“We now have a set of clear guidelines that we can all sign up to that will save lives and support those living with the after-effects of this disease – it’s a significant turning point for how we treat meningitis in this country."
But we’re also cautioning that failure to fully implement the new National Institute for Health and Care Excellence (NICE) guidelines will be an important opportunity lost.
Our chief executive, Dr Tom Nutt, said: “At Meningitis Now we know only too well the pain and devastation caused by this disease and every day we hear more stories of its impact on individuals and families.
“We now have a set of clear guidelines that we can all sign up to that will save lives and support those living with the after-effects of this disease – it’s a significant turning point for how we treat meningitis in this country.
“But any improvements will only happen if the rhetoric of the guidelines is matched by the reality of the practice on the ground – let’s all make sure it is.”
Reduce death and disability
The guidelines, Meningitis (bacterial) and meningococcal disease: recognition, diagnosis and management, aim to reduce death and disability by helping healthcare professionals to recognise bacterial meningitis and meningococcal disease and treating it quickly and effectively.
We worked closely with NICE to ensure that the new guidelines met the needs of people who have experienced meningitis. This led to changes such as the recommended provision of details of meningitis charities early in a hospital stay and referral for support to include family members and carers as well as those who contracted meningitis.
Tom added: “We frequently hear about the wider impact of meningitis and how it affects not just the individual but their wider family and community too. We are pleased to see that family members and carers are now included in those eligible for support and that details of how we as a charity can help those affected will be shared.”
Longer-term follow-up
Other areas of the guidelines we welcome include longer-term follow-up for babies, children and young people, to identify any after-effect issues earlier, and improved safety netting, where those who have been assessed by a health professional as unlikely to have meningitis are provided with clear information about what to do if new symptoms develop or existing symptoms become worse.
We’re also pleased to see included:
- For clinicians to strongly suspect bacterial meningitis in people who have the red flag combination of symptoms. These are headache, neck stiffness and an altered level of consciousness or cognition (including confusion or delirium).
- An emphasis on checking the whole body and conjunctivae (thin membrane that covers the eye) for a non-blanching rash, which can be difficult to see on brown, black or tanned skin.
- An altered level of consciousness in young people or young adults should not be incorrectly assumed to be caused by alcohol or substance misuse, and that bacterial meningitis should not be missed as a result.
Identify issues earlier
Tom added: “We are only too well aware that many complications following meningitis are not immediately apparent and introducing longer-term follow up will hopefully help to identify any issues at an earlier stage.
“We are pleased to see also that for the first time the guidelines will cover young people and adults, not just children under 16 as the previous guidelines did. It’s important that it’s acknowledged that meningitis can affect anyone at any time.
“Overall, the additions to the section on Information provision, aftercare and support are very encouraging and include updated guidance on preparing and planning for discharge, and care after hospital discharge. If implemented properly they will alleviate many of the issues around lack of follow up and information for adults after discharge highlighted in our recent report with the Picker Institute on follow-up and aftercare.
Our supporter Sam Jones, who contracted meningitis in 2019, has also welcomed the new guidelines.
Sam told us: “After I came out of hospital I wasn't really given any support or explanation as to what I went through. I felt so in the dark because none of the doctors could tell me what happened. So, I went looking for my own research, which is where I found out about Meningitis Now. With the information from Meningitis Now and the people I've interacted with through their forums I now understand a lot more about what I went through. I know I am extremely lucky to have been left with my life and minimal after-affects and am grateful every day for that.”
The full guidelines, which for the first time include young people and adults (previously the guidelines were for those under 16 only) do not cover all strains of meningitis. Excluded are viral meningitis, the most common form, neonatal, fungal and TB meningitis. The guidelines can be found at here.
