The (old) what “The only UK charity devoted to research in to leukaemia, lymphoma, and myeloma”
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Transcript of The (old) what “The only UK charity devoted to research in to leukaemia, lymphoma, and myeloma”
The (old) what
“The only UK charity devoted to research in to leukaemia, lymphoma, and myeloma”
Why we are here
We’re here to beat blood cancer
Our Vision
Mission• We stop people dying from blood
cancer• We make patients lives better• We stop people getting blood cancer
in the first place
How
What
Why
So what did we do last year?
We said we would prioritise patient need
• Project initiation document, collaborative effort, approved by PIMSC
• Resourcing approved and team recruited• Three key strands under way expert opinion-
researchers and clinicians, patient opinion and understanding our own portfolio.
• Focus groups and one to one interviews• Initial findings discussed at the Board in May
We said we wanted to achieve a step change in income
• LTP, Blenheim, Frankie & Benny’s, Calendar Girls, SCBI
• Wickes & the tool kit!• Launch of DFP• Gift aid claim
We said we would leverage resource through partnership
• £600,000 donation from CWC
• Up to £5m support for a gene therapy trial from TSB
• Over 20 drugs provided free for TAP
We said we would improve reach reputation and brand
• 50,000 Patient Information booklets• Unique users of OPS up 140%• Patient pages reaching 300,000 people pa• 620,000 unique people visited web (up
49%)• Facebook likes up 20%
We said we would strengthen the organisation
• £7.7M from balance sheet to patients in 3 years
• PDR introduced, self awareness for all• PDR training facilitated by us!!• Pay & Grading review• Chairman & 2 Trustees recruited• Full governance review
Patient Plans• Invested £28.2 million (gross) in research &
trials• TAP extension• Launched online patient services• Set up a Medical Advisory Panel• Established new patient services team and
increased clinician and patient engagement• Key meetings & events - Karen Kennedy, Medcity, George Freeman, Sean Duffy
FY14Pre-audit
FY13Actual
FY14 Budget
£’m £’m £’m
Income
Fundraised income (inc Trading) 13.3 11.7 14.1
Legacies *6.5 6.5 6.5
19.8 18.2 20.6
Investments 1.7 1.7 2.0
Other income (Property sale) - 0.5 -
21.5 20.4 22.6
Expenditure (extract)
Research Commitments 22.6 29.0 22.4
Deferred commitments (3.9) (3.9)
Patient Benefit expenditure 1.7 1.4 1.9 20.4 26.5 24.3
How
What
Why
Patient plans 2015• We will begin to respond to emerging data from PPN• Trials Acceleration Programme will move from a pilot to a
programme• First, first in human trial• More phase 3 trials• Start conversations about leadership international trials• Bringing together patient data and technology in new exciting
ways • More unique visitors to OPS, more active users and more patient
posts• More reach and engagement with the clinical community and our medical advisory panel
Patient plans 2015
• Speakers House Dinner
• Engagement with manifesto teams
• Contribution to development of life science agenda
Prioritising Patient Need Plans 2015
• Year 1 report May 2014• Patient voice and expert opinion report
January 2015• Definitive incidence and survival stats July
2014• Comprehensive snapshot of research portfolio
July 2014• Prioritisation methodology March 2015• Policy priorities from PPN
Step change in income 2015
• Business Improvement • New fundraising areas • Know Our Audiences • Innovation • Fit for purpose • Naming review
Reach, Reputation & Brand 2015
• Downing Street reception• Naming review• Online-offline communications mix• Website visitors, social media followers,
contacts on Civi, sign ups to BEAT
Partnerships
• Map what other charities do for patients• Demonstrate value charity can bring to
life science agenda• LLR-HMRN-Sanger• Role in AMRC, NCRI, NCIN etc• Statutory funding
Strengthening the Organisation 2015
• Financial risk model• Embed PDR and define the link with performance
assessment• Self awareness programme for everyone• Core skills development• Review HR policies• External staff survey• Board development• Ground floor!
FY15Budget
FY14Pre-audit
£’m £’m
Income
Fundraised income (inc Trading) 14.7 13.3
Legacies 6.9 *6.5
21.6 19.8
Investments 1.8 1.7
Other income (Property sale) - -
23.4 21.5
Expenditure (extract)
Research Commitments 32.3 22.6
Deferred commitments (6.3) (3.9)
Patient Benefit expenditure 2.5 1.7 24.3 20.4
So why do I feel so confident? I joined LLR in 1999.• This is my cousin Rob, in 1999 he was given a 75%
chance of survival, he didn’t make it but today he would have a 95% chance of survival.
• 15 years ago if you had Chronic Myeloid Leukaemia, you needed a transplant , like Geoff, today you are given a drug every day and can expect normal life expectancy• 15 years ago if you had myeloma, there were pretty much no treatments, now we can prolong life and the quality of life between episodes even though it’s not curable.
I could go on…
“ Leukaemia & Lymphoma Research is a tidal wave of warmth that engulfs you, just as you are feeling most alone”
Life is a gift to be used wisely and lived fiercely