the story of the year ahead. today the past the present the year ahead and beyond
TRANSCRIPT
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The story of the year ahead
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Today
• The past
• The present
• The year ahead and beyond
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The Past
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Our Belief
Life is a gift.
Use it wisely
and live it fiercely.
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£500 million investedin 55 years
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55 Years: Bold decisions• Starting the charity • Robust international peer review from the beginning• World leading stratified medicine cytogenetics & MRD test • Not making it all about children• HMRN real world data • Robust and sustained career development programme• Change of charitable objectives, from academic research to patient led research• Expansion of activities to improve patients’ lives• Trials Acceleration Programme• PPN- really understanding the need, able to deliver patient led improvements authentically• First in Human trials
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Achievements
• Successful application of chemotherapy for childhood leukaemia• Development of magic bullet therapies in CML and acute promyelocytic leukaemia• Use of monoclonal antibodies in diagnosis and treatment• Development of cell based therapies
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The Present
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How
What
Why
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Bold decisions:Prioritisation of patient need
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Our aims for PPN
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24 key issues for blood cancer patients
1. Blood cancer awareness2. The biggest killers3. Early deaths4. Pre-malignant conditions5. Diagnosis6. Role of GPs7. Relationship with medical profession8. Clinical Nurse specialists9. Information and advice10. Peer-to-peer support11. Empowering patients12. Blood cancers are different13. Role of carers
14. Support for others15. Psychological support16. Apparent lack of provision17. Watch and wait18. Access to new drugs and treatment19. Age and Ageing20. Clinical trials21. Socio-economic factors22. Reducing secondary cancers23. Maintaining remission24. Post treatment
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What we learned from PPN
Existing data
Primary patient data
Research strategy
Patient experience
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Prioritisation of patient need& Research strategy
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Our 24 key issues for blood cancer patients
1. Blood cancer awareness2. The biggest killers3. Early deaths4. Pre-malignant conditions5. Diagnosis6. Role of GPs7. Relationship with medical profession8. Clinical Nurse specialists9. Information and advice10. Peer-to-peer support11. Empowering patients12. Blood cancers are different13. Role of carers
14. Support for others15. Psychological support16. Apparent lack of provision17. Watch and wait18. Access to new drugs and treatment19. Age and Ageing20. Clinical trials21. Socio-economic factors22. Reducing secondary cancers23. Maintaining remission24. Post treatment
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1. Myeloma2. DLBC Lymphoma3. AML4. MDS5. CLL
The biggest killers- lives lost at 5 years
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The biggest killers- lives lost at 5 years
69% of
lives lost at
5 years
48% of
annual diagnosis
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Early deaths
50% of deaths occur in first 3 months
AML
Also Diffuse large B cell lymphoma
DLBCL
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Approximately 16-17% of all lives lost 5 years after diagnosis are lost within 3 months
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Pre-malignant conditions
MGUS & MDS account for nearly
17% of
deaths
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What we learned from PPN
Research strategy
Existing dataResearch strategy 1. Biggest killers
2. Early deaths3. Pre-malignant MGUS & MDS
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Prioritisation of patient need& Patient Experience
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Our 24 key issues for blood cancer patients
1. Blood cancer awareness2. The biggest killers3. Early deaths4. Pre-malignant conditions5. Diagnosis6. Role of GPs7. Relationship with medical profession8. Clinical Nurse specialists9. Information and advice10. Peer-to-peer support11. Empowering patients12. Blood cancers are different13. Role of carers
14. Support for others15. Psychological support16. Apparent lack of provision17. Watch and wait18. Access to new drugs and treatment19. Age and Ageing20. Clinical trials21. Socio-economic factors22. Reducing secondary cancers23. Maintaining remission24. Post treatment
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Evidence suggests:
1) Low awareness of blood cancer and symptoms within:
2) Low awareness of blood cancer charities
General Public
Primary Care Secondary Care
Blood cancer awareness
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“I’d never really heard of Leukaemia before my diagnosis”
“Having never heard of Myeloma a lot more information would have been useful.”
“Information on the type of cancer I had been diagnosed with as I had never heard of lymphoma at the time.”
“As MDS is quite a rare blood cancer we had never heard of it before. My mum says she couldn't take any of it in, it was just lots of medical terms she and my dad didn't understand.”
(online survey)
Blood cancer awareness
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0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
1%
2%
38%
78%
78%
81%
86%
88%
90%
90%
91%
91%
93%
93%
93%
94%
95%
HFLC_Q2b. For the following question, by aware we mean having previously heard about a particular condition.Which, if any, of the following conditions were you aware of before taking this survey? (Please select all that apply)Base: All GB Adults who agreed to take part (1,970)
Don't knowNone of these
MyelomaLymphoma
Blood cancerMelanomaGlaucoma
Bipolar disorderPancreatic cancer
Cystic fibrosisMultiple sclerosis
Coronary heart diseaseLeukaemia
ArthritisProstate cancer
StrokeDiabetes
Awareness of health conditions - prompted
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Terms used to describe conditions- Leukaemia
Source: LLR YouGov survey
Cancer
BloodCells
Blood Cance
r
Bone/ bone m
arrow
White
blood/ce
lls
Nodes/glands
Skin
Lym
ph/ Lym
phatic
Tumour
Don't know
0%
10%
20%
30%
40%
50%
60%
70%
80%70%
67%
16%
Leukaemia
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Terms used to describe conditions- Lymphoma
Source: LLR YouGov survey
Cancer
BloodCells
Blood Cance
r
Bone/ bone m
a...
White
blood/ce
lls
Nodes/glands
Skin
Lym
ph/ Lym
ph...
Tumour
Don't know
0%
10%
20%
30%
40%
50%
60%
70%
80%
51%
35% 36%
LeukaemiaLym-phoma
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Cancer
BloodCells
Blood Cance
r
Bone/ bone m
arrow
White
blood/ce
lls
Nodes/glands
Skin
Lym
ph/ Lym
phatic
Tumour
Don't know
0%
10%
20%
30%
40%
50%
60%
70%
80%
16%
36%
50%43%
LeukaemiaLym-phoma
Source: LLR YouGov survey
Terms used to describe conditions- Myeloma
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1. Low awareness of blood cancer charities
Comic Relief / Sport Relief / Red Nose Day
Mind
RNIB / Royal National Institute of Blind People
BBC Children in Need
UNICEF UK
Dogs Trust
Scope
RSPB / Royal Society for the Protection of Birds
PDSA / People's Dispensary for Sick Animals
Marie Curie Cancer Care
Barnardo's
Macmillan Cancer Support
BHF/ British Heart Foundation
Oxfam
0% 10% 20% 30% 40% 50% 60% 70%4%4%
5%5%5%5%
6%6%
7%7%7%7%7%
8%10%
11%11%
13%14%
17%19%
24%25%
30%30%
36%44%
45%
Source: Third Sector Brand Charity Index – 2014.. Answers shown 4% and above(100+ respondents)
LLR = 0% spontaneous awareness
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Prostate Cancer UK
The Stroke Association
Action on Hearing Loss
Battersea Dogs & Cats Home
The Wildlife Trusts
Anthony Nolan
MS Society / Multiple Sclerosis Society
MSF / Medecins Sans Frontieres
YMCA
CLIC Sargent
World Vision UK
CAFOD / Catholic Agency For Overseas Development
The National Trust
Breast Cancer Care
Mencap
Royal British Legion / Poppy Appeal
Alzheimer's Society
Cats Protection
0% 10% 20% 30% 40% 50% 60% 70%1%1%1%1%1%1%1%1%1%1%1%1%1%1%1%1%1%1%1%1%1%1%1%1%
2%2%2%2%2%2%
3%3%3%3%3%3%
Source: Third Sector Brand Charity Index – 2014.. Answers shown 1% to 3%
1. Low awareness of blood cancer charities
LLR = 0% spontaneous awareness
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The Royal Marsden Cancer Charity
Leukaemia & Lymphoma Research
CLIC Sargent
Children with Cancer
Breakthrough Breast Cancer
Anthony Nolan
Prostate Cancer
Breast Cancer Care
Marie Curie
Macmillan Cancer Support
Cancer Research UK
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
20%
26%
31%
32%
45%
52%
53%
60%
87%
89%
94%
General Public prompted awareness : Cancer charities
Source: Third Sector Brand Charity Index - 2014
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0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
3%6%
2%10%
14%19%19%
29%38%
55%63%
88%
Q: Which, if any, of the following charity brands were you aware of before taking this survey? (Please select all that apply)Base: All GB Adults (2,016), YouGov Omnius study
Don't know
None of these
Delete Blood Cancer
Myeloma UK
Lymphoma Association
Leukaemia Care
Leukaemia and Lymphoma Research
Children with Cancer UK
CLIC Sargent
Teenage Cancer Trust
Anthony Nolan
Marie Curie Cancer Care
General Public prompted awareness : Cancer/Blood Cancer
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Base: 1,725 - LLR Patient Need survey
Delete Blood Cancer
Myeloma UK
Lymphoma Association
Leukaemia Care
Macmillan Cancer Support
Children with Cancer UK
CLIC Sargent
Teenage Cancer Trust
Anthony Nolan
Marie Curie Cancer Care
Awareness of ‘people affected by blood cancer’
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
18%43%
48%61%61%62%
78%83%
90%91%93%Cancer Research UK
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2. Blood cancers are different
“I may be being naïve here, but a Macmillan nurse, is that just for different kind of cancers, whereas we don’t really have a nurse?”
Available provision Feeling like a fraud
Treated differently
"Macmillan aren’t going to be interested in me, I'm a bit of a fraud." Because when I think about Macmillan, I think about people with really aggressive cancers.”“So in terms of how I'm feeling at present, I often feel like a fake - after all I haven’t gone through chemotherapy yet, or had disfiguring surgery yet there is this stigma about the word cancer & because I don't look as people expect a Stage 3B cancer patient to look I don't fit-in. Some days that is more of a challenge than others !”
“Is it just blood cancer? Someone I know had breast cancer operation. She’s going to the haven, she’s having yoga, massages you name it she’s having it! But there’s lots of money being thrown into breast cancer”
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“Someone to talk to that knows what help is available would be useful, I'm still working, though in some continual pain.”(‘Greatest need’, online survey)
“Overall it would have been wonderful to have one person whom I sat down with and went over all the different options/support available, what my needs were (education, financial, etc)and then they help me to get an apt with the right person to answer/educate regarding those needs. I.e. oncologists nurse or pharmacist for info on med side effects, social worker re work and financial needs, counselor re how to tell kids n family and dealing with my emotional needs.”(‘Greatest need’, online survey)
“A dedicated nurse for information on all aspects of blood cancer the same as they have for say breast cancer or other types of cancer. For blood cancer there seems to be no information.”(‘Greatest need’, online survey)
“More support offered through specialist health care workers on who will signpost”(‘Greatest need’, online survey)
“Receiving professional consultancy that accurately reflected or signposted the information I have since become aware of through on-line support blogs.”(‘Greatest need’, online survey)
3. Apparent lack of provision/signposting
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Their suggestions are informing our thinking on… one place to go
P1: “If everyone with any form of leukaemia was being told if you want to talk to other people going through this then go to this place, ring this number.. It may then enable you..”
P2: “Yes, its all about making it easier for people..”
(Male patient CML, 20’s, and Female patient, NHL, 60’s , Colchester)
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What we learned from PPN
Patient experience
Primary patient data
Patient experience
1. Public Awareness2. Blood cancers are different3. Perceived lack of provision /
one authority
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The year ahead and beyond
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How
What
Why
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Strategic Response to PPN Evidence
Primary patient data
Patient experience
1. Public Awareness2. Blood cancers are
different3. Perceived lack of
provision / one authority
Existing data
Research strategy 1. Biggest killers
2. Early deaths3. Pre-malignant MGUS
& MDS
1. Alignment of research strategy
2. Governance aligned to strategy
1. Blood Cancer Signposting Service & collaboration
2. Public Awareness Campaign
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The health environment has changed
• CCG’s ‘Shifting Gears’ report – beating cancer needs to include:– Prevention– Public messages about healthier lifestyles and enabling people to take action to live
healthier lives– Increasing awareness of early diagnosis by running public awareness campaigns
• NHS England’s ‘NHS Five Year Forward View’:– Importance of disease prevention – Public health– Faster diagnosis of cancer – Addressing mental health issues
• Opportunity to align ourselves to emerging UK policy health thinking:– Positioning ourselves as a thought leader and authority for blood cancer
and related conditionsPatient led improvement at the core
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Our understanding of patients has changed
Low awareness of:• Many different blood cancers• Of symptoms • Of organisations that can help
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Knowing our audiences has changed
• Target patient benefit focused audience is estimated to be circa 2.9 million
– Of which circa 0.5 million are currently aware of us
• Target supporter focused audience is estimated to be circa 4.2 million
– Of which circa 0.8 million are currently aware of us
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Lives lost at 5 years: the biggest killers
1. Myeloma2. AML3. DLBC Lymphoma4. MDS5. CLL
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Bringing patient benefit & income
generation closer together
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Bringing patient benefit & income
generation closer together
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The year ahead
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Strategic Response to PPN Evidence
Primary patient data
Patient experience
1. Public Awareness2. Blood cancers are
different3. Perceived lack of
provision / one authority
Existing data
Research strategy 1. Top 5 for lives lost
2. Early deaths3. Pre-malignant MGUS
& MDS
1. Alignment of research strategy
2. Governance aligned to strategy
1. Blood Cancer Signposting Service & collaboration
2. Public Awareness Campaign
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• Low awareness of blood cancers + blood cancer organisations
• Perceptions of a lack of provision and support (patients/ carers)
• Patients want support from peers and professionals
• A need for one place to go / a signposting service to support them through their entire journey
2. Signposting & Awareness
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“Overall it would have been wonderful to have one person,
whom I sat down with and went over all the different
options/support available, what my needs were (education,
financial, etc.) and then they help me to get an appointment
with the right person to answer/educate regarding those
needs. i.e. oncologists nurse or pharmacist for info on med
side effects, social worker re work and financial needs,
counsellor re how to tell kids n family and dealing with my
emotional needs.”
- ‘Greatest need’, PPN online survey
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one personsource
phone
healthcareprofessionals
patients
family & friends
online
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Digital signposting service
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online directory
information aggregator
review site
community hub
crowdsourceplatform
support scrapbook
Signposting service
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Collaboration
• One source• Clarity• Reduce duplication• Public trust and confidence• Blood cancer sector - for patients - for money
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3. Public Awareness campaign
It’s all about SeptemberBlood cancer awareness month
• New service• Biggest ever investment in blood cancer awareness
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How
What
Why
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Vision: Beating Blood Cancer
Mission:we stop people dying; we make patients’ lives better; we
stop people getting blood cancer in the first place
we research; we help; we campaign; we share learning ; we raise money
Five Strategic Goals1. Optimisation of patient impact2. Step change in income3. Leveraging resource through partnership4. Improve reach, reputation and brand5. Strengthen the organisation
Major Projects FY16:• Response to PPN –Blood Cancer Support Service (BCSS),
awareness• Web development• Patient Service Directorate• Major funding
The Year Ahead
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Income1. Major funding team2. Development of Individual Giving (response to knowing our audience)3. Broaden sports4. Improve relationships 5. Testing innovation
Patient Services1. Create Directorate2. BCSS3. Building relationships4. Awareness
Research1. Recruitment of Director2. PPN Alignment3. Committee Governance Structure
Marketing1. BCSS and web2. Insight for impact and action3. Public awareness4. Innovation structure
Finance & Office Services1. Dynamic risk management2. Improves processes3. Space4. Pro active support of budget holders
HR1. Pay progression policy2. recruitment, inductions and probation3. Staff survey4. Learning & Development support
Priorities
Learning & Development – self awareness, influencing & communicating
Business efficiency- managing budgets, forecasting etc
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Cathy’s objectives• VISION: Sustain the clarity of vision to beat blood cancer. • IMPACT: Define major steps that demonstrate tangible progress is being made in beating blood cancer.• MONEY:
- Define targets to demonstrate role in leveraging money for beating blood cancer - Play a role in ensuring that money is directed to blood cancers in a collaborative way - Create defined growth in income - Prioritise major funding as a growth opportunity , work closely with the team, mentoring
• AWARENESS: - Focus on public understanding and awareness
COMMUNICATION: - Use the role of CEO of the second largest cancer research charity to create more
impact and awareness for blood cancer patients
- Communicate PPN findings and response, lead collaborative conversations
with other organisations.• TEAM: Recruit and induct research director & patient services director; continue to develop and strengthen the Director and Heads team; empower others with clarity of objectives and delegation.
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What next?
• Team plan and budget• Individual objective setting aligned to plan• Self awareness• PDR
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Within this lifetime
• Early deaths largely eradicated• Preventative medicine/lifestyle adopted- reduced progression from pre-
malignancies• Living well with long-term conditions• Everyone in primary & secondary care has awareness of blood cancers• Patient & public awareness transformed• Earlier diagnosis• Biological therapies for children• > 60% 5 yr survival for AML patients• MDS treated with drugs not transfusions• CLL controlled• Cures for myeloma• > 90% survival across all lymphomas
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Our Belief
Life is a gift.
Use it wisely
and live it fiercely.
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Thank you.
Together we’ll beat blood
cancer.