Welcome to Winter!
Winter, the season of endings to make way for new beginnings. I always feel compelled to make conscious choices about what to end and what to begin. We are lucky to have the seasons to remind us to think about these things….
Although I do feel something of a hypocrite writing that as I’m actually in London and Summer is on its way…So I’m feeling confused about endings and beginnings and Summer – a time to harvest. I’ve decided to consider endings and beginnings and to focus my harvest during this English Summer on my learning.
I’ve learnt many things whilst I’ve been here this last month. I’ve been privileged to spend time with colleagues at EURORDIS – Rare Disease Europe, Genetic Alliance UK, Thalassemia UK and UNIQUE – to name a few.
What I see with the greatest of clarity is the discussion in Europe is always about health and social integration. One is never mentioned by government or support services without the other in the space of genetic, undiagnosed or rare conditions. There is absolute recognition that to positively impact quality of life, there must be equal emphasis placed on health and social needs. One is not a ‘solution’ without the other.
I’ve been inspired to find Europe in this place as I have felt that we in Australia are often focussed on improving the ‘health’ experience rather than the life experience of people with genetic, undiagnosed or rare conditions. Yes, the ‘health’ experience is critical but it’s only one of the contributors to the type of journey an individual and family can find themselves on. It is well past time that we broadened our efforts beyond care to a truly integrated, person centred approach.
On August 30th this year, the GSNV will host our second Strengthening the Support Sector event. This event will be titles ‘Collective Voice – Collective Change’, and will discuss the current models of service and support. Exploration will focus on – does the current model deliver the best outcome – a focus on health and social need, if not then how could we do it differently, what other models are available and working even better than ours, can we work together differently to change the experience of people with genetic, undiagnosed and rare conditions. Can we fundamentally change the way the sector supports to be even more effective and to reduce the frustrations and challenges.
We hope to see you on the 30th for this important discussion. You can register now at: https://gsnvstss.eventbrite.com.au
Together we are stronger
In conjunction with Disabled Winter Sport Australia (DWA), SBFV is excited to offer another ski camp this winter.
Transport, meals, all ski/adaptive equipment, as well as very talented ski guides are included in the package.
Where: Howmans Gap with skiing at Falls Creek
When: Fri 19th – Sun 21st July 2019
Cost: $150 per participant to be paid to SBFV
+ DWA membership $149
RSVP: To register interest - ph 9663 0075 or email firstname.lastname@example.org.