This group was formed in January 2018 by the then Secretary of State for Health & Social Care, Jeremy Hunt, to assess what more could be done to improve the early diagnosis and treatment of meningitis, alongside raising awareness of the disease amongst parents, young people and healthcare professionals.
It comprised experts from the healthcare field, meningitis charities and, most importantly, families who had been affected by meningitis.
In an emotional meeting, the families – Paul Gentry, who lost his daughter Izzy, Nicole Zographou, whose brother George died, and Ricky and Kirsty Ermenekli, whose lost their 6-year-old daughter Layla Rose – shared their meningitis experiences with Mr Hunt, explaining how each family felt the health system had failed them.
The group, who met three times between January and April 2018, made a total of 12 recommendations; four of which were general recommendations surrounding diagnosis and treatment, and eight aimed at specific organisations, including meningitis charities.
Now Professor Jonathan Van Tam, Deputy Chief Medical Officer, has written to the members of the Meningococcal Working Group to say they have published a summary of responses from ourselves and other organisations to the 12 recommendations.
Responses are positive
“I am very pleased that the responses are largely positive, with all noting a range of work they are doing to improve the recognition and treatment of both meningococcal disease and septicaemia,” he says. “I am sure that bringing this information together into one report will be extremely useful to support prompt treatment and prevent further complications and deaths.”
“I would like to take this opportunity to thank the families involved in this working group, as their bravery and commitment to make a difference has been vital in helping experts determine the recommendations.”
In his foreword to the report, Meningococcal Working Group report: summary of responses to recommendations, Professor Van Tam adds, “The recommendations of the Working Group report are already having an impact."
“Since they were published, meningitis charities, Public Health England and NHS England have been working together to raise awareness of meningitis and septicaemia, to improve the communications around cases and to ensure parents know how vaccination can help to prevent disease."
Collaboration to continue
“I would like to see this vital close collaboration and knowledge sharing between organisations continue.”
In particular Recommendation 7, aimed at the meningitis charities, calls for charities to:
- Work with PHE as it reviews what messages should be included in its vaccination-related literature;
- Consider strategies to make parents and young people aware of, and direct them to, the literature and resources already available at the right time and work with PHE to seek to deliver these strategies;
- Consider how to improve their alignment with broader system-wide efforts to reduce septicaemia and recognise it early, including working with the Cross-System Sepsis Board; and
- Work with the Royal Colleges as needed when they review their sepsis-related training material.
Full support from Meningitis Now
This latest publication has been welcomed by Dr Tom Nutt, our chief executive. He said, “We fully support the recommendations and have already made a start on implementing them."
“But the publication of this set of responses has taken too long and we cannot afford to lose momentum in implementing potentially lifesaving changes to the diagnosis and treatment of meningococcal disease."
“We will continue to press for the current Secretary of State for Health & Social Care, Matt Hancock, to use his authority to ensure that health bodies do not resile from their responsibilities to take action."
“We will continue to work with partners to ensure the wishes of the families who took part in this group are met and to hold health authorities to account. We must ensure that the families’ bravery in raising awareness will lead to transformative changes in the fight against meningitis.”