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The story of the year ahead Today • The past • The present • The year ahead and beyond The Past Our Belief Life is a gift. Use it wisely and live it fiercely. £500 million invested in 55 years 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 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 The Present How What Why Bold decisions: Prioritisation of patient need Our aims for PPN 24 key issues for blood cancer patients 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. Blood cancer awareness The biggest killers Early deaths Pre-malignant conditions Diagnosis Role of GPs Relationship with medical profession Clinical Nurse specialists Information and advice Peer-to-peer support Empowering patients Blood cancers are different Role of carers 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. Support for others Psychological support Apparent lack of provision Watch and wait Access to new drugs and treatment Age and Ageing Clinical trials Socio-economic factors Reducing secondary cancers Maintaining remission Post treatment What we learned from PPN Existing data Research strategy Primary patient data Patient experience Prioritisation of patient need & Research strategy Our 24 key issues for blood cancer patients 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. Blood cancer awareness The biggest killers Early deaths Pre-malignant conditions Diagnosis Role of GPs Relationship with medical profession Clinical Nurse specialists Information and advice Peer-to-peer support Empowering patients Blood cancers are different Role of carers 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. Support for others Psychological support Apparent lack of provision Watch and wait Access to new drugs and treatment Age and Ageing Clinical trials Socio-economic factors Reducing secondary cancers Maintaining remission Post treatment The biggest killers- lives lost at 5 years 1. 2. 3. 4. 5. Myeloma DLBC Lymphoma AML MDS CLL The biggest killers- lives lost at 5 years 69% of lives lost at 5 years 48% of annual diagnosis Early deaths AML 50% of deaths occur in first 3 months DLBCL Also Diffuse large B cell lymphoma Approximately 16-17% of all lives lost 5 years after diagnosis are lost within 3 months Pre-malignant conditions MGUS & MDS account for nearly 17% of deaths What we learned from PPN Research strategy Existing data Research strategy 1. Biggest killers 2. Early deaths 3. Pre-malignant MGUS & MDS Prioritisation of patient need & Patient Experience Our 24 key issues for blood cancer patients 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. Blood cancer awareness The biggest killers Early deaths Pre-malignant conditions Diagnosis Role of GPs Relationship with medical profession Clinical Nurse specialists Information and advice Peer-to-peer support Empowering patients Blood cancers are different Role of carers 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. Support for others Psychological support Apparent lack of provision Watch and wait Access to new drugs and treatment Age and Ageing Clinical trials Socio-economic factors Reducing secondary cancers Maintaining remission Post treatment Blood cancer awareness Evidence suggests: 1) Low awareness of blood cancer and symptoms within: General Public Primary Care Secondary Care 2) Low awareness of blood cancer charities Blood cancer awareness “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) Awareness of health conditions - prompted Diabetes Stroke Prostate cancer Arthritis Leukaemia Coronary heart disease Multiple sclerosis Cystic fibrosis Pancreatic cancer Bipolar disorder Glaucoma Melanoma Blood cancer Lymphoma Myeloma None of these Don't know 95% 94% 93% 93% 93% 91% 91% 90% 90% 88% 86% 81% 78% 78% 38% 2% 1% 0% 20% 40% 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) 60% 80% 100% Terms used to describe conditions - Leukaemia 80% 70% 70% 60% Leukaemia 67% 50% 40% 30% 20% 10% 0% Source: LLR YouGov survey 16% Terms used to describe conditions - Lymphoma Leukaemia 80% Lymphoma 70% 60% 50% 51% 40% 30% 20% 10% 0% Source: LLR YouGov survey 35% 36% Terms used to describe conditions - Myeloma Leukaemia Lymphoma Myeloma 80% 70% 60% 50% 50% 40% 30% 20% 10% 0% Source: LLR YouGov survey 43% 36% 16% 1. Low awareness of blood cancer charities Cancer Research UK Oxfam RSPCA / Royal Society for the Prevention of Cruelty to Animals BHF/ British Heart Foundation NSPCC / National Society for the Prevention of Cruelty to Children Macmillan Cancer Support British Red Cross Barnardo's Age UK Marie Curie Cancer Care Save the Children PDSA / People's Dispensary for Sick Animals RNLI / Royal National Lifeboat Institution RSPB / Royal Society for the Protection of Birds Help for Heroes Scope The Salvation Army Dogs Trust WWF UK UNICEF UK WaterAid BBC Children in Need Christian Aid RNIB / Royal National Institute of Blind People Guide Dogs for the Blind Association Mind Shelter Comic Relief / Sport Relief / Red Nose Day 19% 17% 14% 13% 11% 11% 10% 8% 7% 7% 7% 7% 7% 6% 6% 5% 5% 5% 5% 4% 4% 0% 10% 20% 25% 24% 30% 30% 36% 45% 44% LLR = 0% spontaneous awareness 30% 40% Source: Third Sector Brand Charity Index – 2014.. Answers shown 4% and above(100+ respondents) 50% 60% 70% 1. Low awareness of blood cancer charities 3% 3% 3% 3% 3% 3% 2% 2% 2% 2% 2% 2% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% Cats Protection Alzheimer's Society Royal British Legion / Poppy Appeal Mencap Breast Cancer Care The National Trust CAFOD / Catholic Agency For Overseas Development World Vision UK CLIC Sargent YMCA MSF / Medecins Sans Frontieres MS Society / Multiple Sclerosis Society Anthony Nolan The Wildlife Trusts Battersea Dogs & Cats Home Action on Hearing Loss The Stroke Association Prostate Cancer UK 0% LLR = 0% spontaneous awareness 10% 20% Source: Third Sector Brand Charity Index – 2014.. Answers shown 1% to 3% 30% 40% 50% 60% 70% General Public prompted awareness : Cancer charities 94% 89% 87% Cancer Research UK Macmillan Cancer Support Marie Curie 60% Breast Cancer Care 53% 52% Prostate Cancer Anthony Nolan 45% Breakthrough Breast Cancer 32% 31% 26% Children with Cancer CLIC Sargent Leukaemia & Lymphoma Research 20% The Royal Marsden Cancer Charity 0% 10% Source: Third Sector Brand Charity Index - 2014 20% 30% 40% 50% 60% 70% 80% 90% 100% General Public prompted awareness : Cancer/Blood Cancer Marie Curie Cancer Care 88% Anthony Nolan 63% Teenage Cancer Trust 55% CLIC Sargent 38% Children with Cancer UK 29% Leukaemia and Lymphoma Research 19% 19% 14% 10% Leukaemia Care Lymphoma Association Myeloma UK 2% 6% 3% Delete Blood Cancer None of these Don't know 0% 10% 20% 30% 40% 50% 60% 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 70% 80% 90% 100% Awareness of ‘people affected by blood cancer’ Cancer Research UK 93% 91% 90% 83% 78% Macmillan Cancer Support Marie Curie Cancer Care Anthony Nolan Teenage Cancer Trust CLIC Sargent 62% 61% 61% Children with Cancer UK Lymphoma Association Leukaemia Care 48% 43% Myeloma UK Delete Blood Cancer 18% 0% Base: 1,725 - LLR Patient Need survey 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 2. Blood cancers are different Available provision “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?” Treated differently “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” Feeling like a fraud "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 !” 3. Apparent lack of provision/signposting wonderful to have one person whom I sat down with and went over all the different options/support available, what my needs were (education, “Overall it would have been 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) “Someone to talk to that knows what help is available would be useful, I'm still “A working, though in some continual pain.” (‘Greatest need’, online survey) 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) “Receiving “More signposted the information I have since become aware of through on-line support blogs.” (‘Greatest need’, online survey) signpost” (‘Greatest need’, online survey) professional consultancy that accurately reflected or dedicated nurse for information on all aspects of blood cancer the support offered through specialist health care workers on who will 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) What we learned from PPN Patient experience Primary patient data Patient experience 1. Public Awareness 2. Blood cancers are different 3. Perceived lack of provision / one authority The year ahead and beyond How What Why Strategic Response to PPN Evidence Existing data Research strategy Primary patient data Patient experience 1. Biggest killers 2. Early deaths 3. Pre-malignant MGUS & MDS 1. Public Awareness 2. Blood cancers are different 3. Perceived lack of provision / one authority 1. Alignment of research strategy 2. Governance aligned to strategy 1. Blood Cancer Signposting Service & collaboration 2. Public Awareness Campaign 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 conditions Patient led improvement at the core Our understanding of patients has changed Low awareness of: • Many different blood cancers • Of symptoms • Of organisations that can help 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 Lives lost at 5 years: the biggest killers 1. 2. 3. 4. 5. Myeloma AML DLBC Lymphoma MDS CLL Bringing patient benefit & income generation closer together Bringing patient benefit & income generation closer together The year ahead Strategic Response to PPN Evidence Existing data Research strategy Primary patient data Patient experience 1. Top 5 for lives lost 2. Early deaths 3. Pre-malignant MGUS & MDS 1. Public Awareness 2. Blood cancers are different 3. Perceived lack of provision / one authority 1. Alignment of research strategy 2. Governance aligned to strategy 1. Blood Cancer Signposting Service & collaboration 2. Public Awareness Campaign 2. Signposting & Awareness • 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 “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 phone online one person source healthcare professionals patients family & friends Digital signposting service Signposting service crowdsource platform review site community hub support scrapbook information aggregator online directory Collaboration • • • • • One source Clarity Reduce duplication Public trust and confidence Blood cancer sector - for patients - for money 3. Public Awareness campaign It’s all about September Blood cancer awareness month • New service • Biggest ever investment in blood cancer awareness How What Why The Year Ahead 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 1. 2. 3. 4. 5. • • • • Five Strategic Goals Optimisation of patient impact Step change in income Leveraging resource through partnership Improve reach, reputation and brand Strengthen the organisation Major Projects FY16: Response to PPN –Blood Cancer Support Service (BCSS), awareness Web development Patient Service Directorate Major funding Priorities Patient Services Research HR 1. Create Directorate 2. BCSS 3. Building relationships 4. Awareness 1. Recruitment of Director 2. PPN Alignment 3. Committee Governance Structure 1. Pay progression policy 2. recruitment, inductions and probation 3. Staff survey 4. Learning & Development support Finance & Office Services 1. Dynamic risk management 2. Improves processes 3. Space 4. Pro active support of budget holders Marketing Income 1. BCSS and web 2. Insight for impact and action 3. Public awareness 4. Innovation structure 1. Major funding team 2. Development of Individual Giving (response to knowing our audience) 3. Broaden sports 4. Improve relationships 5. Testing innovation Learning & Development – self awareness, influencing & communicating Business efficiency- managing budgets, forecasting etc 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. What next? • • • • Team plan and budget Individual objective setting aligned to plan Self awareness PDR Within this lifetime • • • • • • • • • • • • Early deaths largely eradicated Preventative medicine/lifestyle adopted- reduced progression from premalignancies 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 Our Belief Life is a gift. Use it wisely and live it fiercely. Thank you. Together we’ll beat blood cancer.