The last summary from a series of four Capital C pilot events in London hosted during November 2014 to April 2015. Capital C is an experimental project that is being backed by Macmillan Support, and hosted by Swarm designed to put the voices of Londoners at the heart of a new strategy being developed to improve cancer care for people across the city.

1. Macmillan London Strategy User Task Force Project
Review Session, 14 May 2015, 3:00 - 5:00pm

2. Overall project objectives
• Provide people affected by cancer in London with
a new model for participating in leading and
driving change within the framework of the
London Strategy.
• Put people affected by cancer at the centre of
decision-making about the future shape of holistic
cancer care in London by providing funding,
learning, development and access to decision-
makers/experts

3. Capital C design principles
1. The purpose of the task force has to be crystal clear - a demanding common task builds community.
2. Time is needed to build trust and participation should also be time bound.
3. The task force should reflect London’s diversity and bring them together around common cause
4. Community connectors are vital to the task force as they’re motivated and ‘reach’ into their networks
5. The experience needs to respect patient stories and take into account their needs and energy levels
6. Experience is everything: Need for attention to detail, to demonstrate care, to make it unique
7. Ongoing communication and feedback is needed. Action needs to be demonstrated.
8. Everyone is equal - need to create conditions that ensure all voices are welcomed and listened to
9. The task force will work best when it becomes a community with peer support and learning
10. Meet people where they’re at - on their terms, in ways that suit them, on things they care about

4. Capital C Events
Pilot Event
(Nov 2014)
Third
Event
(Mar 2015)
Wave 3
Second
Event
(Jan 2015)
Fourth
Event (April
2015)
Brought together a
diverse group of
people affected by
cancer &
organisations to
understand their
experiences
A focus on listening
and learning
First step towards co-
design of ‘task force’
Seeking insight into
management of long-
term effects identified
in pilot event
Understand where &
how people access
support/services
To begin to
understand what a
better future would
look like for
Londoners
Evaluation of
approach so far
Simulation event &
building support for
emerging strategy
internally and with
partners
Continuing to
develop/evolve the
Capital C group
To begin to
prototype the early
solutions developed
by the group
through events 1
and 2
To draw out further
possible connections
to relevant partners
(corporate, charity,
non-profit)
‘Close the loop’ on
ideas so far & get
more input on
opportunities and
challenges
Evolution & future
of Capital C
Develop a narrative
that shapes the
strategy

5. Pilot event: Insights into living with cancer in London

6. Event 2: Insights into London + long term life needs

7. Event 3: Prototype ideas on biggest areas of need

8. Event 4: Building ideas, the story and the future

9. Feedback from fourth event
• 19 people attended
• 2 attendees came from NHSE London
• 3 were service designers
• 10 answered the evaluation form
• 2 sent unprompted follow emails with thanks/
positive comments (including another poem!)

10. Positive feedback…
• Overall score 4.5 out of 5
• 100% thought the organisation was Fabulous or
Good
• 90% thought the venue was Fabulous or Good
• 70% thought the food was Fabulous or Good

11. Positive feedback
“Enthusiastic collaboration and the great ideas. I hope it all
happens”.
“Very interesting, really enjoyed the energy while also appreciating
it is dealing with difficult issues.”
“Really enjoyed it. Great to hear about the work that's already gone
into the project and [to] have the opportunity to contribute further.
Excited about the prospect of changing cancer care in London. ”
“I thought it excellent - it was a synthesis of some hard work with lots
of great ideas ”

12. What could we do better?
• Have a one-room venue with better acoustics
• Ensure that we keep in mind the lives of those
living with and not just beyond cancer
• Ensure that the level of diversity is maintained

13. Third Event: Themes to Challenges
1. Relationships
2. Mental wellbeing/coping with uncertainty & isolation
3. Physical well-being and health
4. Employment
5. Finances
6. Sense of identity
7 Challenges

14. Fourth event
Review & test
prototypes
developed in 3rd
event
Develop narrative Future of Capital C London Strategy
Take people back to
original impetus behind
ideas:
• Why is this important?
What needs to
change? What binds
all of these ideas
together?
Rapid exercise to
obtain ideas, dreams,
fears over the future
of the Capital C
Summarise ideas &
consider:
• What is the benefit?
• How would you access
this?
• What partners might
be needed?
• How could this work
for different people?

15. • Solution focused on development of a discount
card (a ‘key’ that would open doors in London)
• Link to transport, need to improve relationships
CHALLENGE 1
How might we help ease relationships with friends and family by providing access to London’s
transport and unique arts/cultural activities for days out?

16. Benefits
Helps to access social opportunities
Comprehensive (person with cancer, family & friends)
Regaining normality/independence/health gains of being
active
Build new networks through meet ups/support to get there
Keeping ordinary activities/interests going for everyone
Investing in relationships is critical
Precious/special memories for people with a bad prognosis
Key to unlocking finances which has a big impact
IDEA 1: CANCER CARE KEY - hosted by CAROL and SARIFA
How might we help ease relationships with friends and family by providing access to London’s
transport and unique arts/cultural activities for days out?
Potential partners
Carers UK
Ramblers
Breeze Network to encourage women cycling
Lots of small charities in London
Big name London celebrities
TfL
Taxi companies
Local council parking authorities
Leisure centres
CinemasFootball clubs
Gambling
Bingo halls
London Wildlife Trusts
London parks
Museums/galleries (including members’ rooms and cafes
where people might see an exhibit and then meet up)

17. Challenges
Would everyone need to travel together to get the discount? We need
the flexibility to reflect how we live now.
Proof/evidence of eligibility
Accessibility, especially for disabled people
Is the discount only applicable during treatment? May need it beyond,
such as when applying for jobs. How do we decide?
Getting needs of broader family/networks recognised and the
importance of quality time together
Rising numbers of people = rising numbers of friends/family =
increasing costs
Could stop people with cancer moving on from cancer by making illness
a permanent feature
Lots of people have other conditions – is this realistic just for people
with cancer?
Funding
How to get partners on board
Finding places that want more visitors (and want to build their business)
Might need more than a discount card for access (e.g. if someone cannot
read)
IDEA 1: CANCER CARE KEY - hosted by CAROL and SARIFA
How might we help ease relationships with friends and family by providing access to London’s
transport and unique arts/cultural activities for days out?
How to overcome them?
Finding partners who want to improve their reputations (e.g.
banks!) and also potentially beyond just cancer e.g. other conditions
Might need more than just discount and access
Find out what’s going on and how to get there by phone, not just
online (as this excludes some people)
Support to get to where you want to be (volunteer/buddy/peer
support/volunteer driver)
Discreet badge/sticker so it’s recognised but not too revealing
Promote the project (what cards etc look like, build awareness of
needs and the benefits)
Awareness-raising re the effects of cancer and its treatment (e.g.
fatigue/nausea)
Proof of benefits (need data re psychological benefits and
compelling stories about impact)
Cost challenge: Discount applied to PABC but time-limited (same as
over 65s discounts)
Patient and family/friends travel and do activities together

18. CHALLENGE 2
How could we tap into the vast population in the city to find a personalised buddy or doula-type mentor for
everyone directly affected by cancer in London?
• Took idea of match.com - applied to cancer
patients
• Individuals would create a profile that could be
matched based on common interests & problems
• Would enable searches based around needs/
specific criteria
• Other areas of interest could include wills, power
of attorney or issues related to life stage
• Need for safeguarding

19. IDEA 2: C-MATCH.COM hosted by GWEN
How could we tap into the vast population in the city to find a personalised buddy or doula-type mentor for
everyone directly affected by cancer in London?
Benefits
Community needs
Peer to peer/culture
Supportive cancer patients/carers/buddies
Potential partners
Peer support providers like Breast Cancer Care
Teenage Cancer Trust
Health and well-being events (NHS/Macmillan)
Marie Curie
Match.com
Telecom companies

20. IDEA 2: C-MATCH.COM hosted by GWEN
How could we tap into the vast population in the city to find a personalised buddy or doula-type mentor for
everyone directly affected by cancer in London?
Challenges
Safeguarding
Vulnerability
How do people know about this and how do we ensure that there
is no duplication of work and what’s already available?
Personal contact is important
Right/current information. How to update?
One to one? This is more dangerous and would need a
moderator
Timing of connection vs. crisis and awareness of what you can
have access to (there needs to be a quick connection made so
that people get in contact with the right people at the right time).
Not online – what does this mean? Is this a problem if you don’t
have the internet?
Is this not done already by Macmillan? Add on already to what
exists?
If this is only for London, what about UK-wide?
Language/background/age
How to overcome them?
Interview people to make sure they are genuine or
Macmillan registered
Peer group support
Collaboration with groups/partners across London to
overcome mistrust
Different levels of information/advice to be given to
different people (e.g. a survivor or family member may
need different things).

21. CHALLENGE 3
How could we make the information/services/groups in London available and accessible to everyone in a single, online
place?
• Based on idea that people often don’t
know where to look or what to trust online
• A full information resource, linked to
information in charities and the NHS
• Also linked to online places/spaces and
would be searchable based on postcode/
type of cancer etc.
• Offline ‘yellow pages’ or support to get
people set up and using the platform

22. IDEA 3: INFO RESOURCE hosted by SIMON and FATIMAH
How could we make the information/services/groups in London available and
accessible to everyone in a single, online place?
Benefits
One-stop in a trusted shop
Peer reviewed
It’s online and easy to access
Easy to keep up to date
Currently information sharing is random
Potential partners
Barclays
Technology companies like Apple/Google
Cancer/non-cancer charities
Macmillan – go back to the basics! It’s what they do and
they could do the quality control

23. IDEA 3: INFO RESOURCE hosted by SIMON and FATIMAH
How could we make the information/services/groups in London available and
accessible to everyone in a single, online place?
Challenges
Not everyone is online and some people do not want to go online
Variance in accessibility (e.g. language)
Maintaining the resource – might be costly/who does it/who owns it?
Raising awareness of organisations so it is used
How will it link to other cancer/non-cancer organisations?
People may be worried about personal details being used
Service providers may become overwhelmed with the amount of
people attending support groups
Do we need to do this for other long-term conditions?
Do I want Macmillan to do this? Who should do this?
Find a way to disseminate/raise awareness
Accessibility
Trustworthiness
Accountability
Print basket – there could be an issue with printing information as it
would be costly.
How to overcome them?
Could have a panel that oversees this for accountability
(e.g. at Macmillan)
Information-based; nothing else
Evidence-based
Working with RNIB/other expert organisations to help with
user-experience
Can access via library/cancer support centres/Maggie’s
Centre/Cherry Lodge
Phone bank – someone to call/help line
Re-purpose commercial premises – go to Barclays to train
people to go online
We can share the learning/information with other charities
Work with other charities

24. CHALLENGE 4
How might we help people who have had cancer in London re-train, building their skills and confidence to get back to work
with the support of larger, London-based organisations?
• Link to employers and create a ‘job tasters’
programme (fully paid?)
• Cancer champions could represent their
organisations/companies and talk about their own
experiences as well as opportunities
• Assistance to build your CV and focus on
capabilities not just qualifications
• Support with retraining or returning to work
• Need to rebuild confidence as well as career

25. IDEA 4: BACK TO WORK in LONDON hosted by MATT
How might we help people who have had cancer in London re-train, building their skills and confidence to get back to
work with the support of larger, London-based organisations?
Benefits
Have a Cancer “Tick” for employers who support their team
(e.g. Stonewall Employers)
Benefit: Job tasters mean that PABC doe not have to take a
risk on what the job description means
Champions could raise awareness of employers about the
benefits of employing people with a cancer experience
Help people and their families get back to normal
Feeling to contributing to something, especially for parents
Enabling you to get rid of your cancer label
Knowing you’re not alone
Opportunity to change goals/re-evaluate life goals
Who is this for? People who can’t/don’t want to go back to
work
For companies the benefits may be PR, improved relationships
and an opportunity to broaden roles/perspectives
Potential partners
Temping agencies
DWP – benefits
Politicians
Small business federation
Entrepreneurs
Big London employers
TfL
Public service
Local councils
Employment agencies
CBI (London branch)
Local chambers of commerce
Schools that teach counselling student placements? Life
coaching?
Companies with existing intern schemes
Existing Macmillan partnerships

26. IDEA 4: BACK TO WORK in LONDON hosted by MATT
How might we help people who have had cancer in London re-train, building their skills and confidence to get back to
work with the support of larger, London-based organisations?
Challenges
It’s not easy to figure out what your options are; may need
additional support & more than just career counselling
Companies might lose interest without support and quality might
decline
If people have a good experience they may find it hard to drop ou
Physical impact and chemo brain can make work more challenging
How to engage partner/employers? Need to work with HR/CSR/PR
Assumptions from employers, family and friends and people with
cancer want to go back to work
Need to offer a range of options/different roles to suit different
interests/goals/confidence levels/ability
Cancer Nurse Specialists can have a paternalistic attitude
Physical impact of treatment and recovery: decreased confidence
and energy for applying for jobs
Problems with the benefit system to cover transition period while
figuring out what to do next
How do we overcome them?
Counselling to consider broader issues than employment
(e.g. self-identity) this could be an important first step but
don’t go for first option
Support function and continuous improvement
Mock interviews and coaching to increase confidence
(partner with HR departments or CIPD)
A database and matching service across the sectors
Education/awareness raising for benefits agencies
Awareness campaign to change perceptions
Some people will find it difficult to recognise skills and
identify goals; need skilled coaches to help identify
transferable skills
Financial support for supplements; guidance to buy the
right supplements

27. CHALLENGE 5
How could we best provide improved information for employers/employees so that they better understand the needs and the
rights of people living with cancer in the workplace?
• ‘Advocates’ who could be trained online, focused
on Equalities Act
• Online toolkit for employers & employees
• Recognition of the need to have employees,
employers & advocates on the same side by
focusing on getting people back to work

28. IDEA 5: EMPLOYER/EMPLOYEE INFO hosted by MARYSIA & CLARE
How could we best provide improved information for employers/employees so that they better understand the needs
and the rights of people living with cancer in the workplace?
Benefits
Access
Sustained return to work
Empowerment and knowledge of rights
Improved ethos in companies
Good publicity for the company
Financial security
Potential partners
CBI (Confederation of British Industry?)
Law schools and the Law Society
Other health advocates
Macmillan Advocates/Ambassadors
Media partners
Councils and Chambers of Commerce
Corporate partners
Schemes such as Investors in People
CIPD
MPs
Citizens’ Advice Bureau

29. IDEA 5: EMPLOYER/EMPLOYEE INFO hosted by MARYSIA & CLARE
How could we best provide improved information for employers/employees so that they better understand the needs
and the rights of people living with cancer in the workplace?
Challenges
Awareness (on the part of employers and employees)
Engaging employers
On-line training courses are boring!
Fear by employers
Fears and fatigue (on the part of employees affected by
cancer)
How to overcome them?
Awareness-raising
Tick-mark for cancer-friendly employers
“Return to work” buddies
Offer models of good practice
Link with whole cancer strategies
Companies with healthy cultures could mentor other
companies
An employee index which ranks top/bottom employers

30. CHALLENGE 6
How could we be better able to use London’s parks and green spaces to provide positive health and wellbeing benefits to
people affected by cancer?
• No one chose this challenge
• BUT green spaces & parks were mentioned
repeatedly in previous sessions
• Worth keeping in mind…..

31. CHALLENGE 7
How can we collaborate across cancer, health, social care, corporate & non-profit sectors to provide ways to tackle key issues
affecting people like sleep and depression?
• ‘Same place, same problem’ - interactive map
• Would allow for searches based on the side effect/
problem, rather than the cancer type
• Services would be shown on a map & rated by users

32. IDEA 7: INTERACTIVE MAP hosted by KARA
How can we collaborate across cancer, health, social care, corporate & non-profit sectors to provide ways to tackle key
issues affecting people like sleep and depression?
Benefits
Seeing the person as whole
Very supportive
Community-built resource
Shows the whole picture
Local – on your doorstep
Links with charities across conditions
Links to primary care
Identifies missing areas of support
By the people, for the people
Meets everyone’s needs
Potential partners
GPs
Community forums
Other charities
Virgin (Richard Branson) – possible donor?
Aliss.org – local information system
Health clubs
Charity collaboration around quality standards for each
area.

33. IDEA 7: INTERACTIVE MAP hosted by KARA
How can we collaborate across cancer, health, social care, corporate & non-profit sectors to provide ways to tackle key
issues affecting people like sleep and depression?
Challenges
How to make everyone work together?
How to deal with very vulnerable people?
Cultural barriers
Literacy barriers
Language barriers
IT availability/literacy
People accepting help and support
How to overcome them?
Case studies
Photos and pictures
Buddy service within it – peer group/volunteers
Working with people and communities
Working with community groups
Facilitate/enable the patient voice
Ensure easy access – e.g. through information centres
Develop a quality standard for services (e.g. Macmillan
star rating system)

34. The group collaboration - really felt to have questioned and challenged our
beliefs about what would work.
Being given the space to explore ideas and think outside of the box.
I really feel that our contributions are valued, rather than just paying lip
service to canvassing patient experience. I also like the fun atmosphere
around what could be a serious subject.
The exchange of experiences and stories to create a new opportunity!
What has been unique about the
Capital C work?

35. Emerging themes
• Personalisation has come through really strongly throughout
• Need to go beyond cancer type and look at the broader impact of cancer (e.g. insomnia,
depression, isolation)
• Quantity of available information can be overwhelming and makes discerning quality difficult
• Knowledge of/from community is crucial & highly valued
• Transportation & employment are key issues - but London could offer unique solutions
• Many solutions exist in some form already, but they don’t go deep enough or wide enough
• Digital solutions are increasingly used across all age groups

36. Where next?
Input from fourth event
What might the future look like if
the Capital C project/London
strategy was in place?
“Care would be more
personalised”
“Today, in London, cancer is just
a disease”
“Cancer care in London is for
YOU”
What should happen to the
Capital C people/project?
“This comes to nothing unless you
take the people with you”
“It would be useful to identify the
long and short term goals for the
project. What can we do quickly
and easily to make a
difference?”
“None of this is unachievable
and some of it doesn’t require
many resources”.
Other ideas that came out of our
closing discussions…
Link to NHS 5-year London strategy
How could we ensure that the
thousands of other Londoners living
with cancer have their say? If we could
have a “Big Conversation” it might
make the Capital C project more
forceful politically.
More clarity on what activities/
programmes might come about through
the strategy will give Macmillan more
power in developing the relevant
corporate partnerships

37. 36% interested in participating in further development of the prototype solutions with
Macmillan staff
25%would like to review or contribute to the writing of the London strategy
22%happy to provide a case study for inclusion in the London strategy
5%would like to engage in informal get togethers
12%happy to contribute to any/all areas
What do Capital C participants want to
do in the future?

38. 58% Capital C participants should continue to be involved as the ideas created so far are
further developed and implemented
23%establish Capital C as a social enterprise with the goal of bringing together different
people/groups across London to improve patient experience
15% set-up local Capital C groups that bring together patients, support groups, services and
information providers e.g. in South, East , West, North London
4% host events focused on identifying improvements for different groups of people (e.g. with
different needs/cancer types)
What direction should Capital C take?

39. THANK YOU!