living well with and beyond cancer th national conference · living well with and beyond cancer. 6....

Living Well With and Beyond Cancer6th National Conference

From passive to proactive: the pathway to health activation

Laura KerbyCEO

Michael ConnorsDirector of Services

35 years Activating Health and Wellbeing

PresenterPresentation NotesFormed by Penny Brohn and Pat Pilkington in 1980It is a story of survivorship as Penny sought to support herself through her journey with cancerAll our services are FREE

What sets us apart is for the last 30 years we have been promoting a whole person approach to cancer care. We recognise that a cancer diagnosis is more than just cancer and we provide this support through an extensive range of courses.

Our services follow a unique programme of support developed by us called the Bristol Approach. This is:A unique programme developed by docs, nurses, therapists & people with cancerInvolves a combination of physical, psychological, emotional & spiritual support Works alongside any medical treatment choicesGives people the practical tools and offers support to help people live well with cancerDelivered through a mixture of residential and non-residential courses, one on one appointments & support groups

We give people the practical tools they need to regain control of their lives. With our support they can make positive and lasting changes to their health. We can enable them to live as well as they can with the impacts of cancer. All services provided by Penny Brohn Cancer Care are offered free of a set charge. We do not receive any form of statutory funding and rely on voluntary donations to support our work.

Activating HealthPenny Brohn Whole Person Model

Emotions Body

Mind

Spirit

WHOLE PERSON

AFFECTED BY CANCER

PresenterPresentation NotesWe know from our own experience that our health is about more than just our bodies.Our overall health and wellbeing are affected also by our thoughts and emotions and by our outlook on life and how meaningful our life is to us.The whole person model of health includes these, as our physical, mental, emotional and spiritual health.Our health is also affected by what goes on around us – our physical environment, our community and our close relationships.All of these things are important for us to be fully healthy.If we can pay attention to all of them and bring them into balance, that is when we feel our best and are most able to manage the impacts of cancer on our lives.

“...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.”

Activating Health

National Cancer Survivorship Initiative

PresenterPresentation NotesAs we are all aware there are still a large number of people who would like more support and NCSI provided evidence of this.

PBCC were invited to be involved with the NCSI since its inception:

As part of the Active and Advanced Work stream, in partnership with Macmillan performed a scoping exercise; reviewing the evidence of the benefits of “Living Well” for people with active and advanced disease and examining good practise in this area.

We also ran a pilot in partnership with North Bristol NHS Trust as one of the initial adult test sites. This was our first opportunity to trial delivering our Living Well courses away from the national centre. The trial was very successful and we went on to extend the pilot, delivering a further courses at venues in Leeds, Cambridge, Hereford and London.

Living beyond cancerpotentially with consequences

Living with cancereither incurable or further diagnosis

The Penny Brohn Integrated Care Pathway of Services

Diagnosis

Patient Cancer Journey

PBCC Pathway of Support

Treatment Treatment ends

Pre Treatment Clinic

Treatment Support Clinic

Health & Wellbeing Clinic

Living Well Course

Follow up services

Follow on services

Living Well Courses

National Centre

Prostate Cancer UK Living Well CoursesCancer Partners UKHealth & Wellbeing ClinicsBowel Cancer UKLiving Well ServicesProstate Cancer UKLiving Well Pathway Services(Health & Wellbeing Clinics and Living Well Courses)

Living Well Follow Up DaysIntroduction to Whole Person ApproachCommunity@ and Drop-In SessionsTelephone Support

National Living Well ServicesReaching out to support

Emotions Body

Mind

Spirit

OPTIMAL RESILIENCE


Activation.Knowledge, skills and confidence to

manage one’s own health and healthcare

Alf Collins FRCA FRCP FRCGPClinical Associate in Person Centred Care,The Health FoundationVisiting Professor of Person Centred Care, Coventry University

Penny Brohn November 17th 2015

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

Working in partnership

Shared decision making

Supporting self managementCare planning

Co-producing health

Doctors’ and Patients’ Priorities

71

96

80

07

59

33 33

0

20

40

60

80

100

120

Keep breast Live as long as possible Look natural withoutclothes

Avoid using prosthesis

Top goals and concerns in breast cancer decisions

Doctors Patients

Sepucha et al. (2008). Pt Education and Counseling. 73:504-10

Hours with NHS / social care professional = 5-10 in a year

Self management= 8750-55 in a year

Day to day decision making: self management

PresenterPresentation Notes This is a key diagram (always has high face validity for patients and everyone else in the audience - helps them really see what the issues of living with a LTC are really about). ItDemonstrates the need visually from the person’ point of viewIdentifies the problems with the current approach Provides a visual framework to hang the Delivery System on. The DS addresses all the aspects across the ‘whole System’

NB Drawn by people with LTCs on a paper table cloth at a World Café workshop. Points to note: People with LTCs are self managing all the time (8757 hours) – it is not something that can be ‘given to them’ or ‘allowed’ by the NHSThe contacts with NHS usually appear regularly – uncoordinated with the ups and downs of everyday lifeSurveys show that less than half the time allotted to the orange bars is devoted to discussing living with the condition or self management along the green wavy line.

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

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

So…

Visit this address to watch the linked video clip:

https://pennybrohncancercare.wistia.com/medias/u1k2v30prt

https://pennybrohncancercare.wistia.com/medias/u1k2v30prt

• 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

Measures of knowledge, skills and confidence

All are stable and reliable with high construct and face validity

Questions: Practical utility and predictive validity

• 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

Patient Activation Measure

1

When all is said and done, I am the person who is responsible for taking care of my health

2

Taking an active role in my own health care is the most important thing that affects my health

3

I am confident I can help prevent or reduce problems associated with my health

4

I know what each of my prescribe medications do

5

I am confident that I can tell whether I need to go to the doctor or whether I can take care of a health problem myself

6

I am confident that I can tell a doctor concerns I have even when he or she does not ask

7

I am confident that I can follow through on medical treatments I may need to do at home

8

I understand my health problems and what causes them

9

I know what treatments are available for my health problems

10

I have been able to maintain (keep up with) lifestyle changes, like eating right or exercising

11

I know how to prevent problems with my health

12

I am confident that I can figure out solutions when new problems arise with my health

13

I am confident that I can maintain lifestyle changes, like eating right and exercising, even during times of stress

Source: J.Hibbard, University of Oregon

PAM Scale

A developmental scale

10-15% of population

25-30% of population

35-45% of population are at activation level 1 or 2

PresenterPresentation Notes7% of the population are at level 1 activation- they tend to enjoy a worse quality of life and have worse outcomes than people at level 4 activation

• 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

People at low 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 workWhy 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

People at higher levels of activation tend to:

Self care behaviours and activation 1

USA National sample 2008

Self care behaviours and activation 2

Encounters with clinicians and activation

US Knowledge Networks 2008

Emotional health and activation

Activation

Clinical outcomes, including mental

health

Improved QOL, wellbeing

Higher rate of retention at work

Feeling in control

More independent

Lower utilisation of health and social

care resource

Activation as a primary mediator of other outcomes

Patients can be supported on a ‘journey of activation’

Thus tailored interventions improve all other ‘downstream’ indicators

Patients can be supported on a ‘journey of activation’ by offering tailored

interventions: 1:1 or group coaching

Tailored health coaching

People at lowest levels of activation gain the most from tailored interventions

• http://www.population-health.manchester.ac.uk/primarycare/npcrdc-archive/archive/ProjectDetail.cfm/ID/117.htm

• An evaluation of a self management programme for patients with LTCs. Turner A et al. Patient Education and Counseling 10/2014; 98(2). DOI:10.1016/j.pec.2014.08.022

http://www.population-health.manchester.ac.uk/primarycare/npcrdc-archive/archive/ProjectDetail.cfm/ID/117.htm

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

Segmentation•Target resources•Use resources

more effectively

Tailored coaching•Start where

people are•Personalise

support

Programmeassessment•Quality assure

interventions•Improve quality of

interventions

Predictive modelling•More

sophisticated understanding of drivers of risk

Activation and utility across the system

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

• Learning plus rigorous evaluation– Pragmatics– Face validity– ‘Coaching for activation’– Collaborative care and support planning– Understanding population health and reducing

inequalities

5 CCGs plus renal registry. 150,000 licences over 2 years

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.’

New Horizons

• Concept or measure or both?• English translation and validity• PAM as an outcome?• Personal outcomes• Social model of health • The licencing issue…..

Questions and challenges remain

http://www.kingsfund.org.uk/publications/supporting-people-manage-their-health

Alf CollinsNovember 17th 2015

Dr Catherine Zollman MRCP MRCGP

Clinical Lead, Penny Brohn Cancer CareMacmillan GP Cancer Lead, Bristol CCG

The Penny Brohn Whole Person Approach

A model of patient activation in the cancer setting

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)

Kings Fund Report 2014Hibbard & Gilburt: Supporting people to manage their health

PresenterPresentation Notes– job satisfaction, absenteeism, enjoyment of life and global resilience)

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

PresenterPresentation NotesThe concept of self management is not new, to us or to the health service and those managing long term conditions - and has been a substantial part of our history. Back in 1987 Penny wrote

False Hope vsFalse Hopelessness

PresenterPresentation NotesPublished in 2009

The Penny Brohn Whole Person Model

In 1987 Penny wrote…

“If we shift the responsibility for health so that it isno longer exclusively in the doctor’s hands, butallow the patient to play a part as well, we go along way towards relieving feelings ofhelplessness and futility.”

PresenterPresentation NotesThe concept of self management is not new, to us or to the health service and those managing long term conditions - and has been a substantial part of our history. Back in 1987 Penny wrote

Penny Brohn Whole Person Model

Body

SurgeryChemotherapyRadiotherapy



Emotions

Mind

Spirit

Body


Emotions Body

Mind

Spirit

WHOLE PERSON

LIVING WELL WITH OR BEYOND CANCER

Financial stability

Good work/life balanceAccess to green spaces

Sunshine

Social connectionsBeing authentic

Giving and receiving Identifying sources of support

Knowledge

Managing stress

Feeling in control

Emotional expression

Hopefulness

Acceptance

Stillness Creativity

Connecting with joy and purpose

Healthy eating

Breathing

Physical activity

Imagery Mindfulness

Meditation

RelaxationBreathing

Conventional medicine


Complementary Therapy

Emotions Body

Mind

Spirit

ACTIVATION FOR

OPTIMUM RESILIENCE

Financial stability

Good work/life balanceAccess to green spaces

Sunshine

Social connectionsBeing authentic

Giving and receiving Identifying sources of support

Knowledge

Managing stress

Feeling in control

Emotional expression

Hopefulness

Acceptance

Stillness Creativity

Connecting with joy and purpose

Healthy eating

Breathing

Physical activity

Imagery Mindfulness

Meditation

RelaxationBreathing

Conventional medicine


Complementary Therapy

PresenterPresentation NotesKings Fund Report 2014 “Patient Activation may be tapping into a concept that goes beyond health” – return to work, job satisfaction, absenteeism

CrisisFear of Dying vs Joy of Living

a key motivator and a “teachable window”

Cancer as an opportunity for activation

PresenterPresentation NotesDaoistinscrption

Point where things change or begin

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

Kings Fund Report 2014Hibbard & Gilburt: Supporting people to manage their health

PresenterPresentation Notes– job satisfaction, absenteeism, enjoyment of life and global resilience)

• are adjusted to initial activation level

But…

Activation levels are affected by cancer & cancer treatment

Interventions which increase activation:

PresenterPresentation NotesMindfulnessPhysical activitesPeers at different stages of journeySupporter changes – LW evaluation – changes home environmentResidential facilities – immersion in different environment

Activation is affected by cancer & treatment

I’m going to die: there is nothing I can do to help

How am I going to tell the children?

Will I be able to work?How do I pay the mortgage?

FATIGUESicknessSide effectsPainCan’t sleep

I don’t believe itI can’t take anything inI can’t think straight

AngerDespair“Numbness”

Spending hours in hospital waiting roomsNo holidaysBeing at home all the time

Isolation

PresenterPresentation NotesThe latest version of WPA

Follow Up Services

Treatment Support Clinic

Pre-treatment Support Clinic

Follow On Services

Introduction to Living Well

Cancer Partners UK

Clinic

Living Well with the Impact of

Cancer Course

Health & Wellbeing

Clinic

TREATMENT PHASE SELF- MANAGEMENT PHASE

PRE -TREATMENT PHASE

THE PENNY BROHN INTEGRATED CARE PATHWAY OF SERVICES

DIAGNOSIS TREATMENT

Treatment

Long term effects

Remains wellREMISSION

RECURRENCE

ACTIVE & ADVANCED

DISEASE

The Patient Cancer Pathway (NCSI)

The Approach

Activation is affected by stage of cancer “journey”

PresenterPresentation NotesREFER TO SERVICES BROCHURE

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

Interventions tailored to Activation levels


• increase people’s sense of ownership of their health

Evidence-based empowering education



Stephen Paget (1855-1926)

“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, 1889

Seed and Soil Hypothesis

50 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


• increase people’s sense of ownership of their health


PSYCHO NEUROIMMUNOLOGY


• are adjusted to initial activation level• increase people’s sense of ownership of their health

• are individualised


Whole personEm

otio

ns

Mind

Body

Spirit

2

4

6

2

4

6


• are individualised


Emotions Body

Mind

Spirit

ACTIVATION FOR

OPTIMUM RESILIENCE

?

?

?

??

?

?

?

Each person makes their own SMART goals


• 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



• 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



• 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



- IMPORTANT –we can’t self-manage everything

Life and Control

Under my control

Under someone'scontrolNot under anyone'scontrol

PresenterPresentation NotesI recently went to a talk by David Servan Schreiber who xxxxxAngry woman with metastatic breast cancer

• 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



• 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



Activation to increase resilience

Client experiences

Thank You

Key References

Body• World Cancer Research Fund. Food, Nutrition, Physical Activity and the Prevention of

Cancer: A Global Perspective. 2007. Available from: http://www.dietandcancerreport.org/cancer_resource_center/er_full_report_english.php

• Macmillan Cancer Support. The Importance of Physical Activity for People Living With and Beyond Cancer: A Concise Evidence Review, 2011. Available from: www.macmillan.org.uk/Documents/AboutUs/Commissioners/Physicalactivityevidencereview.pdf

Mind • Segerstrom SC, Miller GE. Psychological stress and the human immune system: a meta-

analytic study of 30 years of inquiry. Psychol Bull 2004; 130(4): 601-630.

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. 2006. Available from:

http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Campaigns/Impact_of_cancer_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): 875-882.

• For more information see the ‘Research behind the Penny Brohn Whole Person Approach’ document or contact [email protected]

http://www.dietandcancerreport.org/cancer_resource_center/er_full_report_english.phphttp://www.macmillan.org.uk/Documents/AboutUs/Commissioners/Physicalactivityevidencereview.pdfhttp://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Campaigns/Impact_of_cancer_english.pdf

Activation and Action – Reaching into Communities in Hull

Carolyn Foster-RichardsSenior Living Well Development Manager: North

Claire MusgreaveLiving Well Engagement Co-ordinator & Living Well Facilitator

Dr Helen SeersResearch Fellow

PresenterPresentation Notes* team approach to deliver this session…

Activation and Action – how started Reaching into Communities & sharing some Patient Perspective’s along the way - Carolyn F-R & Claire MDr Helen Seers talk - Evaluation of our New Services in the North and how this work is going to develop in the future.Quick video co-produced with members of our Community @ group in Hull.

Our regional partners

PresenterPresentation Notes3 Local Authority areas – Hull, East Riding & Kirklees + Calderdale & Huddersfield NHS F TrustDiverse mix of service delivery across primary & secondary care Working in partnership with other Cancer Trusts and local business.

Kirklees started - 2 CCGs & Kirklees Council working with the Self Care team within Public Health alongside other self care providers e.g. EPP., Health Trainers

2015/16 project more towards NCSI vision - working with the local trusts as they work towards implementing the Recovery Package Provides Seamless link between primary & secondary care

Focus today - Hull Community based services

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

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.

A high percentage of Hull residents would

not readily access courses and self-help

groups, I know we struggle

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

You’re on your own

mate

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

Shorter, modular events on a

rotational basis offering people more flexibility

and choice

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

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.

Services need to be tailored to the local

area

PresenterPresentation NotesOutcomes of the scoping exercise – quotes/comments from:

People affected by cancer using our servicesPeople affected by cancer not using our servicesOur delivery partners and members of their clinical teamsOther cancer service providersOur team of facilitators some of whose backgrounds are in cancer care within the NHS or other local providers.

Hull DemographicsCancer Statistics (reviewed 30.1.15)• Incidence: 448.5 per 100,000 people each year v England average 398.1• One Year Cancer Survival: 66.1% v England average 69.3% • Mortality: 215.9 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 -31.5% (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

PresenterPresentation NotesHull is ranked the third most deprived local authority on England

28th Oct 2015 Yorkshire Cancer Research said‘Lung cancer is the most common cancer in Yorkshire, with incidence rates nearly 20% higher than the national average*. It is also the most common cause of cancer death in the county. More than 3,000 people in Yorkshire died from lung cancer in 2013**, and the mortality rate in Hull is almost twice the national average.’

Local health priorities have changed in 2015 from - smoking; obesity; alcohol

‘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 sunGiven 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

PresenterPresentation NotesClear roles locally – both in prevention & supporting people living with & beyond.

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

PresenterPresentation NotesProud city…

Lifestyle project - partners Arco Ltd have been involved in this year.

Taken from a brochure created for 15 & 16 year old category

“filled with responses from the people of Hull that captures the love and enthusiasm we all have for the city.”

City looking forward to Hull City of Culture 2017 – key message “Creating a healthier Hull”

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

Our shared passion

PresenterPresentation NotesCommunity based service in Hull - working alongside Hull CCG community services provider

Supporting people living in the community with the longer term impact of cancer and their supporters

Recognising diverse local needs

PresenterPresentation NotesWhen we speak about diversity it’s not just about ethnicity its:

AgeSocial status –NB Hull is ranked the third most deprived local authority on EnglandGenderEmployment statusFamily statusInternet savvy/notMobility – being able to access services

Creates a need for diverse services to offer real choices to everyone.

Our self-care menu

PresenterPresentation NotesCreated a self-care menu - blend of PB services provided by:

National Centre local services

To offer people person-centred, flexible choices - designed to stimulate patient activation over time including:

1:1 services – helpline, local contact/drop in Group sessions – IWPA, Living Well, Follow up, Community @ locally & residential services Self discovery option - our website & downloadable tools; Facebook, Twitter, online community.

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 person-

centred, 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

PresenterPresentation NotesOngoing piece of work for our team

More recently starting to have conversations about stimulating Patient Activation

Encouraging HCP’s to introduce our new wider range of services, alongside services and support from other providers.

Living Well Course

Follow-up & on

services

Intro session:

Managing Stress

Eating WellActivity

What are your

patient’s self-care needs?

Local ContactDrop in

Community @

WebsiteHelplineOnline

Community

PresenterPresentation NotesDecision making tool

HCP’s asked for help to better navigate our range of services each linking in to the 1-4 Stages of Activation….

1 - May not yet believe that the patient role is importantDoes not feel in charge of their own health. Lacks confidence. Has few coping skills

2 - Lacks confidence and knowledge to take actionMay have little experience or success with behaviour change. Low confidence in ability to manage health. May lack basic knowledge.

3 - Beginning to take actionHas the basic facts and some experience of success in making change. Confident in handling limited aspects of health

4 - May have difficulty maintaining behaviours over timeHas made most of the necessary changes but may have difficulty maintaining them over time or during times of stress

• 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 self-

care• 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

Challenges

PresenterPresentation NotesChallenges we have experienced - seem to be commonly recurring themes…

Gatekeeping/Control/Competition e.g. Better Care Conference Hull 6.11.15– words used by presenter

“It’s my patient – we’ve got it covered-our patients don’t need any additional services.” again phrases used by other stakeholders…

e.g. Better Care Programme Meeting in East Riding this year – presentation slides comments recorded by HCP’s.

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

PresenterPresentation NotesBetter Care FundJune 2013 £3.8 billion Integration Transformation Fund – now referred to as the Better Care Fund – ‘a single pooled budget for health and social care services to work more closely together in local areas, based on a plan agreed between the NHS and local authorities.Based on the need for integrated care to improve people’s experience of health and social care

MECCMaking Every Contact Count (MECC) - national initiative to encourage conversations based on behaviour change methodologies (ranging from brief advice, to more advanced behaviour change techniques), empowering healthier lifestyle choices and exploring the wider social determinants that influence all of our health.

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Claire Musgreave

Living Well Engagement Co-ordinator & Living Well Facilitator

PresenterPresentation NotesIntro Claire to do next bit together

Community @ Hull & East Riding PBCC

Learning about healthy eating and cooking PBCCPhysical activity - Crocker & Hansen

Breathing techniques for relaxation PBCC

Financial advice/support -Macmillan

Signposting to sources of practical support -MacmillanGood work/life balance –

still working but part time

Mindfulness, relaxation & imagery PBCC

Knowledge about cancer and the immune system – Living well course, Follow up & Follow on services PBCCStress

managementTechniques –

PBCC

Access to green spaces

Sunshine

Formal counselling - OHC, Castle Hill Hospital

Connecting with loved ones & supporter getting support

PBCC

Emotions Body

Mind

Spirit

Building resilience & optimising

QOL

Conventional and complementary symptom control – Royal London Hospital for Integrative Medicine

Activation and Action - Case Study - Palliative & EOL

Hospital-based cancer treatment + Royal Marsden

Fundraising & attending events PBCC, Marie Curie

LW Programme PBCC

Acknowledging emotions PBCC

PresenterPresentation Notes@ EOL….

Male mid 50’s, manual worker from HullPalliative & EOL – 1 year beyond prognosis & countingStill working and still able to live life to the full Often seen wearing proudly his Coffin Dodger t shirtAccessing services from a wide range of providers in a flexible, person-centred way

Good example of an initially poorly activated patient inspired to improve his health and wellbeing for as long as possible, self selecting from a wide range of providers to create a bespoke package of self & clinical care to enable him to enjoy a quality of life for as long as possible.

Really good example of why services and pathways should be co designed to be inclusive of a wide range of health, social care & voluntary sector providers to stimulate patients activation levels and improve health and wellbeing in the longer term. Facilitating informed choices and truly person-centred care

Read testimonial

Over to Claire

Our story so far…

Monthly Drop In Clinic in Hull

Monthly Introduction to the Penny Brohn Whole PersonApproach Sessions in Hull

Monthly Community @ Penny Brohn Cancer Care Hull & EastRiding

3 Live Well Courses at Oncology Health Centre, Castle HillHospital, Cottingham.

Follow Up Days

Local Contact, Facebook group and Twitter

2015 Programme of services

PresenterPresentation NotesDrop in/Introduction sessions/Community delivered in partnership with/funded by City Health Care Partnership CICServices in East Riding including - Live Well courses and Follow up services are supported by Arco LTD & Jo Martin Cancer Care Trust locallyGoing to talk specifically at the additional PB services we are testing in Hull – Local Contact/Drop in/Introductory sessions/Community @/Facebook & Twitter

Local point of contact

PresenterPresentation NotesFirst point of contact with PBCC Hull & East Riding.Designed to stimulate an initial interest and confidence in our services for people with potentially low Patient Activation levelsConversation with an experienced PBCC facilitator , trained to have an open conversation about their situation, what is important to them in their self-management journey, which of our services interests them initially ie where would they like to start and how they go about it giving them the initial confidence to progress.Part of a range of PBCC services which includes our website, national helpline and online community designed to increase curiosity, inspire, motivate and ultimately encourage people t o progress through our range of services and, in the longer term, increase their personal activation level and improve longer term health outcomes.

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

PresenterPresentation NotesOur next level of local services, designed to work in a similar way to our local contact service but offers people the opportunity to meet a trained facilitator face to face in a local place.Bransholme is one of the largest council estates in Europe. There is deprevation and lots of poorly activated people who rely on their GPs for help.We are there to create a visual presence and give support and advice on our services by a qualified facilitator but also knowledge of the area to signpost patients to another service if needed.Location selected - Bransholme - an area and a housing estate on the north side of Hull and reported to be one of the largest in EuropeEast Bransholme population 10, 325 plus West Bransholme 8209 total population = 18,534 (Humber Data Observatory) High levels of deprivation, unemployment, poor health & poor lifestyle choicesAverage Life expectancy East Bransholme from birth is 74.3 years

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

Introduction to the Penny Brohn Whole Person Approach Sessions

PresenterPresentation NotesDelivered in a Primary Care setting Modular elements of our fully evaluated LW course - designed to stimulate a higher level of interest in self-care and provide an opportunity to meet others in a similar situation locallySessions are flexible – attend 1 or all 3 with option to attend a Live Well course in the futureSome people who have attended these sessions have found them helpful and have gone on to book on a Live well Course so early outcomes suggest it seems to be a good way to stimulate Patient Activation Levels.

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

Community @ 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 12-20 members a month Different speaker every month Monthly update on PBCC services and news

PresenterPresentation NotesDesigned to inspire, increase confidence, motivation and skill to self-manage by meeting regularly with people in the same situation – understanding their experiences, challenges, successesAccessible to any one affected by cancer who wants to find out more about what we do

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 Community @.

Structured content, informed bythe group

PresenterPresentation NotesOffers ongoing structured self-management support expanding on the Penny Brohn Whole Person Approach

“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

Future of Community @

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.

Facebook & Twitter

Penny Brohn Cancer Care Hull & East Riding Facebook group started May 2015

PBCC North Twitter account started July 2015

PresenterPresentation NotesWay for people to informally engage with PBCC and our services, keeps people informed about services and activities at Penny Brohn Cancer Care and provides self-care links – e.g. tips, advice, downloadable tools to stimulation Patient Activation

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 HullEngage with new community roles – See &

Solve Facilitators, Care Coordinators

PresenterPresentation NotesIn order to better support people affected by cancer in Hull & East Riding, alongside our existing skills and experience, we have recently completed local training in Safeguarding, Making Every Contact Count (MECC), Carer Champion

Our ideas for service development - to complement our existing range of local servicesAs part of the ‘Hull 2020’ work (Hull 2020 is a local policy ‘driver ‘ involving health & social care stakeholders across Hull) new services are being co-designed which include a new Integrated Care Centre in Hull as well as community hubs across the city. In addition there are interesting new community roles emerging to enhance the existing social prescribing pilots in Hull and to ensure that people have information about and access to the full range of services and support – including local voluntary sector services

Dr Helen Seers

Research Fellow

Service Evaluation – Hull & East Riding

Overall Evaluation procedure:

• Patient Reported Experience Measures(PREMS) used across all services

• IWPA sessions show high levels of satisfaction




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




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)




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




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)




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




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)




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




Community Group

“I am enormously grateful to PB. The support is great and talking to other people in my situation is of enormous benefit”



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)



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 = 3.6

• 44% 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.




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



Visit this address to watch the linked video clip:

https://pennybrohncancercare.wistia.com/medias/v2hcb72s28



https://pennybrohncancercare.wistia.com/medias/v2hcb72s28

Question and Answer Session

Slide Number 1Slide Number 2Slide Number 335 years �Activating Health and WellbeingSlide Number 5Slide Number 6Slide Number 7Slide Number 8Slide Number 9Slide Number 10Activation.�Knowledge, skills and confidence to manage one’s own health and healthcareThe Passive PatientCo-producing healthDoctors’ and Patients’ Priorities�Day to day decision making: self managementPatients’ Goals may be Different from Clinicians’ GoalsSo…Slide Number 18Measures of knowledge, skills and confidenceAll are stable and reliable with high construct and face validity��Questions: Practical utility and predictive validityPatient Activation MeasureSlide Number 22PAM ScaleA developmental scale35-45% of population are at activation level 1 or 2�People at low levels of activation tend to:People at higher levels of activation tend to:Self care behaviours and activation 1Self care behaviours and activation 2Encounters with clinicians and activation Emotional health and activationSlide Number 32Activation as a primary mediator of other outcomesPatients can be supported on a ‘journey of activation’Patients can be supported on a ‘journey of activation’ by offering tailored interventions: 1:1 or group coachingTailored health coachingPeople at lowest levels of activation gain the most from tailored interventionsPeople at activation level 4 cost 31% less than people at level 1Activation and utility across the systemThe national learning set: using the concept and the PAM at scale��Questions and challenges remainSlide Number 44Slide Number 45��Slide Number 47Cancer 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 eventSlide Number 49The Penny Brohn Whole Person Model��In 1987 Penny wrote…Slide Number 51Slide Number 52Slide Number 53Slide Number 54Slide Number 55Slide Number 56Slide Number 57Slide Number 58Slide Number 59Slide Number 60Our menu of Interventions�Slide Number 62Slide Number 63Slide Number 64Slide Number 65Slide Number 66Slide Number 67Slide Number 68Slide Number 69Slide Number 70Slide Number 71Slide Number 72- IMPORTANT –�we can’t self-manage everything Slide Number 74Slide Number 75Slide Number 76Slide Number 77Slide Number 78Client experiencesThank YouSlide Number 81��Our regional partners�Regional TimelineSlide Number 85Hull DemographicsSlide Number 87Slide Number 88Our shared passionRecognising diverse local needsOur self-care menuEngagementSlide Number 93ChallengesEmerging Solutions in HullClaire Musgreave��Living Well Engagement Co-ordinator & Living Well Facilitator�Slide Number 97Slide Number 98Slide Number 99Local point of contactDrop in SessionsSlide Number 102Slide Number 103Slide Number 104Slide Number 105Slide Number 106Slide Number 107Slide Number 108Our Vison for the FutureDr Helen Seers��Research Fellow�Service Evaluation – Hull & East RidingService Evaluation – Hull & East RidingService Evaluation – Hull & East RidingService Evaluation – Hull & East RidingService Evaluation – Hull & East RidingService Evaluation – Hull & East RidingService Evaluation – Hull & East RidingService Evaluation – Hull & East RidingService Evaluation – Hull & East RidingService Evaluation – Hull & East RidingLiving Well PAM dataLiving Well PAM dataService Evaluation – Hull & East RidingSlide Number 124Slide Number 125