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

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Macmillan Brain Tumour and Central Nervous System Service Improvement Programme

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?

Patient Story Inequity of service provision and access

Inequity of service provision and access

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

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

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

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

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

Patient Film

‘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

Helen Sowden helen.sowden1@nhs.net Lucie Osborne Lucie.osborne@nhs.net Lorraine McDonald LMcDonald@macmillan.org.uk