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FAMILIES AND  CARERS
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 experiences in submissions to Carer Payment (child) Review Taskforce. Read of the experience of 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 their Service Directory portal and Fact Sheets for finance information and advice.


AUSTRALIAN FAMILY AND CARER SUPPORT SERVICES

Carers Australia  www.carersaustralia.com.au
Unit 1/16 Napier Close, Deakin ACT 2600 - Phone 02 6122 9900 Fax 02 6122 9999
or caa@carersaustralia.com.au or find 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) Joint Australian, State & Territory Government Initiative
    For domestic assistance, personal care as well as professional allied health care and nursing services to support older Australians, younger people with a disability and their carers, to be more independent at home.
  • 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 assistance for carers - with cleaning, personal care, shopping and carer respite.
  • Commonwealth Carer Resource Centre - 1800 242 636 Information, referrals to services or carer kits - emotional support and counselling programs.
  • Commonwealth Carelink Services - 1800 052 222 or www.carelink.com.au
  • Telephone Interpreter Service - 13 14 50

Australian Patient Assisted Travel Scheme (PATS) state information
Isolated Patient Travel and Accommodation Assistance Scheme (IPTAAS)
Patients travelling to the city for treatment may be eligible for a government scheme to provide financial assistance for travel and accommodation expenses. Patients may be unaware of their eligibility for this support. This scheme has a different name in each State and Territory: See links and more extensive detail and state weblinks, on our 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. A list of available resources can be attained from each State and Territory cancer organisation or local hospital.

Australian Consumer Reference Weblinks

Australian CKD Renal Health Networks - Government

International Kidney Patient Associations and Charters

Australian state based consumer advocacy websites

Regional and Rural Australia

Other helpful links of interest to our kidney community


Wellness issues and Chronic Kidney Disease (CKD)

See also our related pages - under Measure Up with CKD
Measure Up with healthy eating I Measure Up with physical activity I Measure Up and wellness

People with CKD and those who care for them can have a range of emotional responses: shock, sadness, grief, fear, anger, frustration, feeling down, tense or alone. Some losses may seem relatively trivial - like limiting social engagements or shifting housework to a partner - yet these can be important and may signal changes in relationships such as greater dependence. Many people also talk about grieving for their previous health, abilities and life before CKD. Mental health problems may develop because:

  • adapting to CKD is stressful - for the individual and family members
  • we may feel our body and general situation are out of control, and there is nothing that we can do
  • we feel lonely and isolated from family and friends
  • it can be difficult to talk about the illness - we don't want to worry or upset those close to us.

For some, the emotional impact can feel overwhelming. It can leave us very anxious and depressed. It can stop us from doing our usual things we need to do and taking pleasure in things we usually enjoy. Depression and anxiety are very common with CKD. They can appear in people affected and in those who care about them, through all stages of CKD - from diagnosis to dialysis, following transplantation and even in deciding not to start or withdraw from dialysis. These feelings are normal and while unsettling, we can learn new coping skills and develop relationships with individuals who can provide support.

Depression and anxiety disorders are treatable - learning to understand them and how they are treated - especially things you can do to manage symptoms is a powerful start on your road to recovery. Recovery means that you will be among the many people living with CKD who have been through this experience and lead productive satisfying lives.

Emotional and Wellness Resources

Support Helplines

  • Beyond Blue National Australian Depression Initiative 1300 224 636  
  • Life Goes On HOPELINE 24 hour support 1300 364 673 - when you need someone to talk to who can lift you out of despair and inspire you to carry on
  • Lifeline 13 11 14 for 24-hour crisis telephone counseling
  • Medicine Line 1300 888 763 Independent pharmacist advice (9am-6pm M-F)
    • Tools and Tips on wise use of your medicine, medimate, medicine name finder
  • Men's Line Australia 7 day a week service for men with family and relationship difficulties 1300 789 978
  • National Palliative Care Service Online directory - for palliative and end-of-life care services
  • Palliative Care Information Service 1800 772 273 (9-5; M-F) Australian free phone, emotional and counselling support, to individuals affected by life-limiting or terminal illness
  • SANE Helpline 1800 18 SANE (7263) SANE Australia Pfizer Report - Depression and Chronic Illness
  • Suicide Call Back Service Freecall - short to medium term support for people at risk of suicide, their carers and those bereaved by suicide. Extensive list of online related services and websites
    • Suicide Call Back Referral Line - 1300 659 467 (staffed 10am to 8:30pm, 7 days). If calling outside these hours leave a message - you will contact you the next day. It is not a crisis line

UPDATED 11 JANUARY 2012

Documents Minimize
  TitleSize (Kb)Created DateDescription
pdf Supportive Care for Kidney Disease1,726.6124/08/2010Info for patients, carers and their families
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  The material contained on this site does not constitute medical advice. It is intended for information purposes only. Published by Kidney Health Australia. Privacy Policy. For information about website content please contact the National Communications Manager.

© 2008 Kidney Health Australia

Last updated: Feb 2012.