OpenCharities

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

2022-03-31-accounts

saving lives, rebuilding futures

Annual Report and Financial Statements March 2022

Table of contents

Introduction:
Recovery, rebuilding and a new sense of resolve 4
Fight to defeat meningitis in the UK within a generation 9
Reach out to everyone who needs help, support and information 16
Be recognised as a centre of expertise for aftercare and support 23
Raising the funds 32
Finance, staf and infrastructure 38
The future 40
Governance 42
Reference and administrative details 48
Financial statements 50

3

Recovery, rebuilding and a new sense of resolve Introduction from Chair and CEO

Thank you for taking the time to read Meningitis Now's 2021-22 Annual Report and Financial Statements .

After the unprecedented shock and challenges of the Covid-19 pandemic, the 2021-22 year is perhaps best characterised by Meningitis Now’s recovery and rebuilding after the disruption of the preceding year.

It was not an easy year. We, like everyone in the UK and across the globe, had to navigate continued lockdowns and social distancing. But whilst it was hard to experience these Covid-constraints during the first half of the year, we were uplifted by the easing of restrictions in the second half of the year. This allowed us to resume important face-to-face contact with the Meningitis Now family through our impactful and much-loved support and fundraising events, such as the Forever Weekend and our Christmas Carol Concerts in London and Gloucester.

Unfortunately, the easing of restrictions also brought a rebound in cases of meningitis. Although the overall incidence of the disease remains low, data published by the UK Health Security Agency in January showed that cases of meningococcal disease amongst adolescents and young adults had exceeded their pre-pandemic levels between September and November 2021 – something we had anticipated and tackled head-on with our student and young people’s awareness campaign in the autumn.

Developments such as these served to strengthen our resolve to save lives and rebuild futures. In April 2021, we published our new strategic plan, Making a difference, every day (see page 7). This commits us to three strategic priorities that will shape and guide the charity over the next five years. We will:

  1. Fight to defeat meningitis in the UK within a generation

  2. Reach out to everyone who needs help, support and information

  3. Be recognised as a centre of expertise for aftercare and support

These are powerful and hopeful priorities that point to a future where no one loses their life to meningitis and where all those affected get the support they need to rebuild their lives.

In this introduction, we provide a short summary of the steps we have taken in 2021-22 to realise this vision. If you would like to read more, there is plenty of detail later in this Report.

Making a difference – now and every day

The Meningitis Now family is at the heart of all our activities. In 2021-22, these took many forms as we sought to recover and rebuild our programmes of research, support and awareness.

Our portfolio of research included, for example, projects focussed on the

prevention, diagnosis and treatment of meningococcal disease and TB meningitis. At the end of 2021-22, over £400k remained committed to projects at universities including Imperial College London, the Francis Crick Institute and the University of Bristol.

We also prepared exciting plans for a new programme of research to recognise the forthcoming 40th anniversary of the death of the young son of our founder, Steve Dayman. Entitled ‘Spencer’s Legacy: nobody left behind’, we will raise funds to support £320k of prevention-focussed research, including a pneumococcal vaccine project at University College London and the London School of Hygiene and Tropical Medicine. We also plan to fund a PhD studentship on meningococcal research at the University of Bristol – thus ensuring that Spencer’s Legacy lives on through the training and development of the next generation of bio-scientific researchers.

Our support programmes finally resumed a face-to-face dimension with the return of events including Family Days, a Forever Weekend and Believe and Achieve residentials across the UK. Home visits by our team of Community Support Officers and our Executive Founder, Steve Dayman, also started again. The pandemic had prompted a shift to innovative forms of digital support and these continued to prove popular and a lifeline for people unable to travel. On this basis, digital events and support will form an ongoing part

of our service delivery in the future.

Our financial support proved invaluable to many people living with the aftereffects of meningitis, with 56 awards made to individuals and families through our Rebuilding Futures Fund. Our Nurseled Helpline provided an informative and compassionate service to nearly two thousand people.

Raising awareness of meningitis remained a critical and lifesaving activity for Meningitis Now, especially given our concern that people might mistake the earliest signs and symptoms of meningitis for Covid-19. Our annual student and young people’s awareness campaign addressed this directly with a ‘Don’t assume it’s Covid’ message, which reached 42,705,000 people via radio alone. Our website was visited 2.2 times a minute on average during the year, whilst our Signs and Symptoms cards were delivered to over 372,000 new parents via our partnership with Bounty.

In 2021-22, Meningitis Now spent £2 million in total on our lifesaving and life-changing activities – a figure which represents a 6.2 per cent reduction in expenditure compared to the prior year. We could not undertake this activity without the incredible generosity of the many individuals, families and organisations that supported Meningitis Now during a difficult year. Our income in 2021-22 was £2.1 million, which was down from the prior year due to the extraordinary and one-off impact of emergency grants such as the Government’s Coronavirus Job Retention

4

5

Scheme. With these exceptional items excluded, income increased by 12.8 per cent year-on-year. We cannot thank enough the many people and families who fundraised for us in 2021-22 – people who ran marathons for example, or who donated gifts and legacies, or who supported us with regular direct debit payments. We would also like to recognise and thank the many companies and grantmaking trusts which supported us with donations and grants during the year.

The combination of this remarkable generosity and our own careful financial management enabled the charity to achieve a small surplus of £115k. Despite the significant (and ongoing) financial challenges created by the Covid-19 pandemic, this encouraging position ensures that the charity has a sustainable future. Our current reserves serve as both a buffer against ongoing economic challenges and a resource base from which to make future strategic investments.

Finally, we wanted to celebrate the crucial contribution made by our 240 volunteers and Ambassadors to all this and more work in 2021-22. They are a key part of the Meningitis Now family and they support us by sharing their stories, raising awareness in their communities

and helping us run events such as our carol concerts and the London Marathon. We recognise that lockdowns and social distancing made things difficult for our volunteers this year, and we would like to recognise and thank our wonderful voluntary team.

With the knowledge that we have such wonderful support from the Meningitis Now family, we look forward to 202223 with a new sense of resolve. We are determined to save lives and rebuild futures. Thank you for your support in 2021-22. With your help, we’ll continue to make a difference – now and every day.

Yours sincerely

Chris Philipsborn Chair of Trustees

Dr Tom Nutt Chief Executive

Making a difference, every day

----- Start of picture text -----
Strategic Plan 2021-26
Making a diference, every day
----- End of picture text -----

We were pleased to launch our new five-year strategy for Meningitis Now – Making a difference, every day – in April 2021.

The new document, launched by our chief executive Dr Tom Nutt and President Andrew Harvey in a Facebook Live broadcast, reinforced our commitment to saving lives and rebuilding futures.

It also outlined three key priorities to ensure we continue to make a difference in the fight against meningitis over the five years to 2026.

These are:

  1. To fight to defeat meningitis in the UK within a generation.

For the first time ever, we have the prospect of a generation of youngsters growing up in the UK vaccinated against nearly all of the major causes of bacterial meningitis. We will make a difference by continuing to invest in research to prevent disease and improve diagnosis and treatment. And by ensuring lifesaving vaccines are as accessible as possible by raising awareness of them and influencing government, public health, the NHS and other relevant stakeholders.

  1. To reach out to everyone who needs help, support and information. We will make a difference by raising awareness of the signs and symptoms and what to do when you suspect them. And by ensuring that the help and support that we offer is as well-known and accessible as possible.

  2. To be recognised as a centre of expertise for aftercare and support. We will make a difference by developing our aftercare and support for people of all ages affected by meningitis. And by demonstrating that our knowledge and expertise is impactful and evidence-based, and that it is influential across the UK and beyond.

Speaking at the launch Tom said:

PS: You may have noticed a new name above. In October 2021, our former Chair of Trustees, Andy Fletcher, stepped down, along with longstanding Trustee, Stephen Gazard. We thank them both for their incredible service to Meningitis Now and welcome our five new Trustees who joined the Board in October 2021. Several of these new Trustees were drawn to Meningitis Now as a result of their own lived experience of meningitis and we are delighted that they bring diverse new skills and insights to the Board. You can read more about Chris, Holly, Randy, Nicki and Stephen on our website, here: www.meningitisnow.org/support-us/who-we-are/our-team/

“Fighting meningitis has been this charity’s driving force over four decades.

The work we have carried out in year one of Making a difference, every day is what we focus on in this report.

6

7

The year in numbers

The support team received We had 1,710 126 new referrals and made 623 support calls Helpline contacts

22 people every day are affected by viral and bacterial meningitis

Throughout the year we provided emotional, practical and financial support to 172 new people

Our Forever Weekend was attended by 31 participants. Our Family Day in Oldham, Lancashire was attended by 48 adults and children

69.4 per cent of our total spend was on our charitable activities

91 new members joined our online peer support group

There were 19 new volunteers to the Meningitis Now Family, including five volunteers who are students.

Our ‘Keep Connected’ online events were attended by 73 young people and adults

Total income was down 8.4 per cent to £2.1 million in the year

We provided financial assistance totalling £41,412 to 56 people

We distributed 372,000 The London Marathon Our BBC Lifeline Appeal Signs and Symptoms cards in October saw over 45 raised £21,626 and in partnership with Bounty. participants cross the finish Celebrity Catchphrase line, raising over £130,000 raised £14,500

Fight to defeat meningitis in the UK within a generation

The fight to defeat meningitis has been Meningitis Now’s driving force for nearly four decades. And thanks to the availability of five lifesaving vaccines on the NHS, the prospect of a generation of youngsters growing up in the UK vaccinated against nearly all the major causes of meningitis, the prospect of defeating meningitis is potentially within our grasp.

But there is more work to be done – there is scope to improve the effectiveness of new and existing vaccines through scientific and medical research, and we must ensure that all eligible people receive the vaccines that could save their (and others’) lives.

To ensure this happens, we will continue to fund research, to promote vaccines and to work with policy-makers and clinicians to ensure we do all we can to defeat meningitis within a generation.

Investing in lifesaving research

As we continued to recover and rebuild across the charity, we were delighted to be finishing the year with a substantial investment of £320k in the Spencer Dayman Research Fund here at Meningitis Now. In addition to this, we have exciting plans to invest additional funds over the next five years in lifesaving research from funds raised as part of Spencer’s Legacy campaign (see page 11).

And after two years of disruption to our research programme, we are now pleased to see the progress, completion and commencement of several significant projects. Despite the ongoing impact of Covid-19 on our research projects, particularly during the first half of the year, all of our projects have made considerable progress towards their aims.

Ongoing research projects

Our student campaign saw 140 items of coverage numbered, with a listener reach of 42,705,000 and total airtime exceeding 22 hours

Community fundraising events held by our supporters, schools and organisations, raised over £340,000

65,000 throat swabs and culture samples from the Be on the Team research, from around 12,000 participants, were collected and stored

Two new and exciting research initiatives costing around £320,000 are to be supported by Spencer’s Legacy: Nobody Left Behind

We received donations from 71 grant-making bodies and from 72 companies

We had 240 volunteers and Ambassadors reaching out to people in communities across the UK

Our website was visited on an average 2.2 times every minute . with a total of 1,833,817 web page views

There were nearly 1,000 (928) Meningitis Now mentions in the traditional press and broadcast media out of a total of nearly 7,000 (6,916) items of coverage mentioning meningitis

We published 123 news blogs and 43 case studies on the website

Improve treatment outcomes in tuberculous meningitis (TBM), led by Professor Robert Wilkinson at Imperial College London and the Francis Crick Institute

Over the past 12 months, the Covid-19 pandemic has continued to affect the progress of this project, including the collection of samples from patients taking part in a large clinical trial for TBM treatment in South Africa. Due to this, the research team has been granted a no-cost extension to December 2023 to allow completion of the study.

Progress has been made in the following areas:

During the next year, further samples will be collected and analysed from patients enrolled in the larger trial. Also, work on the interactions of BBB and Mycobacterium tuberculosis will continue.

8

9

Creation of sample collection from “Be on the TEAM” study throat swabs for molecular (PCR) analysis of meningococcal carriage and carriage density, led by Professor Adam Finn at the Spencer Dayman Research Laboratories, University of Bristol

This two-year project, which started in 2019, successfully completed in March following submission and review of a final report. Despite the premature end to the national ‘Be on the Team’ study due to Covid-19, an amazing 65,000 throat swabs and culture samples, from around 12,000 participants, have been collected and stored at the Spencer Dayman Meningitis Research Laboratories at the University of Bristol for future analysis. We are pleased to report that the team has secured additional funding to analyse these specimens.

The funding from Meningitis Now, which allowed for the preservation and collation of study samples for possible future molecular analysis, means that the ‘Be on the TEAM’ study now has a second chance to meet its objectives, despite being cut short by the pandemic.

Without generous donations from The Starfish Trust and a Life for a Cure, this project would not have been possible.

SURE + DP: Improving diagnosis and prognosis for paediatric tuberculous meningitis through the SURE treatment trial, led by Professor Robin Basu Roy at University College London Clinical Trials Unit

After working closely with the lead researcher, we are delighted to be providing part-funding totalling £58k to the above project. This project had been awarded £249,917 in 2019 but full funding was withdrawn in summer 2020 due to the financial effects of Covid-19. The research aims to increase understanding of tuberculous meningitis (TBM) in children leading to improved diagnostic tests and outcomes.

Starting in March and running over 30 months, this revised project will recruit a “non-TBM” control group of children alongside a large treatment trial in Africa (SURE). A small amount of the overall budget will allow for pilot analysis of samples, the results of which will help towards securing the additional funding needed for the full analysis proposed in the original grant application.

Covid-19 not only affected the funding for this particular study but also had knock-on effects on the parent SURE trial. However, all of the research ethics and regulatory approvals from the UK, Uganda, Zambia and Zimbabwe are now in place to start recruiting the “non-TBM” group of children from spring 2022.

Investing in future research – Spencer’s Legacy campaign

Funds raised by the Spencer’s Legacy campaign will be used to support two new and exciting research initiatives costing around £320k:

  1. A project to Develop a multivalent Streptococcus pneumoniae recombinant glycoconjugate vaccine for preventing meningitis, led by Professors Jeremy Brown and Brendan Wren at University College London and the London School of Hygiene and Tropical Medicine. This project is due to start in July 2022.

  2. A project to invest in scientists of the future by funding a 4-year PhD studentship at the Spencer Dayman Meningitis Laboratories at the University of Bristol. This project is due to start in the Autumn of 2023.

We look forward to working with the research teams to support both of these pieces of work in the coming years.

Developing plans for Spencer’s Legacy

Plans were developed over the year for a new campaign to mark the 40th anniversary of the death of Steve and Gloria Dayman’s son Spencer, aged 14 months, which would launch as Spencer’s Legacy: Nobody Left Behind in April 2022.

Meningitis Now’s Executive Founder Steve, 74, supported by his wife Gloria and family, has dedicated his life for the past four decades to fighting meningitis.

Steve said: “Spencer’s death completely changed my life. Over the years since, I’ve met thousands of families who’ve experienced a similar tragedy. Most families who’ve suffered find it helpful, like me, to do something positive. If we unite and do all we can – we will make a difference.”

Steve recalls experts of the time 40 years ago saying he would not see any meningitis vaccines in his lifetime. But today, vaccines to combat MenACWY, MenB, Hib, pneumococcal disease and tuberculosis are all available free on the NHS.

“Initially, I was astonished by how little people knew about the disease, including the medical profession. It was startling to discover no leaflets, no charities and no help available.

“We felt alone – something had to be done because we wanted to protect others from the horrendous pain of losing a loved one.

“I wanted to do something Spencer would be proud of and never expected to make the strides we’ve made.”

Steve chose to prioritise visiting families touched by meningitis, something he still does today, and has always been available 24-7 by phone to anyone needing his help.

He took on charity marathon walks, which often involved 40 days' walking on end and routes such as John O’Groats to Land’s End.

On these he was always accompanied by Spencer’s teddy bear Sonny, who still goes with him on his travels. Sonny also features in the Nobody Left Behind logo.

11

10

Steve has raised more than £2 million from these marathon walks alone, amassing over 12,000 miles.

However, it dawned on him that awareness alone would have had little effect on the outcome in Spencer’s case, so in the late 1990s he decided to dramatically change his approach towards funding vaccine research.

He formed Bristol-based Spencer Dayman Meningitis UK in 1999, to primarily fund a £500,000 stateof-the-art research laboratory at the University of Bristol.

The Spencer Dayman Meningitis Laboratories officially opened in April 2002 and now house a £2.5 million research investment.

Along the way Steve has received the MBE in 2010, an honorary degree from the University of Bristol and a Pride of Britain award, both in 2014.

Roundtable awareness campaign

Ensuring that people are aware of the lifesaving benefits of vaccines is a critical part of our new strategy. In October 2019, we pioneered a new approach to this by convening a ‘Roundtable’ meeting of organisations, each with a shared interest in raising awareness of meningitis. This included charities (Meningitis Research Foundation and a Life for a Cure), statutory bodies (NHS England and Public Health England), and pharmaceutical companies (Boots, Pfizer and GSK). The aim was to explore collaborative working to maximise the power of shared messaging and make efficient use of resource and expertise.

During the pandemic this group met virtually and a plan was developed for an unprecedented joint campaign to run in August and September 2021. This was resourced by GSK, but with collaborative input from all partners.

“Without my family and friends, it wouldn’t have been possible for me to make the contribution I have.

“I will not stop because I want this dreaded disease eradicated, so no one else feels the pain I and many others have felt,” Steve added.

Read more about Spencer’s Legacy: Nobody Left Behind and donate on our website at www.meningitisnow.org/support-us/news-centre/public-affairs/campaigns/spencers-legacy

The campaign was aimed at London’s young people, after a poll showed their awareness of meningitis to be worryingly low. Some 71 per cent of those asked had little or no knowledge of the disease.

And almost 1 in 3 (31 per cent) were unaware of the possible devastating consequences of picking up the infection, including limb loss and hearing loss.

Research also found that although the majority (73 per cent) believed it to be important to be vaccinated against meningitis, 2 in 5 (39 per cent) either said they hadn’t been vaccinated or admitted they were unsure of their vaccination status.

Worryingly, 27 per cent were unaware that meningitis vaccines are included in the routine vaccination schedule, and are therefore freely available to anyone under the age of 25 through their GP.

The campaign urged Londoners aged 18 to 24 to check their MenACWY vaccination status with their GP and catch up as soon as possible if needed.

Nick Gilbert, who had spearheaded our own student campaign, told his story to BBC London, who also interviewed our chief executive Dr Tom Nutt. There was also coverage of the campaign on LBC, Capital FM, Talk Radio, Kiss FM and Heart as well as in the Metro and Evening Standard.

The cooperative concept has been highlighted by the Association of the British Pharmaceutical Industry and by the Department of Health and Social Care as an example of best practice. A plan for a similar collaborative campaign is in preparation for Autumn 2022 and a wider group of stakeholders are already engaged to collaborate in 2023.

12

13

Influencing policy-makers and clinical practice

Our aim in seeking to influence policy-makers and clinical practice is to work positively with a range of stakeholders in pursuit of our strategic aims. To this end, in 2021-22 we enjoyed the opportunity of working with a range of partners across the UK and from different sectors.

Engagement with the UK Health Security Agency

In response to the rebound in cases of meningococcal disease amongst students in Autumn 2021, we responded to an appeal from the UK Health Security Agency to work together to raise awareness of meningitis.

Using the knowledge and experience of our student awareness campaigns over many years, we helped shape their awareness materials, including a new adhesive poster inspired by our impactful Signs and Symptoms fridge magnet. We were able to work with our Meningitis Awareness Recognition Mark (MARM) universities to distribute lifesaving information materials to universities.

----- Start of picture text -----
Keep me where I can
be seen by all students.
Don’t throw me away,
reuse me for next year!
Hangover? Freshers flu?
or meningitis?
#Meningitis can be very serious if not treated quickly.
Know the signs and symptoms of meningitis and septicaemia:
Fever and/or Severe headache Limb, joint, muscle Cold hands and
vomiting pain, stiff neck feet, shivering
Pale or mottled skin, or rash Breathing fast, breathless lights, seizures (fits)Dislike of bright confused or deliriousVery sleepy, difficult to wake, vacant,
Symptoms of meningitis and septicaemia can appear Seek medical advice quickly if you are worried,
in any order and not everyone has all the symptoms. call NHS 111 .
Look out for your mates. Tell someone if you or Act fast – if someone is ill and getting worse
someone else is ill. Check in regularly to make sure quickly, get medical help immediately, and
they are OK or so that someone knows you are OK. call 999 in a medical emergency.
#Vaccines offer the best protection. If you are Meningococcal disease is an important
a student under 25 years of age and have not cause of meningitis and septicaemia.
yet had the MenACWY vaccine, ask your GP MenACWY vaccine is very effective
vaccine:or visit NHS.UK to find out about MenACWY nhs.uk/conditions/vaccinations/ against 4 common kinds of meningococcal disease but won’t protect against others,
men-acwy-vaccine like MenB.
Produced by the UK Health Security Agency, with thanks to Meningitis Now and the Meningitis Research Foundation.
To order more free copies visit healthpublications.gov.uk and search for MENBST1 or call 0300 123 1002
----- End of picture text -----

Meningococcal Working Group (MWG)

Since 2017, we have been pursuing improvements in the diagnosis and treatment of meningococcal disease by working alongside health and care stakeholders and families affected by the disease through the Meningococcal Working Group.

In 2019, the Department of Health and Social Care (DHSC) published a report with recommendations aimed at improving the culture and practice of diagnosis and treatment of meningococcal disease in frontline healthcare settings, and since then, we have continued to work to progress these aims.

As a result, in July 2020, we joined the NHS England Acute Deterioration Board, which has been designated to oversee the MWG recommendations, and continue to work hard to effect change across NHS England, particularly in the area of patient and carer ‘worry and concern’. During 2021-22 we continued to contribute to a working group of clinicians and other health and care specialist to find a way to systematically ensure that the voices of carers (and patients themselves) are listened to when someone is unusually unwell – something that will require a change in day-to-day NHS culture and practice.

National Vaccine Strategy and NICE Guidelines

Work led by the Department of Health and Social Care towards the creation of a national vaccine strategy continued to be delayed by the Covid-19 pandemic. Despite the challenges of engaging civil servants during a busy year, we continued to express our support for the creation of this.

We continued to be stakeholders in two National Institute for Health and Care Excellence (NICE) guidelines that are in development, and have taken an active part in the scoping exercise for the following projects: 1. Meningitis (bacterial) and meningococcal septicaemia: recognition, diagnosis and management. This is due for publication in December 2023. 2. Vaccine uptake in the general population. Publication was due in April 2022. Both guidelines have been delayed due to Covid-19 but are now progressing with revised publication dates.

A Global Roadmap to Defeat Meningitis

----- Start of picture text -----
DEFEATING MENINGITIS BY 2030
A GLOBAL ROAD MAP
----- End of picture text -----

In late September we welcomed the launch by the World Health Organization (WHO) of a Global Road Map to defeat meningitis by 2030. The roadmap has been designated as a flagship global strategy of the WHO’s Thirteenth General Programme of Work 2019-2023.

Despite successful efforts to control meningitis it continues to be a major public health issue across the world, killing about 300,000 people annually and leaving 1 in 5 of those affected with long-term and devastating after-effects. The roadmap includes three visionary goals: to eliminate epidemics of bacterial meningitis; to reduce cases of vaccinepreventable bacterial meningitis by 50 per cent and deaths by 70 per cent; and to reduce disability and improve the quality of life after meningitis of any cause.

The roadmap will reinforce and combine with wider initiatives, such as those aimed at strengthening primary

health care and health systems, increasing immunisation coverage, improving global health security, fighting antimicrobial resistance and advocating for the rights of persons with disabilities.

Welcoming the launch, Meningitis Now chief executive Dr Tom Nutt, said: “ This is a major step forward by the World Health Organization and we welcome this worldwide commitment to eradicate the scourge of meningitis. ”

Association of British Pharmaceutical Industries

Our chief executive Dr Tom Nutt was one of eight leaders from across the patient and health charity sector invited to join the British Pharmaceutical Industry’s new Patient Advisory Council (PAC).

The council will help to steer and broaden the Association’s strategic thinking, ensuring a more patient-centric future strategy, policy and priorities.

Tom said: “By sharing the knowledge and insights we learn every day as the people’s voice for meningitis, and by working with other leading patient groups, I hope we can shape and positively influence the vital work of the UK pharmaceutical sector.”

Since creating the PAC, members have advised the ABPI Board on matters ranging from equality, diversity and inclusion to big data.

14

15

Reach out to everyone who needs help, support and information

Unfortunately, vaccines cannot protect everyone against all forms of meningitis, which means that Meningitis Now will continue to save lives by raising awareness of the risks of the disease, its signs and symptoms, and what people should do when it strikes.

We also want to prioritise efforts to address health inequalities and promote equality, diversity and inclusion in all our work. And since many people in the UK are unfortunately unaware of the help and support we can give, we shall try harder than ever before to reach out to everyone who needs help, support and information. We do so using a range of impactful approaches and methods.

Volunteering makes all the difference

Like many in the charity sector, Meningitis Now relies on its volunteers and Community Ambassadors to reach out to people in communities across the UK. Without the ongoing support, enthusiasm and dedication of 240 volunteers and Ambassadors the work of the charity would not have been possible this year. What distinguishes a Meningitis Now volunteer is a passionate belief in the work of the charity and the part they play in making a difference every day.

One of our volunteers told us:

“I am a passionate believer in what Meningitis Now is doing and about helping to spread awareness of this disease. Sometimes it can be very difficult and very emotional too, but it’s worth it. The respect that goes with volunteering helps make life feel positive.”

Despite a difficult start to the year, with social distancing measures still in place, our volunteers were keen to get involved and they clocked up an impressive 868 of recorded hours. This included supporting our student awareness campaign, giving online awareness talks, distributing thousands of fridge magnets and collecting cheques.

September saw the return of face-to-face volunteering activities and it was brilliant to see volunteers and Ambassadors out and about once again, especially at key events in our calendar such as the London Marathon and the Christmas Carol Concerts.

We welcomed 19 new volunteers to the Meningitis Now Family, including five volunteers who are students based in universities across the UK. Their experience and insight will help us to shape our awareness-raising activities aimed at students and young adults in the years to come. We are delighted to have them all on board.

The volunteering team here at Meningitis Now know how important it is to keep in touch with our Volunteers and Ambassadors. For example, during the year they held eight virtual Ambassador reconnection sessions. This is what two of our Ambassadors said after these sessions:

“The staff are fantastic, I felt so welcome. It made me feel more involved with the whole charity again and reminds me why I want to be part of Meningitis Now. It’s a great charity and I’m happy to do more.”

Our Community Ambassadors – Graeme and Gail’s Story

In 2016 Graeme and Gail lost their daughter Katherine to pneumococcal meningitis. Katherine’s loss was devastating and Graeme said at the time:

“When we lost Katherine we had nowhere to turn for help. We were completely lost, not just within our grief but also the need for some answers. We were distraught. Some internet research took us to Meningitis Now and all I can say is thank God they were there for us.”

As valued Community Ambassadors, Graeme and Gail continue to support our charity in so many ways. During the year they have raised thousands of pounds for Katherine’s Forever Fund, supported numerous fundraising events and raised awareness of meningitis by giving away thousands of symptoms cards in their local community. For this, we are extremely grateful.

In December, Graeme showed great strength and resilience and delivered the key address at our London Carol Concert. He spent weeks crafting his speech, telling their story from both his and Gail’s perspectives.

Graeme spoke very movingly about Katherine and the harrowing impact of her loss on him and Gail and how it never leaves them. Afterwards he said: “Writing and presenting it did so much for my mental health. It helped me get some things out of the dark corners of my mind. Giving the speech helped me so much.”

Graeme is full of plans for raising awareness and funds next year, and said that being embraced in such a genuine way by the whole charity has enabled him and Gail to survive what they thought impossible. It has also given him a sense of purpose and something to focus his energy and attention on.

We never take our volunteers and Ambassadors like Graeme for granted and whether they are new to Meningitis Now or an old hand – they are all valued members of the Meningitis Now Family. We know how much support they give us and in return we know how much volunteering for Meningitis Now gives them.

Tony and Marilyn, two of our long-term volunteers in Lincolnshire, said:

"We get an awful lot out of volunteering for you, it fills in the gap in our time in our retirement and gives us a purpose. We feel we’re using our time in a valuable and rewarding way. We really enjoy doing it and feel excited and enthusiastic about trying new ways of raising awareness. If one way doesn’t work, we just make a note and learn from it and try something else.”

16

17

Reaching out via our website, social media and the press

Our website and social media channels are the main way we reach out to those seeking information on our work. The website was visited on average 2.2 times every minute during the year and we saw steady and strong recoveries across the board in all our metrics, after the previous year where we had seen numbers falling during the pandemic.

Website statistics

988,295 new users numbers (up 4.5 per cent)

Social media statistics

Facebook Instagram Twitter
Reach (av.) 409,729 30,235 49,335
Impressions (av.) 485,176 63,031 45,389
Engagement (av.) 23,123 1,539 702
Web visits (total) 97,097 6,214 2,235
Followers (total) 87,634 8,879 15,994

We saw strong numbers for new visitors coming to the Meningitis Now website, reaching 84.5 per cent of our total audience, up nearly 5 per cent on the previous year. These figures look likely to continue to improve based on projected metrics.

We have begun to implement a total rebuild of the website which will be delivered in 2022-23 and will see a more responsive site, built with our audience in mind which will also feature enhanced donation functionality, making it easier for our supporters to give to the charity.

Elsewhere, nearly 1,000 articles (928) in the traditional press and broadcast media were published naming Meningitis Now, out of a total of nearly 7,000 (6,916) items of coverage mentioning meningitis. This was an increase of nearly 400 on the previous year (550 articles) or a rise of 69 per cent. This included stories in the Daily Mail, the Mirror, the Sun, the Daily Express, the Star and Metro, as well as leading regional titles.

Stories performing well included our Junior Ambassador Harmonie-Rose winning a Pride of Britain Award (and duetting with Ed Sheeran); our Celebrity Ambassadors Dean Holden and Danielle Nicholls telling their daughter’s meningitis story; recollections of Princess Diana’s involvement with the charity on what would have been her 60th birthday; and our own student awareness campaign.

In addition, we published 123 news blogs on our website, highlighting everything from supporters’ fundraising efforts to our response to the latest disease incidence figures. We also published 43 case studies, covering all ages, types of meningitis and outcomes – a total of 166 stories, the majority of which fed into our social media posts, helping to raise disease awareness and promote our support offering.

Don’t assume it’s Covid or a hangover – raising awareness with students

Our student campaign this year urged young people off to university not to automatically assume they had Covid-19 or even a hangover if they felt ill – it might be meningitis.

One person who knows, only too well, the consequences of making the wrong assumption about his illness was 26-year-old Londoner Nick Gilbert, who spearheaded the awareness campaign.

In 2018, Nick felt under the weather, but assumed he didn’t have anything serious. After resting overnight, he went about his business the next day and even went on a date.

But, just 24 hours after first feeling ill, Nick collapsed, vomiting in a busy central London street. His symptoms were mistakenly assumed to be drunkenness by the many people who saw him. Fortunately for Nick, a young woman passer-by helped him to hospital, where his meningitis was diagnosed. Nick went on to make a good recovery.

“I dread to think how the outcome could have been different if I’d just gone home and shut myself away from everybody,” Nick said. “It’s vital that anybody who feels ill does not automatically assume it’s just a hangover, or an illness you’ve just got to sweat out, like Covid.”

Nick told his story across the press, including the Express Online, Wales Online and some 50 other outlets. He also joined our chief executive Dr Tom Nutt and Michelle Bresnahan, who set up the charity a Life for a Cure after losing her son Ryan, 16, to meningitis in 2010, for a series of radio interviews that proved highly successful in raising awareness.

Highlights included:

The total items of coverage numbered 140, with a listener reach of 42,705,000 and total airtime exceeding 22 hours. Most of the interviews lasted well in excess of seven minutes – and some over ten minutes – giving Michelle, Tom and Nick ample opportunity to share their stories and advice.

There was positive feedback from presenters too:

“Thanks Michelle, Tom and Nick – a very important interview. Clearly explained and full of detail” Jools Oughtibridge, Content Producer, Radio News Hub

David Caldwell, Presenter and Producer, Sescot Radio

18

19

Not just students, and not just incidence

Equality, Diversity and Inclusion (EDI)

We are committed to EDI as an organisational priority for 2022-5 and to embed it into the way we think, relate and work. We invested significant resources this year by appointing an operational lead for EDI, who will undergo a Chartered Management Institute (CMI) level 7 EDI qualification. We have also engaged an external consultant to help us develop a clear plan for EDI across our support services and the charity’s wider team of staff and volunteers.

The EDI plan for next year will involve laying the groundwork for the more detailed roll out of EDI in the years to come. In the first year, the work will include:

Making more people aware of our support

We have worked determinedly this year to promote our aftercare and support services with the aim of ensuring that they are accessible to all. Whilst we know that we still have some way to go to reach people affected by the disease in diverse communities across the UK, we are making significant progress.

Providing the right information

Nurse-led Helpline still a lifeline for many

----- Start of picture text -----
Support after
meningitis
Meningitis Now know
how tough life after
meningitis can be.
We provide emotional,
practical and financial
support for people of
all ages in the UK who needed listening support via calls, emails and social media.
have been affected
by meningitis.
“ Meningitis Now’s support has Following the reduction in Helpline contacts that we
been invaluable for my family. I
often wonder how I would have saw last year (1,828) at the height of the pandemic,
coped without their support. ” we correctly predicted that numbers would remain
reasonably static this year (1,710). This is not
surprising as the impact of Covid-19 was still being
felt, particularly during the first six months of the
year.
----- End of picture text -----

Throughout the year we provided emotional, practical and financial support to 172 new people from across the lifespan. This is a noteworthy achievement given the continued impact of Covid-19 and the low numbers contracting the disease. This number doesn’t include the numerous people who have joined our online peer pages and contacted our Helpline for the first time. We will continue to focus on promoting our information and support services more widely in the years to come.

Our nurse-led helpline remains at the core of our information and support provision and is a lifeline for many. Despite a few challenges in resourcing the Helpline during opening hours this year, we have provided information and support to numerous people from across the UK (see below). Our team of Nurses, supported by a Community Support Officer, have provided muchneeded listening support via calls, emails and social media.

As part of the launch of our Strategic Plan in April 2021, we produced a series of videos, one of which focused on our Young Ambassador Louise Greer and the impact that her involvement with Meningitis Now, and in particular with our support services, has had on her.

Contacting the Helpline via email remains the most popular route and often results in lengthy and complex responses. This continues to reflect people’s use of digital platforms to access information and support services. One thankful person who emailed us wrote:

Louise, who had meningitis when she was two-and-a-half, leading to amputations of both legs through the knee, part of her left arm and part of the fingers on her right hand, talks movingly about her involvement with the charity.

“If I hadn’t had the support of Meningitis Now I would probably have stayed quite shut in the house and not gone out, not gone to uni and not gone on to look for jobs that are probably quite ambitious. I learnt that I have a lot more skills than I thought I had. It’s enabled me to be more confident in myself and independent.”

“Thank you for getting back to me so quickly. The thought that there is someone out there that actually understands what you are talking about and can offer real help and understanding is such a relief. Many and sincere thanks.”

On Facebook the video has had 875 views and 84 reactions. On Twitter, it’s had 40 views and seven reactions. You can watch the video here https://youtu.be/bs6Qgj5Mjic

20

21

We continue to receive many calls that cover a range of topics including vaccination, signs and symptoms, hospital treatment, after-effects and bereavement. Recovery and after-effects and service enquiries continue to make up the largest proportion of the calls. It is worth noting that these types of calls take significantly longer (upwards of 30 minutes) than calls about symptoms or risk.

To demonstrate how we make a difference every day on the Helpline, we monitor the impact using a post-call survey. All respondents found the information they received useful and felt more confident in dealing with the issues raised during the call. Feedback from callers also shows us that we are getting it right and our Helpline continues to have a crucial part to play in our service delivery:

“Thank you for offering such a useful service. I have been trying to get an answer to my question from various health professionals and had conflicting information. You answered my question straight away and gave me a webpage to confirm this.”

Be recognised as a centre of expertise for aftercare and support

A key area of focus over 2021-22 has been on our strategic priority to be recognised as a centre of expertise for meningitis aftercare and support. This would not be possible without our staff, who are a key factor in the success of our support delivery. Their skills, experience, commitment and passion remain central to the difference our work makes.

It is the emphasis on quality and depth that is central to the lasting impact our work has on the lives of the young people, adults and families we work with every day. We have direct evidence of the kind of outcomes our support and aftercare create and this is testament to our personcentred approach and a continued spotlight on demonstrating that we are ‘making a difference every day’. We could not achieve these outcomes without working in partnership and combining our expertise with a wide range of individuals and organisations.

We know that there is a lack of focus on the emotional wellbeing and mental health of those impacted by meningitis. This means many people face their recovery alone, with complex needs going unmet and causing high levels of distress and discomfort for affected families. As the UK’s leading charity for meningitis support, we have a responsibility to respond to the varied needs of the meningitis community and take the lead in tackling the need to improve follow-up, aftercare and support in the UK.

Direct support for people affected by meningitis

Financial Support proves vital

Our Rebuilding Futures Fund continues to provide much-needed financial support to people of all ages from across the UK. During the year we were able to provide financial assistance totalling £41,412 to 56 people across all four categories of the fund – health and wellbeing, opportunities, bereavement and specialist equipment. Seventeen awards benefitted children and young people. All those who received an award stated that the financial support helped a lot and made a big difference to their lives.

Making a real difference everyday …

A Specialist Trike. We worked alongside Tomcats, a Gloucestershire-based company making specialist trikes for children with mobility problems, to provide independence and a sense of freedom for a 7-year-old boy who contracted neonatal meningitis at eight days old.

On the application his Dad described how:

We would like to thank the James Tudor Foundation for continuing to fund our Helpline and the expertise of our nurses.

“S tries to be independent and since being at school he has developed a group of friends who regularly go to the park on their bikes or cycle to school. A specialist trike will enable S to go to the park with his friends, help with his hypermobility and enable our family to go cycling together.”

22

23

Cranial Osteopathy

In December, we awarded a woman struggling with the ongoing after-effects from viral meningitis that she contracted in 2019 a course of cranial osteopathy. Her after-effects included headaches, pain, tension, hearing difficulties, fatigue and low mood, which impacted her life on a daily basis. She was delighted with the award and told us:

“WOW ! Thank you, Thank you, Thank you!!! I am so incredibly grateful to Meningitis NOW for this wonderful gift. I genuinely feel really emotional – honestly this news couldn’t have come at a more pivotal time for me and I am truly grateful.”

Other people have told us how we are continuing to make a big difference every day with this fund:

“This award has made a big difference as Z can practise his standing and walking with the standing ladder on a daily basis. The stool has meant that he can also practise his sitting in a more independent way.”

The family of a child with an Acquired Brain Injury awarded funding for a standing ladder to help mobility.

“It improved my family's mental health as we all got to spend time together as a family. It gave my kids a summer holiday and something to look forward to after a long summer without their dad as he was in hospital.”

A Dad who experienced multiple episodes of meningitis awarded funding for a short family break.

We were delighted that Aimee’s RFF award for a specialist trike was featured in ‘The Big Give Christmas Challenge’. ‘Every child deserves to have a bike’ is certainly a stand-out phrase for the Rebuilding Futures Fund panel members this year. A new bespoke, shiny pink trike supplied through the fund has meant Aimee can get out and about in comfort and safety.

Improving awareness and reaching more people with the Fund has been a key area of focus this year, with numerous activities across our social media channels and Facebook. As well as promoting the Fund, we have taken every opportunity to talk about its continued impact and success. In November, we delivered a poster presentation at Meningitis Research Foundation’s bi-annual conference. The poster was based on the impact report from year one of the Fund.

We continually strive to improve the Fund and look forward to next year, as we work towards developing bereavement support, with the option for people to apply for a memorial to remember their loved ones.

We would like to thank the many funders who enabled us to deliver life-changing support through our Rebuilding Futures Fund, including the Worshipful Company of Butchers and The Masonic Charitable Foundation.

Colin and Lydia’s story

Lydia’s husband Colin contracted pneumococcal meningitis in November 2019 aged 28, but has also suffered from recurring viral meningitis. The family has found Meningitis Now’s support amazing, as Lydia, from Belfast, tells us here.

“After a brain tumour diagnosis in 2016 our world was turned upside down. Colin had surgery to remove it and after hearing that it was successful we thought that life could 'go back to normal'.

"However, a complication of this surgery was a recurrent Cerebrospinal Fluid (CSF) leak. Over the past five years he has contracted viral meningitis five times and bacterial meningitis once.

“His pneumococcal meningitis came on so quickly. He was at a work training day, he left the house with a slight headache but feeling fine. Within a matter of hours he was vomiting, had a stiff and painful neck and was sensitive to light, before he lost consciousness.

“Colin has had a tough few years. We have nearly lost him on more than one occasion. He will never get a complete all clear from hospital as the CSF leak can reoccur at any time. However, he has had numerous operations and procedures to try and seal the area affected, undergoing massive brain surgery three times in the hope that this will prevent meningitis.

“We live in fear of the symptoms happening again and are constantly on high alert anytime he has a headache. We know the signs to look out for and doctors have praised us for our quick response in getting Colin straight to hospital. When it comes to meningitis, acting quickly can be the difference between life and death.

“Meningitis continues to have an impact on our family’s life, Colin suffers with common issues related to meningitis such as problems with memory and concentration, co-ordination and balance problems.

“We have received so much help and support from Meningitis Now through its Helpline and also the Rebuilding Futures Fund. The staff have been amazing – I can’t praise them enough.

“Colin has been in hospital several times, most recently for six weeks this past summer. I was balancing our three children under 6 by myself along with trying to get to see him every day in the middle of the pandemic.

“The team at Meningitis Now rang or messaged me at least once a week just for a chat or to check how he was doing.

“We were also able to get away for a two-night family break recently through the Rebuilding Futures Fund, which we were so grateful for as the kids missed out on holidays with daddy over the summer.

“We are sharing our story to promote the work this amazing organisation does.”

Colin told us: “Fantastic team who have shown my wife great support while I was in hospital over the summer. I was very worried about finances while I was in hospital as I was unable to work and my wife is a full-time mum. Being able to claim back our fuel and parking costs for using the hospital car park was a massive help. It was one less thing to worry about.”

Lydia told us: “We had the best time last week (at the family break) and the kids had a ball. It was the first time in months Colin had been out and about and able to do stuff with them. He is doing well, and still making progress.”

24

25

Community Support provided much-needed emotional and practical support

The work of our regionally-based community support officers continued to provide much needed emotional support, signposting and practical help to individuals and families across the UK.

During the year the team received 126 new referrals and made 623 support calls. With the lifting of social distancing restrictions in the first half of the year, we once again started to visit people in their homes and local communities, which was a huge relief for many who had experienced isolation and loneliness during the many dark months of the Covid-19 pandemic.

In addition to the one-to-one work, our Community Support Officers deliver numerous support events and moderate our online support pages (see below).

In September, the work of the team was enhanced when we successfully appointed a new Senior Community Support Officer (CSO) to manage the team. The additional skills, knowledge and experience she brings to the team will prove invaluable next year when we carry out research to better understand the impact of the CSOs’ role and activities.

Vital support following bereavement

Supporting people through bereavement and grief remained a key element of our support services, as we know that the pain of losing a loved one to meningitis doesn’t disappear with time. Nowhere is the value of this support more evident than during our residential weekend for adults who have lost a loved one to meningitis.

Our residential ‘Forever Weekend’ was held in November and despite many tears, it was wonderful to talk openly and remember loved ones lost to meningitis, with a series of workshops, films and activities. The Forever Weekend was attended by 31 participants, including seven couples who had lost a child, four people who had lost a partner/spouse and two mums who came on their own who had lost a child. Six families new to the charity attended. Outcome measures were excellent, as was feedback which included:

“Thank you for your kindness and support. I loved sharing a bit of my husband with you all. I am so proud of him. I hope you have a glimpse of why he was such an amazing man.”

“Excellent weekend meeting people with shared experiences, the Meningitis Now staff have been amazing and I feel like I have known them for years. They have been very supportive and caring. Thank you all.”

We could not have delivered this worthwhile event without the help and support of Maria Ahern (Compassionate Friends), The Good Grief Project, Georgia Elms (Widowed and Young) and Russ Fisher (Forever Fathers).

We know just how important continuing bonds are for those who have lost a loved one to meningitis. So, in June, we held our first ‘Keep Connected’ online event focusing on bereavement. We brought together six bereaved adults, who had attended our first Forever Weekend back in September 2019, to stay connected, talk about and remember loved ones.

This year our Ribbon Appeal was supported by a wonderful family from Scotland who lost their 8-year-old daughter to meningitis whilst on holiday in France in 2019. Their lives changed in the blink of an eye and will never be the same again. However, their support of this year’s Ribbon Appeal showed so much compassion and bravery.

Since 2019, we have provided ongoing support to the family through our home visits and our online bereavement support group. Mum wrote: “In particular, Alison (our Community Support Officer) has made me feel she is looking out for us, even when the rest of the world seems to have moved on. She has been wonderful in checking in on us, providing information and making me aware of various therapy opportunities in our area.”

Face-to-face support events return

Finally in September, after an absence of 18 months, we saw a return to our much-loved faceto-face events, including Family Days and residential weekends. During the year we held five successful and inspiring events, bringing the Meningitis Now family together, from across all regions of the UK, including a family day in Scotland. Some 120 people, including children, young people and adults, attended these events, demonstrating how popular they were.

For example, in November we held a Family Day in Oldham, Lancashire. The day, at ‘Summit Up Climbing’, was attended by 48 adults and children. Measured outcomes were excellent, as was the feedback.

This is what one family told us:

“Back home from the best day in a long time with my family – went to the Meningitis Now Family Day at Summit Up, safe to say we are all absolutely shattered, been such a good day and the boys have had such a ball – thank you sooo much Meningitis Now.”

We are always pleased to see new individuals and families at our events as reaching out to everyone who needs help, support and information is a key strategic aim. Across all five events we welcomed 18 new people to the Meningitis Now family.

Online events continue to prove popular

We know that delivering virtual support events is a great way to reach a wider audience of young people and adults as the barriers of time, travel and geography are reduced. So, this year we have continued to embrace digital technology and delivered nine ‘Keep Connected’ virtual events covering a broad range of topics. These included ‘Reasonable Adjustments in the Workplace’, ‘Viral Meningitis’, ‘Living with Acquired Brain Injury’, ‘Continuing Bonds’ and ‘Christmas Socials’. Four of these were delivered through our Believe & Achieve programme for young adults.

They were attended by 73 young people and adults, including many new faces.

Here is what one person said about the ‘Reasonable Adjustments in the Workplace’ session for young people:

"These kinds of events are so helpful, even if you're not entirely sure what you're going to get out of them! This session covered everything I needed to know about going into a job or internship, as a person with disabilities/neurodivergence, and I really appreciated hearing my rights from real lawyers! Looking forward to the next events."

We would like to thank the team from Anthony Collins for their expert help in delivering the ‘Reasonable Adjustments in the Workplace’ sessions.

26

27

Online Peer Support

Our online peer led support groups on Facebook continued to bring together people with shared experiences of meningitis to support each other. These pages provide a space where people feel accepted and understood and everyone’s experience has equal importance. Across all our sites, we have added 91 new members this year alone, who have benefitted from over 500 posts and thousands of supportive comments like this one, posted on our bereavement support group:

“The one big thing here is we all understand what each other are going through, we may have differences in how we got here but we understand that through loss we all share our feelings and thoughts to ease others at such sad times. So, never feel alone.”

Alongside our online support groups, many people in the UK have benefitted from the ‘Health Unlocked’ meningitis community. This worldwide community provides support, understanding and reassurance to 6,000 people.

Believe & Achieve – making a difference to young lives

“Believe & Achieve has made a massive difference to my life. If I didn’t have this group, I don’t think I would be where I am now. From being part of Believe & Achieve I’ve gained a lot of confidence but have also gained a support network and friends that I never had before. It has been really beneficial to me, and I would like it to continue, so that myself and others can continue getting the support we need now and in the future.”

Our Believe & Achieve programme, now in its fifth year, continued to help young people think about where they are in life, set and achieve goals, overcome challenges, make new friends, learn new skills and celebrate successes. Ultimately, the programme gives young people the confidence to believe in themselves. There continues to be a real need for support within our community of young people, both to help them with the impact of meningitis and the pandemic. And this includes young people whom we have been supporting for a while and new referrals to the programme.

By the end of the year we had supported an amazing 159 young people through this programme, providing counselling, coaching, next-step mentoring and peer mentorship, as well as numerous events. Believe & Achieve is making a significant and lasting positive difference to the lives of young people:

Ryan said: “[counselling] has been fantastic. I have learnt so much about myself and been able to reflect and fix issues that I have had. Thank you so much for facilitating this, you have no idea how much this has helped.”

Our community of young people all have one thing in common: they understand first-hand how it feels to be affected by meningitis. During the year many young people have shared their personal meningitis stories through our social media channels and contributed to our online community including the online Believe & Achieve group.

A highlight for the year was our residential weekend for 18 to 26-year-olds, held in September. This was our first face-to-face event following the lifting of restrictions, and whilst there was a level of uncertainty for the team and the young people, it felt great to be finally back together. Fourteen young people participated in the event, which took place at the Calvert Trust in Exmoor. The weekend involved a range of confidence and skills building activities, including abseiling, zip wiring and canoeing, and activities to help the young people get to know each other.

When asked what they will do differently after attending the residential weekend young people told us: “Try new things activities wise as I felt like I would never abseil or zipwire and I done it.” “Try everything to get experience.” “Meet as many people as possible.” “Try to do more new activities/ skills. There’s no limits.” “Try and keep in contact with others.” “Take on all challenges.” “Come to more Meningitis Now events.”

Here are a few other highlights from the year:

We continually seek feedback from young people to help us shape the Believe & Achieve programme. For example, all of the topics for our online events this year were chosen as a result of feedback that we have received from our community. We do this using a range of methods, including through social media and the initial assessment that we carry out with young people when they join the programme. Using survey feedback from young people, we plan to continue offering a blended programme of in-person and virtual support.

During the latter half of the year we have been preparing and planning for a graduation-style ceremony for our Believe & Achievers, to celebrate the progress they have made during the first five years that the programme has been running. This event will take place in July 2022.

We also reviewed our learning from delivering Believe & Achieve over the last five years to consider the future shape of the programme, now that our initial major five-year grant from the National Lottery Community Fund is coming to an end. For example, we are aware that young people impacted by meningitis from a young age can experience difficulties as they reach 11 years of age. This is also an important time for them as they transition to secondary school, and so we are considering expanding the age range of the programme.

We would like to thank the National Lottery Community Fund and others for their ongoing funding and support which enabled us to deliver this important strand of our work to young people impacted by meningitis.

28

29

Broadening the scope of our research

This year, preparation and planning was underway to carry out our latest piece of commissioned research, which will explore the recovery and outcomes of UK adults (aged 16 and over) leaving hospital after a recent experience of meningitis. We will be working with the Picker Institute, who are a leading international health and social care research charity, to deliver this research. The aim of the research is to understand people’s experiences of the hospital discharge process and longer-term information and support needs, as well as highlight gaps (such as lack of followup care) and provide evidence to inform support provision.

We look forward to working with the Picker Institute next year on this important piece of research, which was previously postponed due to the pandemic.

Working in partnership across all sectors

The involvement and support of partner organisations is crucial to our work. We worked in partnership and consultation with many voluntary and statutory organisations. These included, for example, the Department of Health and Social Care, the National Institute for Health and Care Excellence, the World Health Organization, the Child Brain Injury Trust, Meningitis Research Foundation, UK Sepsis Trust, Contact, Child Bereavement UK, Headway, Limbless Society and the Encephalitis Society. We encouraged these organisations, and others, to signpost people to our services including our Believe & Achieve programme.

Acquired brain injury is a common meningitis after-effect and as a result we worked in partnership with a number of brain injury charities. This included the Child Brain Injury Trust (CBIT). We regularly referred families in need of support to each other and signposted to their resources. In April we presented at their virtual conference, providing several films and case studies.

“This is a superb example of the collaborative approach that both organisations have enjoyed with each other over many years, pulling together to help families affected by childhood Acquired Brain Injury due to meningitis. Such a pleasure to work so constructively with a wonderful charity.” Louise Wilkinson, Head of Information and Learning at the Child Brain Injury Trust

In addition, we were shortlisted for a collaboration award at an event to mark the 30th anniversary of CBIT. Whilst we didn’t win the award, we were delighted to be nominated and attend a wonderful evening of celebration in March.

30

31

Raising the funds

We’d like to say a huge thank you to everyone who supported Meningitis Now this year. The commitment of our supporters is remarkable, and we are so grateful to everyone for continuing to support our cause through what has been another challenging year.

With the Covid-19 pandemic still being present throughout much of 2021, with many government restrictions not being lifted until July, it meant that our ability to raise funds was still being impacted. This was predominantly in community and event fundraising, in particular throughout the first quarter of the financial year where we saw many mass participation events being postponed until later in 2021, including the London Marathon, London Landmarks Half Marathon and Kew Gardens 10K. We also saw the cancellation of the Edinburgh Marathon and the Vitality London 10,000.

We also had to make a number of difficult decisions which meant cancelling two of our own events, the Three Peaks Challenge and the Five Valleys Walk, all of which was a huge disappointment to us. We adapted our fundraising offer and decided to re-launch the virtual version of the Five Valleys Walk, the ‘Fabulous Virtual Walk’ as seen in 2020.

As we saw low levels of community-based fundraising due to Covid restrictions, we also launched our first Virtual Facebook Challenge, ‘Walk 30 Miles in June’, which saw over 300 participants taking part and raising over £8k in income.

As soon as restrictions eased in the Summer, we were thrilled to see events take place again, such as the Great North Run in September and the London Marathon in October, which saw over 45 participants cross the finish line, raising over £130k.

We were extremely pleased to welcome back our annual Christmas concerts in both London and Gloucester at the end of 2021, events which mean so much to everyone involved with the charity. We also saw the return of many community fundraising events held by our supporters, schools and organisations, raising over £340k.

Overall, we are pleased with the results of 2021-22 with community income increasing by 4.2 per cent and events income increasing by 700 per cent compared to the previous year.

We continued to receive substantial support from our long-term funders, which included major awards from BBC Children in Need, The National Lottery Community Fund, The Worshipful Company of Butchers, St James’ Place Charitable Foundation, The James Tudor Foundation, The Masonic Charitable Foundation and the Garfield Weston Foundation.

In total, we received donations from 71 grant-making bodies during the year, including The Pilkington Charities Fund, P F Charitable Trust, The Trott Family Trust, The Vandervell Foundation, The Adint Charitable Trust, The William & Mabel Morris Charitable Trust, The Boshier Hinton Foundation and The Hilda Clarke Memorial Fund.

We received donations from 72 companies during the year, including Wood Leisure, Boots, Pfizer, Irwin Mitchell, Enable Law, Simply Sports, NM Services, Boyes Turner, GSK, Findlay Park Partners, SharkNinja, Anthony Collins Solicitors, Kuehne+Nagel, Raffleaid, ATL Haulage Contractors Ltd, Connexus, Carter-Ruck, Bellway Homes and Maxwell Bond.

Thank you also to these companies whose staff selected us as their chosen charity: Turtle Tots, White Mountain, Aspire Magazine, Global MSC Security, Nationwide Building Society Dover, Iceland Foods Chatham and Loxley Legal. We were also delighted to receive the continuing support of B&A Group, Caroline Gardner Publishing, DP World London Gateway, Dehns Partners, Sophie Allport, Source Group International, Renishaw, Ecclesiastical Insurance Group, Bloomberg LP and Rightmove Group.

Moving supporter stories on BBC’s Lifeline Appeal

We were delighted when we were granted a TV charity appeal on Lifeline, the BBC’s monthly charity appeal programme. And even more delighted when our wonderful Celebrity Ambassador Lisa Snowdon agreed to present it.

The 10-minute broadcast went out twice, in April and May. It focused on our impact on fighting meningitis and highlighted the vital support we provide. Lisa introduced our Executive Founder Steve Dayman and also moving and heartfelt stories from supporters around the UK, including Joanna and Sophia Sloan, Julia Styles and Harmonie-Rose.

And those stories clearly made an impact on viewers, who dug deep to donate a fantastic £21,626 towards our ongoing work. Thank you everyone who contributed.

Sophia was admitted to hospital with meningitis as a baby. Thankfully she survived, but the disease left her with global developmental delays, severe learning disability and severe speech delay. We have supported the family through helping them arrange fundraisers, providing counselling, through our popular Family Days and, most recently, through funding a ‘Talker’ for Sophia through our Rebuilding Futures Fund.

Nineteen-year-old Teaching Assistant Emily was struck down with meningococcal meningitis on New Year’s Eve 2013. Mum Julia said: “We have so many wonderful happy memories from the moment Emily came into the world, but she had so much more to give and our immeasurable loss is for all that was yet to come. She would have been a brilliant teacher, wife and mummy, but sadly was denied these chances to shine.”

Julia, from Malmesbury in Wiltshire, speaks movingly on the Lifeline Appeal about how we provided support like "arms wrapped around her" and of the importance of our reaching out after she lost Emily. In particular, she has positive things to say about our Forever Weekend.

Harmonie-Rose’s story will be well known to many of the Meningitis Now family, who will have followed it on our website and social media as she has blossomed into an energetic and lively youngster since losing her arms and legs to meningitis at 10 months old. Our founder Steve rushed to visit Harmonie in hospital, offering help and support to the family, especially mum Freya and dad Ross, as they dealt with every parent’s worst nightmare. In recognition of Harmonie-Rose and her family’s ongoing support we made the Bath youngster our first Junior Ambassador.

Our Fundraising Manager Megan Thompson said: “We are incredibly grateful to our supporters who have taken the time to get involved in this programme and spoken so movingly and bravely about the impact meningitis has had on their lives and their involvement with our charity.

“As a charity that exists to save lives and rebuild futures we’re so grateful to the BBC for showcasing our work in this way and helping us to raise such valuable awareness.

“We’d like to extend an enormous thank you to everyone who took part in the programme, particularly Lisa, and all those who tuned in to watch.”

From left to right: Sophia Sloan, Emily Styles and Harmonie-Rose Allen, whose moving stories featured in our BBC Lifeline Appeal.

32

33

No catching Lisa

This wasn’t the only money-raising TV appearance by Lisa on our behalf during the year – she also braved the challenge of Celebrity Catchphrase, raising a further £14,500 towards our lifesaving and life-changing work.

Lisa told host Stephen Mulhern that Catchphrase is a legendary show and that she had been known to play along with it at home. But she also admitted to a 'mixture of excitement and nerves' as the episode got underway. She was soon into her stride though, with some expert 'pressing and guessing'.

The programme, which requires contestants to identify a well-known phrase or saying from an animation, soon saw Lisa racking up the money

as she identified ‘Named and shamed’, ‘Hitting a bum note’ and ‘Don't scare the horses’ as the correct answers to the first few animations.

And so it continued, leaving her to face the final pyramid challenge and the chance to win £50k for us.

But that didn't stop her correctly guessing three more answers to reach such a wonderful total.

Voices in harmony at our London and Gloucester carol concerts

One sign of recovery and rebuild was the sight of supporters and invited guests gathering together in person for the return of our popular and poignant Christmas Celebration Concerts in Gloucester Cathedral and St Lawrence Jewry Church in London in December.

As our Royal Patron HRH The Countess of Wessex wrote in the introduction to the London programme “It is all the more special this year because we can again meet face to face. Given that this past year this has been so difficult for so many individuals and families, as well as charities, this is a moment to celebrate.”

These musical celebrations are among the most popular events in our calendar, offering traditional Christmas carols and festive musical entertainment in wonderful and moving settings.

----- Start of picture text -----
A Christmas
Celebration Concert
at Gloucester Cathedral
Thursday 2nd December 2021 Carol ConcertChristmas
at St Lawrence Jewry Church, London
Monday 6th December 2021
6.30pm
Featuring performances by:
James McVinnie, organist and pianist
Cheryl Enever, soprano and Gabriella Swallow, cellist
Featuring performances by:•••• Gloucester GangshowEveryman, Golden StepsDanceworks CheltenhamHighnam C of E Primary Academy Popchoir Compère: Andrew Harvey
Compère: Dominic Cotter, BBC Radio Gloucestershire
----- End of picture text -----

First up was Gloucester, where once again the focal point was the Christmas tree adorned with hundreds of white ribbons, each one in remembrance of a loved one lost to meningitis.

The evening saw performances from Gloucester Gangshow, Highnam Academy, Rock Choir and Danceworks Cheltenham, all expertly compered by Dominic Cotter from BBC Radio Gloucestershire.

It also featured an emotional appeal from our Community Ambassador Alison Walker and her son Matt, a Young Ambassador for us, who spoke movingly about the loss of her daughter and his sister Hannah from meningitis.

Organiser, our Fundraising Officer Sophia Lanciano, said: “We were so happy to be able to join together again at Gloucester Cathedral following such a challenging time, to reflect on our loved ones and enjoy some little ‘pockets of joy'.”

For those unable to attend in person the Gloucester concert was streamed live on our YouTube and Facebook channels.

This was followed by the London Concert, as always expertly compered by our president Andrew Harvey, presenter of BBC News for many years, whose daughter Lucy had meningitis in 1998.

Again, there was a range of talented professional singers and musicians providing the entertainment, alongside the exuberance of Popchoir, one of the original and largest contemporary choirs in London.

We were also joined on the night by our Celebrity Ambassador and Harlequins and England Red Roses rugby player Rosie Galligan. Rosie contracted meningitis in September 2019 but has fought her way back into the England team, and went on to help them to a Grand Slam in this spring’s Six Nations championship.

There was a moving address from our Community Ambassador Graeme Burridge. Graeme and his wife Gail lost their daughter Katherine in October 2016 and have been dedicated volunteers and fundraisers ever since.

We were also pleased to welcome new Celebrity Ambassadors Danielle Nicholls and Dean Holden to the concert. The TV and radio host and her football manager husband were keen to join the fight back against meningitis after losing their beloved 17-month baby daughter Cici Milly Holden to the disease in May 2012.

Danielle told us: “I’m really pleased to have the opportunity to support Meningitis Now, which does such valuable and inspiring work fighting back against meningitis and the devastation it leaves behind it.”

She added: “I’m looking forward to helping to raise awareness and promote the charity’s work in funding research to find new vaccines and supporting individuals and families who have been affected by meningitis to rebuild their lives.”

And raise awareness they certainly did when, just a few weeks later they appeared on the Breakfast TV sofa, reaching millions with their poignant story of Cici.

34

35

Fundraising regulation

The restructuring of the Fundraising and Communications functions at Meningitis Now was an opportunity to review our programme of fundraising and income generating activities in order to ensure that we achieve a broad portfolio and are not overly reliant on particular sources of income. This was particularly important as we learned which programmes would continue to be affected by the end of the pandemic. We remain committed not to operate house-to-house collections or telephone fundraising campaigns. Our activities are delivered and managed by professional fundraisers employed directly by the charity, or by professional fundraising consultants who are embedded within our team. We continue to benefit from the support and dedication of hundreds of volunteers who fundraise in aid of us every year. We are registered with the Fundraising Regulator and have paid the levy since its inception.

All members of the Fundraising Team work to agreed Fundraising Standards. We use the Chartered Institute of Fundraising’s Introduction to Fundraising to guide and inform our work. As part of our commitment to developing the team and retaining high standards of supporter stewardship we undertake regular training courses and several members of the team have achieved the Chartered Institute of Fundraising Diploma in Fundraising or their Future Leaders Course.

We have a range of processes and protocols in place to help us protect vulnerable people, including mandatory safeguarding and data protection training for all fundraising staff. We also provide training, guidance and support when working with bereaved families. We have developed a suite of fundraising agreements which we use when companies are working with us to raise funds. This includes Commercial Participator Agreements where required.

We received 12 items of feedback/complaints related to fundraising during the year that were resolved in line with our published Complaints Policy. There were no notable trends or major issues of concern. All of the feedback/complaints received related to minor matters and all complainants were dealt with to their satisfaction.

We spent 30 per cent of our total expenditure on generating funds and securing income for future years.

William’s Marathon

The thumbs up and broad smile say it all – young William has finished his Marathon fundraiser and absolutely smashed his target.

Proud mum and Dad Becky and Craig said: “William covered 31.9 miles and raised a whopping £5,692.05.

“What a journey it’s been. His quiz night was a huge success too and everyone has been behind him 100 per cent.

“We are extremely proud of what he has achieved and the welcome home from our village was amazing.”

Five-year-old William, from near Grantham in Lincolnshire, had meningitis as a baby.

Becky said: “ When William started coughing we just assumed he was getting a cold. But when he couldn’t lay down we started to get concerned that something didn’t seem right and took him to the doctor.”

The GP told Becky to take him straight to hospital and it was only as the family arrived that William started developing a rash over his body and becoming lifeless. He spent the next two weeks in hospital with his family by his side.

Becky added: “ He literally fought every second. We just spent the days hoping he would pull through.”

Thankfully he did and to say thank you William and his family planned the 26 mile walk and cycle in May.

“He loves the great outdoors and enjoys his adventures so we thought we would combine the two and give something back” Becky added.

36

37

Finance, staff and infrastructure

Finance

Like the prior year, 2021-22 proved challenging from a financial perspective. The inherent unpredictability of the external environment required careful and active financial management, but careful cost-control in 2020-21 meant that we remained both sustainable and able to make targeted investments in the year as part of our new strategy.

Total income was down by 8.4 per cent per cent to £2.1 million in the year. However, it is notable that the prior year included extraordinary items such as the Government Coronavirus Job Retention Scheme of £320k and one-off emergency grants. Income excluding these items increased by 12.8 per cent year on year. Our legacy and events income increased but this was offset by reductions in other donations.

Total expenditure decreased by 6.2 per cent on the previous year to £2 million. Following the restructure in 2020-21, payroll related costs reduced by 20 per cent, and this was balanced off with increases in areas such as research and support activity, which had been reduced due to the impact of the pandemic. We were able to start one of the research projects which we had previously not been able to pursue due to the impact of the pandemic on our finances and the need to divert funds to front line support services.

We spent approximately 69.4 per cent of our total spend on our charitable activities, just slightly less than the prior year, reflecting the increase in fundraising activity after the lifting of Covid constraints. However, we reduced our total cost of fundraising by 2.2 per cent on the prior year with 30.6 per cent of our total spend on fundraising.

There was a gain of £19k in the year on the investment which was originally made in April 2016 in a portfolio fund of Sarasin & Partners LLP. The original investment was £500k, and, as at 31 March 2022, the value was £72k.

Overall, we achieved a surplus of £115k.

Cash and investments at the end of the year stood at £2.3 million, £6k higher than the prior year. The end of year unrestricted reserves stood at £1.6 nmillion. This good level of reserves has enabled us to plan to utilise approximately £665k of reserves in 2022-23.

During 2020-21, the charity created a three-year financial plan to support recovery and rebuilding following the impact of the Covid-19 pandemic. This plots a ‘flight path’ towards sustainability by identifying the income and expenditure requirements to enable sustainable use of reserves and achieve long-term financial balance.

Review of performance of our Trading Subsidiary

Meningitis Now’s wholly owned trading subsidiary, Meningitis Trust Trading Limited, passes its profits to Meningitis Now through Gift Aid. The income in 2021-22 was from the sale of Caroline Gardner Christmas Cards.

Staff and infrastructure

Following the major restructure undertaken in Autumn 2020, our approach for 2021-22 was to ‘recover and rebuild’. We continued to focus on staff wellbeing, acknowledging the challenges and impact that Covid-19 had on everyone’s daily lives. We ran regular wellbeing drop-ins as well as sessions on specific topics such as ‘Improving Sleep’, ‘Muscle Relaxation’ and ‘Breathing Techniques’. Although various levels of government restrictions were still in place during the year, we were able to put measures in place to enable staff to use the office more regularly. We were also able to meet face-to-face as a whole team again in October 2021, during which we reflected on the challenges and progress we had made as a team.

We re-ran our ‘Making Meningitis Now a Great Place to Work’ surveys during the year and all but one topic saw an improvement compared to the 2019 results. Given the challenges and changes the charity experienced during 2020, this was an excellent outcome. Following the responses to the ‘Flexible Working and Work-Life Balance’ survey, we made the decision to adopt a more permanent Hybrid Working policy in March 2022, allowing staff to work from home 50 per cent of the time. This has been very well received.

In order to improve the employee experience and ‘back-office’ processes, we implemented CitrusHR in April 2021. This is an HR platform where staff and managers can self-manage their HR profiles online. Given our move to becoming a more hybrid organisation, this change has made a significant improvement to our processes and user experience. We also started using CitrusHR for payroll, meaning payslips and salary information is also managed this way.

Our staffing establishment increased from 36 to 38 heads over the year, or 28 to 30 Full-Time Equivalent (FTE) staff. During this period there were a number of small but significant changes to the staff team, with the retirement of the Director of Communications in the summer of 2021 and the departure of the Director of Fundraising in Autumn 2021. These departures enabled us to merge the two teams and recruit a new Director of Fundraising and Communications, who joined the charity in January 2022.

38

39

The future

Our plans in 2022-23 include:

----- Start of picture text -----
1
----- End of picture text -----

Fight to defeat meningitis in the UK within a generation

2

Reach out to everyone who needs help, support and information

3

Be recognised as a centre of expertise for aftercare and support

As an organisation we will also work hard to ensure that the staff team – as well as the wider network of people and organisations who work alongside us – are supported to help us to save lives and rebuild futures:

40

41

Governance

Organisational structure

Meningitis Now is based and operates in the UK, with its headquarters in Stroud, Gloucestershire. During 2021-22, we were governed by a board of 9-12 Trustees who met on a quarterly and needs-basis during the year. The Trustees operate with four sub-committees that review specialist aspects of our work or that undertake work on behalf of the full Board of Trustees: Audit and Risk, Investment, Remuneration, and Nominations.

Each comprises a subset of Trustees with invitations to attend made to members of the Senior Leadership Team with appropriate skills or knowledge.

At the AGM in October 2021, a change was made to our Articles of Association to explicitly reference the acceptability of meeting by electronic means. In practice, this meant that during 2021-22 most meetings took place online, especially during periods of lockdown and social distancing. The provision to allow for electronic meetings means that, in future, a combination of in-person, on-line and hybrid meetings can allow for maximum efficiency and flexibility.

The AGM also saw the resignation of Andy Fletcher, our Chair of Trustees, and the retirement of Stephen Gazard. As a result of an extensive recruitment process undertaken over spring and summer 2021, we were delighted to appoint five new Trustees including Chris Philipsborn, Holly Byrne, Randy Weeks, Nikki Richardson and Stephen Sutcliffe. Holly, Randy and Stephen each have close lived experience of meningitis and all five bring diverse skills and experiences to the Board.

Day-to-day running is delegated to the Chief Executive and the Senior Leadership Team. Strategies, budgets and plans are approved by the Board with performance subsequently reported against plans and budgets.

Remuneration and conflicts of interest

In determining our Remuneration Policy, the Remuneration Committee takes into account all factors which are deemed necessary. The objective of the policy is to ensure that the CEO and staff team are remunerated in line with market rates for the skills, competencies and experience they bring. To facilitate this and to ensure that we remain competitive in the employment market, the charity has created an internal Pay Review Panel. This body sits regularly to ensure that we remain sensitive to issues such as pay and employment conditions.

Delivery of our charitable vision is primarily dependent on our staff, which is the largest single element of charitable expenditure. In the year 2021-22, there was a small cost-of-living pay increase. There were no staff who earned between £60k and £80k and only one member of staff earned more than £80k in the year. Further information on pension arrangements and on the salary costs for the year, with comparisons with the previous year, are presented in the notes to the financial statements.

No Trustees are remunerated for their role within the Charity, receiving only out-of-pocket expenses. A Conflicts Register is maintained to ensure no Trustees receive indirect remuneration for their involvement.

Public benefit

The Trustees have referred to the guidance contained in the Charity Commission's general guidance on public benefit when reviewing our aims and objectives and in planning our future activities. In particular, the Trustees considered how planned activities will contribute to the aims and objectives that have been set.

Fundraising practice

We have a clear Fundraising Policy, which is approved by the Board and reviewed annually (https://www.meningitisnow.org/support-us/who-we-are/data-protection/fundraisingpolicy/).

This governs how we work with funders, and whilst we actively seek to work with external organisations and individuals to achieve shared objectives, we recognise that it is vital that we maintain our independence and do not allow any external partnership to bring the reputation of Meningitis Now into disrepute.

Meningitis Now’s key principles of responsible fundraising are:

We are registered with the Fundraising Regulator.

Reserves policy and going concern

We started 2021-22 with reserves above our upper level as defined by the charity’s Reserve Policy, which Trustees explicitly acknowledged as providing a valuable buffer against the operational and financial challenges and uncertainty resulting from the Covid-19 pandemic. At the start of 2021-22, we had planned to use £500k of our reserves during 2021-22. However, due to improved income, largely due to legacies and events, and expenditure slightly lower than budget, we had a surplus of just over £100k. Our closing free reserves were therefore higher than anticipated at £1.6 million, including investments which are liquid and easily converted to cash, £142k higher than the prior year.

Our policy of holding six months’ operating costs in unrestricted reserves gives a target range of £420k to £580k (the latter including six months core fundraising costs), compared with £388k to £530k in 2020-21. This target range takes into account the fact that we do not have any committed long-term income, that income levels fluctuate significantly across the year, and that a proportion of costs are fixed in nature, all of which have a direct impact on the cash flow.

The Trustees believe that holding six months’ operating costs in unrestricted reserves remains prudent and they monitor sustainability with a regular 12-month forward view.

Looking ahead, the 2022-23 budget plans to utilise £600k of reserves in funding additional staffing, support activity and research projects, and the three-year plan sees reserves reach their target level.

On this basis, the Trustees have concluded that the Charity is a going concern, and that there are no reasonably foreseeable material uncertainties within the next 12 months that would endanger our ability to continue operating and paying liabilities as they fall due.

42

43

Investment policy and performance

The Trustees have the power to invest in such assets as they see fit. In 2016-17, the Trustees invested £500k of the reserves with Sarasin & Partners in a multi-asset, multi-market portfolio, recognising their responsibility to make the assets of the Charity work as effectively as possible. This is seen as a long-term investment. Foster Denovo were appointed as investment advisers. The investment was made in 2016 and has been overseen since then by the Investment SubCommittee of the Board. During 2021-22 the value of these investments increased to a value of £728k at March 2022. This represents a significant return since 2016-17.

During 2021-22, the majority of cash was held in interest bearing accounts; the yield on which was 0.1 per cent for the year.

Risk statement

The Trustees have an Audit and Risk Committee comprising five Trustees and the Chief Executive and Head of Finance in attendance. The Committee regularly reviews a risk register and the charity’s risk profile, including both strategic and operational risks.

  1. Risks to cyber security and data protection, which remain present as we (in common with many organisations) become more reliant on digital forms of data storage, communication and financial transactions. A breach of cyber/data security could prove operationally, financially and reputationally damaging.

Such risks are common to many charities and organisations in the UK, although this is not to minimise their likelihood or impact. The charity continues to operate an active approach to risk management, addressing both strategic and operational risk. This means that once a risk is identified, we will create action plans to mitigate as far as possible its occurrence and impact.

We therefore consider that reasonable mitigations or plans are in place to address the principal risk set out above as well as those identified in the charity’s Risk Register. As set out in this report, risks (1) and (2) above are mitigated through the adoption of a new five-year strategy and annual operational plans, as well as a three-year financial plan. In this context, the CEO and SLT actively manage our finances, taking a quarterly, 12 month-forward review of income and expenditure to ensure that we remain sustainable. These reviews are shared with the Trustees via the Audit and Risk Committee.

During 2021-22, the risk environment remained elevated and uncertain, with the parallel crystallisation of multiple and significant risks in 2020-21 serving as a reminder of the importance of careful risk management. That year saw significant reductions in income across a number of income streams, as well as operational changes such as the temporary closure of Fern House and the shift to remote working. As in 2020-21, the changing nature of the pandemic caused the risk profile of the charity to vary significantly in the year. For example, the cancellation of our mass-participation event the Five Valleys Walk in 2021 lowered the risk profile of the charity. By contrast, the gradual resumption of face-to-face events was accompanied by new risks around infection control and ensuring sufficient staffing were present at events.

By February 2022 the risks associated with Covid-19 had become normalised, hence the CEO and the SLT undertook to transition from using the bespoke ‘Covid-19’ risk register created in 2020 to using a newly updated and reformatted main register.

The principal risks facing the charity in 2022-23 are as follows:

  1. Ongoing short- to medium-term reductions/fluctuations in income related to external environment following the Covid-19 pandemic (for example, inflation and the cost of living; risk of recession; ongoing Covid-19 risks (such as people’s willingness and ability to fundraise); potential cancellation of third-party fundraising events such as marathons; renewed threat of lockdown and social distancing in case of a resurgent virus). Such risks could jeopardise the charity’s plan to recover and rebuild and force divergence from the three-year financial plan.

  2. Failure to plan effectively and to adapt after the Covid-19 pandemic, which risks our ongoing and long-term sustainability to achieve our aims and objectives. This includes two distinct risks:

  3. The need to respond to the changing incidence of meningitis and septicaemia in the UK, which fell during the 2020-21 epidemiological year. There was a rebound in cases of meningococcal disease in 2021 amongst students/young adults, underlining the challenges facing epidemiologists in forecasting future trends and for the charity in allocating resource to address need.

  4. Change management and the challenge of achieving growth amidst uncertainty. The need to manage the risks relating to our organisational capacity/recovery following a major restructure in 2020-21 (for example, key person dependency) and the need to adapt to the opportunities and threats this presents.

44

45

Statement of Trustees’ Responsibilities

The Trustees (who are also Directors of Meningitis Now for the purposes of company law) are responsible for preparing the Trustees’ report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Company law requires the Trustees to prepare financial statements for each financial year, which give a true and fair view of the state of affairs of the charitable company and the group and of the incoming resources and application of resources, including the income and expenditure, of the charitable company/group for that period. In preparing these financial statements, the Trustees are required to:

The Trustees are responsible for keeping adequate accounting records that disclose with reasonable accuracy at any time the financial position of the charitable company and enable them to ensure that the financial statements comply with the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005 and the Charities Accounts (Scotland) Regulations 2006 (as amended). They are also responsible for safeguarding the assets of the charitable company and the group and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

In so far as the Trustees are aware:

The Trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charitable company's website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions.

The Trustees

The Trustees, who are also directors under company law, who served during the year and up to the date of this report, were as follows:

Mr A Fletcher, Chairman (resigned October 2021)

Mr J Sutherland, Vice Chairman

Miss H Marsh, Treasurer

Mr R Adlington

Mrs S Blackie

Mr S Gazard (retired October 2021)

Professor S Kroll

Mrs J Marsh

Ms E Thomas

Mr C Philipsborn, Chairman (appointed October 2021)

Ms H Byrne (appointed October 2021)

Mrs Richardson (appointed October 2021)

Mr S Sutcliffe (appointed October 2021)

Mr R Weeks (appointed October 2021)

Appointment of Trustees

The Trustees operate a Nominations Committee. This committee is made up of four Trustees and the Chief Executive in attendance. This committee is responsible for overseeing the skills mix of the Board and recruitment of new Trustees. Five new Trustees were appointed in 2021-22.

Members of the charitable company guarantee to contribute an amount not exceeding £1 to the assets of the charitable company in the event of winding up. The total number of such guarantees at 31 March 2022 was 44 (2021 – 40).

The Trustees have no beneficial interest in the group or charitable company.

Auditors

Sayer Vincent were reappointed as auditors during the year and have expressed their willingness to continue in that capacity.

The report of the Trustees has been prepared in accordance with the special provisions applicable to companies subject to the small companies' regime.

Approved by the Trustees on 14 September 2022 and signed on their behalf by

Christopher Philipsborn – Chairman

46

47

Reference and administrative details for the year ended 31 March 2022

Status The organisation is a charitable company limited by guarantee, incorporated on 12 February 1990 and registered as a charity in England and Wales on 9 March 1990. On 7 February 2007, the Charity was registered with the Office of the Scottish Regulator (OSCR).

Governing document The organisation was established under a Memorandum of Association, which established the objects and powers of the organisation and is governed under its Articles of Association, which were last updated in September 2013.

Company number 2469130

Charity numbers 803016 England & Wales SC037790 Scotland

Registered office and operational address Fern House, Bath Road, Stroud, Gloucestershire GL5 3TJ

Trustees Mr A Fletcher, Chairman (resigned October 2021) Mr J Sutherland, Vice Chairman Miss H Marsh, Treasurer Mr R Adlington Mrs S Blackie Mr S Gazard (retired October 2021) Professor S Kroll Mrs J Marsh Ms E Thomas Mr C Philipsborn, Chairman (appointed October 2021) Ms H Byrne (appointed October 2021) Mrs Richardson (appointed October 2021) Mr S Sutcliffe (appointed October 2021) Mr R Weeks (appointed October 2021)

Royal Patron

Patrons & Ambassadors

HRH The Countess of Wessex GCVO

Dr Tim Brain OBE, QPM, BA, PhD, FRSA, CCMI Dr Ellie Cannon Baroness Corston Professor the Lord Darzi of Denham KBE, OM, HonFrEng, FMedSci Petra Ecclestone Julie Hesmondhalgh Dr Robert Hicks Seema Jaswal Denis Law CBE Dr Mark Porter MBE Tana Ramsay Ken Loach Geoff Shaw Dr Ranj Singh Ian Rush MBE Dr Chris Steele MBE Lisa Snowdon Joanna Trollope OBE Dr Jane Wells MBE Rt Rev. and the Rt Hon. The Lord Williams of Oystermouth Rosie Galligan

Dean Holden Danielle Nicholls

President Andrew Harvey

Principal staff Dr Tom Nutt, Chief Executive Dr Steve Dayman MBE, Executive Founder

Honorary Medical Director Professor Simon Kroll MA, BM, BCh, FRCPCH, FRCP, FMedSci Scientific & Medical Advisory Panel Dr Caroline Vipond PhD (Chair) Professor Simon Kroll (Vice Chair) Dr Xilian Bai PhD Professor David Dockrell MD, FRCP,I FRCP, (Glas) FACP Dr Darryl Hill BSc, PhD (Wales) Professor Tim Mitchell BSc, PhD, FRCPath Dr Simon Nadel MBBS, MRCP, FRCP Dr Mary Ramsay

48

49

Meningitis Now Report and Financial Statements

Meningitis Now Report and Financial Statements

Independent auditor’s report to the members of Meningitis Now

Opinion

We have audited the financial statements of Meningitis Now (the ‘parent charitable company’) and its subsidiary (the ‘group’) for the year ended 31 March 2022 which comprise the consolidated statement of financial activities, the group and parent charitable company balance sheets, the consolidated statement of cash flows and the notes to the financial statements, including significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including FRS 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).

In our opinion, the financial statements:

Basis for opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the auditor’s responsibilities for the audit of the financial statements section of our report. We are independent of the group in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC’s Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.

Conclusions relating to going concern

In auditing the financial statements, we have concluded that the trustees' use of the going concern basis of accounting in the preparation of the financial statements is appropriate.

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on Meningitis Now's ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.

Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.

Other Information

The other information comprises the information included in the trustees’ annual report, other than the financial statements and our auditor’s report thereon. The trustees are responsible for the other information contained within the annual report. Our opinion on the financial

statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.

Our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the course of the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact.

We have nothing to report in this regard.

Opinions on other matters prescribed by the Companies Act 2006

In our opinion, based on the work undertaken in the course of the audit:

Matters on which we are required to report by exception

In the light of the knowledge and understanding of the group and the parent charitable company and its environment obtained in the course of the audit, we have not identified material misstatements in the trustees’ annual report.

We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 and Charities Accounts (Scotland) Regulations 2006 (as amended) requires us to report to you if, in our opinion:

Responsibilities of trustees

As explained more fully in the statement of trustees’ responsibilities set out in the trustees’ annual report, the trustees (who are also the directors of the parent charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

50

51

Meningitis Now Report and Financial Statements

Meningitis Now Report and Financial Statements

In preparing the financial statements, the trustees are responsible for assessing the group’s and the parent charitable company’s ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the group or the parent charitable company or to cease operations, or have no realistic alternative but to do so.

Auditor’s responsibilities for the audit of the financial statements

We have been appointed as auditor under section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005 and under the Companies Act 2006 and report in accordance with regulations made under those Acts.

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor’s report that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.

Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud are set out below.

Capability of the audit in detecting irregularities

In identifying and assessing risks of material misstatement in respect of irregularities, including fraud and non-compliance with laws and regulations, our procedures included the following:

Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of non-compliance. The risk is also greater regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery, collusion, omission or misrepresentation.

A further description of our responsibilities is available on the Financial Reporting Council’s website at: www.frc.org.uk/auditorsresponsibilities . This description forms part of our auditor’s report.

Use of our report

This report is made solely to the charitable company's members as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006 and section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005. Our audit work has been undertaken so that we might state to the charitable company's members those matters we are required to state to them in an auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charitable company and the charitable company's members as a body, for our audit work, for this report, or for the opinions we have formed.

Jonathan Orchard (Senior statutory auditor) 27 September 2022

for and on behalf of Sayer Vincent LLP, Statutory Auditor Invicta House, 108-114 Golden Lane, LONDON, EC1Y 0TL

Sayer Vincent LLP is eligible to act as auditor in terms of section 1212 of the Companies Act 2006.

52

53

Meningitis Now

Company no. 2469130

Meningitis Now

Consolidated statement of financial activities (incorporating an income and expenditure account)

Balance sheets

For the year ended 31 March 2022

As at 31 March 2022

For theyear ended 31 March 2022 For theyear ended 31 March 2022
Unrestricted
Note
£
Income from:
2
1,411,331
3
-
3
-
3
-
3
-
3
-
3
-
175,094
4,234
11b
25,411
147
1,616,217
558,856
38,715
849
598,420
234,500
418,364
129,580
80,780
25,570
888,793
4
1,487,213
(6,165)
18,253
17
141,092
Reconciliation of funds:
1,453,844
1,594,936
Fundraising events
Trading activities
Fundraising events
Trading activities
Investments - interest on bank deposits
Total income
Expenditure on:
Raising funds
Donations and legacies
Other income
Donations and legacies
Other trading activities
Charitable activities
Support
Comms & Awareness
Advocacy & Engagement
Research
Fundraising
Knowledge & Info Sharing
Total expenditure
Net income / (expenditure) before net
gains on investments
Charitable activities
Knowledge & Info Sharing
Research
Net (losses)/gains on investments
Advocacy & Engagement
Transfers between funds
Support
Comms & Awareness
122,839
Total funds brought forward
Total funds carried forward
Net movement in funds		 Restricted
£
151,221
246,401
11,100
11,375
6,375
500
-
8,701
-
-
-		 2022
Total
£
1,562,552
246,401
11,100
11,375
6,375
500
-
183,795
4,234
25,411
147		 Unrestricted
£
1,671,992
-
-
-
-
-
-
21,231
-
20,755
21,003		 Restricted
£
152,263
110,495
101,730
31,342
22,047
34,000
50,000
3,429
-
-
-		 2021
Total
£
1,824,255
110,495
101,730
31,342
22,047
34,000
50,000
24,660
-
20,755
21,003
1,616,217 435,673 2,051,890 1,734,981 505,306 2,240,287
558,856
38,715
849		 -
155
-		 558,856
38,870
849		 546,148
12,350
2,840		 -
50,650
-		 546,148
63,000
2,840
598,420 155 598,575 561,338 50,650 611,988
234,500
418,364
129,580
80,780
25,570		 286,409
61,776
18,753
21,961
79,309		 520,909
480,140
148,333
102,741
104,879		 421,184
387,183
119,466
82,432
-		 168,801
156,643
48,543
33,937
55,668		 589,985
543,826
168,009
116,369
55,668
888,793 468,208 1,357,001 1,010,265 463,592 1,473,857
1,487,213
(6,165)
18,253
122,839		 468,363
6,165
-
(26,525)		 1,955,576
-
18,253
96,314		 1,571,603
(22,059)
91,035
141,319		 514,242
22,059
-
13,123		 2,085,845
-
91,035
154,442
141,092
1,453,844		 (26,525)
573,396		 114,567
2,027,240		 232,354
1,221,490		 13,123
560,273		 245,477
1,781,763
1,594,936 546,871 2,141,807 1,453,844 573,396 2,027,240
As at 31 March 2022
Balance sheets		 Company no. 2469130 Company no. 2469130
Note
Fixed assets:
10
11
Current assets:
13
Liabilities:
14
18
Total unrestricted funds
Total funds
Investments
Cash at bank and in hand
Tangible assets
Creditors: amounts falling due within one year
Net current assets / (liabilities)
Total net assets / (liabilities)
Restricted income funds
Unrestricted income funds:
General funds
Total assets less current liabilities
Debtors
Funds:		 2022
2021
£
£
35,855
19,013
728,414
710,192
764,269
729,205
142,953
26,964
1,583,897
1,596,277
1,726,850
1,623,241
349,313
325,206
1,377,537
1,298,035
2,141,807
2,027,241
2,141,807
2,027,241
546,871
573,396
1,594,936
1,453,845
1,594,936
1,453,845
2,141,807
2,027,241
The group		 2022
2021
£
£
35,855
19,013
728,416
710,194
764,271
729,207
153,034
37,612
1,573,814
1,583,187
1,726,848
1,620,799
349,313
322,765
1,377,535
1,298,034
2,141,806
2,027,241
2,141,806
2,027,241
546,871
573,396
1,594,935
1,453,845
1,594,935
1,453,845
2,141,806
2,027,241
The charity
764,269
142,953
1,583,897		 764,271
153,034
1,573,814		 729,207
37,612
1,583,187
1,726,850
349,313		 1,726,848
349,313		 1,620,799
322,765
1,377,537 1,377,535 1,298,034
2,141,807 2,141,806 2,027,241
2,141,807 2,141,806 2,027,241
546,871
1,594,936		 546,871
1,594,935		 573,396
1,453,845
1,594,936 1,594,935 1,453,845
2,141,807 2,141,806 2,027,241

These accounts have been prepared in accordance with the special provisions applicable to small companies subject to the small companies' regime.

Approved by the trustees on 14 September 2022 and signed on their behalf by

Christopher Phillipsborn Chairman

All of the above results are derived from continuing activities. There were no other recognised gains or losses other than those stated above. Movements in funds are disclosed in Note 17a to the financial statements.

Following the introduction of our new strategy in 2021, Making a Difference Every Day, we have revised the presentation of our charitable activities to more appropriately reflect the activities to deliver our new strategy. The prior year results have been restated against the revised activities and this does not have any impact on the total movement in funds.

54

55

Meningitis Now

Meningitis Now

Notes to the financial statements

Consolidated statement of cash flows

For the year ended 31 March 2022

For the year ended 31 March 2022

Reconciliation of net income / (expenditure) to net cash flow from operating activities

a) Statutory information

Depreciation charges
Losses/ (Gains) on investment
Dividends and interest from investments
(Profit)/loss on the disposal of fixed assets
Decrease/ (increase) in debtors
Increase/(decrease) in creditors
Net (expenditure) / income for the reporting period
(as per the statement of financial activities)
Net cash provided by operating activities
Cash and cash equivalents at the end of the year
Change in cash and cash equivalents in the year
Cash flows from operating activities
Net cash provided by / (used in) investing activities
Net cash (used in) operating activities
Cash flows from investing activities:
Dividends and interest
Purchase of fixed assets
Disposal proceeds
Movement in investment cash
Proceeds from sale of investments
Purchase of investments
Cash and cash equivalents at the beginning of the
year		 2022
£
114,567
9,443
(18,253)
(147)
3,240
(115,989)
24,107
16,968
£
£
16,968
147
(29,527)
29,566
(29,738)
-
204
(29,348)
(12,380)
1,596,277
1,583,897
2022		 2021
£
245,478
18,350
(91,035)
(21,003)
-
159,984
(51,527)
260,247
£
£
260,247
21,003
(2,167)
-
(20,000)
-
(245)
(1,409)
258,838
1,337,439
1,596,277
2021		 2021
£
245,478
18,350
(91,035)
(21,003)
-
159,984
(51,527)
260,247
1,596,277

These financial statements consolidate the results of the charitable company and its wholly-owned subsidiary Meningitis Trust Trading Limited, over which the charity has control through membership, on a line by line basis. Transactions and balances between the charitable company and its subsidiary have been eliminated from the consolidated financial statements. Balances between the companies are disclosed in the notes of the charitable company's balance sheet. A separate statement of financial activities, or income and expenditure account, for the charitable company itself is not presented because the charitable company has taken advantage of the exemptions afforded by section 408 of the Companies Act 2006.

c) Public benefit entity

The charitable company meets the definition of a public benefit entity under FRS 102.

d) Going concern

The trustees do not consider that there are any sources of estimation uncertainty at the reporting date that have a significant risk of causing a material adjustment to the carrying amounts of assets and liabilities within the next reporting period.

e) Income

Income from grants is recognised when the charity has entitlement to the funds, any performance conditions attached to the grants have been met, it is probable that the income will be received and the amount can be measured reliably and is not deferred.

For legacies, entitlement is taken as the earlier of the date on which either: the charity is aware that probate has been granted, the estate has been finalised and notification has been made by the executor(s) to the charity that a distribution will be made, or when a distribution is received from the estate. Receipt of a legacy, in whole or in part, is only considered probable when the amount can be measured reliably and the charity has been notified of the executor’s intention to make a distribution. Where legacies have been notified to the charity, or the charity is aware of the granting of probate, and the criteria for income recognition have not been met, then the legacy is a treated as a contingent asset and disclosed if material.

Income from fundraising events is recognised in the period in which it is received, except where it is refundable. Where it is refundable, income is retained on the balance sheet and only released when the obligation to refund is no longer applicable. Where expenditure is incurred for an event in a future year, it is expensed to the accounts of the year in which the legal obligation arises.

Income from trading activities is the income from the Charity's trading subsidiary which is transferred to the Charity by way of a gift in accordance with a profit shedding agreement between the Charity and its subsidiary.

Income received in advance of the provision of a specified service is deferred until the criteria for income recognition are met.

On receipt, donated gifts, professional services and donated facilities are recognised on the basis of the value of the gift to the charity which is the amount the charity would have been willing to pay to obtain services or facilities of equivalent economic benefit on the open market; a corresponding amount is then recognised in expenditure in the period of receipt.

56

57

Meningitis Now

Meningitis Now

Notes to the financial statements

Notes to the financial statements

For the year ended 31 March 2022

Unrestricted funds are donations and other incoming resources received or generated for the charitable purposes.

Designated funds are unrestricted funds earmarked by the trustees for particular purposes.

Expenditure is recognised once there is a legal or constructive obligation to make a payment to a third party, it is probable that settlement will be required and the amount of the obligation can be measured reliably. Expenditure is classified under the following activity headings:

Irrecoverable VAT is charged as a cost against the activity for which the expenditure was incurred.

j) Allocation of support costs Resources expended are allocated to the particular activity where the cost relates directly to that activity. However, the cost of overall direction and administration of each activity, comprising the salary and overhead costs of the central function, is apportioned on the following basis which are an estimate, based on staff time, of the amount attributable to each activity.

Fundraising 20.4%
Support 14.6%
Communication and awareness 15.2%
Advocacy & Engagement 11.2%
Knowledge & Info Sharing 2.3%
Research 1.0%
Support costs 32.8%
Governance costs 2.6%

Support and governance costs are re-allocated to each of the activities on the following basis which is an estimate, based on staff time, of the amount attributable to each activity.

Fundraising 37.6%
Support 32.0%
Communication and awareness 16.9%
Advocacy & Engagement 8.2%
Knowledge & Info Sharing 4.2%
Research 1.1%

Governance costs are the costs associated with the governance arrangements of the charity. These costs are associated with constitutional and statutory requirements and include any costs associated with the strategic management of the charity’s activities.

Financial Support Grants (i.e. Rebuilding Futures Fund) payable are accounted for in the period in which the award is communicated to the recipient, and becomes a contractual commitment. Research Grants are recognised as they become contractually due which is on production of acceptable progress reports or a final report at the end of the research project.

For the year ended 31 March 2022

o) Investments in subsidiaries Investments in subsidiaries are at cost.

q) Cash at bank and in hand

Cash at bank and cash in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account. Cash balances exclude any funds held on behalf of service users.

s) Financial instruments The charity only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value.

u) Pensions

The charity operates a defined contribution pension scheme. The assets of the scheme are held separately from those of the charity in an independently administered fund. The pension cost charge represents contributions payable under the scheme by the charity to the fund. The charity has no liability under the scheme other than for the payment of those contributions.

Income from donations and legacies

Income from donations and legacies
Community fundraising
Other donations
Government Job Retention Scheme Grant
Donated services
Legacies		 Unrestricted
£
328,026
277,501
317,123
5,966
482,715		 £
-
8,363
25,895
-
116,963
Restricted		 2022
Total
£
328,026
285,864
343,018
5,966
599,678		 Unrestricted
£
131,704
176,339
307,425
320,625
735,899		 £
-
88,790
21,671
-
41,802
Restricted		 2021
Total
£
131,704
265,129
329,096
320,625
777,701
1,411,331 151,221 1,562,552 1,671,992 152,263 1,824,255

Gifts in kind comprise mainly pro bono advertising services and awareness campaign support. Further details of these gifts are in the trustees' report.

l) Operating leases

Rental charges are charged on a straight line basis over the term of the lease.

m) Tangible fixed assets

Items of equipment are capitalised where the purchase price exceeds £300. Depreciation costs are allocated to activities on the basis of the use of the related assets in those activities. Assets are reviewed for impairment if circumstances indicate their carrying value may exceed their net realisable value and value in use.

Where fixed assets have been revalued, any excess between the revalued amount and the historic cost of the asset will be shown as a revaluation reserve in the balance sheet.

Depreciation is provided at rates calculated to write down the cost of each asset to its estimated residual value over its expected useful life. The depreciation rates in use are as follows:

 Office & computer equipment

 Furniture

 Motor Vehicles

25% per annum on cost 15% per annum on cost 33% per annum on cost 57

58

59

Meningitis Now

Notes to the financial statements

For the year ended 31 March 2022

the year ended 31 March 2022
Income from charitable activities
Big Lottery
Garfield Weston Foundation
St James's Place
Garfield Weston Foundation
Garfield Weston Foundation
Other Income for Support
Sub Total for Support
Other income for Advocacy & Engagement
Other income from research
Sub-total for research
Total income from charitable activities
Other income for Fundraising
Sub-total for Fundraising
National Lottery Coronavirus Support Fun
Sub-total for Advocacy & Engagement
Sub-total for Knowledge & Info Sharing
Other income for Knowledge & Info Sharing
Sub-total for Comms & Awareness
National Lottery Coronavirus Support
Other income for Comms & Awareness		 Unrestricted
£
-		 £
35,000
101,569
109,832
Restricted		 2022
Total
£
-
35,000
101,569
109,832		 Unrestricted
£
-
-
-
-		 £
96,033
-
-
14,462
Restricted		 2021
Total
£
96,033
-
-
14,462
-
-
-		 246,401
11,100		 246,401
-
11,100		 -
-
-		 110,495
50,000
51,730		 110,495
50,000
51,730
-
-		 11,100
10,000
1,375		 11,100
10,000
1,375		 -
-
-		 101,730
-
31,342		 101,730
-
31,342
-
-		 11,375
5,000
1,375		 11,375
5,000
1,375		 -
-
-		 31,342
-
22,047		 31,342
-
22,047
-
-		 6,375
500		 6,375
500		 -
-		 22,047
34,000		 22,047
34,000
-
-
-		 500
-
-		 500
-
-		 -
-
-		 34,000
50,000
-		 34,000
50,000
-
-
-		 -
275,751		 -
275,751		 -
-		 50,000
349,614		 50,000
349,614

Following the introduction of our new strategy in 2021, Making a Difference Every Day, we have revised the presentation of our charitable activities to more appropriately reflect the activities to deliver our new strategy. The prior year results have been restated against the revised activities and this does not have any impact on the total movement in funds.

Notes to the financial statements
For the year ended 31 March 2022		 4a
Support
Comms &
Awareness
Advocacy &
Engagement
Knowledge
& Info
Sharing
Research
Cost of
raising
funds
Governance
costs
Support
costs
2022 Total
2021
Total
£
£
£
£
£
£
£
£
£
£
Staff costs (Note 7)
280,853
146,327
92,512
44,884
12,072
317,754
6,618
81,174
982,193
1,234,255
Recruitment, training & other
6,987
4,209
1,447
756
163
11,397
1,006
6,000
31,966
24,745
Travel & subsistence
5,217
2,675
1,367
714
154
5,865
218
-
16,210
6,033
Trustee expenses
-
-
-
-
-
-
20
-
20
-
Awareness, Campaigns,
Advocacy, Engagement
25,404
250,718
13,240
39,173
750
55,758
1,064
-
386,107
363,947
Support Activity
35,978
167
181
294
83
-
-
-
36,704
12,983
Grants payable to individuals
37,155
-
-
-
-
-
-
-
37,155
43,403
Research grants
-
-
-
-
87,330
-
-
-
87,330
44,759
Computer related
2,044
1,715
-
-
-
1,715
-
109,276
114,750
97,879
Property
-
-
-
-
-
-
-
101,711
101,711
97,557
Postage, phones, stationery &
subscriptions
6,085
3,119
1,594
833
180
6,840
255
12,000
30,905
14,348
Auditors' remuneration
-
-
-
-
-
-
13,020
-
13,020
14,760
Legal, professional, bank,
insurance
-
-
-
-
-
-
-
43,339
43,339
22,132
Fundraising event costs
-
2,109
2,109
-
-
17,026
-
-
21,244
60,488
Other fundraising expenditure
-
4,859
4,859
-
-
38,870
-
-
48,587
39,496
Trading costs
-
-
-
-
-
849
-
-
849
2,840
Miscellaneous
1,122
575
294
154
33
1,261
47
-
3,486
6,219
400,846
416,472
117,603
86,808
100,765
457,335
22,248
353,500
1,955,576
2,085,844
Support costs
105,684
56,298
26,964
13,965
3,690
124,477
22,422
(353,500)
-
-
Governance costs
14,379
7,370
3,766
1,968
424
16,763
(44,670)
-
-
-
Total expenditure 2022
520,909
480,140
148,333
102,741
104,879
598,575
-
-
1,955,576
-
Total expenditure 2021
589,986
543,825
168,008
116,369
55,668
611,988
-
-
-
2,085,844
Note: £468,363 of the expenditure was restricted (2021: £514,242). £1,486,363 was unrestricted (2021: £1,571,602).

Analysis of expenditure (Current year)
Charitable activities
Following the introduction of our new strategy in 2021, Making a Difference Every Day, we have revised the presentation of our charitable activities to more appropriately reflect
the activities to deliver our new strategy. The prior year results have been restated against the revised activities and this does not have any impact on the total movement in
funds.

60

61

4b
Analysis of expenditure (Prior Year)		 Charitable activities Knowledge
Cost of		 Comms &
Advocacy &
& Info
raising
Governance
Support		 Support
Awareness
Engagement
Sharing
Research
funds
costs
costs
2021 Total		 £
£
£
£
£
£
£
£
£		 Staff costs (Note 7)
311,474
287,099
88,695
61,434
4,164
376,519
7,185
97,686
1,234,255		 Recruitment, training & other
5,037
4,643
1,434
993
196
6,738
226
5,478
24,745		 Travel & subsistence
2,017
1,870
580
400
75
1,044
47
-
6,033		 Trustee expenses
-
-
-
-
-		 Awareness, Campaigns, Advocacy, Engagement
145,617
134,222
41,466
28,721
-
13,921
-
-
363,947		 Support Activity
5,401
4,978
1,538
1,065
-
-
-
-
12,983		 Grants payable to individuals
18,056
16,643
5,142
3,561
-
-
-
-
43,403		 Research grants
-
-
-
-
44,759
-
-
-
44,759		 Computer related
894
824
254
176
-
314
-
95,417
97,879		 Property
1,308
1,206
372
258
-
283
-
94,130
97,557		 Postage, phones, stationery & subscriptions
3,148
2,902
897
621
1,598
5,071
111
-
14,348		 Auditors' remuneration
-
-
-
-
-
-
14,760
-
14,760		 Legal, professional, bank, insurance
-
-
-
-
-
-
-
22,132
22,132		 Fundraising event costs
6,291
5,799
1,791
1,241
-
45,366
-
-
60,488		 Other fundraising expenditure
2,594
2,391
739
512
-
33,261
-
-
39,496		 Trading costs
-
-
-
-
-
2,840
-
-
2,840		 Miscellaneous
535
493
152
105
-
603
-
4,331
6,219		 502,372
463,069
143,060
99,088
50,792
485,960
22,329
319,174
2,085,844		 Support costs
74,194
68,387
21,127
14,634
3,862
109,532
27,438
(319,174)
-		 Governance costs
13,420
12,369
3,821
2,647
1,014
16,496
(49,767)
-
-		 Total expenditure 2021
589,986
543,825
168,008
116,369
55,668
611,988
-
-
2,085,844		 Following the introduction of our new strategy in 2021, Making a Difference Every Day, we have revised the presentation of our charitable activities to more appropriately reflect the activities to deliver our new strategy. The prior year results have been restated against the revised activities and this does not have any impact on the total movement in funds.

Meningitis Now

Notes to the financial statements

Notes to the financial statements
For the year ended 31 March 2022
5a
University of Bristol - Prof. Finn
St George's - Prof. Heath
At the end of the year
Imperial College London - Prof. Wilkinson
Grant making (current year)
Cost/(recall of amounts)		 Grants to
institutions
£
47,903
-
39,427		 Support and
other costs
£
9,393
-
7,732		 2022
£
57,296
-
47,159		 2021
£
33,351
(2,469)
24,786
87,330 17,125 104,455 55,668

The governance costs allocated for 2021/22 totalled £424 (2020/21 £1,014). These are described in detail in Note 4.

Commitments

Commitments in respect of grants for approved projects which have not been accrued in the accounts:

Commitments in respect of grants for approved projects which have not been accrued in the accounts: in the accounts:
2022
2021
£
£
Within one year
172,500
148,007
Between two and four years
235,939
177,866
408,439
325,873
5b
Grants to
institutions
Support and
other costs
2021
£
£
£
27,093
6,258
33,351
(2,469)
-
(2,469)
20,135
4,651
24,786
-
-
-
44,759
10,909
55,668
6
2022
2021
£
£
9,443
18,350
Property
60,000
66,000
728
1,689
10,850
12,300
-
-
Audit
Other services
Operating lease rentals:
Other
Auditors' remuneration (excluding VAT):
Depreciation
Net incoming resources for the year
This is stated after charging / crediting:
These commitments are not recognised as expenditure in the year as payments are subject to reviews of project
progress by Meningitis Now.
Cost
University of Bristol - Prof. Finn
St George's - Prof. Heath
Imperial College London - Prof. Wilkinson
Grant making (prior year)
University of Liverpool - Prof. Kadioglua
At the end of the year		 2022
£
172,500
235,939		 2021
£
148,007
177,866
408,439 325,873

62

63

Meningitis Now

Meningitis Now

Notes to the financial statements

Notes to the financial statements

For the year ended 31 March 2022

Staff costs were as follows:
Social security costs
Employer’s contribution to defined contribution pension schemes
Salaries and wages
Redundancy and termination costs		 2022
£
883,136
-
69,674
29,383		 2021
£
1,084,563
22,992
89,195
37,505
982,193 1,234,255

No employee earned between £60,000 and £70,000 during the year (2020/21: none). No employee earned between £70,000 and £80,000 in the year (2020/21: one). One employee earned between £80,000 and £90,000 in the year (2020/21: None).

The total employee benefits including pension contributions and national insurance of the key management personnel were £258,936 (2020/21: £297,144).

The charity trustees were not paid or received any other benefits from employment with the charity in the year (2021: £nil). No charity trustee received payment for professional or other services supplied to the charity (2021: £nil).

Trustees' expenses represents the payment or reimbursement of travel and subsistence costs totalling £Nil (2021: £nil) incurred by 12 (2021: 11) members relating to attendance at meetings of the trustees.

8 Staff numbers

The average number of employees (head count based on number of staff employed) during the year was as follows:

Advocacy & Engagement
Research
Support
Comms & Awareness
Raising funds
Governance
Knowledge & Info Sharing		 2022
No.
12.9
11.4
5.9
3.0
1.6
0.4
0.5		 2021
No.
17.0
12.7
11.7
3.6
2.5
0.5
0.6
35.7 48.6

For the year ended 31 March 2022

9 Taxation

The charity is exempt from corporation tax as all its income is charitable and is applied for charitable purposes. The charity's trading subsidiary Meningitis Trust Trading Limited gift aids available profits to the parent charity. Its charge to corporation tax in the year was:

2022 2021
£ £
UK corporation tax at 19% (2021: 19%) - -

10 Tangible fixed assets

The group and charity

The group and charity
Additions in year
Depreciation
Net book value
Cost
Disposals in year
At the end of the year
At the start of the year
Eliminated on disposal
At the end of the year
At the end of the year
At the start of the year
Charge for the year
At the start of the year		 Freehold
property
£
4,000
-
-		 Fixtures and
fittings
£
91,268
-
(10,310)		 Computer
equipment
£
65,170
29,527
(25,433)		 Motor vehicles
£
25,160
-
-		 Total
£
185,598
29,527
(35,743)
4,000 80,958 69,264 25,160 179,382
-
-
-		 91,151
117
(10,310)		 54,756
8,624
(25,971)		 24,458
702
-		 170,365
9,443
(36,281)
- 80,958 37,409 25,160 143,527
4,000 - 31,855 - 35,855
4,000 117 10,414 702 15,233

All of the above assets are used for charitable purposes.

11a Listed investments

The average number of Full Time Equivalent employees (based on number of staff employed) during the year was as follows:


follows:
Raising funds
Support
Comms & Awareness
Advocacy & Engagement
Research
Governance
Knowledge & Info Sharing		 2022
No.
10.3
9.2
4.7
2.4
1.3
0.3
0.4		 2021
No.
14.8
11.1
10.2
3.1
2.2
0.4
0.5
28.6 42.3

There are no donations from related parties which are outside the normal course of business and no restricted donations from related parties.

Listed investments
Disposal proceeds
Net gain/loss on change in fair value
Cash held by investment broker pending reinvestment
Fair value at the end of the year
Fair value at the start of the year
Additions at cost		 2022
£
706,389
29,738
(29,566)
18,253		 2021
£
595,352
20,000
-
91,037
724,814
3,600		 706,389
3,804
728,414 710,193

The charity only also holds £2 (2021: £2) of shares in the Meningitis Trust Trading.

Following the introduction of our new strategy in 2021, Making a Difference Every Day, we have revised the presentation of our charitable activities to more appropriately reflect the activities to deliver our new strategy. The prior year results have been restated against the revised activities and this does not have any impact on the total movement of funds.

64

65

Meningitis Now

Meningitis Now

Notes to the financial statements

For the year ended 31 March 2022

Notes to the financial statements

For the year ended 31 March 2022

11b Subsidiary undertaking

The charitable company owns the whole of the issued ordinary share capital of Meningitis Trust Trading Limited and of Inmed Limited (dormant), both of which are companies registered in England. The subsidiaries are used for nonprimary purpose trading activities. All activities have been consolidated on a line by line basis in the statement of financial activities. Available profits are gift aided to the charitable company. A summary of the results of the Meningitis Trust Trading Limited is shown below:


Meningitis Trust Trading Limited is shown below:
Administrative expenses
The aggregate of the assets, liabilities and funds was:
Turnover
Gross profit
Deed of covenant to parent undertaking
Operating profit / (loss)
Cost of sales
Assets
Profit / (loss) for the financial year
Liabilities
Funds		 2022
£
25,411
170		 2021
£
20,755
(1,653)
25,581
(1,019)		 19,102
(1,187)
24,562
(24,562)		 17,915
(17,915)
- -
24,564
(24,562)		 13,152
(13,150)
2 2

12 Parent charity

The parent charity's gross income and the results for the year are disclosed as follows:

Debtors
Gross income
Result for the year
Trade debtors
Amounts due from subsidiaries
Prepayments
Accrued income and other debtors
Taxation and social security		 2022
2021
£
£
5,457
62
-
-
-
-
29,496
26,902
108,000
-
142953
26964
The group		 2022
2021
£
£
5,457
62
-
-
-
-
29,496
26,902
108,000
-
142953
26964
The group		 2022
£
2,026,479
90,005		 2021
£
2,219,532
227,563
142953 26964 153034 37612

13 Debtors

14 Creditors: amounts falling due within one year

Creditors: amounts falling due within one year
Deferred income
Obligations under hire purchase contracts
Trade creditors
Taxation and social security
Other creditors
Accruals		 2022
2021
£
£
89,591
71,320
-
18,656
706
4,877
163,696
76,826
95,320
153,527
-
-
349,313
325,206
The group		 2022
2021
£
£
89,591
68,879
-
18,656
706
4,877
163,696
76,826
95,320
153,527
-
-
349,313
322,765
The charity
349,313 325,206 349,313 322,765

15 Deferred income

Deferred income comprises income related to future fundraising events.

The group The charity The charity
2022 2021 2022 2021
£ £ £ £
Balance at the beginning of the year 153,527 132,490 153,527 132,490
Amount released to income in the year (117,625) (160,757) (117,625) (160,757)
Amount deferred in the year 59,417 181,794 59,417 181,794
Balance at the end of the year 95,319 153,527 95,319 153,527

16a Analysis of group net assets between funds (current year)

Analysis of group net assets between funds (current year)
Net assets at the end of the year
Analysis of group net assets between funds (prior year)
Investments
Tangible fixed assets
Investments
Net current assets
Tangible fixed assets
Net current assets
Net assets at the end of the year		 £
35,855
728,414
830,667
General
unrestricted		 Restricted
funds
£
-
-
546,871		 Total funds
£
35,855
728,414
1,377,538
1,594,936 546,871 2,141,807
£
19,013
710,192
724,640
General
unrestricted		 Restricted
funds
£
-
-
573,396		 Total funds
£
19,013
710,192
1,298,036
1,453,845 573,396 2,027,241

16b Analysis of group net assets between funds (prior year)

66

67

Meningitis Now

Meningitis Now

Notes to the financial statements

For the year ended 31 March 2022

17a Movements in funds (current year)

Movements in funds (current year)
Total restricted funds
General funds
Non-charitable trading funds
Unrestricted funds:
Fundraising
Restricted funds
Support
Comms & Awareness
Total unrestricted funds
Research
Advocacy & Engagement
Knowledge & Info Sharing
Total funds		 At the start
of the year
£
64,657
3,608
265
265
504,600
-		 Incoming
and gains
£
273,484
52,440
18,488
21,696
69,410
155		 Expenditure
and losses
£
(286,409)
(61,776)
(18,753)
(21,961)
(79,309)
(155)		 Transfers
£
(1,660)
11,859
-
(4,034)
-		 At the end of
the year
£
50,072
6,131
-
-
490,667
-
573,396 435,673 (468,363) 6,165 546,871
1,435,930
17,914		 1,609,059
25,411		 (1,486,364)
(849)		 (6,165)
-		 1,552,460
42,476
1,453,844 1,634,470 (1,487,213) (6,165) 1,594,936
2,027,240 2,070,143 (1,955,576) - 2,141,807

Support - provision of support services including grants for beneficiaries

Comms and Awareness - General meningitis awareness raising

Advocacy & Engagement - increasing awareness of the impact of meningitis and reaching more people needing Knowledge & Info Sharing - sharing knowledge to improve aftercare available for people affected by meningitis Research - general

Following the introduction of our new strategy in 2021, Making a Difference Every Day, we have revised the presentation of our charitable activities to more appropriately reflect the activities to deliver our new strategy. The prior year results have been restated against the revised activities and this does not have any impact on the total movement in funds.

Notes to the financial statements

For the year ended 31 March 2022

Purposes of restricted funds

Support - provision of support services including grants for beneficiaries Comms and Awareness - General meningitis awareness raising

Advocacy & Engagement - increasing awareness of the impact of meningitis and reaching more people needing support

Knowledge & Info Sharing - sharing knowledge to improve aftercare available for people affected by meningitis Research - general

Transfers -

£23,336 was moved from research to communications for use on a student campaign as agreed by the funder. £13,500 transfer from prior year unrestricted to research as omitted.

18 Operating lease commitments

The group and the charity's total future minimum lease payments under non-cancellable operating leases is as follows for each of the following periods:


for each of the following periods:
Less than one year
One to five years		 2022
2021
£
£
66,000
79,800
132,000
-
198,000
79,800
Property
198,000 79,800

19 Legal status of the charity

The charity is a company limited by guarantee and has no share capital. The liability of each member in the event of winding up is limited to £1.

Transfers -

£11,859 was moved from research to communications for use on a student campaign as agreed by the funder. £7,825 transfer from prior year unrestricted to research.

£1,660 was transferred from restricted to unrestricted as a correction to the prior year.

17b Movements in funds (prior year)

Movements in funds (prior year)
Total restricted funds
General funds
Non-charitable trading funds
Unrestricted funds:
Restricted funds:
Support
Comms & Awareness
Advocacy & Engagement
Total unrestricted funds
Research
Fundraising
Total funds
Knowledge & Info Sharing		 At the start
of the year
£
57,076
-
-
-
503,197
-		 Incoming
and gains
£
176,382
128,427
48,808
34,202
66,837
50,650		 Expenditure
and losses
£
(168,801)
(156,643)
(48,543)
(33,937)
(55,668)
(50,650)		 Transfers
£
-
31,824
-
-
(9,765)
-		 At the end of
the year
£
64,657
3,608
265
265
504,601
-
560,273 505,306 (514,242) 22,059 573,397
1,221,490
-		 1,805,261
20,755		 (1,568,762)
(2,840)		 (22,059)
-		 1,435,930
17,915
1,221,490 1,826,016 (1,571,602) (22,059) 1,453,845
1,781,763
6		 2,331,322
7		 (2,085,844) - 2,027,242

68

69

saving lives, rebuilding futures

Meningitis Now is the founder of the meningitis movement and the only charity solely dedicated to fighting meningitis in the UK.

With over 35 years’ experience we are working towards a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need.

Help us save lives and rebuild futures today by:

Visit www.meningitisnow.org and help us make a difference, every day.

Contact us on

Phone: 01453 768000 Email: info@meningitisnow.org Helpline: 0808 80 10 388 Website: www.MeningitisNow.org Facebook: fb.com/meningitisnow Twitter: @meningitisnow Instagram: @meningitis_now

Meningitis Now Fern House Bath Road Stroud Gloucestershire GL5 3TJ

Registered Charity Number 803016 (England & Wales) SC037790 (Scotland). Company Registration Number 2469130. © Meningitis Now, October 2022

Our front cover shows Aimee with her specialist trike, granted through our Rebuilding Futures Fund.