Meningitis Now Vision 2016

Vision 2016Our 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:

• Ourclearfocusonmeningitis.

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

• Theneedtouseourvoicetoaddresswhatever the issues are now – issues that will change over time.

• Thefactthatwewillbeherenow, 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.

• Wewillkeepfundingpreventative research and campaign tirelessly for licensed vaccines to be introduced in the UK.

• Wewillkeepmeningitisonthehealth 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.

• Wewillreachouttoeveryoneaffected, 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.

Meningitis Now Vision 2016 | 3

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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Passionatewe go the extra mile

Unitedwe work together towards

one shared vision

Influentialwe drive positive

change

Supportivewe are here for everyone

Focused we deliver results

and make the most of our resources

Inspiringour energy and determination inspire those

around us

InPartnership

we can achieve more together

Innovativewe are

forward-thinking, always seeking

to improve

How we work

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


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.

Priority 1: Supporting prevention

By 2016

• Wewillhavecampaignedfor,andsupported,the introduction of a vaccine against meningitis B, significantly reducing cases in the UK, saving lives and preventing disability.

• Wewillbeclosertohavingvaccinesagainstall types of bacterial meningitis, thanks to continued funding of our research programme.

• Wewillbethefirstchoiceforpeoplelookingfor information on meningitis and vaccines.

• Wewillberecognisedforourcampaignandawareness work with government, medical professionals and patient groups.

To achieve this, we will:

• Fundpreventativeresearchapprovedbyourexpert Scientific and Medical Advisory Panel.

• EnsureweretainourCertificateinBestPractice from the Association of Medical ResearchCharities,clearlyshowingthehighstandard of our approach.

• Drivecampaignscallingfortheintroductionof vaccines as they become available, working with our supporters, volunteers, partners and the public at large.

• WorktoensurepoliticiansinWestminsterandthe devolved governments are meningitis aware and support our campaigns.

• Useourvoiceinthefightagainstmeningitis,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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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.

CASE STUDY


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.

Priority 2: Make sure no one faces meningitis alone

By 2016

• Morehealthandsocialcareprofessionals will be aware of our services.

• GPsandhospitalswilltellpatientsabout the charity soon after their experience.

• Wewillhaveatleast‘doubled’thenumber of people benefiting from our support.

• Peopleaffectedbymeningitiswillbeable to get in touch and receive support in a way that suits them – online, on the phone, in person.

• Wewillneverhearthewords“I wish I had known about you sooner”.

• Suffererswillfeelempoweredtomakebetterinformed choices about their health and social care.

• Wewillberecognisedastheproviderofworld-class support for people affected by meningitis.


• Regularlyseekfeedbackonhowpeoplehearabout us, to ensure that we can reach people when they need us most.

• Runannualcampaignstargetinghealthandsocial care professionals, to ensure they know where to refer sufferers.

• Makethemostofeveryopportunitytoraisethe profile of the support we provide.

• Workinpartnershipwithothercharities,specialist service providers, professional bodies and community organisations to reach more people who have been affected.

• Provideaccurateinformationandsupportto those affected, identifying and targeting those we don’t currently reach.

• Improveandextendouruseofdigitalcommunications to engage and support people affected by meningitis, their carers, families and friends.

• Useourcommunitypresencetoensurewearethere when and where people need us.

• Bevocalandeffectpositivechangeforallmeningitis related issues for our beneficiaries.8

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.

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.

CASE STUDY

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

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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.

Priority 3: Listen and respond to the needs of people affected by meningitis

By 2016

• Theexperiencesofpeoplelivingwiththeimpact of meningitis will shape everything that we do.

• 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.


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

• 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.

• Continuouslyimprovethequalityoftheinformation 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.

• 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.

“You were supportive from the very first time

I spoke to you.”


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.

Priority 4: Reduce the impact of meningitis and fight for the rights of those affected

By 2016

• Wewillhaveabankofinformationavailableto health professionals and policymakers, to help improve diagnosis of meningitis in all its forms and improve the support provided to people affected.

• Wewillbethenumberoneprovider in the UK of information on meningitis, from diagnosis to aftercare.

• Ourlobbyingwillhaveachievedsuccess, by getting sufferers recognised within the education system and ensuring that people receive well-funded support, wherever they live.

• Ourcampaignswillbebrave,boldandrepresent the voices of people affected.


• Undertake,andutilise,researchto improve understanding of the lifelong impact of meningitis.

• Provideinformationandresourcestosupport health and social care professionals in prevention, early diagnosis and aftercare.

• Provideclear,engagingandaccessibledisease information to the public.

• Drivecampaignstargetingpolicymakers,shaped by the needs of our beneficiaries, ensuring that children get the right educational support following meningitis.

• Lobbygovernmenttoensureaconsistentand fair approach to the funding and support of aftercare.

• Inspire,andsupport,ourvolunteerstoraiseawareness of meningitis and our work in their communities.

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Cieranwasnine 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,ADHDandleavinghim profoundly deaf. Now aged nine, he is excelling at a mainstream school with deaf resource provision, enabling him to fulfil his potential inallareasofhislife.Cieran loves rugby.

CASE STUDY


Bahman, 54, contracted meningitis in 2010.

He spent five months in hospital. Doctorshadtoamputatebothhis

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 trekkedtheGreatWallofChina,

raising nearly £21,000 in the process, completed the Silverstone

Half Marathon and, most recently, conquered Snowdon, the highest

mountain in Wales.

Forhisnextchallenge,heislookingto climb Kilimanjaro.

CASE STUDY

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WedonotreceiveanyCentralGovernmentfundingbutwearecommitted to saving lives and rebuilding futures through research, awarenessandsupport.Everyyear,weneedtoraiseaminimumof £4 million to carry out our work. We are always looking for ways to make every penny raised go that little bit further.

Priority 5: Raise the funds needed to deliver our ambitious plans

By 2016

• Wewillincreasetheinvolvementandsupportof volunteers in raising money for the charity.

• Wewillhaveincreasedthenumberof active individuals and organisations who regularly donate.

• Wewillhavesignificantlyincreasedourincome from trusts, major donors and legacies.

• Wewillcontinuetoraisefundsina cost-effective way, increasing the proportion of every £1 that goes directly to our work.


• Continuallydemonstratethedifferencewemake and clearly show our supporters how their money is being used.

• Inspireeveryonewhocomesintocontact with the charity to support us.

• Provideanexcellentstewardshipprogrammeto maximise long-term donor retention.

• Identify,anddevelop,moreeffectiveways for people to get involved and support us.

• Strivetosecuremulti-yearfunding,wherepossible, to ensure sustainability.

• Increasetheamountofworkwedoinpartnership with others, to save costs and maximise opportunities.

• Deliverourfundraisingtargets,adheringtobest practice and associated codes of conduct.

• Reduceourcostoffundraisingeveryyear.

• Encouragestafftoactasambassadors,engaging family, friends and community with our cause.

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


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.

Priority 6: Be a united, focused and effective organisation

By 2016

• WewillhavebuiltontheachievementsofMeningitis UK and Meningitis Trust, with supporters recognising that Meningitis Now is achieving even more as a united force than as separate organisations.

• Ourstakeholderswillshareacommonvision, understanding how their work contributes to achieving our goals.

• Wewillhavedoubledthenumberofvolunteers supporting us and will be recognised for our volunteer programme.

• Wewillbeabletoshowthedifferencewemake and how we are making the most of our resources.

• Ourpartnershipprogrammewillberegardedas something other charities aspire to.

• Wewillhavebeenrecognisedasagreatemployer in areas of staff development and job satisfaction.


• Worktoretainouremploymentaccreditations ‘Investing in People’ and ‘PositiveaboutDisabledPeople’.

• Communicatetheimpactofourworkandthe difference it makes to our stakeholders.

• Workwithpartnerstoimprovetheimpact of all aspects of our work.

• Continuallystrivetoimproveourefficiencyand effectiveness, enabling more to be achieved with every £1 raised.

• Continuetodevelopemployeeandvolunteer empowerment programmes to encourage greater personal responsibility that inspires passion for the cause.

“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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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.

CASE STUDY


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.

Meningitis Now has to change this. We have to make sure:

• ThenewMenBvaccineisintroduced and investment in preventative research is continued.

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

•People’sneedsaremet,whatever the outcome following disease diagnosis.

• Peopleremainvigilant and always have life-saving awareness information to hand.

• Thefundsareraisedtoenableus to deliver everything that must be achieved by the end of 2016.

• EveryoneinvolvedwithMeningitis Now is inspired to achieve the best, and the most that they can, for the people we exist for.

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.

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

You will make a difference.

SueDavie ChiefExecutive

The future – a message from the CEO

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.”

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Registeredcharitynumber(England&Wales)803016(Scotland)SC037790 CompanyRegistrationNumber2469130©MeningitisNow2013

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

Northern Ireland

Meningitis Now Wellington Business Centre 3 Wellington Park Malone Road Belfast BT96DJ

Scotland

Meningitis Now CentrumOffices 38 Queen Street Glasgow G13DX

Wales

Meningitis Now Sophia House 28CathedralRoad Cardiff CF119LJ

saving lives, rebuilding futures

Tel: 01453 768000 Fax: 01453768001 Email:[email protected]

England

Meningitis Now Head Office FernHouse Bath Road Stroud GL53TJ

New name, same goals

Meningitis Now Vision 2016

Documents

Transcript of Meningitis Now Vision 2016