Michael Connors Director of Services

34 years helping people to live well with the impact of cancer

Understanding the patient experience Penny Brohn Whole Person Model Mind Emotions WHOLE PERSON AFFECTED BY CANCER Body Spirit

26 bedroom centre Residential courses in living well with cancer Day clinic for personalised specialist services All our services are free of charge

National Living Well Services Living Well Courses Prostate Cancer UK Living Well Courses Cancer Partners UK Health & Wellbeing Clinics Bowel Cancer UK Living Well Services Prostate Cancer UK Living Well Pathway Services (Health & Wellbeing Clinics and Living Well Courses) Telephone Support National Centre

Taking Action to Improve Outcomes (March 2013) What is the report designed to do? informs the direction of survivorship work in England to 2015 support commissioners, providers and others to take the actions necessary to drive improved survivorship outcomes set out what has been learnt about survivorship, including people s needs, their experience of care, and the impact cancer and treatment has upon their lives describe interventions that have been tested, and are ready to spread across England to improve survivors outcomes (http://www.ncsi.org.uk/)

The Penny Brohn Integrated Care Pathway of Services Patient Cancer Journey Diagnosis Treatment Treatment ends Living beyond cancer potentially with consequences Living with cancer either incurable or further diagnosis PBCC Pathway of Support Follow up services Pre Treatment Clinic Treatment Support Clinic Health & Wellbeing Clinic Living Well Course Follow on services

Living Well Study

Service Evaluation of Living Well with the Impact of Cancer Courses In collaboration with the University of Westminster The immediate Impact: Concerns were immediately addressed and statistically and clinically significant changes recorded Wellbeing significantly improved Health Related Quality of Life immediately improved Statistically significant improvements; total score Statistically significant improvements; emotional, functional and spiritual wellbeing.

Service Evaluation of Living Well with the Impact of Cancer Courses In collaboration with the University of Westminster Long term impact: Concerns and Health Related Quality of Life continue to improve Improvements in diet at 6 week follow up Barriers to sustaining change identified Improved confidence to communicate with medical professionals Clients who returned to PBCC for more support had bigger improvements in their Health Related Quality of Life at the 12 month follow up

The Penny Brohn Whole Person Approach

What do we mean by a Whole Person Health? WHO definition of health a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. (WHO Constitution 1948)

What do we mean by a Whole Person Health? BMJ re-definition of health the ability to adapt and to self manage = the resilience or capacity to cope and maintain and restore one s integrity, equilibrium, and sense of wellbeing (Huber et al BMJ 2011)

Understanding the experience Penny Brohn Whole Person Model Mind Emotions WHOLE PERSON AFFECTED BY CANCER Body Spirit

Understanding the experience Penny Brohn Whole Person Model Feeling stressed Worries about dying Difficult decisions to make Feeling out of control Anger Sadness/Grief Hopelessness Sexual difficulties Isolation/lack of communication Difficulties asking for/getting support Fear Emotions Mind WHOLE PERSON AFFECTED BY CANCER Body Social isolation People don t know what to say Pain Treatment side effects Change in appetite/taste/digestion Reduced physical activity Change in body image Lack of sleep and energy Stuck at home/ in hospital Reduced access to sunshine and places I love Identity crisis Worries about mortality Spirit What s the point? Crisis of faith Weight loss or gain through treatment Insecurity about job or home Reduced finances Problems with dependents Travel insurance

Understanding the experience client/patient as expert Penny Brohn Health and Wellbeing Wheel Mind 6 4 2 Emotions Whole person Body 2 4 6 Spirit

Understanding the experience Penny Brohn Whole Person Model Mind Emotions WHOLE PERSON AFFECTED BY CANCER Body Spirit

Supporting resilience with physical interventions Conventional and complementary symptom control Learning about healthy eating and cooking Managing sleep problems Breathing techniques for relaxation Body Hospital-based cancer treatment Appropriate physical activity

Penny Brohn Healthy Eating Plate Anti-inflammatory, Unprocessed, Low GI, Based on WCRF/AICR Guidelines

instead of

Supporting resilience with activity Men with cancer who exercise regularly have HALF the chance of dying in the next 20yrs Regular physical activity can reduce many of the side effects of cancer and its treatment e.g. fatigue bone thinning weight gain hot flushes and erectile dysfunction anxiety and depression

Managing your Relaxation and Stress Responses Getting the balance right can support your immune system and health

Lifting your Spirits

Penny Brohn Whole Person Model A menu of possible interventions to build resilience Connecting or reconnecting with loved ones Relationship counselling Giving and receiving Acknowledging emotions Getting emotional support Restoring hopefulness Finding acceptance Letting go of fear Support for more shared decision making Emotions Stress management techniques Knowledge about cancer and the immune system Mind OPTIMAL RESILIENCE Mindfulness, relaxation & imagery training Body Group activities to build social networks clubs, choir, support group Conventional and complementary symptom control Learning about healthy eating and cooking Appropriate physical activity Hospital-based cancer treatment Breathing techniques for relaxation Managing sleep problems Financial advice/support Access to green spaces Sunshine Stillness Spirit Signposting to sources of practical support Good work/life balance Creativity Laughter Connecting with joy and purpose

THANK YOU FOR LISTENING