November 2009 Creating a movement for Neurological conditions – lessons from cancer.

November 2009

Creating a movement for

Neurological conditions –

lessons from cancer

Agenda

• About us• Similarities between cancer and neurological

conditions• Differences between the two disease areas• Lessons from cancer• Summary

About us

Why we’re here

What we do

Strategic policy consultancy

Health campaigning

Parliamentary engagement and scrutiny

Media relations

Stakeholder engagement

Issues and crisis management

Can neurological conditions learn any lessons from cancer?

Similarities

Similarities between cancer and neurological conditions

• Exceptionally common diseases• Stigma • Vibrant voluntary sector• Multitude of stakeholders • Some existence of a ‘postcode lottery’• Treatment pipelines• Research issues are very similar

Differences

Differences between cancer and neurological conditions

• Cancer is seen as a higher political priority• Multitude of ‘celebrity’ survivors or patients• Cancer ‘survivorship’ • Public funding gap• Cancer is the number one public fear• Clear national leadership• Up-to-date national strategy• Research spend

Lessons from cancer

Lesson 1 – it’s a journey….

1970s 1980s 1990s 2000s 2009

Political:The Calman Hine report on commissioning cancer services (1995)Introduction of a National Clinical Director for Cancer (1999)NHS Cancer Plan (2000)Establishment of the National Cancer Research Institute (2001)Cancer Reform Strategy (2007)

Social:Cancer was spoken about more openly on TV (1990s)Increase in cancer patient empowerment (2000s)Merger of CRC and ICRF (2002)

Lesson 2 – Hope and fear

More than 95% of men now survive testicular cancer

Over half of all people with cancer now survive beyond 5 years

Breast cancer death rates have fallen by a fifth in the last 10 years

Cancer death rates have

fallen by 10% over the last

10 years

Survival rates have improved for nearly all cancers

More than 7 out of 10

children are now

successfully treated

Lesson 3 – the promise of progress

Lesson 4 – overcoming stigma

Lesson 5 – the benefits of a robust evidence-base

• Authoritative voice• Based on facts – scale

of the problem; size of the prize

• Use evidence effectively

• Importance of independence

Lesson 6 – involving supporters

• Many patients and supporters want to help in non-financial ways

• Campaigning is empowering AND can lead to positive legislative change

• Helps break down stigma • Relatively inexpensive to do this• You don’t have to be a

‘campaigning’ charity to do this• Doesn’t have to be placard- waving or marches on

Westminster; it can be more subtle

Lesson 7 – The power of partnership

Working with other cancer

charities

Working with other healthcare

organisations

Working with charities outside

of health

Unclaimed Assets

Coalition

Three case studies on partnership working

In summary….

2) The importance of both hope and fear

4) The need to overcome stigma

3) The promise of progress

1) It doesn’t happen overnight

6) The benefits that can be gained from involving

campaigners

8) Use the cancer experience as a lever

7) Partnership working often reaps the biggest rewards

5) The benefits of a robustevidence-base

Thank you