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

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

Capital C design principles1. 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

Capital C EventsPilot 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

Pilot event: Insights into living with cancer in London

Event 2: Insights into London + long term life needs

Event 3: Prototype ideas on biggest areas of need

Event 4: Building ideas, the story and the future

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!)

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

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 ”

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

Third Event: Themes to Challenges1. Relationships 2. Mental wellbeing/coping with uncertainty & isolation 3. Physical well-being and health 4. Employment 5. Finances 6. Sense of identity

7 Challenges

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?

• 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?

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)

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

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

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

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).

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

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

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

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

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

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

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

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

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

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…..

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

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.

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)

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?

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

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

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?

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?

THANK YOU!