What is BEECHAC?
BEECHAC stands for Bladder Exstrophy, Epispadias, Cloacal Exstrophy, Hypospadias, Australian Community.
BEECHAC Inc was incorporated as an association within NSW in May 2008. Though it is incorporated in NSW it is able to represent all those involved throughout Australia. The association was established to provide a national support and advocacy group for individuals with Bladder Exstrophy, Epispadias, Cloacal Exstrophy and Hypospadias and their family and friends.
It is also an association that provides support and information for health professionals such as doctors, nurses, psychologists and researchers who are interested in finding out more about the conditions and improving their service to those with the disabilities and to their family and friends.
BEECHAC Inc also supports educators and employers and the wider public to gain more of an understanding about the complex issues related to these conditions and to assist them to develop a compassionate and caring attitude to those with the disability and their family and friends.
BEECHAC is a safe place to find reliable information and hope about these rare conditions. It is an invaluable association due to the rareness and complexity of the conditions and the paucity of information available to professionals, individuals and families of people with these conditions. BEECHAC Inc will be the first national association and will fill the void created by the level of misunderstanding and misconception that exists within the professional and general community including the actual individuals with the condition and their families.
History in Australia
Thirty years ago in Australia, if your son or daughter had one of the disabilities that BEECHAC Inc represents, it was very difficult to find any information about your child's condition, and even harder to find medical personnel who had extensive experience with these conditions. In the 1970’s in Australia, most families relied on what their general practitioners and local urologists could tell them, which often was not a lot.
General practitioners, especially, needed parents to explain to them about the condition. If the family members were lucky enough to live in a city where there was a university with a medical library, they would probably have stories to tell about how they spent hours trailing through microfiche to find out even the basics about a child's condition.
Adolescents or adults who have these conditions have had at least 30 to 40 operations, with some having up to ninety operations — more than most people can imagine! Many of these operations are not successful and either have to be repeated or a new technique tried out. Even today in Australia, there are only a few surgeons with the expertise to perform the required specialised surgical procedures successfully on a baby, child, adolescent or adult. Like thirty years ago, Australian families still have to travel interstate or long distances for consultations and operations, and children spend up to three months in hospital before then needing quality post operative care for at least another three months. In frustration, families look overseas for quality doctors especially in the USA and Britain.
A number of families and friends in Australia felt the need for a national association so that we could have a more focussed approach to achieving our aims and objectives and improving the care and support for our community.
In particular, we consider a national association will be able to:
In particular, we consider a national association will be able to:
- advocate for changes to the federal government as well as to state and territory and local governments and the wider public through health and education policy changes and increased resources
- apply for funding for research grants with the various universities and research institutes throughout Australia that conduct research into rare diseases — All the conditions represented by BEECHAC are rare and congenital. In Australia, funding for research and support for these rare conditions is low compared to other developed countries.
- provide a national voice by organising national conferences to bring together doctors, other health professionals and researchers, and other interested people and organisations to discuss, plan and work for better services for our people and develop a forum for sharing knowledge and models of best practice to help all of the people in Australia with a BEECHAC condition and their families.
Centres of excellence in each state/territory
Centres of excellence in Australia and in each state and territory will greatly improve quality care for our members. Paediatric Urologists in the United Kingdom agree that the best outcome for children born with Bladder/Cloacal Exstrophy and/or Epispadias, comes from centralised care. In the UK, services are provided at the central Manchester and Manchester Childrens University Hospitals and the Great Ormond Street Hospital in London.
· Surgeons learning from each other: We can start to develop expert care for our primary members for surgery and after care. Health professionals involved can share experiences and knowledge to improve care. Surgeons can share a positive attitude toward this challenge of sharing and learning with each other.
· Sharing of resources: Expensive resources are needed for medical tests, surgery, pre/post op care and ongoing health management. Training and equipment can be provided at centres of excellence rather than having these scarce resources unequitably scattered across multiple locations, as is the situation now.
· Assisting patients to access treatment in Australia: We hope patients in future will not feel the need to have to go overseas for operations and that Australia will have a number of expert urologists in both paediatric and adult urology.
The development of a "Whole of Life" approach
From birth to adulthood: These rare conditions require treatment and management throughout a person's entire life. For too long our primary members, who have the BEECHAC conditions, have been treated as babies, children and adolescents, by paediatricians, paediatric urologists and family members. But, once they turn 16 or 18, they must cut those long term ties to be treated by adult urologists, who often have not had experience with these rare conditions.
· Same surgeons and health professionals:Where appropriate we need doctors and other health professionals who have the skills and knowledge to treat our primary members from birth and throughout their lives to ensure increased expertise, continuity and improved quality care.
A team approach and recognition of complexity of the conditions
Team of health professionals from the start:People with the BEECHAC conditions also have needs other than those related to successful surgery. It must be recognised that a team approach is needed in all cases. The patient must be treated by a team that includes urologist, nurse, psychiatrist and psychologist to ensure the person and their family have their psychological, sexual and social issues discussed and addressed from birth onwards.
· Recognition of anxiety, stress and depression:Our primary members and their families go through incredible endurances with many operations, often 30 or 40 from birth into adulthood and sometimes up to 90. To their credit, they develop amazing resilience; but it still must be acknowledged by all involved that the patients and their families suffer from anxiety, stress and depression at various levels and atvarious times throughout their lives. There should be no stigma attached to this, but rather it shouldbe embraced; and health professionals should work closely as a team and be alert to any needs the patient or family may have.
· Taboos need to go: Because our patients have disabilities related to their bladders, ureters and genital organs, they are not discussed openly and in a positive way. Society does not want to talk about these things because it is too embarrassing; and so our people are marginalised in the health world. These issues need to be addressed, and the psychological, sexual and social issues that have been taboo need to be addressed by a team approach with attitudinal change combined increased psychological, psychosocial and psychosexual support .
Increased public awareness
With health professionals: There needs to be more public recognition of what these disabilities mean for the people who have them and for their families and friends and health professionals.
· With schools, other educational institutions and workplaces: The worlds of study and work need to change how people are treated in schools, other educational institutions and in the work place Adequate physical and psychological support need to be available in the places where we spend so much of our lives.