The story of the year ahead. Today The past The present The year ahead and beyond.

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 investedin 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. 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

What we learned from PPN

Existing data

Primary patient data

Research strategy

Patient experience

Prioritisation of patient need& Research strategy

Our 24 key issues for blood cancer patients



1. Myeloma2. DLBC Lymphoma3. AML4. MDS5. CLL

The biggest killers- lives lost at 5 years

The biggest killers- lives lost at 5 years

69% of

lives lost at

5 years

48% of

annual diagnosis

Early deaths

50% of deaths occur in first 3 months

AML

Also Diffuse large B cell lymphoma

DLBCL

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


Research strategy

Existing dataResearch strategy 1. Biggest killers

2. Early deaths3. Pre-malignant MGUS & MDS

Prioritisation of patient need& Patient Experience

Our 24 key issues for blood cancer patients



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

“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

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

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

Terms used to describe conditions- Lymphoma


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

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


Terms used to describe conditions- Myeloma

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

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

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


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

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


General Public prompted awareness : Cancer/Blood Cancer

Base: 1,725 - LLR Patient Need survey

Delete Blood Cancer

Myeloma UK

Lymphoma Association

Leukaemia Care


Children with Cancer UK

CLIC Sargent

Teenage Cancer Trust

Anthony Nolan


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

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”

“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

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)


Patient experience


Patient experience

1. Public Awareness2. Blood cancers are different3. Perceived lack of provision /

one authority

The year ahead and beyond

How

What

Why

Strategic Response to PPN Evidence


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

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

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. Myeloma2. AML3. DLBC Lymphoma4. MDS5. CLL

Bringing patient benefit & income

generation closer together

The year ahead

Strategic Response to PPN Evidence


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

• 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

“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

one personsource

phone

healthcareprofessionals

patients

family & friends

online

Digital signposting service

online directory

information aggregator

review site

community hub

crowdsourceplatform

support scrapbook

Signposting service

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 SeptemberBlood cancer awareness month

• New service• Biggest ever investment in blood cancer awareness

How

What

Why

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

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

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 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

Our Belief

Life is a gift.

Use it wisely

and live it fiercely.

Thank you.

Together we’ll beat blood

cancer.

The story of the year ahead. Today The past The present The year ahead and beyond.

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