Annual Review

2013 /2014

saving lives,rebuilding futures

We are a new charity, with more than 30 years’ experience. Formed in 2013 by the merger of

Meningitis UK and Meningitis Trust, we provide

a powerful, united voice for people fighting

meningitis in the UK.

Who we are

9,000

people accessed our services

£455,000

new research grants

Our vision

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.

Our mission is to:

Provide a powerful, united voice for individuals,

families, communities, experts and professionals who

know just how devastating meningitis (and

septicaemia) can be.

Save lives by funding research into vaccines and

prevention.

Rebuild futures by providing dedicated

support to people living with the

impact of meningitis.

Reduce the impact of the disease by

raising awareness; empowering

people with the knowledge and

information they need to get urgent

medical attention if they suspect

meningitis.

Raise the funds we need to deliver our vision; inspired by the individuals and families at the

heart of our organisation.

We are ambitious about what we can achieve.

financial support grants

£270,000Some achievements:

Foreword

I am delighted to welcome you to Meningitis Now’s

2013/14 Annual Review. It covers our first full year as

a merged charity; bringing together two organisations

with a strong history and experience.

more engagement on

social media

80%increase in web & email helpline

support

42% 1st

believe & achieve weekend for young

people

teacher training sessions with

Child Brain Injury Trust

3

In this year of transition our priority has been to remain

true to the objectives of both charities. We may have a new

name but our goals remain the same – to fight meningitis

through research, awareness and support.

As Meningitis Now, I am astonished by what we’ve

achieved, including:

Forming a new charity and launching a new name.

Campaigning successfully for one of the most important

vaccines in meningitis history.

Awarding £455,000 in December 2013 for four new

research projects – that means we committed over £1m

to research in 2013.

Supporting more people whose lives have been touched by

meningitis; with 15% more referrals to counselling, 15%

more home and hospital visits and double the number of

people using our Health Unlocked Forum.

There is still so much left to do. We must fight the

complacency that says meningitis is beaten; it is not.

On behalf of the Board of Trustees I want to thank

everyone who helps us, whether individuals,

families and organisations - we simply could

not achieve what we do without you. You are

the people we exist for and we are grateful

for your continued support in reaching

towards our shared vision.

Alastair Irvine

Providing a united voice for those affected by

meningitis is something we passionately believe in.

In January 2013, the European Commission licensed a

vaccine to protect against meningococcal group B disease

(Men B). It was the result of 20 years’ research and

development; and a major step forward against a disease

that causes 50% of bacterial meningitis cases in the UK.

We launched our Beat it Now! campaign in direct response

to the licensing, calling on the Government to introduce

the vaccine into the UK’s childhood immunisation schedule

without delay.

In an interim statement issued in June 2013, the Joint

Committee on Vaccination and Immunisation (JCVI) said

they wouldn’t be able to recommend it as it was unlikely

that the vaccine would be ‘cost-effective at any price’.

We responded by highlighting our concerns and providing

A united voice

Key vaccine developments

information which needed to be

taken into account. We then

stepped up our campaign

galvanising supporters, lobbying

politicians and raising the profile of

the vaccine in the press.

In March 2014 the Department of

Health announced that it will introduce

the vaccine into the childhood immunisation

schedule, once the cost is agreed with the

manufacturers.

We know we made a big impact. Beat it Now! was our first

campaign as Meningitis Now and our united voice has

made a real difference. We will not stop campaigning until

the first dose is given, for free, on the NHS.

delivered 20,000- signature petition to

Downing Street

Oct 13 vaccine

available privately

Dec 13 Feb 14

Action day held at Westminster and delivered 36,000-signature petition to Department of Health

JCVI "not cost- effective at any

price"

June 13 Sept 13

Meningitis Now submitted formal response to JCVI

Campaign highlights:

Tommy’s story

Two-year-old Tommy is the face of our Beat it Now! campaign. Left severely disabled after contracting

meningitis and septicaemia when he was just five

months old, Tommy had a lifesaving operation.

Doctors amputated both of his legs, his right hand

and the fingers on his left hand - he was given just a

5% chance of survival.

But brave Tommy fought back and, with his parents Julie

and Dean, he delivered the 36,000-signature petition on

our behalf to Jeremy Hunt at the Department of Health.

“We strongly support the Beat it Now! campaign. We

don’t want anyone else to go through what we have – it

still impacts on us now and will for life. This vaccine must

be free to all because it will save so many lives and stop

others from suffering like Tommy.”

Julie Tuckley, Tommy’s mum

vaccine recommended

March 14

3+ million people engaged on social media

20 million+ people reached through

publicity

150 MPs, AMs, MSPs and MLAs joined the fight

of Bristol – a laboratory named

after his son who died from

meningitis in 1982, aged just 14

months.

Our research programme remains as

important as ever, searching for new

vaccines and seeking ways to improve

the effectiveness of those that already

exist. In 2013 we committed over £1 million to

research. As of 31 March 2014, we had 13 projects

at specialist research facilities across the UK.

Prof. Ray Burrow said:“It is vital that research into

meningitis and its prevention continues, so that more

people can be protected. I wonder where the research

would be today if it weren't for charity funding .”

Because meningitis can kill in hours and its

symptoms are notoriously difficult to spot, research

is needed to stamp out the disease and fight back

against its after-effects.

We have played a significant role in the introduction of

three highly successful vaccines preventing meningitis -

Hib, meningococcal group C (Men C) and pneumococcal.

Prevention through vaccination is the only way to protect

against a disease as unpredictable and devastating as

meningitis.

Our Executive Founder Steve Dayman’s personal

commitment to the search for vaccines over the last 30

years has been remarkable; raising millions of pounds to

support preventative research and establishing the

Spencer Dayman Research Laboratories at the University

Our research

Research projects

started Apr 2013 – Mar 2014

Prof Paul Langford Imperial College

London Meningococcal vaccine

development

Prof Andrew Heath University of Sheffield Meningococcal vaccine

development

Prof Paul Heath St George’s University

of London Group B streptococcal

disease surveillance and attitudes to vaccination

during pregnancy

Dr Dean Everett University of Liverpool Pneumococcal vaccine

development

Emma’s story

Emma and her parents were looking forward to

taking her son, 10-month-old George, on his first

holiday abroad. But their trip turned into a nightmare

when George became ill and sadly died soon after

they arrived.

Since then Emma, her family and friends have been

tirelessly raising money in George’s memory. Their

Forever Fund, started in October 2013, has already raised

over £30,000 and is funding vaccine research to stop

further terrible loss happening to others.

Emma is an inspiration. She said: “It comforts me to raise

money in memory of George because it helps keep his

memory alive. I find it gives me something positive and

“We aim to raise as much money as

we can to fight this horrible disease.”

Research projects completed

Apr 2013 – Mar 2014

Prof Nigel Saunders

Brunel University Meningococcal

vaccine development

Dr Shamez Ladhani

PHE Colindale Establishing the true

burden of meningococcal disease

(jointly funded with MRF)

Dr Christine Rollier

University of Oxford Meningococcal vaccine

development using viruses

rewarding to focus on and

what better tribute to his

short life than to be able

to save others, through

research, in his memory.

There’s no better way to

honour him.

“Meningitis is an awful disease

and we have to do what we can

to make sure it is eradicated.”

Prof Jon Sayers

University of Sheffield Meningococcal vaccine

development

Prof Chris Tang University of Oxford

Meningococcal vaccine development

Meningitis changes lives. We cannot change what

happens when meningitis strikes but we can, and

do, help people rebuild their lives, through our

emotional, practical and financial help.

People find our support in different ways. This year we

have seen a big increase in people coming to us via the

website, through social media and on our Health Unlocked

Forum. We’ve changed our support to reflect this and our

helpline team responds through Facebook, Twitter and

online as well as on the phone; supporting sufferers and

ensuring that no one faces meningitis alone.

Community-based support is still a major part of what we

do; visiting people in their homes when they most need

help and enabling them to share experiences with others.

Providing support

Key vaccine developments1million

visits to our website

661

copies of My Journal issued

times as many unique visits to

our Health Unlocked Forum

5

We have brought families together at

specially organised days throughout the

UK and helped as many as we can with

financial grants for things like adaptations,

funerals and hospital visit expenses.

We’ve also been very successful in

developing relationships with health, social

care and educational professionals; supporting,

advising and training them in meningitis, its

impact and the unique range of support

we offer.

Our financial and emotional support is highly regarded by

health professionals dealing with families discharged from

hospital.

Some achievements:

Liam’s story

Meningitis and septicaemia had a life-changing

impact on Liam. As a self-employed chef, amputation

of his hand in 2012 was devastating. Mentally, it’s

also been a roller coaster ride for those around him,

but with our support he recovers day by day.

“I lost my right hand, all my toes and parts of my feet, as

well as most of my hearing. Although my wife suffered

from anxiety, she organised a fun day to raise over

£8,000 to buy me a car,” Liam said.

“Meningitis Now funded adaptations so I could drive it –

it’s been my saviour! It gives me much-needed

independence back. My road to recovery has been long –

some two-and-a-half years – and frustrating, but the car

sets me free.

“The charity also

funded counselling for

my family, which has

helped us keep

perspective, giving us

a shoulder to cry on

and enabling us to find

our own ways of coping.

“My children, Oli, seven,

and Lily, five, have always

been the driving force spurring

me on but counselling has helped

the family enormously.”

The family also benefited from one of our

family days – an experience which inspired Liam

to get involved in supporting others.

more invested in support

20% young people affected by

meningitis took part in an online

survey

331

20 viral meningitis

sufferers involved in complementary

therapy pilot

“The car is my saviour ! It gives me much-

needed independence. My road to recovery

has been long and frustrating, you helped

set me free.ӣ

Our success in helping to secure the introduction

of new vaccines will mean people begin to think of

meningitis as a disease of the past - such

complacency puts lives at risk. We must keep

meningitis high on the health agenda and included

in public health campaigns.

This year we surveyed 1,600 Mumsnet parents to

understand awareness levels of signs and symptoms and

find out where they look for meningitis information. We

know the rash is still the sign many people look for and

most parents find our handy symptoms cards easy to use.

But the rash is just one of the possible signs. A major

challenge for us is educating new parents to spot

meningitis giving the confidence to seek medical help.

In the winter we ran our regular publicity campaign to

coincide with the seasonal increase in cases to raise

awareness of bacterial meningitis and save lives. We then

Raising awarenesslaunched Viral Meningitis Week in

May, to increase understanding of

a disease that affects thousands

of people and the after-effects

of which are underestimated. Our

Twitter following has increased

to over 10,000 this year and we

know these short messages can

reach a wide audience and reinforce

the messaging carried in our public

campaigns.

Our volunteers play an important role in

our awareness-raising activities, running

stands and presentation talks across the UK. They

support our community team and without their

commitment we wouldn’t be able to reach as many people

as we do.

we supported Hollyoaks as

they covered a meningitis

story

JuneSeptember

“Don’t wait for the rash” campaign targeted freshers’

weeks across the UK

MayFirst viral

meningitis week was heldOur highlights:

“I needed to make a

difference. I needed to

go back to my hospital

and to others and try to

educate; to speak to the

professionals there and

the staff and visitors.

Getting the message out

to as many people as

possible, to save lives and to

give those who had suffered

meningitis the correct care,

attention and support.”

Dave’s world, and the lives of his family, was turned

upside down in 2012 when he contracted viral

meningitis. In hospital and on discharge he felt that

there was limited understanding of the disease.

“Hospital staff knew I was very ill but many didn’t understand the care and attention I needed,” Dave said, “I wish I had been given the details about Meningitis Now

the day I left hospital – that would have saved me and

my family from so much unnecessary suffering.”

Dave has since been a tireless volunteer, helping to raise

awareness. “I’ve realised that I’m not the only one who

has experienced this in hospital - so many leave with no

details of aftercare and how they can be supported.

Dave’s story

October

We surveyed 1,600 Mumsnet parents to check

awareness levels

March

One more million people carried a lifesaving signs

and symptoms card

Our symptoms

cards were displayed at Superdrug pharmacies

“The response has been amazing and I’ve

been welcomed everywhere. Everyone is

just so grateful to know this information.”

Signs and

symptoms app downloads

increased by 75%

We rely on voluntary income and the generosity of

individuals and organisations across the UK to help

fund our work. Without their support Meningitis

Now simply wouldn’t exist.

Thanks to the tireless efforts of our supporters, our

income raised in the community grew by 8%. Amongst

the many incredible efforts some of the highlights are

included below. We now have 508 Forever Funds, where

families and friends tirelessly raised funds and awareness

for Meningitis Now in memory of loved ones. Their

selflessness is exceptional and a real inspiration.

Our events fundraising in the UK raised over £900,000,

with our events programme continuing to be an important

part of our income stream generation plans, not least

because it also provides a strong awareness platform and

a support mechanism for many people fighting back after

meningitis.

Raising the funds

Individuals also helped us through

ad-hoc donations and regular

gifts and we are also grateful for

those people who remember us

in their wills. We received over

£280,000 in legacies in 2013/14.

Our Major Gift programme

continued, with a very special lunch

hosted by HRH The Countess of

Wessex at her home, Bagshot Park. We

also held a small dinner at the Carlton

Club, kindly funded and hosted by our

Ambassador, Alan Halsall.

We received first time support from 33 trust and grant

bodies, totalling £77,760 including The Greif Packaging

Charitable Trust who supported our Financial Support

Grant programme with £28,000. We had support from

over 130 trust and grant bodies during the year.

Barney’s Bash raised £60,000 in

one evening in memory of Barney

Adlington

St Bartholomew’s School, Newbury,

raised over £7,000 from cake sales,

raffles, selling home grown veg to bike

rides

£5,300 was raised at the

Ulster Grand Prix with bucket collections

£23,000 was added to our Founding Young

Ambassador Alex Williams’ Tribute Fund by family and friends

Govan Inner Wheel held a 60th anniversary dinner

and donated £500

Tim Boag raised £3,400 cycling from Paris to

Geneva

Michelle Bresnahan reached the

£300,000 mark in memory of

son Ryan

Alan Glynn, friends and family raised over £40,000 in memory of Alan’s daughter,

Alexis Rose

Gary Mayo and Bryn Meadows Hotel

raised £2,400 at their golf day in memory of

Gary's father Brian

Trevor and Sue Murray surpassed the

£50,000 mark in memory of son Jason

Our finances

Expenditure 2013/14

28% Cost of generating income £1,123,131

13% Helpline and

support services £533,154

14% Research £577,115

Total Expenditure

£4,071,195

8% Financial

support grants £321,368

23% Communication and education £916,162

13% Community

support £540,925

1% Governance £59,340

Income 2013/14

72% Voluntary income £2,456,401

<1% Investment

income £23,690

<1% Trading activities £10,378

Total Income

£3,399,825

27% Fundraising

events £909,356

Expenditure on our core objects of research,

awareness and support increased by 16% and

represents 71% of our total expenditure – an

improvement on 65% last year. Expenditure on

fundraising fell by 10% and represented 27% of

the total.

Total expenditure of £4.1m was 5.6% higher than the

previous year due to an increase in research grants and

support, offset by savings achieved in communications,

education and governance following the merger.

As expected, the merger had an impact on income initially,

along with the challenging fundraising environment. Our

total income reduced by 8% but we have plans in place to

increase this by 12% in 2014/15. The deficit of £669,000

was slightly higher than we planned due to the income

shortfall. Free reserves at just over £2.5m were £0.3m

lower than the previous year reflecting the deficit as we

invested resources into research and support.

Our inspiration will always be the people

we exist for – people whose lives have

been touched by meningitis. 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.

With no Central Government funding, everything

we achieve, and will achieve in the future, is only

made possible due to the amazing people who

surround Meningitis Now. Without support from

organisations and individuals, we would not exist.

Thank you to everyone who is

helping us to make this vision a

reality.

Sue Davie

Chief Executive

Bringing together two charities has been an

achievement of which we are very proud –

creating a louder voice and an organisation that

can make our funds work even harder for the

people we exist for. After a year of transition,

profile raising and business transformation, we

are looking forward to a bold and brave future.

We are one step closer to the Meningitis B vaccine being

introduced and will continue to press the Government

and work with MPs to introduce it as quickly as possible.

Our research remains as important as ever, as we seek to

improve vaccines that already exist and search for new

ones.

Two exciting new projects are underway. Our partnership

with Bounty will put symptoms information in 820,000

packs a year for parents of all newborns - an awareness

opportunity too important to miss. And we will pilot

awareness support for early years, schools and

universities to become recognised Meningitis Aware

establishments.

A bold and brave future

Thank you

We are grateful to all our supporters who have made generous contributions to

our work, individuals, organisations, companies, trusts and grant-making bodies.

We would particularly like to thank:

Organisations that have raised over £5,000

St. James's Place Foundation

The Freemasons' Grand Charity

The Greif Packaging Charitable Trust

CHK Charities Limited

The Edith Murphy Foundation

Lloyds TSB Foundation for England & Wales

The Garfield Weston Foundation

Scottish Government

GlaxoSmithKline UK

Sir Samuel Scott of Yews Trust

Pfizer Ltd

The Souter Charitable Trust

The Valentine Charitable Trust

The Eveson Charitable Trust

The Childwick Trust

The James Tudor Foundation

Novartis Pharmaceuticals UK Limited

We feel the best way to show you the difference

you’ve made, is to include some quotes from people we

have helped:

“Your ongoing support makes me realise I’m

not alone.”

“You empowered me to voice my opinions.”

“Meningitis no longer controls me, I control it !”

“Without your support our families would be practically ruined for

years to come.”

“I felt someone was listening to me for the first time .”

“You were the first people to understand the impact of meningitis.”

Meningitis NowHead OfficeFern HouseBath Road StroudGloucestershire GL5 3TJ

Tel: 01453 768000Fax: 01453 768001Email: info@meningitisnow.orgWeb: www.meningitisnow.org

twitter: @MeningitisNow

facebook: facebook.com/MeningitisNow

health unlocked: /meningitisnow

Registered charity number (England & Wales) 803016 (Scotland) SC037790Company Registration Number 2469130 © Meningitis Now 2014

saving lives,rebuilding futures