The Australian Health Consumer covers a broad range of issues including health financing, privacy, patient safety, quality use of medicines, clinical standards, and general practice. It provides a consumer-focused appraisal of the current and ongoing major health issues of the day and is essential reading for all those who wish to keep themselves up to date on the issues of concern to those people at the heart of the health system - health consumers.
 The Carers Storybook Around 4,000 carers described their experiences in submissions to the Carer Payment (child) Review Taskforce in 2007. This book was inspired by and is dedicated to all those families who shared their moving and powerful stories through these submissions and captures the experiences of 19 carers whose children have a severe disability, medical condition or terminal illness. These families share their challenges, from the initial diagnosis to the complexities of living day-to-day. Printed copies of the booklet can be obtained by phoning 1800 050 009 (a free call except from mobile or pay phones) and quoting product number - FACSIA 0770.0801
Pfizer Australia Health Report - Carers This report was commissioned to provide independent research for Carers Australia, to investigate attitudes of carers in the Australian community and how the role impacts their lives. Published July 2004.
The Working Carers Support Gateway project aims to provide information and support to low income and isolated carers who are juggling both caring and workplace demands. The website offers a range of resources to provide support on the run to busy carers. This is a new service initiative developed by the Disability and Aged Information Service Inc (DAISI) based in Lismore NSW in partnership with NSW Health under its Carer’s Program.
Renal Support Program
If you and your family need more help at home as time goes on the following are some services that may be of assistance when choosing supportive care. It is important to note community services can be limited and all will have a small cost involved. Your health care team or Social Worker can give you further information and these services may be helpful.
- Home Care Service - 1800 350 792
Long term assistance for patients, carers and families. They can provide assistance with cleaning, personal care, grocery shopping and carer respite.
- Department of Veterans Affairs Home Care - 1300 550 450
Long term assistance provided to veterans, war widows or widowers. They can provide assistance with cleaning, personal care, grocery shopping and carer respite. To receive this service, you have to receive
a pension from the Department of Veterans Affairs.
- Commonwealth Carer Respite Centre -1800 059 059 *freecall from local phone - mobile call rates apply
Short term emergency assistance for carers. They can provide assistance with cleaning, personal care, grocery shopping and carer respite.
- Commonwealth Carer Resource Centre - 1800 242 636
Information, referrals to other services or carer support kits. They provide emotional support and counselling programs.
- Private Nursing
Professional nursing services at home for a fee. A list of contact details can also be provided by your Social Worker or the Yellow Pages.
See other contact information for various Family and Carer Support Services at bottom of page
Australian Family and Carer Support Services
Assistance, information and support is available to carers of children with disabilities, or severe medical conditions from these organisations:
Carers Australia - www.carersaustralia.com.au
National Office
PO Box 73, Deakin West ACT 2600
Unit 1, 16 Napier Close, Deakin ACT 2600
Ph: 02 6122 9900 Fax: 02 6122 9999 or caa@carersaustralia.com.au
Other important resources and information can be gained from:
To be eligible, your patient must have a chronic medical condition and complex care needs and their oral health must be impacting on, or likely to impact on, their general health.A chronic medical condition is one that has been or is likely to be present for at least six months. It may include, but is not limited to, conditions such as asthma, cancer, cardiovascular illness, diabetes mellitus, arthritis, mental illness, musculoskeletal conditions and stroke.
Complex care needs means that your patient is receiving ongoing care from a multidisciplinary team, which includes their GP and at least two other health care providers.In practice, this means the patient will need to be managed by their GP under certain care plans. For most people this involves the preparation of a GP Management Plan and Team Care Arrangements. For residents of aged care facilities, it involves the GP contributing to a multidisciplinary care plan prepared for the resident by the facility.
Patients should talk to their GP about whether they are eligible for these plans. If they are eligible their GP must complete the plans and bill them before the patient has their first dental service.
People with CKD and those who care about and for them can have a range of emotional responses: shock, sadness, grief, fear, anger, frustration, feeling down, tense or alone, and sometimes many of these. 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 a grieving for their previous health, abilities and their 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
- sometimes it can be difficult to talk about the illness with those close to us - we don't want to worry or upset them.
For some, the emotional impact can feel overwhelming. It can leave us very anxious and depressed. It can stop us from doing the things we need to do in our daily lives, and from 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 to withdraw from dialysis. These feelings are normal and it is helpful to talk about them with people who care about us. While they are unsettling, it is important to remember that each of us has the ability to learn new coping skills and develop relationships with individuals who can provide support.
Statistics tell us that:
- One in three people are at increased risk of developing Chronic Kidney Disease
- 34% of people with a chronic illness rate their quality of life as fair or poor and 61% experience depression
- Symptoms of depression are often unrecognised or confused with symptoms of other illnesses
- Mental illnesses are treatable and the vast majority recover well
- People living with chronic illness who have effective treatment for associated depression can improve control of their illness
- Approximately 2 million Australians may be affected by early-stage kidney disease and don't know it
- 11.3% of all deaths in Australia are due to, or associated with, kidney failure
- Every day, five Australians commence expensive dialysis or transplantation to stay alive
- Three million Australians will experience a major depressive illness during their lifetime
- 17% of Australians (more than 3.5 million) experience depression or anxiety each year
Depression and anxiety disorders are treatable, and learning to understand them and how they are treated - especially things you can do to manage symptoms yourself - is a powerful way to start on the road to recovery. Recovery means that you will be among the many people living with CKD who have been through this experience and are leading productive and satisfying lives.
Why are mental health problems more common among people living with CKD? Depression and anxiety are medical conditions. As with many other conditions, some people are born with a genetic disposition to developing them. And certain things - for example, stress or other life events - can then trigger the onset of symptoms.
Adjusting to, and coping with all the changes that accompany CKD bring ongoing stress that can build up over time. Certain events are also particularly stressful, and you may be more likely to develop depression or anxiety at these times - such as at diagnosis, beginning treatment, after a transplant or when taking certain medications. People you have got to know during treatment may become very unwell or die. Coping with other medical problems such as skin cancers or high blood pressure, or dealing with relationship break-ups or job loss can also be stressful triggers. The presence of these stresses is probably the most common reason for poor mental health in people with kidney disease.
- Beyond Blue National Australian Depression Initiative 1300 224 636
- Chapter 12 - Getting the most out of life from KHA's Living with Kidney Failure
- Chapter 13 - Sexuality, intimacy and fertility from KHA's Living with Kidney Failure
- DaVita Highly recommended USA site - CKD, emotional health and wellbeing - sexuality, anger, depression, holiday blues, caregiver stress, sleep, positive thinking, etc.
- Health Management Plan for End Stage Kidney Disease Renal Resource Centre Australia
- Just the Facts: Dealing with Depression also in Spanish
- Kidney Quiz Online Challenge your friends, how much do they know about their kidneys
- Kids Helpline 1800 551 800 Free confidential, phone counselling service (5-25 yrs in Australia)
- Life Goes On HOPELINE 24 hour support 1300 364 673 - There are times, often after hours, 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
- Maintaining a Health Sex Life Renal Resource Centre Australia
- 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
- 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
- Participate in Health (Australian) useful information for health consumers inc. 22 page guide
- Pfizer Australia Health Reports Use search term 'kidney' for find links to:- Diabetes I Depression and Chronic Illness I Healthy Kidneys I Transplantation and Organ Donation
- National Palliative Care Service Directory Online directory for palliative and end-of-life care services
- Rehabilitation & Exercise for Renal Patients Renal Resource Centre Australia
- SANE Helpline 1800 18 SANE (7263)
- SANE Australia Pfizer Report - Depression and Chronic Illness
- SANE Mind and Body Initiative
-
Suicide Call Back Service Freecall - short to medium term support for people at risk of suicide, their carers and those bereaved by suicide. Suicide Call Back Service Referral Line 1300 659 467 staffed 10am to 8:30pm (EST) 7 days. If calling outside these hours leave a message and team will contact you the next day. It is not a crisis line Click here for 24 hour support services
Other helpful links of interest to our kidney community
Updated 10 July 2010 |