The UK government has today [2 July 2018] published a report recommending ways to improve the diagnosis and treatment of meningococcal disease. The recommendations have been put forward by a working group which included three families affected by meningococcal B meningitis or septicaemia (otherwise known as sepsis), representatives from meningitis charities and a range of health experts.
Meningitis Research Foundation (MRF) joined the families to meet with Jeremy Hunt, the Secretary of State for Health and Social Care, in November where they bravely highlighted the devastating impact of meningitis and sepsis. Kirsty Ermenekli recounted what happened to her daughter Layla-Rose who died aged six; Nicole Zographou shared the story of her brother George who died aged 18; and Paul Gentry spoke about his daughter Izzy who died aged 16.
At that meeting, Jeremy Hunt apologised to the families for the failings they had been faced with, recognising that the health service had let them down. All three had highlighted issues of late and missed diagnosis.
The group agreed to the formation of a meningococcal working group, in which MRF and the three families and experts discussed recommendations to improve awareness of the signs and symptoms of meningococcal disease among parents, young people and healthcare professionals with a view to improve early diagnosis and treatment.
The report can be found here and the recommendations are below.
Kirsty Ermenekli said, “Telling our story at the working group meetings was not easy. It’s still difficult to talk about what happened to Layla-Rose. She was so badly let down and she should have been diagnosed far quicker. I hope that by bringing this to the government’s attention it will mean that other children aren’t let down like that in future. I will keep fighting for it and I look forward to seeing positive changes happen.”
Paul Gentry said, “It was an honour and a privilege to have been invited by Jeremy Hunt to participate in the meningococcal working group and to be part of something that will hopefully make a difference in the battle against meningitis. Having not participated in anything of this nature before it was very reassuring when I found that the expert representatives from the Department of Health, NHS, Royal College of Medicine and Public Health England were very receptive to the issues raised, passionate about how to overcome these issues and just as importantly showed compassion to those that have been affected by meningitis. I am certain that the publication of this report will have a positive outcome”.
Nicole said, “The working group was useful and an important tool for future change. The discussions were full, I felt listened to and there were experts in the room who cared. However what matters for me the most is how this report is filtered and used moving forward and it is not tokenistic. I also feel it’s important to keep the families involved in the next steps. We have understood the why, but what really matter is the how.”
Vinny Smith, Chief Executive of MRF said, “Meningitis and sepsis are deadly diseases and rapid diagnosis give the best chance of survival. It’s excellent that some practical recommendations are now being put in place that could ultimately improve outcomes for people affected by the disease.
“It’s particularly reassuring that the report recommends that any patient who has been assessed because of concerns about infection, who is being sent home, should be given safety-netting information with details of what to look for and what to do if the symptoms deteriorate. Our research shows that around 50% of children with the most common cause of bacterial meningitis are turned away by their GP at first visit so it’s vital that people know when to go back and get urgent medical help.
“Vaccines are the only way to prevent meningitis and we are still calling for vaccine decision making to be fairer and vaccines need to be recognised for the true value they provide.”