Living Well With and Beyond Cancer 6 th National Conference From passive to proactive: the pathway to health activation

Transcription

1 Living Well With and Beyond Cancer 6 th National Conference From passive to proactive: the pathway to health activation

2 Laura Kerby CEO

3 Michael Connors Director of Services

4 35 years Activating Health and Wellbeing

5 Activating Health Penny Brohn Whole Person Model Mind Emotions WHOLE PERSON AFFECTED BY CANCER Body Spirit

6 Activating Health National Cancer Survivorship Initiative...current follow-up arrangements do not address the full range of physical, psychological, social, spiritual, financial and information needs that cancer survivors may have following their treatment.

7

8 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

9 National Living Well Services Reaching out to support 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) Living Well Follow Up Days Introduction to Whole Person Approach and Drop-In Sessions Telephone Support National Centre

10 Mind Emotions OPTIMAL RESILIENCE Body Spirit

11 Activation. Knowledge, skills and confidence to manage one s own health and healthcare Alf Collins FRCA FRCP FRCGP Clinical Associate in Person Centred Care, The Health Foundation Visiting Professor of Person Centred Care, Coventry University Penny Brohn November 17 th 2015

12 The Passive Patient Healthcare can be profoundly disempowering But most patients want to be treated as active participants as co-producers of health. With thanks to Angela Coulter

13 Co-producing health Shared decision making Working in partnership Care planning Supporting self management

14 Doctors and Patients Priorities Top goals and concerns in breast cancer decisions Keep breast Live as long as possible Look natural without clothes 0 Avoid using prosthesis Doctors Patients Sepucha et al. (2008). Pt Education and Counseling. 73:504-10

15 Day to day decision making: self management Hours with NHS / social care professional = 5-10 in a year Self management = in a year

16 Patients Goals may be Different from Clinicians Goals To better manage my pain relief so I don t wake up at night To stay in my own home as long as possible To stop taking anti-depressants because I don t like the side-effects To learn how to cook healthy meals that the whole family will enjoy To have the same person caring for me from 9am to 3pm so my parents can go to work To receive end-of-life care at the hospice close to where my sister lives Source: Coalition for Collaborative Care. Personalised care and support planning handbook. NHS England 2015

17 So The system should work in partnership with people with LTCs in order to support them to develop the knowledge, skills and confidence to manage their own health and healthcare

18 Visit this address to watch the linked video clip: medias/u1k2v30prt

19 Measures of knowledge, skills and confidence Unidimensional Patient Activation Measure (PAM). 13 items Multidimensional Health Literacy Survey for Europe Questionnaire (HLS-EU-Q). 47 items. Health Literacy Questionnaire (HLQ). 44 items Health Education Impact Questionnaire (heiq). 42 items

20 All are stable and reliable with high construct and face validity Questions: Practical utility and predictive validity

21 Patient Activation Measure Unidimensional (ie measures a single concept) Developmental (ie appropriate interventions can support people to progress on a journey of activation) Knowledge, skills and confidence to self manage 13 items, 4 levels Score out of 100

22

23 PAM Scale Source: J.Hibbard, University of Oregon

24 A developmental scale

25 35-45% of population are at activation level 1 or % of population 10-15% of population

26 People at low levels of activation tend to: Feel overwhelmed with the task of managing their health Have low confidence in their ability to have a positive impact on their health Not understand their role in care processes Have limited problem solving skills Have had a great deal of experience with failure in trying to manage, and have become passive with regard to their health Say they would rather not think about their health

27 People at higher levels of activation tend to: Be engaged Come prepared Ask questions Make decisions Have less unmet needs (nb inequalities) Have improved clinical outcomes (including mental health) Enjoy an improved quality of life Use less healthcare resource Feel satisfied at work Why Does Patient Activation Matter? An Examination of the Relationships Between Patient Activation and Health-Related Outcomes. Jessica Greene and Judith H. Hibbard Journal of General Internal Medicine, published online Nov. 30, 2011

28 Self care behaviours and activation 1 USA National sample 2008

29 Self care behaviours and activation 2

30 Encounters with clinicians and activation

31 Emotional health and activation US Knowledge Networks 2008

32

33 Activation as a primary mediator of other outcomes Clinical outcomes, including mental health Improved QOL, wellbeing Higher rate of retention at work Activation More independent Feeling in control Lower utilisation of health and social care resource

34 Patients can be supported on a journey of activation

35 Patients can be supported on a journey of activation by offering tailored interventions: 1:1 or group coaching Thus tailored interventions improve all other downstream indicators

36 Tailored health coaching

37 People at lowest levels of activation gain the most from tailored interventions An evaluation of a self management programme for patients with LTCs. Turner A et al. Patient Education and Counseling 10/2014; 98(2). DOI: /j.pec

38 People at activation level 4 cost 31% less than people at level 1

39 Activation and utility across the system Segmentation Target resources Use resources more effectively Tailored coaching Start where people are Personalise support Programme assessment Quality assure interventions Improve quality of interventions Predictive modelling More sophisticated understanding of drivers of risk

40 The national learning set: using the concept and the PAM at scale

41 5 CCGs plus renal registry. 150,000 licences over 2 years Learning plus rigorous evaluation Pragmatics Face validity Coaching for activation Collaborative care and support planning Understanding population health and reducing inequalities

42 New Horizons Possibility that more licences will become available in line with the aspirations of the 5YFV: Empowering patients (chapter 2) we will do more to support people to manage their own health staying healthy, making informed choices of treatment, managing conditions and avoiding complications.

43 Questions and challenges remain Concept or measure or both? English translation and validity PAM as an outcome? Personal outcomes Social model of health The licencing issue..

44 Alf Collins November 17 th 2015

45 Dr Catherine Zollman MRCP MRCGP Clinical Lead, Penny Brohn Cancer Care Macmillan GP Cancer Lead, Bristol CCG

46 The Penny Brohn Whole Person Approach A model of patient activation in the cancer setting

47 Kings Fund Report 2014 Hibbard & Gilburt: Supporting people to manage their health Patient Activation is when patients obtain the: Knowledge Skills Confidence Motivation they need to become a more active partner in their own health creation and maintenance (and results may reach beyond health in the narrowest sense)

48 Cancer is not a condition where much conscious patient activation has traditionally taken place Cancer is seen as a life-threatening illness needing specialist high-tech intervention A cancer diagnosis is often a DEACTIVATING event

49 False Hope vs False Hopelessness

50 The Penny Brohn Whole Person Model In 1987 Penny wrote If we shift the responsibility for health so that it is no longer exclusively in the doctor s hands, but allow the patient to play a part as well, we go a long way towards relieving feelings of helplessness and futility.

51 Penny Brohn Whole Person Model Surgery Chemotherapy Radiotherapy Body

52 Penny Brohn Whole Person Model Mind Emotions Body Spirit

53 Penny Brohn Whole Person Model Managing stress Imagery Mindfulness Feeling in control Knowledge Being authentic Social connections Giving and receiving Mind Identifying sources of support Conventional medicine Emotional expression Hopefulness Acceptance Breathing Emotions WHOLE PERSON LIVING WELL WITH OR BEYOND CANCER Body Healthy eating Physical activity Breathing Relaxation Complementary Therapy Sunshine Access to green spaces Spirit Financial stability Good work/life balance Stillness Connecting with joy and purpose Meditation Creativity

54 Penny Brohn Whole Person Model Managing stress Imagery Mindfulness Feeling in control Knowledge Being authentic Social connections Giving and receiving Mind Identifying sources of support Conventional medicine Emotional expression Hopefulness Acceptance Breathing Emotions ACTIVATION FOR OPTIMUM RESILIENCE Body Healthy eating Physical activity Breathing Relaxation Complementary Therapy Sunshine Access to green spaces Spirit Financial stability Good work/life balance Stillness Creativity Connecting with joy and purpose Meditation

55 Cancer as an opportunity for activation a key motivator and a teachable window Crisis Fear of Dying vs Joy of Living

56 Kings Fund Report 2014 Hibbard & Gilburt: Supporting people to manage their health Interventions which increase activation: are adjusted to activation level increase people s sense of ownership of their health are individualised increase skills and mastery involve peer support change social environments build confidence involve health coaching

57 Interventions which increase activation: are adjusted to initial activation level But Activation levels are affected by cancer & cancer treatment

58 Activation is affected by cancer & treatment How am I going to tell the children? I don t believe it I can t take anything in I can t think straight Isolation Anger Despair Numbness FATIGUE Sickness Side effects Pain Can t sleep Spending hours in hospital waiting rooms No holidays Being at home all the time Will I be able to work? How do I pay the mortgage? I m going to die: there is nothing I can do to help

59 Activation is affected by stage of cancer journey The Patient Cancer Pathway (NCSI) REMISSION Remains well DIAGNOSIS TREATMENT RECURRENCE Long term effects THE PENNY BROHN INTEGRATED CARE PATHWAY OF SERVICES ACTIVE & ADVANCED DISEASE Treatment PRE -TREATMENT PHASE TREATMENT PHASE SELF- MANAGEMENT PHASE Pre-treatment Support Clinic Treatment Support Clinic Cancer Partners UK Clinic Health & Wellbeing Clinic Introduction to Living Well Living Well with the Impact of Cancer Course Follow Up Services Follow On Services The Approach

60 Interventions which increase activation: are adjusted to initial activation level

61 Our menu of Interventions Psycho-educational courses Nutrition advice and Cookery demonstrations Exercise facilitation and training Relaxation, guided imagery, meditation Self expression art therapy, music therapy, creative groups, choir Counselling, support groups Integrative medical consultations Complementary Therapies bodywork, healing, acupuncture Peer support Residential retreats in a peaceful setting

62 Interventions tailored to Activation levels

63 Interventions which increase activation: are adjusted to initial activation level increase people s sense of ownership of their health Evidence-based empowering education

64 Seed and Soil Hypothesis Stephen Paget ( ) While many researchers have been studying the seed, the properties of the soil may reveal valuable insights into the metastatic peculiarities in cancer cases The Lancet, years of oncology achievement Cancer research should concentrate more on why some organs or individuals give permission for metastasis to grow and others do not EJC 2012

65 Interventions which increase activation: are adjusted to initial activation level increase people s sense of ownership of their health PSYCHO NEURO IMMUNOLOGY

66 Interventions which increase activation: are adjusted to initial activation level increase people s sense of ownership of their health are individualised Mind Emotions Whole person Body Spirit

67

68

69 Interventions which increase activation:? are individualised? Mind?? Emotions ACTIVATION FOR OPTIMUM RESILIENCE Body?? Each person makes their own SMART goals Spirit??

70 Interventions which increase activation: are adjusted to initial activation level increase people s sense of ownership of their health are individualised increase skills and mastery involve peer support change social and physical environments

71 Interventions which increase activation: are adjusted to initial activation level increase people s sense of ownership of their health are individualised increase skills and mastery involve peer support change social and physical environments build confidence SMARTE goals pick the low hanging, tasty fruit Small changes can add up to make a big difference - and it doesn t have to be all at once

72 Interventions which increase activation: are adjusted to initial activation level increase people s sense of ownership of their health are individualised increase skills and mastery involve peer support change social and physical environments build confidence SMARTE goals pick the low hanging, tasty fruit Practical experiences of success relaxation/exercise Witnessing others Counselling Understand and prepare for barriers to change Medical validation Self-compassion

73 - IMPORTANT we can t self-manage everything Life and Control Under my control Under someone's control Not under anyone's control

74 Interventions which increase activation: are adjusted to initial activation level increase people s sense of ownership of their health are individualised increase skills and mastery involve peer support change social and physical environments build confidence involve health coaching Follow up phone calls after LW course Regular review of Healthy and Wellbeing Wheel Personalised Planning Sessions Integrative Medical consultations Motivational Interviewing 1-1 nutrition sessions

75 Interventions which increase activation: are adjusted to initial activation level increase people s sense of ownership of their health are individualised increase skills and mastery involve peer support change social and physical environments build confidence involve health coaching help people see the connections Going

76 Activation to increase resilience

77 Activation to increase resilience

78 Activation to increase resilience

79 Client experiences

80 Thank You

81 Key References Body World Cancer Research Fund. Food, Nutrition, Physical Activity and the Prevention of Cancer: A Global Perspective Available from: Macmillan Cancer Support. The Importance of Physical Activity for People Living With and Beyond Cancer: A Concise Evidence Review, Available from: pdf Mind Segerstrom SC, Miller GE. Psychological stress and the human immune system: a metaanalytic study of 30 years of inquiry. Psychol Bull 2004; 130(4): Spirit Jim HSL, Pustejovsky JE, Park CL, Danhauer SC, Sherman AC, Fitchett G, Merluzzi TV, Munoz AR, George L, Snyder MA, Salsman JM. Religion, spirituality, and physical health in cancer patients: A meta-analysis. Cancer, 2015 (e-pub). Emotions Cancer Support. Worried sick: The emotional impact of cancer Available from: cer_english.pdf Stanton A, Danoff-Burg S, Cameron C, Bishop M, Collins CA, Kirk SB, Sworowski LA. Emotionally expressive coping predicts psychological and physical adjustment to breast cancer. Journal of Consulting and Clinical Psychology, 2000; 68(5): For more information see the Research behind the Penny Brohn Whole Person Approach document or contact research@pennybrohn.org

82 Activation and Action Reaching into Communities in Hull Carolyn Foster-Richards Senior Living Well Development Manager: North Claire Musgreave Living Well Engagement Co-ordinator & Living Well Facilitator Dr Helen Seers Research Fellow

83 Our regional partners

84 Regional Timeline 2012 started scoping region, developing relationships & partnerships in Hull, East Riding & Sheffield Jan 2013 started delivery of 10 pilot regional Living Well courses Oct 2013 Living Well Service Evaluation starting testing Follow-up services in region to respond to outcomes Nov 2013 started negotiations with key stakeholders in Kirklees May 2014 started delivery of Living Well courses & Follow-up services in Kirklees Summer 2014 starting to have issues with recruitment to Living Well courses in Hull started scoping exercise Sept 2014 completed scoping report & embarked on regional service redesign to stimulate engagement & increase activation Jan 2015 started testing of new services across region

85 we are all different with different needs, people these days want to be able to dip in and out as they need to from a variety of sources Macmillan, Penny Brohn Cancer Care and others Hull patients don t want to be reminded they have got cancer, people find it difficult to talk about it to others. In Hull there is lots of deprivation the healthy eating message gets lost You re on your own mate Not everyone wants to sit in a group they want to use the internet more at a time that is convenient to them, download things Services need to be tailored to the local area Some people won t be interested. HCP s are key, if they could give information to cancer patients on diagnosis people could then chose whether or not to look at what you have to offer. A high percentage of Hull residents would not readily access courses and self-help groups, I know we struggle Preparing to return to work was a difficult time when I needed extra support and my GP seemed to be struggling to support me and provide answers. Shorter, modular events on a rotational basis offering people more flexibility and choice

86 Hull Demographics Cancer Statistics (reviewed ) Incidence: per 100,000 people each year v England average One Year Cancer Survival: 66.1% v England average 69.3% Mortality: per 100,000 people v England average 172 Kingston Upon Hull Health Profile 2015 (based on population of 287,000 mid 2013) Health in summary: health generally worse than England average; life expectancy is lower than average; deprivation is higher than average % (15,800) children live in poverty. Adult health key issues: obesity 28.4%; alcohol related harm; self harm; smoking related deaths; levels of smoking and physical activity worse than England average Local health priorities: The best start in life. Healthier, longer, happy lives. Safe and independent lives. Data from: National Cancer Intelligence Network NCIN Cancer E-Atlas & Public Health England: Health Profile Hull June 2015

87 More than 4 in 10 cases of cancer could be prevented by lifestyle changes such as: Not smoking Keeping a healthy body weight Eating a healthy balanced diet Keeping active Cutting back on alcohol Staying safe in the sun Given the high incidence rates (in Hull) more could be done to ensure that more people are aware of the risk factors. National Cancer Intelligence Network NCIN Cancer E-Atlas

88 Hull, our home, full of friends, family and wonderful memories. Daisy Chains - Humberside Police Lifestyle 2015

89 Our shared passion What we wanted to create flexible, person-centred services Designed to engage, inspire and stimulate patient activation over the long term To create a bridge between Primary and Secondary Care Available at anytime diagnosis, during treatment, post treatment, living with and beyond cancer including Palliative & EOL

90 Recognising diverse local needs

91 Our self-care menu

92 Engagement Encouraging clinicians to: Discuss their patient s self-care needs including - understanding, confidence, skill and motivational levels To establish informally their patient s current activation level Be an unprejudiced co-creator to facilitate a personcentred, informed choice about services(s) to access Establish an agreeable starting point Go back to the conversation during each appointment how have they got on? Agree next steps to optimise long term health outcomes

93 Website Helpline Online Community Living Well Course Follow-up & on services What are your patient s self-care needs? Local Contact Drop in Intro session: Managing Stress Eating Well Activity

94 Challenges Gatekeeping, control, competition It s my patient. We ve got it covered, our patients don t need any additional services. Engaging with GP s Not enough time during clinical appointments to discuss selfcare Health and social care budget cuts Pathways, partnerships and planned solutions can be exclusive rather than inclusive Accessing up to date services information and data is an ongoing challenge One size really doesn t fit all

95 Emerging Solutions in Hull Better Care Fund/Programme Local drivers - Hull 2020 co-designing new services Patient Navigators secondary care Care Co-ordination primary care Social Prescribing Models See and Solve Facilitators Making Every Contact Count (MECC) More inclusive steering groups Healthwatch magazines/website/information officers Connect to Support online information portals & shops

96 Claire Musgreave Living Well Engagement Co-ordinator & Living Well Facilitator

97 Activation and Action - Case Study - Palliative & EOL Connecting with loved ones & supporter getting support PBCC Formal counselling - OHC, Castle Hill Hospital Acknowledging emotions PBCC Access to green spaces Sunshine Stress management Techniques PBCC Emotions LW Programme PBCC Knowledge about cancer and the immune system Living well course, Follow up & Follow on services PBCC Mind Building resilience & optimising QOL Spirit Mindfulness, relaxation & imagery PBCC Good work/life balance still working but part time Fundraising & attending events PBCC, Marie Curie Hull & East Riding PBCC Body Conventional and complementary symptom control Royal London Hospital for Integrative Medicine Learning about healthy eating and cooking PBCC Physical activity - Crocker & Hansen Hospital-based cancer treatment + Royal Marsden Breathing techniques for relaxation PBCC Financial advice/support - Macmillan Signposting to sources of practical support - Macmillan

98 Our story so far

99 2015 Programme of services Monthly Drop In Clinic in Hull Monthly Introduction to the Penny Brohn Whole Person Approach Sessions in Hull Monthly Penny Brohn Cancer Care Hull & East Riding 3 Live Well Courses at Oncology Health Centre, Castle Hill Hospital, Cottingham. Follow Up Days Local Contact, Facebook group and Twitter

100 Local point of contact

101 Drop in Sessions 1 a month Currently located within Bransholme Health Centre, Hull Designed to stimulate an interest in the organisation - give local people the opportunity to talk to a local person about our services and how they can help them

102 Introduction to the Penny Brohn Whole Person Approach Sessions 1 a month Managing Stress, Activity, Eating Well Different Health Centres throughout Hull Run as a group sessions or 1:1 All 3 sessions delivered for local Brain Tumour Support Group

103 Future for Introduction Sessions Current sessions are for 2 hours on a Thursday afternoon, to look at morning or evening sessions Consider extending sessions by 30 mins to give people more time to chat Continue to working our way around the GP surgeries, speaking to Practice Managers Plans to deliver in more sessions in East Riding

104 Penny Brohn Hull & East Riding A chance for Clients and Supporters to meet once a month For people who are unsure who PBCC are Venues in Hull & East Riding Now averages between members a month Different speaker every month Monthly update on PBCC services and news

105 Structured content, informed by the group Different speaker every month:- Talks about complementary therapies 7 course taster meal - Wiltshire Farm Foods Juicing demonstration Music therapy Basic First Aid Course British Red Cross All speakers are from local services. Clients and Supporters are a sounding board for ideas. Clients and Supporters have a say in what happens at

106 Having been a member of a couple of cancer support groups, I've noticed that PB community focusses on what we can do to support ourselves in positive holistic ways, as a result I find this group empowering, and inspiring, whilst I've come away from other groups feeling more helpless and depleted than I did before attending. Support groups are often extremely helpful in sharing some of the experiences of a cancer diagnosis, but the quality and focus of the support can also impact hugely on your ability to survive and thrive both during and after treatment. Thank you Penny Brohn for being a great model for an empowering and positive support group. Anna Buckley

107 Future of Larger East Riding venue needed Speakers already booked until March 2016 Project is a huge part of PBCC Hull & East Riding and enables us to offer ongoing flexible support.

108 Facebook & Twitter Penny Brohn Cancer Care Hull & East Riding Facebook group started May 2015 PBCC North Twitter account started July 2015

109 Our Vison for the Future Service development - 1:1 services in Hull & Wellbeing days Offer services within a new Integrated Care Centre in Hull Link in with new Community Hubs across Hull Engage with new community roles See & Solve Facilitators, Care Coordinators

110 Dr Helen Seers Research Fellow

111 Service Evaluation Hull & East Riding Overall Evaluation procedure: Patient Reported Experience Measures (PREMS) used across all services IWPA sessions show high levels of satisfaction

112 Service Evaluation Hull & East Riding Eating Well (n=18): 90% satisfaction rate for session content Rated 4.6/5 for meeting needs and 4.7/5 for meeting expectations 53% said it would have been helpful earlier in cancer journey 50% would now be interested in attending a Living Well Course 67% would now be interested in attending other PBCC services

113 Service Evaluation Hull & East Riding Eating Well: The information given shows how you can help yourself The message that I don t have to wait until after treatment, I can start immediately and make a difference (Things that were particularly helpful)

114 Service Evaluation Hull & East Riding Managing stress (n=15): 88% satisfaction rate for session content Rated 4.4/5 for meeting needs and 4.5/5 for meeting expectations 86% said it would have been helpful earlier in cancer journey 72% would now be interested in attending a Living Well Course 50% would now be interested in attending other PBCC services

115 Service Evaluation Hull & East Riding Managing stress: Eat healthy, de-stress, exercise more Making time for myself and carrying out more relaxation exercises Mindfulness and setting myself goals (Main messages/ideas taken away)

116 Service Evaluation Hull & East Riding Activity (n=3): 91% satisfaction rate for session content Rated 4.7/5 for meeting needs and 5/5 for meeting expectations 50% said it would have been helpful earlier in cancer journey 100% would now be interested in attending a Living Well Course 100% would now be interested in attending other PBCC services

117 Service Evaluation Hull & East Riding Activity: Exercise techniques and how important they are in reducing cancer The information about exercise and diet. Wasn t aware how much of a difference that can make The DVDs and the use of service user/patient input gave reassurance (Things that were particularly helpful)

118 Service Evaluation Hull & East Riding Community Group: (n=13) 92% satisfaction rate 100% said they felt more supported as a result of meeting others 83% said they felt less isolated

119 Service Evaluation Hull & East Riding Community Group I am enormously grateful to PB. The support is great and talking to other people in my situation is of enormous benefit

120 Service Evaluation Hull & East Riding

121 Living Well PAM data Results are based on data from 66 clients; this is the number of clients who have provided both pre- and post-course PAM data to date PAM data can be presented as a level (1-4) of activation or as a score out of 100. Pre course mean score out of 100 = 57.8 Post course mean score out of 100 = 61.2 This improvement is statistically significant (p=.014)

122 Living Well PAM data An increase of 4 points or more is considered meaningful, as this increase has been linked to an improvement in self-management behaviours. Mean individual score change = % had a meaningful improvement in their PAM score after the LW course The biggest improvements were seen in the clients who had the lowest levels of activation before the course.

123 Service Evaluation Hull & East Riding Future evaluation Introduce Patient Activation Measure for IWPAs running in Kirklees from November 2015 Find out if IWPAs are attracting people with lower levels of activation Follow people up after 8 weeks to see if activation improves

124 Visit this address to watch the linked video clip: medias/v2hcb72s28

125 Question and Answer Session