Exclusive: Great Ormond Street apologises over missing information but denies wrongdoing
A world-leading childrens hospital has been accused of a concerted effort to cover up the mistakes that led to the death of a toddler.
Jasmine Hughes died at Londons Great Ormond Street Hospital aged 20 months after suffering acute disseminated encephalomyelitis (ADEM), a condition in which the brain and spinal cord are inflamed following a viral infection.
Doctors said that her death in February 2011 had been caused by complications of ADEM. But an analysis of detailed hospital computer records shows the toddler died after her blood pressure was mismanaged spiking when she was treated with steroids then allowed to fall too fast. Experts say this led to catastrophic brain damage.
Although the detailed computer records were supplied to the coroner who carried out Jasmines inquest, crucial information concerning her blood pressure was not included in official medical records that should hold the patients entire clinical history.
Dr Malcolm Coulthard, who specialises in child blood pressure and medical records examination, carried out the analysis of the files, comprising more than 350 pages of spreadsheets. Dr Stephen Playfor, a paediatric intensive care consultant, examined the computer records and came to the same conclusion as Dr Coulthard, that mismanagement of Jasmines blood pressure by Great Ormond Street and Lister Hospital, in Stevenage, was responsible for her death.
Dr Coulthard told The Independent: As a specialist paediatrician, it is with great regret and disappointment that I have concluded that the doctors’ records in Jasmine Hughes medical notes fail to reflect the truth about her diagnosis and treatment.
In the 11 hours from Jasmines admission to the intensive care unit at Great Ormond Street, there was not a single manual entry in her medical records to reflect the diagnosis of serious blood pressure changes, nor any record of events that had indicated she was developing severe brain damage during a period of low blood pressure.
Dr Coulthard said the case suggested a concerted effort to conceal the truth, adding: The absence of any relevant contemporaneous notes over this time in Jasmines case cannot be accepted as a normal situation; there must be an explanation. Possibilities include a total breakdown of normal practices and zero notes being written about crucial issues over this critical period, or the notes having been written but mysteriously lost, or been deliberately culled and manipulated to expunge the truth.
Jeff and Joanne Hughes with their daughter Jasmine before she became ill.
In 2014 Jasmines parents, Jeff and Joanne Hughes, who live in Doddington near Cambridge, brought a legal claim against Great Ormond Street which describes itself as one of the worlds five foremost childrens hospitals and is a leader in disease research. The hospital agreed to pay a six-figure sum covering a settlement and legal costs in 2017.
However, the hospital denied poor care caused Jasmines death and Mrs Hughes continued to investigate. In June, while poring over reams of hospital print-outs she found reference to the technical computer records on her daughters care.
The couple, who have three children aged seven, four and two, now want the case to be reviewed by the health service ombudsman. Mrs Hughes, 41, said: I think this was an active attempt to hide the truth from us. It is impossible that the records that went missing, the records that weren’t provided, the things that aren’t mentioned in the medical notes, the discrepancies with the information provided to the coroner – I just can’t see how all of those things happen innocently in one case, especially when they are all related to Jasmine’s blood pressure management, and the effect it had on her.
Jasmine developed a viral infection shortly before Christmas 2010, and was seen as an outpatient at Great Ormond Street in January 2011. Both a doctor and a nurse took handwritten notes, including blood pressure measurements for Jasmine, but they told the coroner their notes had gone missing. In July 2012, Great Ormond Street said no records could be found.
After multiple trips to Lister Hospital in January 2011, which found ADEM was causing her high blood pressure, she was admitted on 4 February and treated with steroids, a standard treatment for ADEM that is known to potentially cause high blood pressure as a side effect something that should have been identified as a risk for Jasmine given her existing high blood pressure. In contravention of the hospitals own protocol, the steroid was given without any blood pressure monitoring.
None of the notes covering the crucial period after her first dose, at which stage she began to have seizures, was made contemporaneously. No reference was made to blood pressure readings in entries that evening by paediatrician Farrukh Sheikh or the following morning by consultant Dr Andy Raffles, though Dr Raffles raised the possibility of hypertension causing swelling of the brain. He later told the coroner that the highest reading he had seen was 125/55 mmHg, though 20 minutes after he arrived on the ward, the team that transferred Jasmine to Great Ormond Street was told of a reading of 144/48, which was not recorded in any Lister Hospital notes.
Records have gone missing and key clinical events left out of Jasmines medical records
Also not present in the medical records were notes from the anaesthetist and intensive care doctors who put Jasmine on a ventilator in the hours before she was transferred. A nurse looking after Jasmine also failed to take contemporaneous notes and made no mention of the very high blood pressure.
In Dr Coulthards report on the case, he concludes it is inconceivable no notes would be made by these doctors, adding: I regret that my findings suggest that some of Jasmines contemporaneous medical observations and records may have been deliberately removed or tampered with.
Though no relevant notes were made on Jasmines medical records from her arrival at Great Ormond Street at 2pm on 5 February until 8pm the next day, Dr Coulthards analysis of the hospitals CareVue computer system nine years on has established what was missing.
The doctors target for Jasmines blood pressure had been too low for a child suffering swelling of the brain as a result of high blood pressure, Dr Coulthard found, meaning she began to show signs of shock as it fell. Staff tried to raise the pressure because of concerns over a lack of blood to her brain, but over the following hours she developed clinical signs of brain stem death including a fixed pupil in her right eye at 9am, which prompted an emergency MRI scan. Her left pupil became fixed three hours later.
None of these events, tests, observations or actions of staff was manually recorded in her medical notes.
During the inquest at St Pancras coroners court, clinicians submitted written statements and gave oral evidence. But coroner Shirley Radcliffe did not have a copy of the transfer teams records. Great Ormond Street claims the CareVue files had been provided for the inquest, but the coroner did not include them in the evidence considered on the day of the inquest, when the alleged discrepancies between the computer records and the medical notes had yet to be uncovered by Dr Coulthard.
In a written report, Dr Paula Lister, the senior consultant at Great Ormond Streets intensive care unit on the night Jasmine was admitted, told the coroner that signs of brain damage had not occurred until days later. She made no reference to the diagnosis of brain swelling or the high blood pressure readings from the transfer team, instead saying that the toddlers blood pressure had been on the low side. Though four years later, after being referred to the General Medical Council, Dr Lister told the regulator that Jasmine had arrived with high blood pressure and a suggestion of hypertensive encephalopathy, or brain swelling as a result of high blood pressure.
Jasmine suffered swelling of the brain
Dr Lister, Dr Raffles and another Great Ormond Street doctor told the coroner they had been unaware Jasmines steroid treatment could cause high blood pressure. Dr Coulthard said he found this unbelievable, adding: All three are experienced paediatricians the link between [steroids] and hypertension is extremely well-known among paediatricians in general.
Recording a narrative verdict in April 2012, the coroner attributed the death to complications from ADEM. In 2016 the GMC found the steroids could have worsened Jasmines condition and the blood pressure target set by Dr Lister had been too low. However, though it found Dr Listers care had fallen below the expected standard, the regulator, which appeared to rely solely on the medical notes and not the CareVue records, concluded that Dr Lister had not been responsible for serious harm.
The Parliamentary and Health Service Ombudsman confirmed it was assessing the case for a possible investigation. A spokesperson for the General Medical Council said: Under our legislation, we can review decisions if new information comes to light which is likely to lead to a different outcome at the end of an investigation.
Wed need significant information, and most likely supporting evidence, to be able to commence a review. If the information relates to new concerns, separate to those raised in the past, we may refer it on for fresh considerations.
East and North Hertfordshire NHS Trust, which runs Lister Hospital, has accepted failings in Jasmines treatment but not that these issues led to her death. Asked to comment on the new findings, chief executive Nick Carver said it takes any allegations of this kind very seriously and would act accordingly on any evidence. A previous investigation identified improvements that have since been made, he added.
Great Ormond Street said Dr Coulthards findings reflected differences of opinion between clinicians, especially in complex cases like Jasmines. The hospital declined to explain why the data from the CareVue system apparently differ from the medical records.
A spokesperson acknowledged that handwritten notes from an outpatient appointment in January 2011 had gone missing and a report from the transfer service had not been handed to the coroner, but denied anything was deliberately withheld or removed. A new electronic patient record system has since been introduced. They added: We are shocked and disappointed at the allegations from Dr Coulthard and we categorically deny any attempt of a cover up as described by him.
We would like to apologise again that Jasmines family feel they still do not have the answers they have been looking for, and that this continues to cause them pain. We take feedback from our families very seriously and were committed to being open and transparent when things go wrong and helping families recover from these tragic events. We know we dont always get this right.
In 2016, contributions from Independent readers helped raise millions for the Great Ormond Street childrens charity as part of a fundraising drive.