Summary of the first Capital C event in London December 2014

Flow 1. Outputs from the day 2. Participant feedback 3. What next?

Wheel of Life Experiences• Thinking about your own

experience of cancer…

• Top 3 things that work for you

• Top 3 things that don’t work for you

!!!!

!!

Spiritu

ality

Community Fun

Family & Friends

Environment

Partne

rs & Lo

ve

Money & Finance

Career/Work

Growth/Learning

Health/

Fitness

Wheel of Life - key themes• Spirituality, religion, belief

• Information sharing

• Communication with medical professionals

• Long-term effects of treatment

Wheel of Life - key themes• Effect on families/children

• Transportation

• Understaffing in the NHS

• Patients managing their own care

Open Space• 9 sessions

• Questions formed by participants

• Participants grouped around themes that interested them

• Open Space rules

• Law of Two Feet

Patient Power

• Doctors’ play a key role in enabling patients to build knowledge

• Patients should be enabled to research their conditions and understand the medicine they take

• Use Internet to research medication and the effects • Play an active role in monitoring their conditions &

understand what is healthy for them. • Patient power means taking responsibility for health

and making sure that they exercise/eat well

What can patients do to understand problems, treatments and cures, to know about medication and how it works? Patients understanding of their conditions and medication so that they can stay as well as possible. Value of exercise?

Family Support

• Hospitals don’t always think about a patient as part of a network/community

• The focus is on the medical journey of the patient but what about the journeys of the family?

• The emotional impacts on a patients network can have significant impact on their health and recovery

• We need to be able to help families navigate multiple systems etc • Invest in the emotional needs of a family upfront, help support

them and build confidence and capacity in dealing with the challenges

What support should a family get? How to support kids when parents have cancer? How can we think family and patients as allies in caring?

Relationships with Professionals

• Recognise that patients can be the teacher, use service user stories so that doctors understand what works well and what doesn’t

• More recognition of the mental health impacts, training courses, monitoring professionals to ensure that they are providing proper mental health support

• Patients should carry their own ‘passport’/record or pain diary; patients need to be able to access their own medical records.

How to encourage GPs to give more time to cancer patients and to provide advice and information? How can we make communication training important for professionals (e.g. med students)? How can patients act as advocates?

Information

• We need to be encouraged and directed to the correct places • Medical professionals need to provide us a list of resources/

research that do not have jargon • Need for collaboration between charities to provide consistent

advice and information • Support groups need to be included - both inside and outside

of hospitals • You’re given information if you ask for it but you don’t know

the information you don’t know

How do we share information about everything with everyone? How can we ensure that patients get the information that will empower them? How can people find support and learn how to look after themselves and their health?

Peer Support

• Online peer support groups • Legal advice: e.g. from retired judges/barristers/QCs • Benefit advice • Peer support to be provided within a framework that covers

emotional support, activities, well-being, buddying-befriending • Could we use retired health and social care professionals/

psychologists to run groups? • Trained facilitators to run groups • Retired consultants running groups • Provide good information from people with professional skills

Peer support for all age groups - how do we make that happen? Where to get proper, relevant information and peer support? How can support be improved for patients? Can we have evening support groups?

Resources

*No one attended this discussion but questions posed were:

• There may be less money but we have an abundance of skills and resources. How do we do more with more?

• How can we use London’s resources to work for cancer care?

• How do we manage resources?

• There is little cohesion • Side-effects need to be managed (e.g. through videos) • Therapies such as massage • Create one umbrella for cancer support services (website) • Regaining physical fitness is important • Someone to phone or contact • Links to American/European websites • Discharge pack • Buddy opportunities • Translations needed for different backgrounds

How can we support people are diagnosis and treatment ends? What’s available after treatment? Support after treatment for physical/mental rehabilitation. How many hospitals have lymphoedema services?

Post-treatment support

Men/Teenagers/BME/WorkersWhat would attract men to a support group? How can we encourage male patients to speak up and be more proactive regarding treatment and help? BME Communities need interpreters, also deaf communities have access needs.

For men: • Signposting from GPs surgeries • More than a leaflet - need to have introductions

Workers with Cancer • Courses for returning to work; convenient appointment times; support on evening/

weekends • Have support available in workplaces, through mobile units

BME • Use nurseries, cafes, health visitors • Use opticians, gyms, dentists • Use BME cancer awareness month in July • Need to go to potential patients through the pub or other areas like betting shop

Other Topics*No one attended this discussion but questions posed were:

• How can we do prevention and education with grassroots/children? Let’s start before it starts.

• Healthy food provided by the NHS with no preservatives, no additives, no chemicals.

• Other than conventional treatments, what is there? Who will monitor that route?

• Services/appointments in the evenings?

Capital C: What Next?

Focus on the ‘Art of the Possible’

• Recognise and share what is good and opportunities to replicate good practice; continuity during structural change; call it a task force/flash-mob/pop-ups?

• Consider whether it needs to be the same group or different people for different issues? • Have opt in/opt out opportunities depending on the interest in the issue - people should go off,

come back in, be flexible, have special areas of interest. • No formal meetings with a prescribed agenda • Have a network of ‘the interested’ • Link to people who are navigators • Input from charities to encourage the best use of the NHS • Lymphoedema services • Variation in what cancer patients are told about services and support for late effects • The London effect (if there is one)

What is the role of this group? How often when/where? How best to stay in touch? What topics/issues/challenges to cover? Other people/organisations to involve?

Flow 1. Outputs from the day 2. Participant feedback 3. What next?

Feedback from pilot event

•26 people affected by cancer attended

•22 answered the feedback form (so far)

•5 sent unprompted follow emails with thanks/positive comments

A good start…• Overall score 4.2 out of 5

• 95% thought the organisation of the day was Fabulous or Good

• 86% thought the food was Fabulous or Good

• 83% thought the venue was Fabulous or Good

With potential to grow

•100% happy to involved in the next event

•100% happy to be contacted by Macmillan about other opportunities

•100% would recommend the event or upcoming events to others

Overall very positive feedback“Inspirational and inspiring”

“Very good. A useful cross-section of people with a range of experiences and suggestions”

“Good, central location and good facilitation of groups. The wall drawing was a nice touch!”

“Brilliant organisation, and actually felt I was being listened to. You MUST keep up the momentum”

What was the best part of the day?

“Discussing and brainstorming how to improve cancer care in London”

“Meeting other cancer patients and exchanging ideas”

“The exchange of different ideas and experiences”

What could we do better?“Nothing. I like it the way you ran it!”

• Make objectives for the day and the project clearer to participants

• More basic food options and healthy snacks

• Have Macmillan/Swarm people identify themselves

• Make the relationship between Swarm and Macmillan clearer

Flow 1. Outputs from the day 2. Participant feedback 3. What next?

Next steps• 3 more events planned between January and March

• The goal is to continue to put the patient voice at the heart of shaping the Macmillan London Strategy

• Participants to vote on topics for next events (see over for the first set of options)

• Based on participant feedback, these events will go a bit deeper into a topic and look more at what can be done in London specifically

Potential focus areas (from group)Have a deeper

focus on solutions/ make it more

London focused

5 votes

Feedback/examination to

Macmillan on their services

2 votes

Make people more aware of services

2 votes

Patient empowerment,

power and control

2 votes

Develop patient stories to train staff

2 votes

Long-term effects of cancer treatment

Re-design services

1 vote 1 vote

If you are interested in taking part in future Capital Events, drop an e-mail to capitalc@swarm.gd

Thank you!