Meningitis – Still a cause for concern Protocols, vaccines, signs and symptoms, and beyond Susette Worgan-Brown Information & Projects Co-ordinator

Who we are UK charity based in Stroud, Gloucestershire  Meningitis Trust and Meningitis UK merged in 2013 Our vision is a future where no-one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives 30 years of experience  Research – £12m  Awareness – £20m  Support – £22m

Meningitis – still a cause for concern In the UK every university could experience at least one case of meningitis amongst its students within the first term Average 3200 cases of bacterial meningitis each year Meningococcal disease – in 20 years cases have ranged from 2800 in 1998 to 750 in 2014 –Approx 12% of cases occur in the 19 – 25 age group Increase in cases of Men W - 23 cases confirmed in 2009 and 119 confirmed in 2014, and was continuing to accelerate - a virulent strain with a higher death rate

Public Health England (PHE) Men ACWY immunisation advised for 14 to 18 year-olds We were already engaged with University of Bristol regarding our Meningitis Aware Recognition Mark (MARM) March 2015

Opportunity to highjack and leverage the Governments planned activity to broaden our thinking, accelerate ours plans Drive Men ACWY/student programme awareness Involve parents Encourage Men ACWY uptake Engage with students directly Develop Student Union & volunteer/fundraising networks Spring into action

Radio Networks Cornwall, Newcastle, WM, Leeds, Oxford, Berkshire, Northampton, Lancashire, Wales, Suffolk, Cumbria, Leicester, Carmarthenshire, Southampton, Bristol, London, Devon, Kent, Three Counties, Merseyside, York, Tees, Cambridgeshire, Shropshire, Stoke, Jersey, Glasgow, Cardiff

Social objectives (Parents) Build Men ACWY awareness and engage with parents Drive web traffic to parent pack download page Raise disease awareness amongst parents of teenagers Results 1000 parent pack orders Over 1 million parents saw the campaign across social channels

Off to Uni Parent Pack/support

3 Phase Student Communication Programme: Off to Uni Plan: Design: Create reality-based student support materials to include S&S cards, posters and leaflets for use by Universities. Assets available via the website and distribution. Attend RAG conference to build contacts and networks Mobilise volunteers to contact all UK universities to build distribution routes and information paths Phase 2: Universities Aug/Sept Objectives: Put meningitis on the Universities radar and encourage Men ACWY uptake Create and provide support materials in advance of students returning Build links with Student Unions & Rag committees Build network of Men Now Volunteers contact points with Universities

Men Now Micro-site University Support Pack

Student Week – Social programme Social objectives Engage Universities and colleges online Drive web traffic to Fight for Now student website Raise disease awareness amongst hard to reach student age group Results to date Over 25 Universities engaged online Contacted over 130 Universities and colleges online Over 1/2 million students saw the campaign across social channels

Awareness 2016 Parents –Promote Men ACWY vaccine, parent awareness pack Universities –Mail all Director’s of Student Services, sample pack of literature –All resources available now – complete contact form in exhibition hall Students –Student Awareness Week 28 October 2016

Teygan’s story (Mum, Ailsa) “Teygan was 19 when he went to Manchester University to study Russian. He was the middle child of three and the first to go to uni, which he was very excited about. Teygan soon made friends in his halls. We would have short text messages and phone calls to reassure us he was happy and settling in to student life, and coping with his course.”

Teygan’s Story “Although there was no general concerns health wise, he did have a cough which was noticeable when he spoke on the phone. This seemed to persist for a few weeks but never seemed to bother him too much. Whenever I brought attention to it, he would say 'well mum, everyone has a cough!’ and I was reassured by friends who had children at uni that it was probably fresher's flu – something that every student seems to get. In general everything seemed to be fine and he was enjoying student life in the city, going out at every opportunity but still giving time to his studies.”

Teygan’s Story “Teygan came home for a few days during October half term and apart from tiredness, he gave no cause for concern. He returned to uni and went out for Halloween then out again on the Saturday night. On the Sunday, he went to bed and stayed there for the whole day. A check was made on him by someone at the halls at around 8pm and it was said that he gave the impression he was feeling better, but the conversation was held through his door. He was not seen. About an hour later, he got up and managed to open his door but collapsed in the hallway. He was found by a friend and they immediately saw that he had a rash.”

Teygan’s Story “ His friend knew it was one of the signs of meningitis and rang for an ambulance straight away. But he could not be saved.signs of meningitis “ Now, with the help of my family and friends, I want to do as much as I’m able, to raise awareness of this terrible disease at university especially.” “So many people have expressed their shock to me at the sudden loss of our son to a disease that they thought was associated with the very young.”

MARM Meningitis Aware Recognition Mark –Our vision is to provide a UK wide toolkit that ensures all universities are reaching a high level of meningitis awareness provision and public health protocol to gain our Meningitis Aware Recognition Mark. Working with the University of Bristol – sharing best practice Working with Public Health England and Universities UK to update ‘Managing meningococcal disease (septicaemia or meningitis) in higher education institutions’ guidelines Hope to launch later this year