Improving meningitis diagnosis report: three families speak out

Report on improving meningitis diagnosis is published thanks to three bereaved families

A government report aiming to improve outcomes for people affected by meningococcal meningitis, septicaemia or sepsis has been published, and includes a set of clear actions from the organisations responsible for implementing change. 

In November 2017, three families tragically affected by meningococcal B meningitis or septicaemia met with Jeremy Hunt, the then Secretary of State for Health and Social Care, and bravely highlighted the devastating impact of meningitis.

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 (pictured) who died aged 16. All three highlighted issues of late and missed diagnosis.

A Meningococcal Working Group - which included the three families, representatives from meningitis charities and a range of health experts - put forward 12 recommendations about improving diagnosis and treatment for a number of organisations, such as the NHS England and Cross-System Sepsis Board, Public Health England, and the Royal Colleges.

Since being published in July 2018 the recommendations have been under review by these organisations and their responses have now been published. 

The report states that all the main organisations welcomed the opportunity to respond, and are committed to ensuring that improvements are made in raising awareness of the symptoms, and treatment of meningococcal disease. There was broad agreement about the need to work collaboratively to improve outcomes for patients.

Kirsty Ermenekli from Oldham said, “Layla-Rose went downhill so rapidly after showing the first symptoms of meningitis - head and belly ache, tiredness, and a high temperature. It all happened so quickly that we never had a chance to say goodbye. It’s important for doctors to diagnose this disease as quickly as possible so I really hope the actions in this report will mean that no other family has to go through what we have. I will keep fighting for it.”

Paul Gentry who lives in Swindon said, “It’s good to see some solid actions agreed and published as a result of the meningococcal working group. No parent should have to lose a child to a disease that can be prevented through vaccines and treated if caught early enough. I am proud to have taken part in the working group in memory of Izzy and I’m confident this will make a difference in the battle against meningitis.”

Nicole from Bristol said, “Seeing some clear actions on paper gives us hope as a family that taking part in the working group will mean positive changes in diagnosis of meningitis. Quick diagnosis is absolutely key in fighting this disease. It’s encouraging to see so many organisations taking seriously our recommendations and putting plans in place. Whilst it wasn’t easy taking George’s story to government, I’m proud of our family for doing something in his memory that will make a difference." 

Vinny Smith, Chief Executive of MRF said, “Meningitis and septicaemia are deadly diseases and rapid diagnosis give the best chance of survival. It’s excellent that some clear actions have now been agreed by the full range of organisations that have the means to improve outcomes for people affected by the disease.  

“It’s particularly reassuring to see actions that will help ensure that any patient who has been assessed because of concerns about infection, but who is being sent home, should be given safety-netting information with details of what to look for and what to do if 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.”

In a letter to MRF, Professor Van Tam, Deputy Chief Medical Officer said, “I wish to reiterate my thanks to the families whose strength in coming forwards has highlighted an important issue and has made what I know will be an important difference to the recognition and treatment of sepsis and meningitis.”