Why Carers Compass?
In late 2013, my father was diagnosd with a Stage 4 GBM (Gliobastoma Multiforme). Terminal Brain Cancer. Prognosis: 12-18 months. He died 9 months later.
Those 9 months were the most difficult journey my family had ever experienced. We had vowed to do everything we could to help make my father's last days as comfortable and pain-free as possible. But we had no guidelines of what to expect, what to do, who to call, or even what to ask for. The support systems we had hoped to rely on, were either unknown to us, inaccessible, unavailable or not delivered within the time frame we needed them.
In spite of this, I became my father's full-time and primary carer and advocate, negotiating the very best care, overcoming many barriers. I simply was not prepared to take "No" for an answer.
I became his voice when he could no longer speak for himself.
But there was a personal cost...
- Financial loss - I gave up work, put my consulting business on hold and used up all my savings.
- Emotional stress - I knew my father was dying and I was helpless in the face of it.
- Physical exhaustion - Long hours were spent dealing with, negotiating and following up with service providers to get the help we all desperately needed.
- Mental stress - With the loss of close friendships, fractured relationships and isolation, I fell into a deep depression and experienced very dark periods.
I thought I was alone.... then realised, I wasn't.
In fact, there are MILLIONS like us living this experience EVERY DAY.
Did you know ...
- There are over 2.7 million unpaid carers in Australia who struggle to get the help needed to look after their frail, aged, dying or disabled loved ones?
- Over 856,000 of these are primary carers. Of these - two thirds are women.
- The average age? 55 years.
- Carers provided 1.9 billion hours of unpaid care in 2015.
These are the facts - statistics published by the Australian Bureau of Statistics (2015) Survey of Disability, Ageing and Carers and a report from Deloitte Access Economics (2015) The Economic Value of Informal Care in Australia 2015.
And our population is aging...
What help is there to families to help them navigate the help they need to ensure the health and well-being of their loved ones?
- Services are stretched.
- Government-based programs and assistance struggle to keep up with the demand.
- Many services are unknown, uncoordinated or inaccessible leaving families bereft and unsupported - during a time when they need it most.
So through my own experience, shared by many family carers across Australia every day, I decided that something had to be done to make it easier to care for our loved ones. And so Carers Compass was birthed.
What is Carers Compass?
Imagine you are travelling to a destination for the first time. Chances are you will use Google Maps or your GPS to get directions to your destination.
Well Carers Compass is like your own personal GPS for aged care specialist services - a platform to help you navigate products and services to help look after your aging loved one's health and well-being.
For Families looking for help: It will be a one-stop shop, that raises awareness and educates people on how to find and negotiate the best options for their aging loved ones.
So for example - your father has just been diagnosed with dementia. Would you know what to do? Who to call? How to get a plan together quickly? How to get the help you need to ensure he gets the best care? Carers Compass will guide families on how to do just that - looking at all the touch-points you will need along the care journey (as shown in the sample diagram below). We will even educate you on how to ask the right questions and evaluate different service providers so that you are making an informed choice rather than just simply guessing.
For Service Providers looking to provide help: We will be working with service providers to better understand what specialist services they can provide and how they plan to help. For example; Legal Services - getting an Enduring Power of Attorney and Enduring Guardianship in place - crucially important in an early diagnosis of dementia or or any illness that affects a loved one's mind and reasoning.
Our aim is to help families gain peace of mind in knowing that they are providing the best care options for their loved ones when it matters most. At the same time, help promote service providers that do right by their clients.
Why me and what drives me to do this?
I’ve held many roles in my corporate career – from Adult Training, Behavior Coach/Specialist to Change Manager – always with a view to help individuals and organizations adapt to change and be future ready - ie., to help support people and design support systems that allows people to be the best versions of themselves. I am a creative problem solver with an optimistic vision of a better model of care – we just need the right people, systems and business models aligned and in place so it's sustainable and can best serve the needs of the people who need help the most.
Since 2013, I have been advocating for a more human-centred model of care and the co-ordinated provision of care services that respects the choices made by the whole family. And it’s not just medical or clinical care but all those other touch-points that most people often don’t consider to be important until it’s too late.
I bring an exceptional level of compassion, depth of experience and courageous diligence in designing holistic solution that addresses the needs of many audiences to get the possible outcome for all. Some days it can certainly feel like scaling Mt Everest, but when I see families thrive when they get the right help in what can be a very difficult time in their lives, I am compelled to make Carers Compass a reality. There is a better way forward and I am determined to help families and service providers get the best possible outcome for all.
Help me to help others. I can't do this alone. Your contribution will help make a huge difference to so many lives.
Together, we can put the big C's back into the business of Caring. Courage. Compassion. Connection. Community. We are part of a new generation. The C-Generation.
Why? Because we care.