with Connor during the day time, the night before he died they went out for a cycle ride and Connor was his usual happy self. Nothing was untoward or strange that evening.

Twelve hours later their lives were turned upside down. Barbara wasn’t on the unit when Connor was discovered, staff have given mixed accounts of when they found him, but the coroner ruled he was found deceased in his cot, at or around 07:45 on Wednesday 17 May 2017.

Shazia explains how they were initially told that Connor had been checked an hour before, by a carer who told other staff that he was still sleeping. During his inquest a different picture emerged:

“It transpires, we only know this through the inquest process, she didn’t see Connor in the cot, she saw a cuddly toy, his fluffy bunny rabbit… he couldn’t have been in the position to be seen from the door, he was right in the corner of his cot, wouldn’t have seen from doorway.

He’d probably been there hours and hours given the fact he was in rigor mortis. He’d developed other signs of death, livor mortis, the blood pooling….”

Shazia tells how initially staff phoned Barbara and said they would come to her accommodation as they needed to talk to her about Connor. She thought something terrible had happened, an accident of some sorts, so she headed over to his unit. When she got there she was called into the office where they told her Connor had died. She was horrified. She went straight to his room. She was told that staff had apparently found him laid down but how he appeared never made sense.

“We buried Connor 5 weeks after he died without knowing what had happened… I rang the Children’s Trust in the July after Connor died… I rang wanting to find out about the checks overnight… let’s say I faced a reluctance to talk”.

It was during this call with the head of nursing that they first heard that the “checks” done overnight did not involve actually observing Connor. The reason, or excuse, given for this was that they had not wanted to disturb Connor because this was “the foster carers wish”. Shazia explains that this was false but was so distressing to hear.

“I can’t believe it. It makes you lose trust in everything. This is like something out of this world”.

It is now apparent following the inquest that carers had gone into Connor’s room in the dark, to give him his medication after 8am. Shazia recalls that staff didn’t open the curtains, they didn’t look to see where Connor was. A nurse in his room went to the medicine cupboard in his room, made up his medication into syringes, left it when the carer with her asked for help to “reposition” Connor… seemingly at that point she saw the panel under Connor’s neck.

Shazia explains how the inquest was opened in April 2018, but was adjourned when a nurse took the stand:

“She initially said that the cot bumper was on Connor’s chest… she eventually said it was under his neck…but it became clear that it was stuck there and required force to remove it”

The coroner asked the nurse to return to the stand.

She then changed her evidence from the bumper being on Connor’s chest, to being under his neck.

Shazia recalls the support that they received from AvMA who had provided a barrister in training pro-bono for the initial one day inquest. The same barrister stuck with the family through the next four years until Connor’s final inquest hearing took place. She is certain that they would not have uncovered what was found without their help.

Shazia describes chaos, carers and nurses calling for help but not pressing emergency buzzers. People running in and running off to get others. No immediate call for an ambulance. One of the nurses in her statement said she’d seen a mark on Connor’s neck and she thought initially the cot bumper had caused Connor’s death.

In a calm, measured but shaky voice, Shazia is clearly struggling to contain her emotion as she describes further:

“In witness statements they do describe when they laid him down his legs were sticking up in the air… Connor slept in a sleeping bag, because he’d move about in bed and to keep him warm and stop him undressing himself… they described they weren’t able to take it off, so they unzipped it and looked at his skin… nurse said didn’t take it off because it would have been too difficult.

You do think, actually, which bit of what they’re telling you is true or not. This is what they’re saying, this is what the inquest has apparently found.

Fact they moved Connor’s body, they removed his sleeping bag, when Barbara went to his room, he was not in his sleeping bag. That had been removed and was nowhere to be seen, turned up day or two later back in his room.

So they removed his sleeping bag, and manipulated his body to then lay him in a flat position”.

As we so often see in situations like this, not only is the remembering confused and contradictory, the narrative of parent blame emerges early.

“Very cruelly after Connor died they didn’t immediately say what had happened, but excused their lack of checks, carers started saying the foster parents didn’t want us to disturb Connor overnight”

These narratives quickly take hold. In the root cause analysis in the serious incident review, the question asked was “how can we prevent a situation where parents tell us not to check overnight”. The carer who was charged with checking Connor at 7am, who looked from the door and didn’t actually see him, told Police that she didn’t “didn’t disturb him any further because his foster parents like us to let him wake naturally”.

As is so often the case when disabled people die, Surrey Police didn’t really appear to do any thorough investigation.

“Junior police officers complete their investigations, they talk to various people, don’t interview everybody. The sudden death report was incomplete.

Call made to the Senior Officer who should have attended, they describe what has happened. They’d spoken to doctors by this time and the message that gets conveyed is, I’m surmising, is Connor had a brain injury, he had an arrest when weeks old, his prognosis was really poor, exceeded what everyone had expected… he has exceeded initial expectations about life expectancy, don’t appear to be anything concerning, the phrase “exceeded his life expectancy” the Detective Sergeant had conveyed back to the police officers there, that he doesn’t need to attend, this is a place for sick children”.

Shazia wrote to the IOPC to make a complaint about how the police had failed to really investigate what happened to Connor. They conceded they should have questioned more but fell back on the findings of the pathologist, who in turn had not been made aware how Connor was found.

“Barbara took numerous photos of Connor. It was her photo in the end that was used in the inquest to show the mark on Connor’s neck. Police took photos at midday. We didn’t know there was a mark on Connor’s neck actually, it was only after the inquest in April 2018 that we went back and looked at the photos in detail”.

Can you imagine.

Shazia, describes inconsistencies between what they saw, and the narrative that emerged. The blood pooling in Connor’s hands and lower limbs is particularly concerning to her.

“I’m a doctor, a GP, I’ve verified people’s deaths, never in my life have I seen someone in that condition he was in. It was like he had strange markings on his body…. blood pooling in his hands and lower limbs, it just wouldn’t fit with him being laid down as they claimed”.

The coroner found that Connor died sitting upright in his cot, trapped by the bumper. She stated:

“I have heard various versions as to the position of the cot bumper and I am satisfied the position of the bumper was on Connor’s neck and given the demonstrable inflexibility and rigidity of the bumper… that it took some force to be able to release the cot bumper and it was entrapping him”.

She was explicit that she did not accept the evidence that the cot bumper was lying on Connor’s chest when he was found. She was also clear given how rigid and firm the bumper panel was that force would have been required to remove it:

“although it remains unclear who removed the bumper and whether that involved one or two members of the nursing staff lending considerable support to indicate that Connor was entrapped”.

The coroner considered that the claims the bumper was found on Connor’s chest was misleading and inaccurate. She was critical of the damage that these false narratives caused.

“from the very point of Connor’s death through into SI reports and its addendum has resulted in a negative impact, not only in my investigation but that of the police and the coroner officer and indeed the information that was provided to the pathologist and to Dr Cary”.

The lack of curiosity of those supposedly providing care was also criticised by the coroner:

“the lack of curiosity by those on duty and more particularly by those in senior management who had a duty to undertake a full enquiry to not only ascertain the circumstances but to properly inform the relevant authority of any possible circumstances that may have contributed to Connor’s death”.

It seems to me that criticism could be extended far further to so many others. Such apathy, so little genuine curiosity about how a child can go to bed and die hours later.

The coroner issued a prevention of future death report that is explicitly critical. In it she states:

“Connor was known to be an active boy and it is likely he had woken, stood up and held onto the cot bumper which was not fixed at the top edge which then became dislodged entrapping him across his neck”.

She raises concerns about the unsafe use of the cot, finding that:

“It is likely the padded board (1m long, 40 cm wide with a soft side and a rigid side) was inappropriately and inaccurately placed on the wooden frame of the cot and as its top edge was without Velcro it could not have been attached to the cot leaving it loose with the result that it dislodged entrapping Connor across his neck”.

The coroner is also critical about the fact that there were no proper checks of Connor overnight. In court she stated that the overnight supervision of Connor was:

“inadequate and unsafe… I do not accept that by opening a door and/or standing near the door and/or sniffing the air is a proper assessment of Connor particularly as there was a wish and a need to ensure Connor was not lying in a dirty nappy”.

The Coroner accepted it was sub optimal care of Connor, however ultimately she felt she was unable to make a finding that the lack of supervision contributed to Connor’s death, as she accepted evidence Connor was likely to have died very quickly once he was trapped in the cot. She accepted it leaves what-if questions, as to how things may have been different if regular checks had been undertaken.

The PFD report is explicitly critical and has two ongoing concerns in relation to the Children’s Trust; in terms of the probity and investigation that they conducted, and in terms of the senior management team:

“The Police and the coroner’s service attending the Trust shortly after being informed of Connor’s death were not fully informed of the circumstances of his death. The scene had not been preserved. They were not told of the position Connor was found, that he had been dead for some time (likely hours) or that the padded board was initially found across his neck and that it required force by either one or two nurses for it to be pushed down to be removed.

Connor’s death was sudden and unexpected, and the senior management of the Trust (chief nurse and medical director) were concerned at the time the role the padded board may have played in Connor’s death. However, they did not keep a copy of Connor’s medical records, nor did they undertake their own initial internal enquiries, or inform the relevant statutory bodies of their concerns.

Furthermore, they arguably misled the CQC as to the circumstances of Connor’s death”.

I have to say if I was the CQC receiving this PFD report, the only logical next step would be to investigate prosecution. For failings in care, and also failings in Duty of Candour, worse still active attempts to mislead. Fraud I guess. Likewise if I were the NMC, or GMC in the case of the Medical Director, I’d want to investigate further.

How can anyone, regulators, or the public, have confidence in the care being provided to vulnerable children when this is the response to a death on their watch.

Thinking about it I think I’d want to know more if I was the Charity Commission too. Too many charities provide poor care, with seemingly no consequence, see here and here for two twitter threads detailing reports about Mencap care.

The problem with these omissions and cover ups, the narratives of parent blame, is they take on a life of their own. They breed and multiply, and in no time there is no thorough investigation, just a lifting of the ‘deaths from natural causes’ cover-up cloak, to sweep them under.

The coroner continued:

“Likewise, the pathologist who undertook the autopsy on Connor was not informed of the circumstances of his death thereby preventing a forensic post-mortem to have taken place to establish the role the cot bumper may have played in his death.

In addition, the Trust engaged an expert opinion from a forensic pathologist without fully informing him of the position the cot bumper may have played in Connor’s death.

The Trust undertook several Serious Investigation reports, the first of which was six months after Connor’s death.

These reports did not acknowledge or address the role the cot bumper may have played in Connor’s death despite evidence from multiple witnesses indicating it was likely to be significant”.

I cannot comprehend how that can be viewed as anything other than a deliberate fraud and cover-up.

The coroner was also explicit about her ongoing concerns relating to the senior management of the Children’s Trust:

“The current senior management team have not acknowledged there was a lack of transparency and openness as to how Connor died, or that the Trust did not properly investigate his death or inform the relevant statutory bodies of the circumstances of his death giving rise to concern of an ongoing lack of insight that institutional learning around serious incidents has not been accepted by the Trust.

As a consequence, there is a need to introduce and develop robust clinical governance processes and systems to reassure the public and supervisory statutory bodies that they will be informed of any future adverse events and they will be investigated with openness, candour and transparency”.

Remember earlier, I explained how the coroner had decided that Article 2 did apply, because the Children’s Trust were a hybrid public authority.

Surrey Police are also a public authority. How is it that two public authorities can fail to investigate the death of a young child? Not to mention the fact that Connor was a looked after child, in the care of the state, in foster care.

There should have been people falling all over themselves to find out what happened to him.

Shazia is conflicted with the inquest process. While grateful that the Coroner was able to find facts, and that she was critical of what they consider to be a cover up, it still feels insufficient.

The Children’s Trust had disposed of Connor’s bed before the initial inquest took place. Claiming they didn’t believe it had anything to do with Connor’s death. A bed that turns out had not been serviced for 5 years. The Children’s Trust also claimed that they could not trace who the supplier of the bed was, although in one of the staff statements a serial number was mentioned.

Frustrated at the partial exploration, following Connor’s inquest, Shazia made her own enquiries and did her own investigations.

“I wish I’d done it before… they confirmed that they supplied the bed to The Children’s Trust in 2009 and that they made the padding for the bed. Initially they made padding two thirds of the height of the bed, but they went back some months later, on the request of The Children’s Trust and fitted padding to the full height of the bed”.

So, The Children’s Trust disposed of the bed, and claimed they didn’t know where it came from, but a bereaved family member is able to not just track it, but also uncover that the padding was bespoke, made on the instruction of the Children’s Trust. I’m not legally qualified, but to me, that seems like they should be even more responsible for this failing. Surely this is the exact sort of failing that the Care Quality Commission, should be actively pursuing.

The coroner’s conclusion reads:

Connor Samuel Timothy Wellsted had significant neuro-disabilities and was attending Tadworth Children’s Trust for a period of intensive neuro rehabilitation. He died at 08.42 hours on 17th May 2017 following entrapment by a loose cot bumper causing death by way of airway obstruction.

I am satisfied that the Children’s Trust failed to

1. Properly secure the cot bumper appropriately and in so doing

2. Failed to keep Connor safe in his cot”

How can it be that a young child can die in their care, and the self-appointed “UK’s leading charity for children with brain injury” can be so care less about establishing what happened?

How can this be?

[The title of this blog post is taken from this video, which is pure joy, showing Connor being loved, and loving being loved, by those who cared for him, singing and camping, living his best life]

One comment on “Connor Wellsted – our boy for ever more”

Jules Gibb says:

Connor was a wonderful little boy, loved by many. The care that Barbera and Shazia gave him allowed a miracle to happen- a severely disabled child gradually being loved and supported into being the best he could be. They made the most of him and he adored them utterly, striving all the time to learn more and develop more under their encouragement. His death was a tragedy. It should not have happened. The tragedy was turned into a nightmare when Connor’s foster parents faced a long distressing battle to learn the truth and to survive the slur of being somehow at fault. Connor’s life was short but he was blessed with great joy, living with every part of his being, in the care of two exceptional foster mothers.

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