Useful information for carers or families of someone with a chronic health condition

See also our webpage Finance for advice on these subjects.

Australian Health Consumer click link
Covers issues including health financing, privacy, patient safety, quality use of medicines, clinical standards and general practice.

Carers Storybook click link
Hard copies 1800 050 009 quote product number FACSIA 0770.0801
Around 4,000 carers described their experience in submissions to Carer Payment (child) Review Taskforce. Read stories from 19 carers whose children have a severe disability, medical condition or terminal illness, from initial diagnosis to the complexities of life day-to-day.

Supportive Care for Kidney Disease click link
Published by Sydney South West Area Health Service - Eastern Zone Renal Unit
Info for Australian patients, carers and their families about supportive care. Subjects covered in this book include: Supportive Care of End Stage Kidney Disease, Kidney Disease Symptom Management and Palliative Care, Planning for your Future, Community Services. 

Working Carers Support Gateway Project click link
Resources and support for low income and busy carers juggling caring and workplace demands. Of particular interest to isolated, regional and culturally diverse carer groups note portals Indigenous Australian Working Carers and Culturally and Linguistically Diverse (CALD) Working Carers. Refer to Service Directory and Fact Sheets for finance information and advice.

Do you have an article for our Kidney News? You are invited to email suggestions for articles, advertise your event, or share your story in Kidney News. Contact editor Ali Hickerson at ali.hickerson@kidney.org.au

Register to receive our monthly Kidney News!  Email subscribe@kidney.org.au with your request and contact details to receive our monthly Kidney News, or call 1800 4 543639 - use our Kidney Community poster to spread the word.

We encourage you to email Ali Hickerson - ali.hickerson@kidney.org.au - Editor of our monthly Kidney Community News, with suggestions for articles. We would all love to hear about your path with kidney disease! 

AUSTRALIAN FAMILY AND CARER SUPPORT SERVICES

Carers Australia  
www.carersaustralia.com.au Call 02 6122 9900 or fax 02 6122 9999
caa@carersaustralia.com.au or check Carers Australia - State information

If you and your family need more help at home, the following services may be help when choosing supportive care. Your health care team or Social Worker can give further information.

• Home and Community Care Program (HACC) Australian, State & Territory Government Initiative
  Domestic assistance, personal care, professional allied health care and nursing services to support older Australians, younger people with a disability and carers to be more independent.
  
• Australian Association for Families of Children with a Disability 1800 222 660
  
• Home Care Service - 1800 350 792 Long term assistance for patients, carers and families - assistance with cleaning, personal care, grocery shopping and carer respite
  
• Department of Veterans Affairs Home Care - 1300 550 450 Long term support for eligible veterans, war widows/widowers - help with cleaning, personal care, shopping, carer respite.
  
• Commonwealth Carer Respite Centre -1800 059 059 *free local - mobile rates apply.
  Short term emergency support for carers - with cleaning, personal care, shopping and carer respite.
  
• Commonwealth Carer Resource Centre - 1800 242 636 Referrals to services or carer kits - emotional support and counseling programs.
  
• Commonwealth Carelink Services - 1800 052 222 or www.carelink.com.au
  
• Telephone Interpreter Service - 13 14 50 TTY 1800 552 152 for hearing/speech impaired

Medicare Australia - 132 011 to locate a Medicare office 

• Medicare's Allied Health Initiative Enhanced Primary Care Plans
  Chronically ill people can be managed by their GP under an Enhanced Primary Care (EPC) plan which provides Medicare rebates for allied health services (including dietitans & ancilliary services).
• Medicare - Your Health Info Site inc. info on early access to Super on specific compassionate grounds
• Chronic Disease Management (CDM) Medicare Plan for chronically ill people managed by GP
• Fact Sheet and Patient Info on access Medicare rebates for allied health services.
• Medicare Teen Dental scheme (Closed from 1 December 12 - more info here)
• Medicare Safety Net Plan - Pharmaceutical Benefits Scheme

Private Health and Chronic Disease

• Know your rights as a private patient in hospital Guide from Commonwealth Government.
• Private Health (Aust. Govt resource) - compare health insurance policies or call
  1300 737 299 - 9am - 5pm.
• Private Health Insurance Ombudsman1800 640 695
  - if you feel you have a specific complaint against a health insurer.
• Private Nursing - Professional nursing services are available to care for someone at home for a fee (to locate contact details for these services, look under Social Work in the Yellow Pages or look online

Australian Patient Assisted Travel Scheme (PATS) state information
Isolated Patient Travel and Accommodation Assistance Scheme (IPTAAS)

Patients traveling to the city for treatment may be eligible for financial assistance for travel and accommodation expenses. This scheme has a different name in each State and Territory: See KHA Finance webpage.

Patients should be advised they may need to claim in advance in some states. In some states, support is available for family members, and some states also have patient accommodation available through the cancer organisations or hospitals at reduced cost. List of available resources is available from each State and Territory cancer organisation or local hospital.

Australian Consumer Reference Weblinks

Australian CKD Renal Health Networks - Government

• New South Wales - Renal Services Network
• Northern Territory - Renal Services Network
• Queensland - Statewide Renal Health Network
• South Australia - Renal Health Network
• Tasmania - Department of Health and Human Services
• Victoria - Renal Health Clinical Network - Maintenance Renal Dialysis Program
• Western Australia - Renal Health Network

International Kidney Patient Associations and Charters

• American Association of Kidney Patients
• CEAPIR European Federation of Kidney Patients
• European Renal Patients website
• National Kidney Federation UK - CKD video 10 mins
• Principles of Care for Canadians with CKD
• Principles of optimal care of Australians with CKD Ch 14 KHA's Living with Kidney Failure  

Australian State Consumer Advocacy weblinks

• Victorian Government Health Department
  • Chronic Illness Alliance Vic
  • Consumer Utilities Advocacy Centre Vic
  • Consumer, carer and community participation and information Vic
    Victorians Participate in Health
    
• NSW Government Health Department
  
  • Disability and Aged Information Service Inc (DAISI) NSW Health Carer’s Program
    
• Queensland Government Health Department
  • Queensland Health Quality and Complaints Commission
  • Queensland Council Social Service
    
• South Australian Government Health Department
  • South Australian Health Ombudsman
  • South Tasmanian Divisions of General Practice
  • Health Consumers Alliance (SA)
    
• WA Health Consumers Council
  • WA Office of Safety and Quality in Healthcare

Regional and Rural Australia

• Health Consumers of Rural and Remote Australia
• Whose Health Is it Anyway? Commonwealth Sharing Health Care Initiative

 
or email a query to KHIS@kidney.org.au 

Our Kidney Health Information Service (KHIS line) 
Free call service for people with, or affected by, kidney and urinary disease


National Relay Service - www.relayservice.com.au - for those with hearing or speech impairment.
Use this service to connect to our KHIS line - quote 1800 4 54363 as '9' is silent for this purpose.
TTY/Voice 133 677 | Speak & Listen (SSR) 1300 555 727 I www.iprelay.com.au/call/index.aspx