A coroner will take the rare step of issuing a prevention of future deaths report after an inquest uncovered concerns over the ambulance service called out to help a much-loved Kettering boy when he had a fatal epileptic seizure.
Assistant coroner Jean Harkin has heard distressing evidence from all the medics involved in caring for the popular Latimer Arts College pupil and yesterday (Friday, December 10) she returned a narrative verdict.
But following her verdict, Ms Harkin, took the unusual decision to issue a section 28 prevention of future deaths report that will help others reflect on things that went wrong during the incident and learn lessons from the 12-year-old's death.
She raised concerns over the fact recommendations from a serious incident report prepared by an independent investigator have not been implemented by East Midlands Ambulance Service.
Earlier in the day the court had heard evidence from medics who cared for the youngster before and during his time in KGH after he suffered a fit at home on December 3, 2019.
Back in September, 2019, regsitrar Dr Rini Shah had taken an outpatient clinic at KGH under the guidance of consultant Triloknath Acharya, who gave evidence at the first day of the inquest.
Dr Shah said she had seen Alfie in the clinic and said she had heard from his parents how he did not like the taste of his epilepsy medication and that they had, under instruction from doctors, been reducing his dosage during the past few months.
As he had not had a fit since February 2016 and was only taking a 200mg daily dose of Epilim, Mr Acharya decided that he could come off his medication.
In the clinic Dr Shah had been responsible for making notes and the court heard that there was no mention in those notes of the fact that his parents had been warned there was a 20 per cent chance of patients having another fit after medication was ceased.
Both Dr Shah and Mr Acharya told the court they remembered that fact was among detailed advice given to Alfie's parents Lynette and Kevin Stone at that clinic. But that was heavily disputed by the family barrister Craig Carr, who said that the family had not remembered being told about the risks of stopping the medication.
Dr Mya Yee was the consultant paediatrician who was called to paediatric A&E on the night Alfie was brought in by the ambulance service. In a statement to the court, she described how the team administered several anti-convulsant drugs to the 12-year-old but they could not stop his fits so he was intubated and anaesthatised.
He was placed on an adult intensive care unit because Kettering does not have any paedeatric intensive care beds.
Alfie was given medication to support his blood pressure as his mouth was bleeding heavily from tooth extractions he had had the previous day.
Dr Yee said the specialist Children's Medical Emergency Transport (COMET) team, advised over the phone to try to wake Alfie up and extubate him as his condition improved, but by the morning of December 4 his condition had begun to deteriorate and his kidney function began worsening because of a lack of oxygen supply to his organs and multiple organ failure.
At 9.50am his parents were told that Alfie was critically ill and that the Comet team was on its way to transfer him, but that a paeds ICU bed had not yet been found in a nearby tertiary centre at Oxford or Leicester.
Following Alfie's death, a serious incident report was commissioned. It was overseen by former nurse, and health visitor Sharon Robinson who has extensive experience in undertaking reviews following unexpected deaths of youngsters.
Giving evidence yesterday, Ms Robinson said in that report she had made a series of recommendations to various health bodies involved in Alfie's care. One of those was to East Midlands Ambulance Service - advising them to ensure that their staff were trained in administering Buccal Midazolam.
That was the rescue drug that Alfie had carried with him throughout his life but was not administered on the night of his death. It can be given via injection straight into the cheek and both of Alfie's parents had been trained in how to use it.
However, on Thursday, the court had been told that EMAS had not implemented the advice contained within the report and paramedic Andrew Britton said he had received no training on the use of Buccal Midazolam since the night of Alfie's death.
Ms Robinson told the inquest that she had only discovered on Friday, the day she gave evidence, that EMAS had objected to that recommendation.
Coroner Ms Harkin said: "You said EMAS should implement audit training and competence of first responders in prolonged seizures of children? The Joint Royal College of Ambulances guidelines support the use of Buccal Midazolam by paramedics, is that correct?"
"Yes," she said, adding: "Throughout my investigation I wasn't able to determine that the paramedics were trained or were used to giving that medication should they require it, but in Alfie's case suitable medication was given because of the presence of an IV line.
"It's a training point for the organisation but it didn't impact on the care the paramedics gave at the time because they gave an alternative drug."
Of her findings, she said: "While care and delivery didn't adversely contribute to Alfie's death, there were a number of learning points which I include in the recommendations in the report."
She said that care given by KGH and by EMAS was within the guidelines but that there was a lack of communication with Alfie's parents when it became apparent that there was no paediatric intensive care bed available to him.
She also said that alternative options for transport should have been looked at when it became apparent there was a bed for Alfie but no medical team to transfer him.
Ms Robinson said that she had been concerned that there was no checklist available for medics who were taking young people off epilepsy medication to ensure they ran through all the risks and 'safety netting advice' with parents.
Dr Georgina Harlow of the COMET team said that since receiving the Serious Incident Report into Alfie's death, the East Midlands COMET team had made a reciprocal agreement with West Midlands for alternative transport provision. Following the recommendations in the report, she said that the team also now had its own ambulances provided by St John's Ambulance rather than being reliant on the busy EMAS ambulance service to move children to tertiary hospitals.
Coroner Ms Harkin said: "Is it your opinion that Alfie's death may have been prevented had it been in a paediatric intensive care unit? Is there something that would have been done differently?"
Dr Harlow said: "The team at KGH did an amazing job looking after Alfie. I don't feel the outcome would have been different. He deteriorated extremely quickly and I have the opinion that the outcome would have been the same."
KGH Clinical Director and Consultant Paediatrician Patti Rao said all of the recommendations in the SIR had been followed by the hospital, and since Alfie's death an epilepsy nurse and a second epilepsy specialist consultant had been appointed. She said that the hospital now held four dedicated epilepsy clinics every month and the phone support was also available to patients.
Dr Rao said that there was also now a checklist in development for medics to use when children were being taken off their epilepsy medication.
"We have very much learned from this episode," she said, "and we now explain the risks to parents if their child is withdrawing from epilepsy medication."
She said staff across the whole hospital had been a part of the changes and had taken on other patients into their own clinics to free up capacity for the epilepsy clinics.
In his legal submissions, the family's barrister Craig Carr said that he had 'real concerns' about the way in which EMAS's response to the report had arisen during the inquest process.
"We had a situation where a manager gave evidence yesterday and didn't seem to be aware of the recommendations in the report and was not able to provide any useful evidence on that," he said.
"The evidence we have is that Buccal Midazolam is a.. good medication, a preferable medication to rectal diazepam and it's concerning that the paramedic Andrew Britton has not been given any training on it and wasn't aware of it despite the guidelines."
Returning a narrative verdict to Alfie's clearly distressed family, the coroner said: "I am encouraged that KGH have put in place the measures (in the SIR).
But she said she had 'more concerns' about EMAS. She was concerned that no consideration had been given to ambulance crews carrying Buccal Midazolam, given the relative ease of administering it into the cheek of fitting patients.
She said: "I am also concerned that there was oxygen deprivation to Alfie for a prolonged period."
Ms Harkin also said that she had concerns that a bag and mask was not considered as an alternative when oxygen could not be given to Alfie by paramedics, and that ambulance staff had not correctly balanced the risk of Alfie being starved of oxygen against the danger it may pose to him because of his jerky movements while seizing.
She said that she was confident that Alfie had died of hypoxic ischemic brain injury and multi-organ failure due to his prolonged epileptic seizure.
"The paramedics had difficulty administering oxygen and IV medications due to his continuing fitting movements which resulted in him being without oxygen for more than fifteen minutes," she said.
She said that she would issue a Section 28 report, adding: "Hopefully the report can flag up some important points that the ambulance service can take on board."
Only one other S28 report has been issued in Northamptonshire during 2021. The rare step is taken by coroners only in the most serious of cases where future deaths could be prevented.