Summary from the second Capital C event held at Impact Hub Kings Cross on Saturday 24th January 2015. Capital C is a collaboration to improve cancer care for the people of London hosted by Macmillan Cancer Support and Swarm. The goal for the group is to put patient's voice at the heart of a long-term strategy to improve patient experience in London.

1. Summary of the 2nd Capital C Event
January 2015

2. Overall project objectives
• Give people affected by cancer in the capital a
new way of participating in leading and driving
change through the development of a 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. January event objectives
• To bring (back) together a diverse group of
people PABC and organisations to gain insight into
the management of the long-term effects of cancer
and cancer treatment in London
• To understand where and how people access
support/services
• To begin to understand what an ideal situation
would look like for Londoners
3

4. Flow
Feedback from 2nd event
Review of content/discussions
Plans for 3rd event

5. Feedback from event
• 27 people attended (12 also attended pilot)
• 24 people affected by cancer
• 3 others (CEO& Patient Experience Manager, London Cancer;
Research Manager from Leukaemia & Lymphoma Research)
• 24 answered the evaluation form
• 3 sent unprompted follow emails with thanks/positive
comments (including two poems - thank you!)

6. Positive feedback…
• Overall score 4.4 out of 5
• 96% thought the organisation of the day was
Fabulous or Good
• 91% thought the food was Fabulous or Good
• 91% thought the venue was Fabulous or Good

7. Further potential to grow
• 96% happy to involved in the next event (1
person said no - mainly related to location/venue)
• 100% happy to be contacted by Macmillan
about other opportunities
• 100% would recommend the event or upcoming
events to others

8. Overall a very positive group
“Enjoyed it immensely and hope input will be worthwhile”
“Very positive and good to see involvement of health professionals and
others (again) with informative and diverse experiences of living through a
diagnosis of cancer.”
“I thought it was brilliant, great to meet other people involved, and lots of
energy ideas and laughter throughout the day”
“[T]he fact we were asked to come up with ideas or solutions that would help
was the best part of the day for me. It can be easy to focus on things that
are lacking - to be encouraged to think about things that would help was a
way of turning that round. ”

9. What was the best part of the day?
“Working in teams to try to find solutions based on
our experiences.”
“Meeting people and proposing some changes”
“Sharing experiences of London and realising that
London is better than one could think!”
“Afternoon workshop to consider something specific
for London”

10. What could we do better?
50% said “Nothing”.
• More focus on concrete solutions
• More emphasis on learning and change rather than
sharing stories
• Maintain level of diversity (PwD/BME) from first
event
• Acoustics in the venue - quite hard to hear at times

11. Flow
Feedback from 2nd event
Summary of ideas/discussions
Plans for 3rd event

13. Favourite places in London
All about the green, outdoors natural spaces

14. Mapping the Long-Term Effects of Cancer

15. Six themes were identified
1. Relationships
2. Mental wellbeing/coping with uncertainty & isolation
3. Physical wellbeing and health
4. Employment
5. Finances
6. Sense of identity
1. How does London help you to manage this?
2. What would an ideal situation look like?

16. Mental Wellbeing
What works?
• Open spaces, history, culture of London
• # of people means there are others with the same (but diverse) needs
• Large # of support specialists
• Big cancer charities in London (but lack of cooperation between them)
What is the ideal?
• Better access to therapy and support groups (time, location, Skype, etc.)
• Networking for patients/medical staff to have discussions in a different space
• Support for carers/family (in person, virtually)
• Trained ethnic minority advocates
• Partnerships with gym chains
• Better signposting to courses (eg mindfulness, complementary therapies)

17. Physical Wellbeing
What works?
• Green spaces
• Gourmet food outlets
• Sports/sports teams
• Cancer centres (Maggie’s, the Haven, hospital centres)
• Other experiences like hydrotherapy, gyms, kayaking
• Allotments, city farms, London Wildlife Trust
What is the ideal?
• Kite-marking of restaurants/food outlets
• Cancer buddy or doula
• Information mapping/collaboration between charities (App?)
• Cancer-specific ‘freedom pass’
• A&E priority

18. Employment
What works?
• London’s scale (e.g. Sunday support groups)
• Availability of resources & corporate
partners
• Education/training resources available
What is the ideal?
• Education/training discounts
• Corporate partners assisting with return to
work / coaching
• Workshops about employment rights
• A London “Cancer Card” - discount on
commuting/other

19. Finances
What works?
• No. of charities in London
• London’s scale
• Entrepreneurship
• Public transport
What is the ideal?
• Utilisation of time banks - trading skills
• Use of technology to work differently/more
flexibly
• Apps on financial planning/mgmt
• Funding to social enterprises allowing people
to use their cancer experience

20. Sense of Identity
What works?
• Diversity in London means you can always find
someone with who you share background/illness/
experience
• Vast array of voluntary opportunities and new
opportunities for work
What is the ideal?
• Central database that holds all info on support
• Support that represents the diversity of the need
• Advisors who understand both the short and long term
effects on working and the roles previously played

21. Relationships
What works?
• London’s scale and diversity
• Ability to find experts
What is the ideal?
• Family days out in the city
• Sharing of knowledge
• Use of apps to expand relationships
• Holistic therapies for difficulties
such as sleep (eg Sleep Clubs)

22. Flow
Feedback from 2nd event
Review of content/discussions
Plans for third event

23. Next event plans
• Shift from listening and learning
• To prototyping and developing solutions
• Respond to everyone’s feedback
• Invite new people in (with more focus on creating
tangible solutions)
• Continue to capture London specific insights and
maintain diversity of participants

24. Tues 10th Mar Seven Dials Club
4-8pm - focus on prototyping/designing solutions

25. What opportunities should we take forward to develop further?
A starter for 10, to be developed with the Capital C community ahead of next event
How might we help ease
relationships with friends
and families by providing
access to London’s transport
and unique arts/cultural
activities for family days
out?
How could we tap into the
vast population in the city to
find a personalised buddy
or doula type mentor for
everyone being directly
affected by cancer in
London?
How could we make the
information/services/
groups/advice available in
London accessible to
everyone in one single
online place?
How might we help people
who’ve had cancer in
London re-train, building
their skills and confidence to
get back to work with the
support of larger London
based organisations?
How could we best provide
improved information for
employers/employees so
they better understand the
needs and rights of cancer
patients in the workplace?
How might we be able to
better use London’s outdoor
spaces, parks and green
spaces to provide positive
health and wellbeing
benefits to people affected
by cancer?
How can we collaborate
across cancer, health, care,
corporate & not-for-profit
sectors to provide ways to
tackle key issues affecting
people like sleep and
depression?

26. Hope to see you there
Sign-up here
Thank you!