In Good Company is a new Leap in! series sharing the real stories of organisations, foundations, charities and not-for-profits doing meaningful work across the disability community.
It’s a chance to shine a light on the people, programs and partnerships making a difference every day and to better understand the role they play in supporting people with disability, families and communities.
National Amputee Awareness Week runs from 4 to 11 October.
For this edition of In Good Company, we spoke with Amputees NSW CEO Darrel Sparke about life beyond surgery and rehabilitation and the value of connecting with someone who has been through something similar.
Quick take – Amputees NSW.
- Everyday support for people with limb loss and limb difference – information and guidance over the phone, in person and through community programs and activities
- Connection for teenagers – AMP CAMP gives young people with limb loss and limb difference their first chance to meet someone who gets it
- Advocacy for the community – working with health professionals, government and other organisations to improve support and services
- Resources across borders – teaming up with interstate organisations so people can find help closer to home.
More than the clinical side of amputation.
For someone facing an amputation or adjusting to limb loss, there can be a lot to take in. Clinical teams play an important role in surgery, rehabilitation and prosthetic care, but the practical questions often continue long after you leave hospital.
Darrel describes Amputees NSW as a community of people who are further ahead in their journey, people who have already faced many of the questions and hurdles someone else may be about to encounter.
He calls it a kind of “pocket library”, drawing on real-world experience rather than information alone.
“You know that they’re not just going to be there as a resource but also as a support structure.”
That can mean working through a practical question, finding the right service or talking something over with someone who has faced it before.
Every person’s experience is different, but Darrel says that kind of connection matters.
“It’s a very lonely road if you’re the only person who has your particular characteristics and you feel incredibly isolated.”
Amputees NSW helps create opportunities for people to connect and ask practical questions. Its support line is answered by people with significant experience in this space, rather than a general call centre.
AMP CAMP: Connecting young people.
One of the best examples of what connection can mean is AMP CAMP. The program has been running for more than 15 years and brings teenagers with limb loss and limb difference together from across Australia.
For some, it is the first time they have spent time with someone their own age who has had a similar experience. Darrel describes watching teenagers swap tips about everyday things, including two young people showing each other different ways to tie their shoelaces with one hand.
One story has stayed with him. A 14-year-old boy came to AMP CAMP having never met another young person his age with an amputation. After camp, his mum called Darrel in tears. Her son had come home and told her:
“Mum, I don’t want you to be upset with me, but I think I just found my other family.”
Years later, he is still in touch with some of the young people he met there.
For Darrel, that is what AMP CAMP can offer: A chance for young people to meet others, share what they know and build connections that can continue well beyond camp.
From hospital back into everyday life.
Amputees NSW also works with hospitals, health professionals, government and other community organisations. Darrel says clinical care can be excellent, but the move from hospital and rehabilitation back into everyday life is not always simple.
He talks about a “care cliff” or “knowledge cliff”, where someone may leave a highly supported medical environment and suddenly have much more to work out on their own.
Darrel says this is often where a community like Amputees NSW can help – someone to turn to when a new question comes up and there is no longer a clinical team on hand.
When that support is there, he says, people can get back to the things that matter to them – work, sport, family life or spending time with friends. It makes a massive difference.
Useful Amputees NSW resources.
- Latest news: Information about the organisation, services and community programs
- Counselling and referral: Peer support, information and referral pathways
- Children and family programs: Programs and information for children, young people and families
- AMP CAMP: A national peer connection program for teenagers with limb loss and limb difference
- National Amputee Awareness Week: Information and resources for the annual awareness week.
Darrel’s experience: The everyday side of using a prosthesis.
Darrel wants more people to understand that getting a prosthesis is not the end of the story. A prosthesis needs to fit closely and work with a body that can change from day to day.
Something as small as friction inside a socket can damage skin and make wearing the prosthesis painful or impossible for a while. Changes in swelling or the shape of the residual limb can also affect how well it fits.
When a prosthesis cannot be worn, the impact goes beyond walking. For Darrel, it can affect whether he can drive, get to work, pick up his children or take part in everyday activities.
Those are the kinds of practical realities that are easy to miss if you have never had to think about them.
They are also the kinds of things someone with first-hand experience can help explain.
Amputee organisations around Australia.
Amputees NSW works closely with other amputee and limb difference organisations around Australia. Darrel says local connection matters because state-based organisations often have strong knowledge of local health services, programs, and community networks.
Organisations also regularly share resources, projects and expertise across state borders when people need something that isn’t available locally.
Where to start.
- NSW: Amputees NSW
- Queensland: Amputees Queensland
- Victoria: Limbs 4 Life
- Tasmania: Tasmanian Amputee Society
- South Australia: Amputees in Touch
- Congenital and acquired hand differences: Aussie Hands.
