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 WHOLE PERSON Emotions Body AFFECTED BY CANCER 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 Living beyond cancer potentially with consequences Diagnosis Treatment Treatment ends Living with cancer either incurable or further diagnosis PBCC Pathway of Support Follow up services Pre Treatment Treatment Support Health & Wellbeing Living Well Course Clinic Clinic Clinic Follow on services
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
Living Well Study
Service Evaluation of Cancer’ Courses ‘Liv iving W Well w with ith t the I Impact o of C 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 Cancer’ Courses ‘Liv iving W Well w with ith t the I Impact o of C 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 WHOLE PERSON Emotions Body AFFECTED BY CANCER Spirit
The Penny Brohn Integrated Care Pathway of Services Patient Cancer Journey Living beyond cancer potentially with consequences Diagnosis Treatment Treatment ends Living with cancer either incurable or further diagnosis PBCC Pathway of Support Follow up services Pre Treatment Treatment Support Health & Wellbeing Living Well Course Clinic Clinic Clinic Follow on services
Understanding the experience Penny Brohn Whole Person Model Feeling stressed Difficult decisions to make Feeling out of control Worries about dying Sexual difficulties Social isolation Isolation/lack of communication Mind Difficulties asking People don’t know what to say for/getting support Pain Treatment side effects Change in appetite/taste/digestion Anger WHOLE Reduced physical Sadness/Grief activity PERSON Emotions Body Hopelessness Change in body image AFFECTED BY CANCER Fear Lack of sleep and energy Weight loss or gain through treatment Insecurity about job or home Stuck at home/ in hospital Reduced finances Spirit Reduced access to sunshine and places I love Problems with dependents Identity crisis Crisis of faith Worries Travel insurance What’s the about point? mortality
Understanding the experience – client/patient as expert Penny Brohn Health and Wellbeing Wheel Mind 6 4 2 Emotions Body Whole person 2 4 6 Spirit
Understanding the experience Penny Brohn Whole Person Model Mind WHOLE PERSON Emotions Body AFFECTED BY CANCER Spirit
Supporting resilience with physical interventions Conventional and Learning about healthy complementary eating and cooking symptom control Hospital-based Body cancer treatment Managing sleep problems Appropriate Breathing physical activity techniques for relaxation
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 Stress management techniques Knowledge about cancer and the immune system Support for more Mindfulness, relaxation & imagery training shared decision Connecting or reconnecting with making Group activities to loved ones build social networks – Relationship counselling clubs, choir, support Mind group Giving and receiving Conventional and complementary symptom control Learning about healthy eating and cooking Acknowledging emotions Appropriate physical activity Getting emotional support OPTIMAL Hospital-based Emotions Body RESILIENCE Restoring hopefulness cancer treatment Breathing techniques Finding acceptance for relaxation Letting go of fear Managing sleep problems Financial advice/support Access to green spaces Signposting to sources of Spirit practical support Sunshine Good work/life balance Stillness Connecting with joy Creativity Laughter and purpose
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