Patient and Public Involvement in Programme Development and Research at Maggies Mandy McMahan PhD (Clinical Psychology) Maggies Dundee & Fife

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Presentation transcript:

Patient and Public Involvement in Programme Development and Research at Maggies Mandy McMahan PhD (Clinical Psychology) Maggies Dundee & Fife

Maggies: A foundation of patient & public involvement Maggie Keswick Jencks & Charles Jencks Above all, what matters is not to lose the joy of living in the fear of dying

Maggies Programme of Support

Quality assurance & Research Programme development and evaluation Getting Started 3-hour group workshop for patients & carers before or at beginning stages of treatment Education & discussion about managing side effects, keeping physically active, nutrition and well-being Where Now? 6-week post treatment programme Personalised exercise & nutrition, stress management & well-being Patient & Carer perceptions of barriers to participating in Maggies services

Programme Development Getting Started & Where Now? Partnership Wellness Community & Lance Armstrong Foundation Pilot Frankly Speaking & Cancer Transitions Evaluation & Feedback Standard measures + participant feedback and comments Integration & Development

Research: Identifying barriers to services & participation Follow-up interviews & discussions to expand upon experiences and explore solutions to improving access & overcoming barriers Questionnaire distribution to wider cancer patient & carer community Tayside visitor feedback & suggestions for questionnaires Identifying previous literature & tools exploring barriers to psychosocial services Kitchen table conversations – If only I had known about Maggies earlier... I didnt know it was for me...

Research: Identifying barriers to services & participation Follow-up interviews & discussions to expand upon experiences and explore solutions to improving access & overcoming barriers Questionnaire distribution to wider cancer patient & carer community Tayside visitor feedback & suggestions for questionnaires Identifying previous literature & tools exploring barriers to psychosocial services Kitchen table conversations – If only I had known about Maggies earlier... I didnt know it was for me...

Research: Identifying barriers Follow-up interviews & discussions to expand upon experiences and explore solutions to improving access & overcoming barriers Questionnaire distribution to wider cancer patient & carer community Tayside visitor feedback & suggestions for questionnaires Identifying previous literature & tools exploring barriers to psychosocial services Kitchen table conversations – If only I had known about Maggies earlier... I didnt know it was for me...

Research: Identifying barriers to services & participation Follow-up interviews & discussions to expand upon experiences and explore solutions to improving access & overcoming barriers Questionnaire distribution to wider cancer patient & carer community Tayside visitor feedback & suggestions for questionnaires Identifying previous literature & tools exploring barriers to psychosocial services Kitchen table conversations – If only I had known about Maggies earlier... I didnt know it was for me...

Research: Identifying barriers Follow-up interviews & discussions to expand upon experiences and explore solutions to improving access & overcoming barriers Questionnaire distribution to wider cancer patient & carer community Tayside visitor feedback & suggestions for questionnaires Identifying previous literature & tools exploring barriers to psychosocial services Kitchen table conversations – If only I had known about Maggies earlier... I didnt know it was for me...

Research: Identifying barriers Follow-up interviews & discussions to expand upon experiences and explore solutions to improving access & overcoming barriers Questionnaire distribution to wider cancer patient & carer community Tayside visitor feedback & suggestions for questionnaires Identifying previous literature & tools exploring barriers to psychosocial services Kitchen table conversations – If only I had known about Maggies earlier... I didnt know it was for me...