Hands to Hold is a support group set up to provide practical and emotional support to carers and sufferers of chronic allergic diseases and skin conditions, such as severe eczema, in order to improve their quality of life and overcome barriers created by the condition.  This group was conceived by a family that had struggled for many years in isolation, but finally received help and support from their community.  We hope that all families and individuals get real support as they need it. 

How:

Hands to Hold will provide practical support by partnering with carers and sufferers of chronic and complex allergic diseases, such as atopic eczema.  Initially, support will be in the form of providing opportunities to connect and communicate, on a real and personal basis, through support group meetings. We will be supported in our goals by Allergies & Anaphylaxis Australia, the medical community and Carers Australia (commencing with Carers Queensland).

Chronic and complex allergic disease significantly and adversely impact sufferers and their families, financially, psychologically, socially and many other aspects of quality of life.   We aim to support struggling, vulnerable and at risk sufferers (children and adults) along with their carers to assist them overcome practical and emotional barriers created by the condition. 

Although we will not provide medical advice, we will provide practical support and reduce feelings of isolation through support groups, useful information to cope with the effects of these conditions, a community structure to share experiences and encouragement, advice & assistance in relation to communicating with others (schools, healthcare providers, extended family etc) and social, educational and awareness events. 

An additional benefit, but not the primary objective, of our activities will be a contribution to public awareness and understanding of Chronic Allergic Diseases and Skin Conditions.  As we grow and listen more to our members other services and activities will be added to our mission.

Why:

There is a growing need for such a support service due to the lack of specifically targeted practical support organisations in Australia and the growing prevalence of atopic conditions and skin disorders such as eczema.  As outlined in the newly released National Allergy Strategy, “Allergic diseases are amongst the fastest growing chronic disease and public health issues in Australia, currently affecting more than 4 million Australians.  The rapid and continuing increase in the prevalence and impact of allergic diseases on the health system and the quality of life of patients and carers demands an urgent response.” 

Allergic diseases have a significant economic impact, estimated at AU $30 billion in 2005 with medication costs related to treatment of allergic rhinitis alone estimated to be $226.8 million in 2010 (reference 20 in NAS doc).  Economic cost of eczema has been vastly underestimated****

Allergic diseases can lead to absenteeism or lost productivity, poor academic performance and restricted social interaction due to the symptoms and the need to avoid certain allergens (21).

Food allergies and eczema disproportionately affect children and teenagers, impacting on their school performance, social life and general quality of life.  Allergic diseases affect not only the sufferer, but also their families in many ways. 

Studies have found the impact of moderate and severe eczema on families is significantly higher than the impact of diabeties on families….and financially we have also found the community cost of eczema is significantly higher than asthma (quote by Associate Professor John Su from ABC news article “Families suffer as eczema cases soar”.)

Due to deficiencies in access to care, as outlined in the National Allergy Strategy, many sufferers and/or their carers/family are seeking advice from alternative/unorthodox health practitioners or even advice from random individuals on social media ‘support’ forums (primarily via Facebook).  

Many adult sufferers and families with child sufferers are experiencing social isolation, anxiety, confusion and deteriorating health due to the lack of social support services specifically targeting those with complex and chronic allergic diseases.  The extent of the distress experienced by the sufferers and their carers/family are largely unknown to their health care providers and the wider community. 

Many of these sufferers feel ill equipped to communicate with the necessary parties in their life (health care providers, schools, workplaces) in order to improve their care and management.

Where & Who: The intention is to provide a national service – Australia with regionally based support workers.   Whilst it is expected that the majority of our service users will be families with young child sufferers, we aim to provide services to adult sufferers also. Initially our services will centre on support group meetings and personalised communications with members.

We expect that ascertaining the specific service needs of our service users will be a number one priority.  Our challenge will be to expand our capacity to provide intensive service to our members as our organization becomes well known. 

Vision

We will be the personalised support organisation for health professionals, patients and carers dealing with chronic allergic diseases and skin conditions such as eczema. Hands to Hold will make significant improvements to the quality of life of its members.  We have established a positive and productive working relationship with key medical specialists, nurses and relevant members of the associated organisations such as Allergy & Anaphylaxis Australia and related health and social care groups such as Carers Australia.

Mission

Partnering with carers and sufferers of Chronic Allergic Diseases and skin conditions such as eczema, in order to improve their quality of life and overcome barriers created by the condition  by providing personalised practical and emotional support within the Australian community.