1. Rare and Complex Cancer: A unique journey
Macmillan Cancer Support in partnership with…
Helen Sowden Programme Manager
Lucie Osborne Project Manager
Lorraine McDonald Macmillan Partnership Manager

2. WiFi name: WifiLoveMCR Password: internet Join the conversation on Twitter using #DrivingChange

3. Macmillan Brain Tumour and Central Nervous System Service Improvement Programme

4. Group Questions 1. What is key to who you are?
2. If I took that away tomorrow, what would that feel like?
3. Think again, what would that be like for your partner, friends, family?

5. Patient Story
Inequity of service provision and access

6. Inequity of service provision and access

8. Neuro-oncology Care Co-ordinator Post
Anticipated outcomes
Improved /increased specialist capacity to focus on patients with complex care needs and service improvement activity
Improved staff experience and reduced stress for CNS’s
Improved response time to patient enquiries
Improved patient experience – patients feel more supported & needs met more effectively
Most patients encountered one or two difficulties when contacting the hospital
30% of patients received information related to the impact of the diagnosis and effect on family
OUTCOMES TO BE SHARED

9. Most patients encountered one or two difficulties when contacting the hospital
30% of patients received information related to the impact of the diagnosis and effect on family
OUTCOMES TO BE SHARED

10. Most patients encountered one or two difficulties when contacting the hospital
30% of patients received information related to the impact of the diagnosis and effect on family
OUTCOMES TO BE SHARED

11. Most patients encountered one or two difficulties when contacting the hospital
30% of patients received information related to the impact of the diagnosis and effect on family
OUTCOMES TO BE SHARED

12. Most patients encountered one or two difficulties when contacting the hospital
30% of patients received information related to the impact of the diagnosis and effect on family
OUTCOMES TO BE SHARED

13. Patient Film

14. ‘People are listening to patient’s voices like myself, hopefully in the future it will be a lighter journey, because it’s a dark, dark hole that you are in’
Ali
Most patients encountered one or two difficulties when contacting the hospital
30% of patients received information related to the impact of the diagnosis and effect on family
OUTCOMES TO BE SHARED

15. Helen Sowden helen.sowden1@nhs.net Lucie Osborne Lucie.osborne@nhs.net
Lorraine McDonald