An update from our Head of Communications, Advocacy and Support:
I was very proud to sit alongside the families I joined today at a meeting with Secretary of State for Health, Jeremy Hunt. They were incredible. Sharing personal stories of family tragedy is extraordinarily tough, yet they spoke to Mr Hunt with determination and demanded action.
In response, he apologised for the failings they had been faced with, recognising the health service had let them down.
I have the privilege of knowing several members of the families and I know apologies from government won’t change what has happened to their lives. The tragic deaths of Layla, George and Izzy can’t be undone. But their stories have shown Jeremy Hunt first-hand that more action is urgently needed so that no one else has to go through what they have.
Because of the families continued efforts, and the campaigns MRF has championed on behalf of all everyone affected by meningitis and septicaemia, Jeremy Hunt committed to setting up a working group - including representation from the families, charities and a range of experts - to make recommendations to improve awareness, boost training of health professionals and ensure effective diagnosis.
In addition, we continued our call for wider access to vaccines to protect the whole population and to change the unfair rules that the government uses to decide whether to fund vaccines. These unfair rules undervalue the benefits of vaccines and give those holding purse strings an excuse not to fund them.
Jeremy Hunt asked for evidence to show that these rules are unfair to be sent to him directly, and we agreed to supply it as we have worked in-depth to understand and make the case for changes to the rules. We look forward to his response.
When you consider the fact that these unfair rules are used to weigh up the benefits of vaccines but do not even consider the impact that losing a child has on parents and families, you can see why the issue makes us so angry. Having families there to show Jeremy Hunt the impact of meningitis on their lives was both touching and powerful.
The public has a right to know what’s going on and we now need an open and transparent process to ensure the best access to vaccines. The outcome of this process could have huge ramifications for meningitis and all vaccinations. Vaccine decision making needs to be fair and vaccines need to be recognised for the true value they provide.
Thank you again to these brave families and to everyone who demands more to defeat meningitis.