Building a Spectrum of Support for Carers of People

with MND

Anita Richter Coordinator of Special Projects/Carers Services

Carol BirksManager of Family Support Services

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

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

Background

Emotional support– Share ideas and feelings– Reduce emotional isolation– Beyond the scope of:

• regular support group • informal carers groups• generic carers groups

Area of NSW 800,642 sq.kms

Population 6.8 million

MNDA NSWsupports 340 pwMND

Wollongong

Newcastle

Sydney

Australian Capital

Territory

New South Wales

Existing ResourcesFamily 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

Opportunities

• Small one-off pockets of funding

• Building blocks to build capacity– Develop new programs– Learn new skills– Develop information– Develop educational modules

Carers WorkshopsNSW 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

Carers Kit NSW Health Care for Carers Funding, 2000

Link and Learn ProgramNSW 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

Link and LearnBuilding 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

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

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

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

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.”

ReferencesAdams 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 11th 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