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The parents of Kieran Howard acknowledge it may have been impossible to save their seriously ill son, but say they could have been spared the harrowing ordeal of waiting for hospital transfers, then watching helplessly as he was ferried between them.
Jason and Vanessa Howard, of Fordcombe, near Tunbridge Wells, Kent, want to prevent other parents from going through the same distressing sequence of events.
But after trying to find out what happened by using the NHS complaints procedure, Mrs Howard is worried that at the inquest into her son's death, staff at the first hospital will try to blame her for what happened.
Representing the family, Richard Follis, partner and head of clinical negligence at Access Legal from Shoosmiths, said: "One of her greatest concerns now is that during the complaints procedure she was made to feel that Kieran's death was in some way her fault.
"It was suggested she failed to pass essential information to medical staff. This response to a bereaved family's desire to find out why their 10-year-old died has added insult to injury."
Kieran suffered a bleed into his brain, which was not diagnosed by his local hospital. Instead, doctors and nurses sat with him for seven hours waiting for an ambulance to arrive to take him to a specialist London neurosurgical unit.
When the transfer team arrived – five hours later than first predicted – they immediately recognised Kieran had suffered a brain bleed and could die. Meanwhile, local hospital staff had been unaware of his critical condition, and told his parents he would be home by the weekend, even sending them home to get clothes for him.
"This response to a bereaved family's desire to find out why their 10-year-old died has added insult to injury." - Richard Follis, Partner
Once at London's St Thomas' Hospital, Kieran was brain scanned. He then lay on a trolley in the middle of a busy Saturday night A&E department waiting for a further transfer to the capital's King's College Hospital, where he could be treated. It took a total 15 of hours to get Kieran from his home to an operating theatre.
He died three days later, never regaining consciousness.
His parents' efforts to establish exactly what had happened resulted in mounting frustration as their questions were not fully answered. Only after the intervention of their MP , who chaired a series of House of Commons meetings with health officials, did they feel their concerns were taken seriously.
Jason and Vanessa have called for hospital staff to make sure parents are told what exactly is happening, and said they should be kept informed about discussions concerning a patient's condition. They also believe they should have a say in decision-making. The local hospital appeared quite unaware how seriously ill their young patient was.
Mr and Mrs Howard said it is also crucial that NHS Trusts communicate and respond to parents' queries in a timely, considerate and understanding manner, with open and honest answers in the days following the death of a child.
Richard Follis said: "Their life has changed completely. From being a close, active family that used to live for weekends, holidays and spending time together, they can no longer enjoy the family activities once shared with Kieran.
"They know that his life was probably beyond saving, but if his condition had been assessed more thoroughly and quickly he and they would not have been pushed from pillar to post. They probably would not be suffering as they are now."
After paramedics arrived at the family's home, they had a choice of hospitals to which to take Kieran: Kent & Sussex Hospital, in Tunbridge Wells (trauma cases); or Pembury Hospital (medical cases). They are just over three miles apart.
"That choice was critical," said Follis. "Pembury had a paediatric unit, but no scanner. Kent and Sussex had a scanner, but no paediatric unit. He was taken to Pembury, where little could be done for him."
Mr and Mrs Howard believe having two hospital sites serving the Tunbridge Wells area slows down ambulance paramedics' decision-making.
Since Kieran's death, all children who have a reduced level of consciousness are taken straight to Kent & Sussex Hospital.
Follis said the parents also question why an air ambulance was not used to transfer Kieran from Kent to London.
He said key questions raised by the case include:
A three-day inquest into Kieran's death is scheduled to open at Southwark Coroner's Court, at 10.30am, on Wednesday 25 November.
Saturday 29 March
Kieran wakes complaining of a mild headache.
11.15 - 11.30am
He sneezes and very soon afterwards screams from headache pain which subsides quickly, before developing vomiting and diarrhoea.
Mother Vanessa calls SUSDOC (The Association of Kent and Sussex Doctors on Call), which arranges for nurse to telephone her back. When SUSDOC nurse calls back she advises that an ambulance be called.
Ambulance arrives at home in St Peter's Row, Fordcombe, Tunbridge Wells, Kent.
Paramedics give Kieran a Glasgow Coma Score (GCS) of 14 (out of a maximum 15).
2pm - 2.30pm
Arrives Pembury Hospital, Pembury, Kent (Maidstone and Tunbridge Wells NHS Trust. Kieran's GCS is now just 4 (3 being the lowest), indicating a severe brain injury.
Pembury Hospital calls South Thames Retrieval Service (STRS), which moves children from outlying hospitals to those in central London.
STRS says it is very busy and cannot move Kieran immediately.
Seven hours after being called, STRS ambulance arrives to transfer Kieran, who has been on a ventilator.
Kieran ready to be transferred.
Sunday 30 March
Arrives at Evelina Paediatric Intensive Care Unit, St Thomas' Hospital, London (Guy's and St Thomas' NHS Foundation Trust), after a journey taking just under one hour.
*Please note arrival and journey times: clocks moved forward marking start of British Summer Time.
Scan reveals raised internal cranial pressure.
Attempts made to find hospital able to operate on Kieran.
Kieran transferred to King's College Hospital, London (King's College Hospital NHS Trust).
Arrives King's College Hospital, after 30min journey.
Attempts made to relieve cranial pressure, but Kieran has probably been irreparably brain damaged for several hours by this time.
Wednesday 2 April
Kieran pronounced dead.
Post-mortem examination reveals massive bleed into the brain. Tumour deep in the brain is believed to have bled after Kieran sneezed on the morning he woke up with a headache.
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