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Summary of second Capital C Event in London

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.

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Summary of second Capital C Event in London

  1. 1. Summary of the 2nd Capital C Event January 2015
  2. 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. 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. 4. Flow Feedback from 2nd event Review of content/discussions Plans for 3rd event
  5. 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. 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. 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. 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. 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. 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. 11. Flow Feedback from 2nd event Summary of ideas/discussions Plans for 3rd event
  12. 12. Favourite places in London All about the green, outdoors natural spaces
  13. 13. Mapping the Long-Term Effects of Cancer
  14. 14. 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?
  15. 15. 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)
  16. 16. 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
  17. 17. 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
  18. 18. 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
  19. 19. 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
  20. 20. 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)
  21. 21. Flow Feedback from 2nd event Review of content/discussions Plans for third event
  22. 22. 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
  23. 23. Tues 10th Mar Seven Dials Club 4-8pm - focus on prototyping/designing solutions
  24. 24. 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?
  25. 25. Hope to see you there Sign-up here Thank you!