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Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
Building a Spectrum of Support for Carers of People with MND
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Building a Spectrum of Support for Carers of People with MND

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  • Client groups for MNDAs include Their families and carers Health professionals Carers are often the main vehicle of care for pwMND PwMND may not want to look into the future and anticipate need Carers need education to anticipate need and strategies to manage increasing diability
  • Transcript

    • 1. Building a Spectrum of Support for Carers of People with MND Anita Richter Coordinator of Special Projects/Carers Services Carol Birks Manager of Family Support Services
    • 2. Introduction
      • Partnerships to support the needs of carers
        • Help to sustain care at home
        • Optimise quality of life for:
          • the carer
          • the person with MND
        • Support from diagnosis to bereavement
      • Using funded programs to increase capacity
    • 3. Background
      • Carers are a distinct client group
      • Information and education helps carers to:
        • Learn strategies to manage increasing disability
        • Anticipate need
        • Plan ahead
        • Navigate service provision system
        • Sustain care at home
        • Minimise sense of isolation
    • 4. Background
      • Emotional support
        • Share ideas and feelings
        • Reduce emotional isolation
        • Beyond the scope of:
          • regular support group
          • informal carers groups
          • generic carers groups
    • 5. New South Wales Area of NSW 800,642 sq.kms Population 6.8 million MNDA NSW supports 340 pwMND Wollongong Newcastle Sydney Australian Capital Territory
    • 6. Existing Resources Family Support
      • Regional Advisors (RAs) - 6 in 2006
          • Phone follow up
          • Home visits, field trips
          • Referral to care providers/ education/advocacy
      • Info-line
      • Equipment Loan
      • Newly diagnosed evenings
      • Regular support groups
          • 13 in NSW and 1 in ACT
          • Educational meetings
    • 7. Opportunities
      • Small one-off pockets of funding
      • Building blocks to build capacity
        • Develop new programs
        • Learn new skills
        • Develop information
        • Develop educational modules
    • 8. Carers Workshops NSW Health Care for Carers Funding, 2000
      • Carers Workshops
          • 4 week, full day course
          • Educational component
          • Emotional component
      • Benefits of workshops
          • Bonding
          • Education provides ‘permission’ to attend
          • Carers experience respite
          • Service providers learn about carers needs
    • 9. Carers Kit NSW Health Care for Carers Funding, 2000
    • 10. Link and Learn Program NSW Health Carers Funding (2), 2005
      • Access to core service for regional carers
          • Three regions of NSW over three years
      • Two day residential workshop
      • Six week one hour telephone group sessions
      • Focus on self care and pampering
      Wollongong Wollongong Newcastle Young
    • 11. Link and Learn Building Capacity
      • Carers workshops
          • Modified – 2 days
          • Education module developed
      • Carers Kit
          • Used for information
      • Training in Tele-group counselling
          • For family support staff
          • Can be used for new programs
    • 12. Volunteer Visitors Program Australian Government Funding, 2003
      • Regional project
      • MND training for volunteers
      • Help support Quality of Life
      • Carers kit used to develop
        • manual
        • education module
      • Available to:
        • all MND Associations
        • palliative care volunteers
      • Developed bereavement protocol and flyer
    • 13. Support for Past Carers
      • Bereavement support group
        • Annual
      • Past carers groups
      • Twelve month card
      • For the future
          • Extend services
          • Volunteer support
          • Extend Tele-link support
          • Support for young families
      • Bereavement letter
      • Bereavement flyer
        • Helps to normalise grief experience
        • Lists support resources available
      • Phone follow-up
    • 14. Take home message
      • Reduce impact of MND on family/carers
          • Awareness of carers needs
          • Reduce emotional isolation
          • Provide education
          • Support from diagnosis and beyond bereavement
      • Service providers can help
          • Adequate/proactive level of service provision
          • Education
          • Demonstration of care techniques/equipment
          • Domiciliary visits
          • Adequate support at time of bereavement
      • Building Capacity
          • The cumulative benefit of small grants
    • 15. Link and Learn – Young, NSW “ I met some very nice people and we all got on great. It was really good to be able to talk with people who are going through and have the same feeling as you do, and to know you are normal.” “ MNDA staff were great facilitators and ran the course with such sensitivity and empathy that despite some of the tough issues we were discussing, I felt protected yet more confident as a carer.” “ I came away from the program feeling not as isolated in my role as carer, far more informed and very aware of the need to look after myself as well as my husband.”
    • 16. References
      • Adams RM, Tunna KH, Ellis J, Birmingham UK , 2000, Abstract from the Proceedings of the 11th International ALS/MND Symposium, Denmark
      • Ageing and Disability Department (ADD), work prepared by Barbara Murphy, (1999). Literature Review Relevant to Carer’ Framework.
      • Carroll-Thomas S, Cote-Grimes S, Litepo J, Payette L, Pepin P Ridgeway N, Ottawa Rehabilitation Centre, Canada , 2000, ALS/MND: Caring for the Caregiver, abstract from the Proceedings of the 11 th International ALS/MND Symposium, Denmark
      • Goldstein LH, Adamson M Jeffrey L, Down K Barby T Wilson C, Leigh PN, 1998 Oct, The Psychological Impact Of MND on Patients and Carers. Journal of Neurological Sciences. 160 Suppl 1: S114-21.
      • Mockford C, Jenkinson, C & Fitzpatrick RA , A Review: Carers, MND and service provision, Amyotrophic Lateral Sclerosis, 2006:7
      • Rabkin JG, Wagner GJ and Del Bene M , 2000, Resilience and Distress Among Amyotrophic Lateral sclerosis Patients and Caregivers; Psychosomatic Medicine 62:271-279
      • Ramirez A, Addington-Hall J, Richards M, 1998, The Carers: ABC of Palliative Care: Clinical Review, British Medical Journal, Vol 316, pp 208 -211

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