Supporting people affected by lymphatic cancer in 2016A year in review

Support Outstanding support servicesInform Award-winning information resourcesEducate Specialist education, training and learningInfluence Influential campaigning

Every 28 minutes someone receives a lymphoma diagnosis – it is the fifth most common cancer in the UK and the most common among 15-25 year olds. When someone is first diagnosed they often have little understanding of what their illness is. They come to us for trusted information and support, to learn more about the disease and their treatment options, to talk about and share their experiences, or to raise money to help others affected by lymphoma. We give a voice to people affected by lymphoma and their experiences,

and we support the healthcare professionals who look after them.

Everything that we do is rooted in patient experience. We take the action needed to help people through their diagnoses, their treatment, follow-up and beyond.

We are there when people are faced with the challenge of returning to a new ‘normal’ as life will never be the same again. By doing this, we support the work of the NHS, saving money and time, while also enhancing and complementing clinical care with a rounded package of personalised information, advice and support. In this way, we make a major difference to patient experience, ensuring no-one has to face their lymphoma alone.

Our work and all we have been able to achieve over the last year is thanks to our supporters, including those who volunteer for us.

Thank you.

Jonathan Pearce, Chief ExecutiveLymphoma Association

2016 – our 30th year in review

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I was delighted to accept the Lymphoma Association’s invitation to become its Patron, having been diagnosed with non-Hodgkin lymphoma in 2002. As Patron, I will do my best to ensure that, together, we raise awareness of lymphoma and I look forward to helping the charity support the thousands of people affected by it in the United Kingdom.

Lymphoma is a complex disease and for that reason support and information provided by the Association is essential to improve people’s understanding and to enhance the quality of life for those living with, and beyond, a diagnosis of lymphoma.

In 2016 alone, more than one million people visited the Lymphoma Association’s website, 5,500 people contacted the Information and Support team, and half a million information sheets and booklets were distributed. The numbers speak

for themselves. I am proud and honoured to be the Patron of an organisation so committed to supporting those in need.

Lord Menzies Campbell of Pittenweem

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Our year

in review

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4,724new posts on our online forums

1,433emails to our helpline

474healthcare professionals received lymphoma specific training

3,491people attended our support groups

647people affected by lymphoma attended a patient event

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25Beacon of Hope award winners

33,930Facebook followers

2,398calls to our helpline

Bumper year for Challenge events – raising £334k

1,088online live chats

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SupportA lymphoma diagnosis changes your life, whether it’s dealing with active monitoring or ‘watch and wait’, starting treatment straightaway, or coping with a ‘new normal’ and aftercare. Because of your support, we can make sure that no one has to face their lymphoma alone. “

In 2017We will expand our support provision by launching new closed Facebook groups offering more localised support and also more regional support groups. 2017 will also see us rolling out our Live your Life programme nationally.

We piloted our Live your Life programme, providing support, information and strategies for people who have finished their treatment or while on ‘watch and wait’. We also developed a lymphoma specific clinical psychologist service so that we can offer even more one-to-one support

Our regional presence enabled us to provide a wider community and network of support for people affected by lymphoma, including 47 support groups and 144 buddies

Thanks to you, in 2016…

“2016 was the third Lymphoma Conference I have attended. Each has offered invaluable support and a variety of new topics which are very useful for my cancer journey.”

Almost

5,500 people affected by lymphoma were able to contact us – and in new ways, such as WhatsApp and SMS – to receive reassurance and support

• Peripheral T cell lymphoma not otherwise specified (PTCL-NOS)T-cell lymphoma

T-cell lymphoma

Chronic lymphocytic leukaemia/small lymphocytic lymphoma

non Hodgkin lymphomaDiffuse large B-cell lymphoma

intravascular large B-cell lymphomaPrimary mediastinal large B-cell lymphoma (PMBL)

Burkitt lymphomaMantle cell lymphoma

Primary central nervous system (CNS) lymphoma

Hodgkin lymphomaClassical Hodgkin lymphomaNodular lymphocyte-predominant Hodgkin lymphoma

Low-grade (slow-growing) B-cell non-Hodgkin lymphoma

Post-transplant lymphoproliferative disorder (PTLD) Skin lymphoma (lymphoma only in the skin)B-cell skin lymphoma

T-cell skin lymphoma, eg mycosis fungoides

Follicular lymphomaLymphoplasmacytic lymphoma (Waldenström’s macroglobulinaemia)

Hairy cell leukaemia

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InformFor many people, a lymphoma diagnosis is even more daunting because they know nothing about the disease. With your help, we can make sure that people affected by lymphoma have the information they need to better understand their diagnosis, their treatment and their life beyond lymphoma.

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“In 2017We are expanding our library of information sheets and booklets, and making our expert and medically reviewed information more accessible and user friendly. We will also work closely with young people to develop and relaunch our ‘Young person’s guide to lymphoma’.

More than one million people visited our website in 2016 to get the information they needed about lymphoma, to learn about the support we offer, and to access our online forums

We sent out

24,228 booklets to healthcare professionals and people affected by lymphoma

Thanks to you, in 2016…

“Your information is targeted so well, it brings comfort, perspective and hope. It was like having a unique friend, guardian, advisor, all rolled into one.”

Thanks to your donations we were able to launch Lymphoma TrialsLink, which received

4,434page views in its first week and is helping people learn more about clinical trials and how to access them

Finding clinical trials just got easier.

Lymphoma TrialsLink

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EducateThe more we can help doctors, nurses and support workers, the better the experiences and outcomes for people with lymphoma. Our education and training enables healthcare professionals to remain up-to-date with good practice and new developments about lymphoma management and treatment.

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“In 2017We plan to launch an e-learning platform as part of our National Lymphoma Training programme, providing healthcare professionals with easy access to expert speakers and training sessions.

Two masterclasses for lymphoma or haematology clinical nurse specialists and a two-day lymphoma management course for specialist trainees – the lymphoma consultants of the future

A national lymphoma training programme session on Hodgkin lymphoma

Thanks to you, in 2016, we held...

“In my view the Lymphoma Association is a quality brand which continues to be a valued and trusted source of information and support by doctors, nurses and patients alike.” Professor Kristian Bowles, Consultant Haematologist, Clinical Director for Haematology, Norfolk and Norwich University Hospital

Four ‘Introduction to lymphoma’ events in different regions of the UK

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InfluenceCampaigning for a better understanding of lymphoma, earlier diagnosis and improved outcomes really matters.

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“In 2017We will publish the results of our lymphoma patient survey – the largest dataset of its kind to date. This report will provide invaluable information about the lymphoma patient experience and will be used to inform our influencing work in calling for improvements in cancer service policy and practice.

We were able to welcome Lord Menzies Campbell of Pittenweem as our Patron

We launched our ‘What’s your Type?’ subtypes campaign for Lymphatic Cancer Awareness week. This brought together healthcare professionals and people affected by lymphoma to help us promote the need for people to know and understand their type of lymphoma and for NHS England to collect better data about lymphoma subtypes

Thanks to you, in 2016…

“As Patron I will do my best to ensure that together we raise awareness of lymphoma and look forward to helping the charity support the thousands of people affected by it in the UK.” Lord Menzies Campbell

We were able to launch our first ever policy report Lymphoma – what’s that? making recommendations for how health and NHS policy makers can help us make life better for people affected by lymphoma

How we raised our money in 2016 How we spent itOur income last year was £1,677,351. In 2016 we spent £1,508,055. Out of every

pound, 61p was spent directly on helping people affected by lymphoma.

2016Where your £1

goes

2%charitable activities

27%

19p

legacies

generating funds

69%

61p

fundraising

charitable spend helping

people affected by lymphoma

2%

20p

trading & investment

support costs

Everything we do is made possible by the support we receive from people like you. Thank you.

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Our corporate and trust supporters

Trusts and Foundations

Andor Charitable Trust Asda FoundationBig Lottery Fund – Reaching Communities Bryan Lancaster Trust C A Redfern Charitable Foundation Christopher Laing FoundationColefax Charitable TrustConstance Travis Charitable TrustDavid & Ruth Lewis Family Charitable TrustDavis Rubens Charitable TrustDonald Forrester TrustJohn Jarrold Trust Limited Leeds Convalescent SocietyLupton Tower TrustMasonic Charitable Foundation – Relief Chest schemeMurphy-Neumann Charity Company LimitedPenguins Against Cancer PF Charitable TrustSouter Charitable TrustThe Aylesford Family Charitable TrustThe BP FoundationThe Carrington Charitable TrustThe Catherine Cookson Charitable Trust The Charity Of Stella SymonsThe Charles Irving Charitable TrustThe Charles Littlewood Hill TrustThe David Gibbons Foundation

The Deakin Charitable TrustThe D’Oyly Carte Charitable TrustThe Footprints Foundation The Frederick & Phyllis Cann TrustThe George Mathieson Charitable TrustThe Gilander Foundation The Goldsmiths Company CharityThe H R Pratt Boorman Family FoundationThe Hall Charitable TrustThe Hamilton Wallace TrustThe Hilary Awdry Charitable TrustThe James Wise Charitable Trust The Kass Charitable Trust The Lord Belstead Charitable SettlementThe Mackintosh FoundationThe Margaret Gladys Grimes Charitable TrustThe Michael and Anna Wix Charitable TrustThe Miss J K Stirrup Charity TrustThe Mosse Charitable SettlementThe Neighbourly Charitable TrustThe Nottingham General DispensaryThe Rest-Harrow TrustThe Roger Counter FoundationThe Salter Family Charitable TrustThe Sir Jules Thorn Charitable TrustThe Sobell FoundationThe Sovereign Health Care Charitable TrustThe Trefoil TrustThe Vivienne and Samuel Cohen Charitable Trust

The Weinstein FoundationWalter Swindon Charitable TrustW E Dunn Trust

Companies

Alliance Medical Altus Ltd Apollo Fire Detectors Ltd B L Fenton & Sons Barclays Treasury Bristol-Myers Squibb Pharmaceuticals LimitedBritish Telecommunications plcCapita Business Services LtdCelgene Ltd CTI Life Sciences Fundraising Made Easy Gilead Sciences Ltd Green Willow Funerals LimitedGreenergy International Ltd HG Construction Ltd Infinity Insurance Services James Hay Partnership Janssen-Cilaq Ltd John Rowan and Partners Kingston Smith LLP Kirkham Property

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Kwittken M&G Securities Ltd M&S Simply Food BorehamwoodMerck Sharp & Dohme LimitedMermaid Medical MM Bellinger & Sons Ltd Murphy-Neumann Charity Company LimitedNationwide Building Society Paradigm Mortgage Services LLPPrague Proton Centre Patients Direct Ltd Perrigo UK Quantec Quintiles Ltd Rathbone Investment ManagementRecycle 4 Charity.co.uk Roche Products Ltd Scottish Friendly Sodexo South China Pearl Co Ltd SSE plc Sytel Ltd Takeda UK Ltd Teleflex Group Ltd Tesco Stores Ltd The Share Centre Ltd The Unity Lottery Thomas Miller & Co Ltd Woodward Estate Agents and Chartered Surveyors

Governance and advisors

Patron

Lord Menzies Campbell of Pittenweem

President

Professor David Linch

Trustees

Gordon Johns (Chair, and Chair of Remuneration Committee)David BarnettDr Graham Collins June CookSteve Dunn (Treasurer, and Chair of Finance Committee)Jeremy Harrington (appointed 11 July 2016)Mark Harrison Nicola KingBurton Paul Dr Benjamin Riley

Chief Executive

Jonathan Pearce

Medical advisory panel

Dr Adrian BloorDr Andrew McMillanDr Andy WotherspoonDr Ben KennedyDr Chris HattonDr Christopher McNamaraDr Eve Gallop-EvansDr Georgina HallDr Graham CollinsDr Kirit ArdeshnaDr Pam McKayDr Paul FieldsDr Paul RevellDr Prem MahendraDr Ravi RatnavelDr Robert MarcusDr Rod JohnsonDr Ruth PettengellProf Andrew ListerProf Andrew PettittProf David CunninghamProf David LinchProf Graham JacksonProf John RadfordProf Martin Dyer

Prof Peter HoskinProf Peter JohnsonProf Simon RuleProf Stephen DevereuxProf Tim Illidge

Advisory group

Scott MilwayRobert TompkinsCorrin HoyesMark ZymelaPat AylettTrevor LynchBernard RiceSharon and Mike BurgePeter WattsClaire MunroEdward HyamsHelen WhitrowValerie WilliamsMartin WhinneyAndy BartonJulie LordDavid BeareElizabeth Susan SavageAnn MiskiminDebbie BrownEmma Todd- WardCarol JonesCormac Taggart

Elisabet NielikäinenDavid HorganGeraldine MasonJane MaitlandMary LucasAbu SaudDavid IlesJayne AshcroftDavid Ross ThomKathleen LundAmy SandersEdward SemplePeter BostockDavid CookeBarbara LiptrotJane Fraser- HookLinda EdmondsCaroline BushellFiona EdgerleyJuliana AbellLyn JonesGinny HodgesJohn MorrisAshley MedicksKatriona Staples (Hurll)Brian JacksonCarl WinkleyRoger Moore Stepped down 13.9.16David Cohen CBE

“I felt I just couldn’t do it anymore. I was lying on the floor, unable to do anything for myself. I couldn’t string a sentence together. I couldn’t even wash myself. Talking to the Lymphoma Association buddy saved my life.”Tracey, diagnosed with B-cell lymphoma in 2009

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A huge thank you to all our supporters, donors, volunteers. partners and advisors. Together,

we can make sure that no one has to face their lymphoma alone.

Lymphoma Association3 Cromwell CourtNew StreetAylesburyBucks HP20 2PB

Tel: 01296 619400Freephone helpline: 0808 808 5555

information@lymphomas.org.ukwww.lymphomas.org.ukThe Lymphoma Association is a registered charity in England and Wales (1068395) and in Scotland (SC045850). A company limited by guarantee registered in England and Wales (number 03518755).