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Embracing Change

Embracing Change. New Partnerships in Care. Jo Fowler. Kathy Lee. Motor Neurone Disease Association NSW. What we do. Support people with MND, their families and carers Loan equipment Home visits Education Information Telephone Service. MND NSW 1800 777 175. A New Partnership in Care.

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Embracing Change

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  1. Embracing Change New Partnerships in Care Jo Fowler Kathy Lee

  2. Motor Neurone Disease Association NSW What we do • Support people with MND, their families and carers • Loan equipment • Home visits • Education • Information Telephone Service MND NSW 1800 777 175

  3. A New Partnership in Care How did it happen?

  4. HOME Hospice • Embraces the changing needs of the community • Focuses on the carer and their changing needs • Builds the community’s capacity to care for dying people at home • Is an agent for change 1800 132 229

  5. Bridging the Gap • HOME Hospice: • Focuses on the carer’s needs • Enables Carer’s to look after their dying loved one at home until death, or for as long as possible • Provides free peer support for end of life carers • Reduces Carer isolation 1800 132 229

  6. Let’s Bring Death Back Into the Circle of Life Our Alliance: • Changes societal values around death and dying Organises seminars to increase community awareness of end of life matters • Promotes our joint pathway of carer support through presentations such as this. Embrace end of life

  7. Changing Patterns of Care • 80% of people with a terminal illness want to die at home. • 20-30% do. Ref: Cancer Institute & Cancer Council NSW Issues paper Oct 2006 “There’s no place like home”

  8. MND - A Puzzling Illness • Progressive neurological disease • Motor nerve cells (neurones) degenerate, die • Muscles for movement weaken and waste • Life expectancy is 3 to 5 years • Different types of Motor Neurone Disease • Amyotrophic Lateral Sclerosis- 65% • Progressive Bulbar Palsy 25% • The missing link is a cure

  9. Case Study 1: Susie • Susie lived in a townhouse with her husband, Paul • Their children live in Queensland • Susie’s increasing disability led to herretirement as a nurse • Diagnosed in June 2008 • Died March 2010 Symptoms of Amyotrophic Lateral Sclerosis (ALS) Wasting of right hand and forearm, foot drop, rapid weight loss, muscle twitching, loss of balance, tiredness, difficulty in swallowing, loss of function.

  10. Care Connections • Multidisciplinary Care • Physiotherapy • OT • Social Worker • Rehabilitation Specialist • Home Modification • Dietician • Carer’s NSW • Palliative Care • Sydney Home nursing • MND Clinics • Equipment • Community Options Case Management • Hydrotherapy • Palliative care • Rilutek

  11. A Pathway of Care Bringing outside care and services into the home Empowering and enabling carers and family to care at home Increasing community capacity to care for the terminally ill • Linkage to MND specialist clinics • Equipment needed: • wheelchair • shower commode • Hospital bed • Pivot hoist • Stair climber HOME Hospice Connecting people together in times of need

  12. Case Study 2: Brian • Brian was 78 and lived with his wife Sheila in a cottage on the Central Coast • Brian lost his voice (aphasic) • He was diagnosed with Progressive Bulbar Palsy in January 2010 • He died in October 2009 • Symptoms: Difficulty in breathing when lying down or on exertion, weight loss, emotional lability, increased oral secretions

  13. Managing Bulbar Symptoms Multi Disciplinary Care Bi-Level Ventilation Dietary Management Rilutek MND Specialist Clinic Communication Aids General Practitioner Speech Therapy Suction Unit Managing Oral Secretions Anti-depressants / Botox Peg Tube Neurologist Palliative Care

  14. Circle of Care Motor Neurone Disease Association HOME Hospice General Practitioner Homecare Carers NSW Respiratory Physician ~~~~Add title here~~~ • Community Outreach • Team: • Physiotherapist • Speech Pathologist • Dietician • Social Worker • Occupational Therapist PalliativeCare Neurologist Central Coast Case Management (COPS)

  15. A Carer’s Needs – The Forgotten Piece FEELINGS OF GUILT TRAPPED INSECURE INEXPERIENCE ISOLATED UNHEARD EXHAUSTED LONELINESS STRESSED DEPRESSED VULNERABLE OVERWHELMED

  16. It’s a Snug Fit

  17. How Does It All Stack Up? 40 MATCHES DURING LAST 12 MONTHS • 23 CURRENTLY BEING MENTORED • 8 DIED IN HOSPITAL • 8 DIED AT HOME • 1 WITHDREW FROM MENTORING 50% OF THOSE WHO DIED WERE AT HOME

  18. How Effective is Mentoring? Cancer Council NSW did an evaluation of mentoring in 2008-09 • 90% of respondents felt their mentor increased their confidence • 67% felt less anxious • 90% would recommend HOME Hospice Mentoring Social Ventures Australia has concluded that for every $1.00 invested in Mentoring, $3.39 in social value is created for people living with a terminal illness, their carers, communities and government

  19. Connecting Together MND NSW provides information to member about HOME Hospice HOME Hospice matches Community Mentor with Carer HOME Hospice 1800 132 229 Motor Neurone Disease Association of NSW 1800 777 175

  20. Economies of scales Involving the community Ripple effect Out of hours Carer Support Greater connectivity Implications for Service Providers New Care pathway Easily replicated Shared resources Supporting Choices Complementing existing services Filling the Gap in Carer Support

  21. New Partnerships in Care

  22. The Last Piece. Any Questions? 1800 132 229 1800 777 175

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