#msq2014 MS QUEENSLAND 2014 CONFERENCE AND AGM #msq2014 Respect. Hope. Commitment. Collaboration

#msq2014 WELCOME

#msq2014 INTRODUCING LINCOLN HOPPER CEO, MS QUEENSLAND

#msq2014 MS QUEENSLAND’S Highlights from the year Respect. Hope. Commitment. Collaboration

#msq2014

expanded service offerings and locations; increased funding towards MS research; delivered record breaking fundraising results; increased brand awareness online and in the community; achieved implementation of our IT systems project; and established and led a new sector collaboration of 10 not-for-profit agencies called the Queensland Progressive Neurological Disease Alliance – QPNDA. In Year 2 of our Strategic Plan we…

#msq2014 new Gold Coast office at Varsity Lakes for 353 people with MS; $125,000 in grants for equipment and services - $31,000 for young people; 2,140 counselling sessions to clients and family members; 9,449 occasions of physio and exercise therapy across the State; 2,080 hours of on-call support from our expanded InfoLine service; 37 education and information events for 850 clients, family, carers and healthcare professionals; 5 new ‘MS Webinars’ we held for 187 clients from all corners of the State; and we maintained our quality certification for our residential care services. Matched need with increased services

#msq2014 $339,341 contributed to Australian research; 31% increase from last year; 45% to the MS Clinic in Brisbane and 55% to MS Research Australia; 1 st instalment of 3 for the national Vitamin D Clinical Trial; began fundraising for Prof Pender’s EBV Clinical Trial for progressive MS; and we plan to invest more in research in the next few years. Investment in MS research

#msq2014 5% government funding increase through tenders; received offer of $1million in grant funding from the government with Youngcare; made a sector wide submission for NDIS readiness funding, but was unsuccessful; held forums about the impact of the NDIS on our service offerings and processes; actively participated in NDIS community-based workshops; commenced developing training tools and NDIS information resources for clients, families and carers; and began plans to incorporate NDIS considerations into future our fundraising plans. Preparing for the NDIS – 1 July 2016

#msq2014 We extend our sincere thanks to Her Excellency Governor of Queensland and Patron of MS Queensland Penelope Wensley AC (2008–14) for her valued support and strong, selfless advocacy for people living with MS in Queensland during her six year term as our Patron. Acknowledgement

#msq2014 Thank you to our Chair

#msq2014 Thank you to our Chair

#msq2014 QUESTIONS FOR LINCOLN? Please us at mslife.msqld.org.au Respect. Hope. Commitment. Collaboration

#msq2014 INTRODUCING PROF KEN PAKENHAM UQ SCHOOL OF PSYCHOLOGY

Acceptance and Mindfulness: Enhancing Resilience in People Living with MS Professor Kenneth Pakenham The University of Queensland, Australia

Acceptance and Mindfulness  Acceptance = the active and aware embrace of internal experiences without changing their frequency or form (Hayes et al, 2006)  Mindfulness = “paying attention in a particular way: on purpose, in the present moment, and non-judgementally” (Kabat ‐ Zinn, 1994)  Field and interventions studies show that acceptance and mindfulness are associated with better physical and mental health (see reviews – mindfulness: Brown et al, 2007; Keng et al, 2011; acceptance: Hayes et al, 2006; Ruiz, 2010).  Acceptance and Mindfulness strategies have been used to enhance Cognitive & Behaviour Therapy (CBT)  Referred to as the “third wave” CBTs  Two widely used and researched third wave CBTs:  Acceptance and Commitment Therapy (ACT) (Hayes, Wilson, Strosahl, 1999; 2011)  Mindfulness Based Stress Reduction (MBSR) (Kabat-Zinn, 1982; 1990)

Acceptance in MS Greater acceptance is associated with better adjustment to MS  FIELD STUDIES:  Acceptance coping (McCartney-Chalk, 2007; Pakenham, 2001; 2006)  Acceptance dimension of sense making (Pakenham, 2007; 2008)  ACT acceptance (Pakenham & Flemming, 2012; Pakenham & Samios, 2013)  INTERVENTION STUDIES:  ACT intervention Pilot (Sheppard et al, 2010)

Mindfulness in MS Greater mindfulness is associated with better adjustment to MS  FIELD STUDIES (Pakenham & Samios, 2013; Senders et al, 2014 )  INTERVENTION STUDIES (Grossman et al, 2010; Mills & Allen, 2000; Tavee et al, 2011)

Mindfulness & Acceptance Interventions: Acceptance & Commitment Therapy (ACT) Psychological Flexibility

ACT informed resiliency training : READY (Resilience for Every Day)  Targets key protective factors associated with resilience:  Positive emotions / acceptance  Cognitive flexibility  Coping strategies  Meaning  Social support

READY Model of Resilience Acceptance Coping strategies Cognitive flexibility Social support Meaning Being Thinking Feeling Doing Relations RESILIENCE

5 Life Domains Acceptance Coping strategies Cognitive flexibility Social support Meaning Being Thinking Feeling Doing Relations RESILIENCE

Protective factors Acceptance Coping strategies Cognitive flexibility Social support Meaning Being Thinking Feeling Doing Relations RESILIENCE

What is READY ?  11 x 2 hour modules delivered in group setting  Experiential activities, information giving, large/small group discussions, individual critical reflection, skills rehearsal, metaphors, homework  Workbook, CDs + READY personal plan  Modules:  Introduction to resilience and stress  Mindfulness  Acceptance  Defusion / Observer self (self-as-context)  Values/meaning  Positive emotions/pleasurable activities  Physical activity  Positive relations  Review sessions

READY Prior Research  Pilot Study (n = 18)  Burton, Pakenham & Brown (2010) Psych, Health & Med  RCT, colorectal cancer; telephone delivered (n = 410)  Hawkes, Pakenham et al. (2009) BMC Cancer  Hawkes, Chambers, Pakenham et al. (2013) Journal of Clinical Oncology  Hawkes, Chambers, Pakenham et al. (2013) Annals of Behavioral Medicine  Uncontrolled trial - people with diabetes (n = 25)  Ryan, Pakenham, Brown (2013)

READY for MS  Modified READY: 1.Introduction to resilience and stress 2.Mindfulness 3.Acceptance 4.Defusion 5.Defusion & Observer self (self-as-context) 6.Values/meaning (self-care/pleasurable activities & positive relations) 7.Review session  Booster session 5 weeks later

READY For MS  Single intervention condition with pre- & post- intervention and 3 month follow-up assessments  4 groups completed  Brisbane (Lutwyche, Dutton Park), Gold Coast, Ipswich  45 participants  Primary Outcomes:  Quality of life  Positive emotions  Distress  Secondary Outcomes:  Defusion  Values  Mindfulness  Acceptance

READY for MS: Preliminary Results (n = 36) Outcomest-valuep PRIMARY OUTCOMES Global Distress Depression Stress Anxiety ACT PROCESSES Defusion Values Acceptance Mindfulness

READY for MS: Preliminary Results  Engagement and Satisfaction :  Of the 45 participants, 6 drop-outs  80% attended all 7 sessions  Homework completion (5-point scale) Mean rating = 3.7  Helpful = 4.2  Enjoyable = 4.4  READY program helped me become more resilient = 4.1  Most would recommend the READY program to others with MS = 4.5

Mindfulness Interventions in MS  3 published mindfulness intervention studies in MS (Grossman et al, 2010; Mills & Allen, 2000; Tavee et al, 2011)  RESULTS: mindfulness training improved-  quality of life  mental health  fatigue with improvements sustained at 3- and 6-month follow ups  Findings are consistent with review of the benefits of meditation for people living with MS (Levin et al, 2014)

Mindfulness Interventions in MS  ISSUES TO BE ADDRESSED:  Duration: 8-week group programs  Brief mindfulness programs:  Can be as effective as the full-length standard programs (review Carmody & Baer, 2009)  More accessible, practical and economical  Setting: All interventions took place in hospital settings  Measurement: none measured perceived stress  Important given the association between stress and MS relapse  Mechanisms of change : 2 potential mechanisms:  Self-compassion  Acceptance

Brief Community-Based Pilot Mindfulness Intervention for People with MS (Spitzer & Pakenham)  Single intervention condition with pre- & post-intervention and 8 weeks follow-up assessments  23 people with MS recruited through MS Queensland  mean age 48.4years  91% female  78% had a diagnosis of relapsing-remitting MS  MS disease severity (self-report Physician’s Disease Steps Scale; Hohol et al, 1995):  43% mild  39% moderate  17% severe  2 dropouts

Brief Community-Based Pilot Mindfulness Intervention for People with MS (Spitzer & Pakenham)  Mindfulness Intervention:  5 x 2 hour weekly sessions  Adapted from Mindfulness Based Stress Reduction program  Formal mindfulness meditation and informal mindfulness skills training  Debriefing and discussion after every in-session mindfulness exercise  Daily home mindfulness practice of 30 minutes  Resources: CD of guided mindfulness meditations and weekly handouts.  Weekly mindfulness practice reminders

Brief Community-Based Pilot Mindfulness Intervention for People with MS (Spitzer & Pakenham) MEASURES:  Primary Outcomes:  Quality of Life (SF36)  Psychological distress:  Depression  Anxiety  Stress  Perceived stress  Fatigue  Secondary outcomes:  Mindfulness  Self-compassion  Acceptance

Primary Outcomes F-value Significant p-values Psychological Distress Global Distress Depression Anxiety Stress Perceived Stress Quality of Life Physical Health Mental Health Fatigue

Secondary Outcomes F-value Significant p-values Self-Compassion Total Self-Kindness Self –Judgement Common Humanity Isolation Mindfulness Over-identifying Acceptance Mindfulness Total Observe Describe Act with awareness Non-judgement Non-reactivity

Brief Community-Based Pilot Mindfulness Intervention for People with MS (Spitzer & Pakenham)  Participant Satisfaction:  All participants said they would recommend the program to others with MS  Most participants reported that the program was:  helpful (mean = 4.62; range = 3 – 5) and  enjoyable (mean = 4.57; range = 3 – 5) (5-point scale ranging from 1 = strongly disagree to 5 = strongly agree)

Brief Community-Based Pilot Mindfulness Intervention for People with MS (Spitzer & Pakenham)  Increased present moment awareness. (N =14)  I now take my time and use all my senses to experience life  Improved coping skills. (N=11)  I am not getting emotionally upset as much about things that I can’t control  Increased self-compassion & acceptance. (N=10)  It has helped me to learn to give myself some kindness  Changed perspective. (N=5)  it has made me awaken to some things I had my mind closed to

Conclusions  The ACT and mindfulness interventions are highly acceptable to people with MS  They offer an alternative intervention approach for increasing resilience and quality of life in people with MS  They are holistic  They deal with the realities of the illness, such as, uncertainty, unpredictability, forced losses, disability etc.  They foster important protective factors such as psychological flexibility

#msq2014 QUESTIONS FOR KEN? Please us at mslife.msqld.org.au Respect. Hope. Commitment. Collaboration

#msq2014 INTRODUCING VALMAE ROSE FUTURE BY DESIGN

#msq2014 BEING READY FOR THE NDIS Respect. Hope. Commitment. Collaboration

The National Disability Insurance Scheme  Shift from a welfare based funding model to a social insurance scheme.  A significant boost to Australia’s investment in disability support (to more than double the current investment with ongoing funding from increase to the Medicare levy).  Allocation of resources on the basis of need rather than diagnosis.  Provision of a fair, nationally consistent scheme assessment, pricing, portability).  Option of providing the resources directly to the individual.

What difference will it make?  People and their families will shift from being service-users to being customers.  Disability support will be offered in a market environment where services will need to demonstrate the value of what they do to attract and keep their customers.  Block funding will (mostly) cease to exist as most income will come from individuals who choose to use the service.  Organisations are making some changes to how they do their work to be more transparent and more focused on the individual.  Organisations are reviewing what they offer and checking that they offer services that are good value for money, giving good outcomes, and allowing them to stay viable.

Workforce implications  The disability workforce overall will need to grow significantly so job opportunities should increase.  Workers will need to become more flexible in how they work with people so variety in the work will increase.  Over time, roles, skill requirements, and working arrangements may change to accommodate a more individualised approach to working with people.  The focus will be on individualised support that maximises social and economic participation, rather than on program delivery so language may change.

Getting access to the NDIS  Access Checker  Have a disability  Be under 65 years old  Be an Australian resident.  Planning Process  Work with a planner  Dreams, goals, supports needed  Decide on who will manage the funds and deliver the services.

Supports provided  Reasonable and necessary supports (as outlined in the Plan).  Aids, equipment, home and vehicle mods.  Personal care, community access, respite, specialist accommodation.  Domestic assistance, transport assistance, therapies.  Guide and assistance dogs, case management and coordination.  Specialist employment services, crisis/emergency support.

How is Qld progressing?  Your life your choice  Changes to state legislation  Ready for transition  Participant readiness and organisational readiness projects have started  3 NDIA employees – Ray & Fiona in Brisbane and Suzie in Townsville

What have we learned from the trials?  Plenty of detail on about performance of the system in trial locationswww.ndis.gov.au  Tensions around pricing of supports  Planning takes longer than anticipated  Uptake on self-management is slow  The more prepared people are before they enter the planning process the better!

How can we prepare?  Stay well informed and keep talking and learning about the NDIS  Stay in touch with NDS and your other peak bodies  Get to know the new NDIA employees  Start imagining and planning for the future (and don’t feel constrained or discouraged)

#msq2014 QUESTIONS FOR VALMAE? Please us at mslife.msqld.org.au Respect. Hope. Commitment. Collaboration

#msq2014 THANK YOU for attending