The Routledge Report and beyond: Macmillan and the patient perspective

1
The Routledge Report and beyond Macmillan and
the patient perspective

• Gwenllian Griffiths
• External Affairs Manager, Wales
• Macmillan Cancer Support
• 1 October 2009

2
(No Transcript)
3
Cancer in Wales

• 17,778 people diagnosed with cancer every year
• 8,515 die of cancer every year
• Cancer remains the second biggest killer in Wales
• 108,000 people living with or after cancer
• By 2012, more than 4 of the Welsh population
  will be living with or after cancer in Wales

4
Macmillan and access to treatments

• We want people affected by cancer to have
  access to effective drugs treatments
• We campaign on issues around NICE reform
• We submit responses to NICE technology appraisals
  for new drugs treatments
• We appealed the recent decision by NICE to
  reject treatments for kidney cancer

5
Exceptional funding processes in Wales

• Our research found that
• 15 different names exist for the EF process
• A third of LHBs in Wales actively promote the
  process to patients
• Six per cent of LHBs have an oncologist in their
  expert panel
• Wide variation in the factors that LHBs take
  into account when making decisions
• Conclusion There is a wide variation in
  exceptional funding processes across Wales

6
Macmillans recommendations

• EF process must be strengthened
• WAG must issue national guidance outlining a
  framework for the process
• Guidance to include
• composition of panel
• the length of time the process takes
• decision making factors
• information and support services
• Patients must be informed about rational of
  decision making

7
Routledge Report recommendation 3

• To ensure the robust, consistent, transparent,
  inclusive, and timely consideration of requests
  for exceptional funding of medicines, a national
  guideline for the structures needed and the
  process employed in Wales should be developed
  within six months. Data should be collected on
  the decisions made to inform future policy
  decisions.

8
Routledge Report recommendation 7

• The additional training needs of health
  professionals to help them effectively
  communicate with patients about difficult
  decisions around risks/burdens and benefits of
  different proposed treatments should be assessed,
  and an appropriate programme related to
  end-of-life care should be developed.

9
Summary

• Inequity as a response of exceptional funding
  processes in Wales remains a major issue
• Improving the communication skills of health
  professionals within Oncology must be prioritised

10
(No Transcript)