‘We lost our beautiful boy to Meningitis W’
Tim Mason was never invited for the student jab that could have saved him. His parents share his story with Margarette Driscoll
Fiona Mason knew her son might be dying, but she could not bear to say goodbye. Tim’s temperature was raging, his heartrate was up, he was frightened and his organs were beginning to fail. As doctors prepared to put him into an induced coma last March, in a final attempt to save his life, she could only do “that Mummy thing” and reassure him. “I promised we would stay with him every moment and the whole family would be there when he woke up, because that was the only way to comfort him,” she says.
Only the previous evening, Tim, 21, a lively young man with “an opinion on absolutely everything”, had been sitting at the dinner table with his parents, Gavin, a furniture restorer, and Fiona, PA to Peter Estlin, the next Lord Mayor of London. He had been unwell for a few days – a bit of a sore throat and earache – and went to bed early. Soon after midnight, Gavin and Fiona were woken by him vomiting “more violently than we have ever seen”.
Fiona sensed something was wrong and drove Tim to the cottage hospital near their home in Eridge, East Sussex. By the time they arrived, he had a high temperature and could barely walk.
They were advised to go to Tunbridge
Wells Hospital, part of the Maidstone and Tunbridge Wells Hospital Trust. There, after a long wait, Tim was diagnosed with gastroenteritis, given fluids and paracetamol, and sent home.
In fact, he had contracted Meningitis W, a deadly strain of the disease on the rise among the young, which can lead to sepsis and ultimately be fatal.
From the moment he arrived at A&E – and even when he was discharged – Tim was displaying symptoms that should have triggered a sepsis alert. The hospital has admitted failure on five aspects of his care and an inquest last week concluded that “had he been correctly treated, he probably would not have died”.
This is not a sad-but-inevitable story about NHS underfunding or understaffing. Everything that should have been in place at that hospital to prevent Tim’s death was there: yet the system for passing concerns between the medical teams did not work. Nor did the national initiative to vaccinate young people against Meningitis W, known as “freshers’ flu” for its prevalence among the university population. Tim, an electrical engineering student, was never invited for a vaccination and his death has revealed worrying gaps in the scheme to contact young people at risk.
The coroner, Roger Hatch, was so concerned by what he heard last week that he has demanded action from both the hospital trust and NHS England, under Regulation 28, which allows a coroner to intervene when an inquest flags up a risk that other, similar deaths are likely to occur.
“We lost our beautiful boy and that has been dreadful, but it is intolerable to think it might happen to someone else,” says Fiona. “This is not a fix that costs a penny, it’s just making systems work that are already in place.”
Cases of Meningitis W have risen sharply in recent years. Like other strains, it causes inflammation of the tissues surrounding the brain and spinal cord – but it can be difficult to detect, as it does not cause the characteristic rash.
In 2015, the Government began a programme intended to vaccinate 18- to 25-year-olds with the newly formulated MENACWY vaccine, which protects against a number of strains of the disease. Students were
targeted first as the bacteria, carried naturally by some people, spread easily in university halls, where large groups of young people were living in close proximity (the programme is now being extended to include 14- to 18-year-olds).
The W strain has a higher death rate than other forms of meningitis, and can leave survivors with lifelong problems, including brain damage, amputations, sight and hearing loss.
Tim was 18 when the vaccine was introduced, firmly within the target group, but missed out as he was studying part-time, while working at a firm building robots. He should have been invited for vaccination by his GP surgery, but that did not happen.
We are gathered in the sitting room of the Masons’ cosy family home, designed and built by Gavin and surrounded by beautiful countryside. The house “used to be full of laughter and life but now it is quiet and we are all struggling,” Fiona says. The impact on Tim’s older brothers, Alex, 27, and Nick, 23, has been devastating. Nick is back living at home, having temporarily dropped out of a Master’s in geophysics at Keele University, due to stress.
When Tim arrived at Tunbridge Wells Hospital, around 4am, he was made to wait to see a triage nurse. In retrospect, Fiona says, driving him was a mistake: “If he had arrived by ambulance he would have been seen by a doctor straight away. In rural areas like this, we are encouraged to drive to hospital in an emergency, but no one realises there is a penalty if you do that,” she explains.
The triage nurse gave Tim a “patient at risk” (PAR) score based on his temperature, heart rate and blood pressure, which was written on the front of his notes. The PAR score is designed to raise a red flag for suspected sepsis and there is a box which should be filled in if the patient is to be given antibiotics. But the nurse thought she was not allowed to fill in the box, as she could not prescribe any antibiotics herself. So it was left blank.
Tim was then sent to an area of A&E that does not have a designated doctor from midnight to 8am, only cover. It was now after 4am. Neither the nurse nor his family know who saw his notes next – even after two internal hospital inquiries and an inquest – but someone prescribed fluids and paracetamol. Several staff probably handled the notes, but no one triggered the sepsis protocol.
At 7am, Tim was seen by a doctor who had qualified just a year before. On the advice of a senior colleague, he discharged him: he told the inquest last week he wished he had not done so.
At home, Tim’s condition deteriorated. He said he “felt like he was dying” and at 2pm Fiona rushed him back. Again he was made to wait, but was clearly so ill that other A&E patients gave up their seats so he could lie down, and urged Fiona to take their place in the queue. This time, the seriousness of his situation was grasped. Doctors fought frantically, but failed to save his life. He died at 9.46pm.
His parents believe he would never have contracted Meningitis W if he had been given the vaccine, and his is unlikely to be an isolated case – many other young people will not been invited to have the jab.
The inquest revealed that a major software provider to GP surgeries – designed so that when a patient visits their GP, the doctor sees a reminder on screen that they are due some procedure or other – had included Meningitis W, but the alert was inactive, meaning that individual GP surgeries had to choose whether to upload it and know how to do so.
The move was meant to avoid supposed “alert fatigue” among doctors, but it means that hundreds of young people who should have been invited to have the vaccine may have been missed. Tim’s surgery had no idea it should have activated the alert. It had independently decided to contact its 60-or-so patients in the target age group by telephone, but had no record of having called him. Many other GP surgeries are probably ignorant of the alert, so provision of the vaccine is patchy. Or, as Gavin says: “It’s a spectacular failure.”
The Maidstone and Tunbridge Wells Trust and NHS England now have to respond to the coroner’s call for action. The Masons can only hope no one else’s child dies in the meantime.
‘The house used to be full of laughter and life but now it is quiet and we are struggling’