Meningitis Now Vision 2016

Vision 2016 Our strategic priorities until the end of 2016 New name, same goals

Vision 2016 Meningitis Now is leading the fight against meningitis in the UK and this is our Vision 2016.

We are a ‘new’ charity with almost 30 years’ experience, formed in 2013 by bringing together Meningitis UK and Meningitis Trust, the founders of the meningitis movement in the UK. Our new name reflects: • Our clear focus on meningitis.

• The need for action now, whether that is developing and introducing new vaccines, taking action if meningitis is suspected or providing timely support.

• The need to use our voice to address whatever the issues are now – issues that will change over time.

• The fact that we will be here now, whether we are talking today or in the future, for as long as meningitis, and its impact, remains an issue.

2016 is a milestone for our new organisation.

It marks 30 years since our founding members took those first steps and became a voice for people affected by meningitis in the UK.

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We are ambitious about what we can achieve.

• We will keep funding preventative research and campaign tirelessly for licensed vaccines to be introduced in the UK. • We will keep meningitis on the health agenda. While it is still devastating lives, while people are still living with the impact, while communities still fear a disease they can’t predict, we will make sure every voice is heard.

• We will reach out to everyone affected, ensuring no one suffers alone. We are here to help rebuild futures.

This document outlines our strategic priorities. More importantly, it shows the progress we aim to make towards our ultimate goal - a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives.

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At the heart of Meningitis Now Our Vision: A future where no one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives.

Our Mission: To provide a powerful, united voice for individuals, families, communities, experts and professionals who know just how devastating meningitis can be.

To save lives by funding research into vaccines and prevention.

To reduce the impact of the disease by raising awareness, empowering people with the knowledge and information they need to get urgent medical attention if they suspect meningitis.

To rebuild futures by providing dedicated support to people living with the impact of meningitis.

To raise the funds we need to deliver our vision, inspired by the individuals and families at the heart of our organisation.

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Focused

How we work

we deliver results and make the most of our resources

We believe in what we do and that’s how we achieve so much. The way we work defines who we are.

Supportive we are here for everyone

Innovative

Passionate

we are forward-thinking, always seeking to improve

we go the extra mile

United we work together towards one shared vision

Influential we drive positive change

Inspiring our energy and determination inspire those around us

In Partnership we can achieve more together

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Priority 1: Supporting prevention We will support research that finds new, and enhances existing, vaccines to save lives and prevent disability. We campaign for the introduction of licensed vaccines as soon as they become available in the UK, because time lost is lives lost.

By 2016

To achieve this, we will:

• We will have campaigned for, and supported, the introduction of a vaccine against meningitis B, significantly reducing cases in the UK, saving lives and preventing disability.

• Fund preventative research approved by our expert Scientific and Medical Advisory Panel.

• We will be closer to having vaccines against all types of bacterial meningitis, thanks to continued funding of our research programme.

• We will be the first choice for people looking for information on meningitis and vaccines.

• We will be recognised for our campaign and awareness work with government, medical professionals and patient groups.

• Ensure we retain our Certificate in Best Practice from the Association of Medical Research Charities, clearly showing the high standard of our approach.

• Drive campaigns calling for the introduction of vaccines as they become available, working with our supporters, volunteers, partners and the public at large.

• Work to ensure politicians in Westminster and the devolved governments are meningitis aware and support our campaigns.

• Use our voice in the fight against meningitis, ensuring that vaccines are available to all, regardless of wealth, health or location in the UK.

“You were our starting block to move on.”

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CASE STUDY James and Sue lost their son, Sam, to meningitis in 2008, aged two.

The family didn’t want others to suffer from the heartbreak of losing a child so, in 2008, they started fundraising for vaccine research. To date, nearly £80,000 has been raised in Sam’s memory.

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Priority 2: Make sure no one faces meningitis alone Over half a million people living in the UK today have had meningitis and many thousands of families have been left facing a future without a loved one.

Without vaccines to protect against all types, meningitis continues to strike, devastating families across the UK. We know our support makes a real difference and we are committed to reaching out to everyone affected.

By 2016

To achieve this, we will:

• More health and social care professionals will be aware of our services.

• Regularly seek feedback on how people hear about us, to ensure that we can reach people when they need us most.

• GPs and hospitals will tell patients about the charity soon after their experience.

• We will have at least ‘doubled’ the number of people benefiting from our support.

• People affected by meningitis will be able to get in touch and receive support in a way that suits them – online, on the phone, in person.

• We will never hear the words “I wish I had known about you sooner”.

• Sufferers will feel empowered to make better informed choices about their health and social care.

• We will be recognised as the provider of world-class support for people affected by meningitis.

• Run annual campaigns targeting health and social care professionals, to ensure they know where to refer sufferers.

• Make the most of every opportunity to raise the profile of the support we provide.

• Work in partnership with other charities, specialist service providers, professional bodies and community organisations to reach more people who have been affected.

• Provide accurate information and support to those affected, identifying and targeting those we don’t currently reach.

• Improve and extend our use of digital communications to engage and support people affected by meningitis, their carers, families and friends.

• Use our community presence to ensure we are there when and where people need us.

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• Be vocal and effect positive change for all meningitis related issues for our beneficiaries.

CASE STUDY Louie, aged one, battled meningitis when he was five months old.

Although he survived the disease, he had to have his legs and some of his fingers amputated. The charity has supported the family by funding travel expenses for the many hospital visits they need to make.

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CASE STUDY Levana, now 13, was just four months old when she had to have her legs amputated.

The charity has provided specialist play equipment and swimming lessons. Over the years, Levana hasn’t let losing her legs stop her. She loves swimming, training six times a week and competing in various competitions, including the Junior Nationals.

She has qualified for internationals and is on a talent programme.

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“Meningitis will not stop me from achieving my dreams.�

Priority 3: Listen and respond to the needs of people affected by meningitis Meningitis Now is helping rebuild futures and we are here for people now, when they need us most. We are a listening organisation, ready to respond positively and equally to anyone affected by meningitis.

By 2016

To achieve this, we will:

• The experiences of people living with the impact of meningitis will shape everything that we do.

• Listen to, and involve, those affected by meningitis when developing our support.

• The support we offer will be tailored to, and meet the needs of, the people we serve – every age, gender, race and religion.

• We will be here for everyone affected by meningitis, providing support and information in a way that suits them, at every stage of their journey.

• We will be the main voice for people affected by meningitis.

• Have an active and influential ‘Young Ambassador’ programme, ensuring we meet the needs of young people.

• Share our knowledge and research of after-effects and aftercare to help shape national guidelines into the disease.

• Continuously improve the quality of the information and support we offer and demonstrate this through monitoring and accreditation.

• Make sure our support is tailored to each individual or family, by developing individual support plans for everyone through our professional services.

“You were supportive from the very first time I spoke to you.”

• Work with partners to create a strong voice for change when it’s needed.

• When people need more specialist support, we will work with partner organisations to make sure they receive it.

• Regularly review our services to make sure we are meeting people’s needs.

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Priority 4: Reduce the impact of meningitis and fight for the rights of those affected Where vaccines don’t exist, meningitis awareness is key. Rapid identification of the disease through better education has always been a priority for us.

When cases occur, we know that timely and appropriate support can make a big difference to the outcome and quality of life.

Meningitis Now always fights for the rights of those affected to make sure they get the very best care.

By 2016

To achieve this, we will:

• We will have a bank of information available to health professionals and policymakers, to help improve diagnosis of meningitis in all its forms and improve the support provided to people affected.

• Undertake, and utilise, research to improve understanding of the lifelong impact of meningitis.

• We will be the number one provider in the UK of information on meningitis, from diagnosis to aftercare.

• Provide information and resources to support health and social care professionals in prevention, early diagnosis and aftercare.

• Provide clear, engaging and accessible disease information to the public.

• Our lobbying will have achieved success, by getting sufferers recognised within the education system and ensuring that people receive well-funded support, wherever they live.

• Drive campaigns targeting policymakers, shaped by the needs of our beneficiaries, ensuring that children get the right educational support following meningitis.

• Our campaigns will be brave, bold and represent the voices of people affected.

• Lobby government to ensure a consistent and fair approach to the funding and support of aftercare.

• Inspire, and support, our volunteers to raise awareness of meningitis and our work in their communities.

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CASE STUDY Cieran was nine months old when he contracted meningitis.

The disease rampaged through his tiny body, leaving him with hidden, life-changing after-effects; epilepsy, cerebral palsy, cerebral atrophy, autism, ADHD and leaving him profoundly deaf. Now aged nine, he is excelling at a mainstream school with deaf resource provision, enabling him to fulfil his potential in all areas of his life. Cieran loves rugby.

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Bahman, 54, contracted meningitis in 2010.

He spent five months in hospital.

Doctors had to amputate both his legs below the knee, his right hand above his wrist, and all of his fingers and thumb on his left hand.

In the last twelve months, he has trekked the Great Wall of China, raising nearly ÂŁ21,000 in the process, completed the Silverstone Half Marathon and, most recently, conquered Snowdon, the highest mountain in Wales.

For his next challenge, he is looking to climb Kilimanjaro.

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Priority 5: Raise the funds needed to deliver our ambitious plans We do not receive any Central Government funding but we are committed to saving lives and rebuilding futures through research, awareness and support. Every year, we need to raise a minimum of £4 million to carry out our work. We are always looking for ways to make every penny raised go that little bit further.

By 2016

To achieve this, we will:

• We will increase the involvement and support of volunteers in raising money for the charity.

• Continually demonstrate the difference we make and clearly show our supporters how their money is being used.

• We will have increased the number of active individuals and organisations who regularly donate.

• Inspire everyone who comes into contact with the charity to support us.

• We will have significantly increased our income from trusts, major donors and legacies.

• Provide an excellent stewardship programme to maximise long-term donor retention.

• We will continue to raise funds in a cost-effective way, increasing the proportion of every £1 that goes directly to our work.

• Identify, and develop, more effective ways for people to get involved and support us.

• Strive to secure multi-year funding, where possible, to ensure sustainability.

• Increase the amount of work we do in partnership with others, to save costs and maximise opportunities.

• Deliver our fundraising targets, adhering to best practice and associated codes of conduct.

“You made me realise that I wasn’t alone.”

• Reduce our cost of fundraising every year.

• Encourage staff to act as ambassadors, engaging family, friends and community with our cause.

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Priority 6: Be a united, focused and effective organisation Inspired by the individuals and families we meet every day, and drawing on the passion and commitment of our people, we are determined to strive to be the best.

By 2016

To achieve this, we will:

• We will have built on the achievements of Meningitis UK and Meningitis Trust, with supporters recognising that Meningitis Now is achieving even more as a united force than as separate organisations.

• Work to retain our employment accreditations ‘Investing in People’ and ‘Positive about Disabled People’.

• Our stakeholders will share a common vision, understanding how their work contributes to achieving our goals.

• We will have doubled the number of volunteers supporting us and will be recognised for our volunteer programme.

• We will be able to show the difference we make and how we are making the most of our resources.

• Communicate the impact of our work and the difference it makes to our stakeholders.

• Work with partners to improve the impact of all aspects of our work.

• Continually strive to improve our efficiency and effectiveness, enabling more to be achieved with every £1 raised.

• Continue to develop employee and volunteer empowerment programmes to encourage greater personal responsibility that inspires passion for the cause.

• Our partnership programme will be regarded as something other charities aspire to.

• We will have been recognised as a great employer in areas of staff development and job satisfaction.

“I wouldn’t be alive today if it wasn’t for @MeningitisNow and all the staff at the hospital!”

Supporter tweet

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CASE STUDY Ted contracted meningitis at just three months old in March 2002.

He pulled through, but lost his fingertips and muscle in his right leg.

Since then, he’s had several operations and treatment for growth plate damage in his legs.

We have provided the family with counselling, art therapy and financial grants for respite care and travel expenses to hospital appointments.

His sister, Megan, is also a Young Ambassador for the charity.

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The future – a message from the CEO Vision 2016 is all about what we must achieve by the time we are officially 30.

Meningitis Trust and Meningitis UK, the founders of the meningitis movement in the UK, have achieved a huge amount since the 1980s.

But, there is so much more to do.

As Meningitis Now, we are as determined as ever to achieve our ultimate vision - a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives.

Meningitis is a thief – it steals the dreams parents have for their child; the ability for a grandfather to read to his grandchild; the ability to earn money to look after your family; the confidence to go outside; life itself.

• People remain vigilant and always have life-saving awareness information to hand.

• The funds are raised to enable us to deliver everything that must be achieved by the end of 2016.

• Everyone involved with Meningitis Now is inspired to achieve the best, and the most that they can, for the people we exist for.

Meningitis Now has to change this.

We have to make sure:

We will be brave and bold as we drive forward, ensuring that our voice is heard. We will keep driving towards our ultimate vision and make sure that, as we move forward, we continue to save lives and rebuild futures.

• The new MenB vaccine is introduced and investment in preventative research is continued.

This is our challenge to you: be inspired by the people we exist for and be part of Meningitis Now!

• Families and individuals affected by meningitis know about Meningitis Now and can turn to us for support from the point of diagnosis.

You will make a difference.

• People’s needs are met, whatever the outcome following disease diagnosis.

18 | Meningitis Now Vision 2016

Sue Davie Chief Executive

“We are as determined as ever to achieve our ultimate vision - a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives.�

Sue Davie, Chief Executive 19

saving lives, rebuilding futures

Meningitis Now is a charity born from the merger of Meningitis Trust and Meningitis UK, the founders of the meningitis movement in the UK in the 1980s.

Our vision is clear – a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives.

We are dependent on voluntary donations to continue our work and we need your help now, more than ever, to make a difference to people in the UK – people who are at risk from meningitis and those whose lives have already been changed forever because of it.

Please make a difference today and contact us to join our fight

www.MeningitisNow.org 24 hour UK helpline: 0808 80 10 388

New name, same goals Tel: 01453 768000 Fax: 01453 768001 Email: info@meningitisnow.org England Meningitis Now Head Office Fern House Bath Road Stroud GL5 3TJ Northern Ireland

Scotland

Wales

Meningitis Now Wellington Business Centre 3 Wellington Park Malone Road Belfast BT9 6DJ

Meningitis Now Centrum Offices 38 Queen Street Glasgow G1 3DX

Meningitis Now Sophia House 28 Cathedral Road Cardiff CF11 9LJ

Registered charity number (England & Wales) 803016 (Scotland) SC037790 Company Registration Number 2469130 © Meningitis Now 2013