Transcript A dedicated nurse for information on all aspects of

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
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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.
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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.
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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?
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Team plan and budget
Individual objective setting aligned to plan
Self awareness
PDR
Within this lifetime
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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.