New report will improve outcomes for people affected by meningococcal disease

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.”

Recommendations

Recommendation 1 - Approaches to the recognition, early diagnosis and treatment of meningococcal disease should be included under the umbrella of the cross-system Sepsis Board. The Board should consider how to include appropriate input from the meningitis charities and incorporate this into their on-going work programme.

Recommendation 2 - The Sepsis Commissioning for Quality and Innovation (CQUIN) should continue for the foreseeable future. In addressing screening for sepsis and timely initiation of treatment, the CQUIN will impact on the recognition and early diagnosis of meningococcal disease, potentially at a stage when the disease is not readily distinguishable from other forms of sepsis as meningococcal disease.

Recommendation 3 - To identify, or rule out, sepsis there needs to be:

• a broader culture of routinely using structured observations and recording of physiological measurements such as respiratory rates, perfusion, level of consciousness in all tiers of medical practice, to guide recognition of possible sepsis;
• implementation of the National Institute for Health and Clinical Excellence (NICE) fever guideline in children under five years of age, with evidence available in patient notes to demonstrate to Care Quality Commission (CQC) during inspections that this guideline was being systematically implemented by healthcare professionals in primary and secondary care.

Recommendation 4 – Safety netting documentation (in addition to verbal instruction) should be given to any patient (particularly parents/carers of a child or teenager), who has been assessed because of concerns about infection and is being sent home. This information should:

• set out what to look for in terms of deterioration or causes for concern for the child in question; empower patients and carers with appropriate knowledge so they can seek further advice and assessment if concerned.
• It should be recorded in the patient’s notes that this information has been provided and there should be mechanisms in place to monitor and audit that this is taking place so that, for example, the CQC could consider this metric during inspections of acute trusts and primary care.

Recommendation 5 - Organisations providing first aid/medical services at mass gatherings targeted at teenagers and young adults (especially those that span a number of days) should be able to demonstrate that their staff/volunteers are appropriately trained to recognise the signs and symptoms of meningococcal disease and sepsis and CQC should check this as part of the registration and inspection process.

Recommendation 6 – Public Health England (PHE) should:

• review its general leaflets and literature on vaccination (including information on signs & symptoms of meningitis & septicaemia and vaccination-related messages) in partnership with meningitis charities, test revised literature with young people and parents and include links to meningitis charity info pages;
• review the template letters sent out following a case or cluster of meningococcal disease, to ensure information about signs & symptoms and action required is clear, testing this with the meningitis charities and a sample of families and healthcare professionals, include links to the meningitis charity website for further information and produce a checklist of standard points to consider for use by the local authors of these letters;
• engage with meningitis charities at the earliest stage possible if there is a cluster or outbreak of meningococcal disease to facilitate sharing messages and providing advice and support to the local community.

Recommendation 7 - Meningitis charities should:

• 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 sepsis and recognise it early, including working with the cross-system Sepsis Board;
• work with the Royal Colleges as needed when they review their sepsis-related training material.

Recommendation 8 - The Royal Colleges represented on the Group should:

• ensure that when relevant literature, tools and training packages are scheduled for review they:
• consider if and how to promote the message to ‘listen to parents, carers and family members’ and that ‘parents know their child best’ and to record parental views in the patient’s notes, where that was not already done;
• engage with the meningitis charities for ideas on content and include a link to the charities’ websites;
• take on board feedback from the cross-system Sepsis Group.
• consider having a champion (or equivalent), if they don’t already have one to drive work forward on the recognition and diagnosis of sepsis;
• consider whether they should recommend to their individual membership that they consider the value of additional training in sepsis identification and whether this needs to be achieved by all clinical members or specific subgroups.
• reflect on how best to promote a culture where staff feel empowered to challenge within and between professional groupings and across different levels of seniority; and where staff are also open and responsive to challenge and to learning from mistakes and near misses whether via training or other means.

• facilitate and support an open and learning culture within healthcare settings;
• support the dissemination and implementation of learning strategies that are most likely to bring about behavioural change.

Recommendation 10 - Health Education England (HEE) should:

• facilitate and support an open and learning culture within healthcare settings;
• support the dissemination and implementation of learning strategies that are most likely to bring about behavioural change;
• engage with sepsis champions (or equivalent) in Royal Colleges and provide advice and information as needed.

 Recommendation 11 - CQC should look for evidence that:

• the NICE fever guideline in children under five years is being systematically implemented by healthcare professionals in primary and secondary care, in particular that safety netting information is being given to parents and carers;
• organisations providing first aid/medical services at mass gatherings targeted at teenagers and young adults (especially those that span a number of days) use staff/volunteers who have been appropriately trained to recognise the signs and symptoms of meningococcal disease and sepsis.

[Note - The CQC is an organisation for whom a recommendation is made that was not represented on the Group. It has since been identified as an organisation with a key role to play in improved assurance of early diagnosis and treatment of sepsis and meningococcal disease and a recommendation is therefore directed to it].

Recommendation 12 - NHS England should:

• Ensure that the cross-system Sepsis Board considers this report in full and reports back to the Secretary of State (SofS) on its conclusions and action it plans to take as a result within a timescale set by the SofS;
• Liaise with other organisations for whom this report has also made recommendations, to ensure their actions are considered and built into any wider plans related to sepsis as appropriate.