1. Embracing Change New Partnerships in Care Jo FowlerKathy Lee

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

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

4. 1800 132 229 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

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 Embrace end 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.

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 her retirement 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 Connecting people together in times of need HOME Hospice

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 ~~~~Add title here~~~ Homecare Palliative Care Motor Neurone Disease AssociationHOME Hospice Central Coast Case Management (COPS) Community Outreach Team: Physiotherapist Speech Pathologist Dietician Social Worker Occupational Therapist Carers NSW Neurologist General Practitioner Respiratory Physician

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

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

20. Implications for Service Providers Economies of scales Involving the community Ripple effect Out of hours Carer Support Greater connectivity 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 2291800 777 175