Vital changes made after disabled bed death of boy, 9

His family believe justice has not been served

A series of tragic circumstances possibly contributed to the death of a much-loved nine-year-old Devon boy found unresponsive in a gap within his disability bed, an inquest has heard.

George Ellis, who was born with a very rare genetic syndrome that significantly affected his airways and made him prone to vomiting, was alone when he was sick and stopped breathing at his home in Marldon, Paignton. His mum, Jodie, said she discovered him trapped between his mattress and the cot side of his bed - just two weeks after his leg got trapped in the bed.

Tragically, George was unable to be revived, and his death was confirmed after arriving at Torbay Hospital on October 1, 2022. A five-day inquest took place at Exeter Coroner's Court at the beginning of September and resumed yesterday, October 8, for assistant coroner Deborah Archer to sum up the evidence that was heard and give her conclusions.

She confirmed it was unable to be determined whether George had been sick after becoming trapped in his unserviced bed, which would have increased the vulnerability of his airway, or vice versa, as the incident was not witnessed. It was also said to not be possible to say if George would have survived if someone had been with him because of how life-limiting his complex health problems were.

Summing up the evidence, Ms Archer recalled how George had been born one of a twin and had Hartsfield Syndrome, with only around 20 cases in the whole world. It causes health problems, including global development delay, seizures, feeding difficulties, unsafe swallowing and airway issues. George was non-verbal, so was not able to communicate his needs, was wheelchair bound and tube fed.

His life expectancy was said to be dependent on how his symptoms were managed, and although his family was told he was unlikely to see adulthood, hope remained because a boy in America had reached the age of 17. George's complex medical condition was said to have made him an 'extremely vulnerable' child who would vomit on average twice a day and was at risk of his airway being blocked at any time.

He lived at home with his parents and siblings, and was said to have required regular checking and suctioning to remove fluid from his airways. During his short life, he had many hospital admissions and had required different surgical procedures.

A significant focus of the inquest was the disability bed George slept in. It was supplied by Exeter-based Millbrook Healthcare in 2017. The company was said to have a contract with Devon County Council to maintain and provide community equipment in Devon.

It was heard Millbrook should have serviced the bed annually, but no checks were ever carried out. Its managing director said in evidence it was due to 'an error' in the application of the systems company.

Some health professionals were also said to be confused over whose responsibility it was to look after the bed and how to deal with concerns and risks reported by the family. Due to pressure sores, George was said to have been given a new mattress that did not fit his bedframe, causing a gap.

An occupational therapist (OT) confirmed she ordered a new bed and was informed about the incident when George's leg became trapped. However, it was not escalated as an entrapment risk and at the time, she 'did not believe' she was dealing with a 'truly urgent situation'.

A new bed was due to have been delivered on October 5 - four days after George's death. The OT denied giving the family advice about how to fill in the gaps in the bed.

How George came to be found lifeless in his bed was recalled by his family. George was said to have been put to bed as usual on the night before his death. Around 3am he vomited and and was seen to by his sister Jodie.

Around 7.30am he was checked by his dad before he went to work. George was said to be listening to his story box while his mum was in the room next door with his brother. She said she couldn't remember the exact time she went into his room but when she did, around 8.45am, she immediately became concerned.

Jodie recalled: "I could see he was stuck in between the mattress and cot side with his head tilted backwards and his right arm was down the side."

The medical cause of his death was aspiration, vomiting with a known vulnerable airway and Hartsfield syndrome. Police were said to have looked into concerns regarding George's care at home and claims that the family had not been engaging with social care, following the advice of health professionals or using a vital oxygen saturation monitor which detects small changes in oxygen levels.

It did not result in any criminal prosecutions. The inquest heard that after George's death, a saturation monitor the family had been issued was found to have last been used on August 20.

The family insisted they had instead been using a portable saturation monitor, which has not since been found by the hospital trust, family or police. The coroner said she accepted it was 'likely' George had been wearing the portable monitor the night of his death, and it was also 'likely' his father had turned it off, as he had on many other occasions when George was awake, before leaving to go to work.

Ms Archer said: "His family had been told he should have a saturation monitor on him when he was asleep. Although they allege it was never spelt out to them by medics, all the medical evidence I heard made it clear that if he did not have the monitor on, he needed to be properly supervised.

"I do not accept the submission of the family that they did not recognise, know or understand the risks that George's compromised airway presented. Indeed, the evidence from the paramedic was that Jodie had been asked on the day of his death by Jess how long George had been left unattended.

"I find that this family loved George, and he loved them. For the most part, he was well cared for, but because of the number of pulls in opposite directions from other children and work commitments, sometimes George's care was compromised.

"This was evidenced by the house often being described by professionals as cluttered and chaotic."

The coroner concluded it was 'most likely' that for around one hour and 15 minutes, George was then left unsupervised while not attached to the monitor.

Giving her judgements on the issues relating to George's bed, Ms Archer said: "I have taken into account a lack of proper risk assessment, the poor condition of the cot rails, a failure to service the bed, and George getting his leg trapped in the bed on September 13, 2022."

However, she said she was unable to conclude whether any gap by the mattress, strain or defect to the mesh rails more than 'minimally' trivially or negligibly caused or contributed to his death. The evidence was unable to confirm how big the gap was, with the coroner stating it could have been between 60mm to over 130mm.

Dr Helen Channer, a consultant paediatrician with a responsibility to deal with child deaths at Torbay Hospital, said during the inquest her feeling was if George vomited and was not being observed or had help clearing his airway, he could have died in any position. As he was on his own when he vomited, she ultimately agreed it was not possible to say if he had been sick and moved into the position his mum found him in or got into that position and was then sick.

Ms Archer concluded: "I find that George was a highly vulnerable child with a compromised airway that professionals had been very concerned about for a number of years, and it was part of his unusual and life-limiting condition. George could have vomited in any position and at any time, and even with immediate and expert intervention it might not have been possible to stop him from aspirating in the way that ultimately caused his death.

"I know the lack of observation is a fact the parents bitterly regret."

She added it would be 'pure speculation' to conclude he had been sick after becoming trapped in the bed and instead returned a narrative conclusion.

Ms Archer said: "[George] died as a consequence of aspirating on vomit on the background of a known vulnerable airway which was one of the consequences of his diagnosis of Hartsfield syndrome, a rare genetic disorder."

Despite acknowledging that George's death had highlighted a 'number of worrying concerns' relating to both the bed provider and some health trust professionals, Ms Archer said she would not be writing a preventing future deaths report due to changes that have already been implemented.

They have included new guidelines to risk assess every child with disability beds. Following George's death, Torbay and South Devon NHS Foundation Trust conducted a serious incident investigation which resulted in around 10 recommendations being made. Ms Archer said she was 'satisfied' matters have been addressed 'where possible'.

In relation to Millbrook Healthcare, she added action had also been taken to deal with concerns including the servicing of beds, risk assessments, and appropriate systems for ordering priority urgent items.

Bringing the inquest to an end, Ms Archer said: "This has been a really difficult and upsetting inquest and everyone has done their best to assist me."

Following the inquest, George's family said they were 'disappointed' that they believed justice had not been served but are pleased his death has resulted in vital changes being made.

In a statement issued on behalf of the family, his mum Jodie said: "Our hope for the inquest into George’s tragic death was that lessons could be learned from our loss and that no other family would lose a loved one in the way that we lost George. We are grateful that guidelines have now been put in place to risk assess every child, in the same way that adults are assessed, when they are provided with profiling beds at home.

"We are disappointed, however, that two years on from George’s death we are no closer to what we see as justice. George’s cause of death remains the same as stated on the interim death certificate and the bed has not been listed as a contributing factor.

"A number of failings by Torbay and South Devon NHS Foundation Trust were identified including the lack of risk assessments and the failure to take seriously our complaint of George’s limbs becoming stuck just a couple of weeks before his death. We hope that these failings continue to be addressed by the trust going forward.

"This has been an incredibly painful and protracted process but we hope it will go some way to ensuring that no other family has to endure the same loss and heartache as we have. We are continuing to liaise with our legal team in respect of the civil claim."