A Final Hurrah! Time For Change

helenHello there diabetes friends. A lot has been happening around these parts. As you may remember, our last grant for our online counselling services ended in July last year. For the past 12 months we have once again operated solely as volunteers, as we have done many times in the past 15 years, since I started Diabetes Counselling Online.

At the end of this last grant, we made the decision to stop offering free e mail counselling, as many of you were  wanting to stay within the Facebook groups, supported by each other and our little team of volunteers.

To add to this, we were no longer able to support our team financially, and our group dropped back to the original powerhouse of myself, my mum Helen Wilde, and my aunty Vivienne McKenna, along with Sally Marchini staying on as a volunteer dietitian, and our little team of passionate peer and fundraising volunteers. As the year went on, it became clear to me, and to our Board of Management, that the time had come to change directions.

As at 16 June 2016 Diabetes Counselling Online is no longer a registered Charity or Not for Profit, and is no longer providing services as a health care organisation. The website is now my personally owned blog/business and there are no longer fundraising or other charitable activities or options.

Our application to deregister the Association has been accepted. I am continuing to write the diabetes blog, when the desire takes me, and all of the resources and years of information are still available to you here.

While I write this to you with a solemn understanding of the enormity of this ending, I also write it mostly with the joy of possibility. I am not going to say I write it with a tinge of sadness, as I don’t. I write it with the great joy of knowing the difference we have made to many people’s lives over the last 15 years, and the excitement about what lies ahead.

If you do not know the history of Diabetes Counselling Online, I will tell you the story. I have lived with type 1 diabetes since 1979 when I was 12 years old. I started Diabetes Counselling Online in 2001 as a free online counselling service, supporting people all over the world living with diabetes. I left my job and took a small package, which I used to fund the services for the next 2 years. I was able to connect with some amazingly supportive people at Diabetes Australia, the most pivotal being Fiona James, who is still a dear friend today – and then “I” became a “we” as my mum and aunty joined me in developing the organisation into a not for profit, and a ground breaking service for people with diabetes all over the world, and we were able to add the fabulous Kay and Dr. Kate Marsh to our counselling team. Later, Sally, Malcolm and David joined us, creating a rounded counselling team, who worked beautifully together.

There was no social media, no guidelines as to how to operate online counselling services in Australia, and very little internationally. I remember so many people asking me “ but how do you DO online counselling?”. “Have you heard of email?” I would reply. I also remember people presuming it was only for young people living with type 1 diabetes, as the older set would not be online. My how we proved that theory wrong! With an age range of people using the service from 13 years to 85, we have experienced a real shift in the way people are using the internet, and social media has been the biggest change to occur. I started an email buddies programme to hook people up, a chat room with regular chat sessions and even some support programmes run through them, with me madly taking notes in the chat rooms, as I would work through each week’s session – it was mind blowing!

I also started up an online discussion forum, and a stories page, and there were a few years of robust conversation until Facebook took over.

But the most important aspect of our services, across all areas, was always the sense that people had found a place where they no longer felt alone. That moment when you realise you are not the only one,  that you no longer have to suffer in silence – that has been the most powerful part of the journey for all of us.

In particular, I started Diabetes Counselling Online because I felt that more needed to be done for the wellbeing and mental health of all people with diabetes. Around that time, the world was just starting to realise that diabetes was more than just blood glucose. There started to be small movements towards looking at the person behind the disease, at understanding diabetes burn out and depression connections, and the special nature of diabetes distress.

I won an award from Novo Nordisk – the DAWN award, as the first Australasian winner of this award, and came third in the world in the international award, recognising the powerful nature of our work. I was a ground breaker in this area, and went on to win many grants and awards for my work in diabetes over the following decade. I was able to grow the organisation and we did some amazing work across many years.

Topping off this journey last year I was awarded a state finalist spot in the Australian of the year awards in 2016 for this work, and a state finalist spot in the Telstra Business Woman of the Year awards, in the social good category. I also studied type 1  diabetes and pregnancy wellbeing at the PhD level and my first study has recently been published.

In 2012 I won a large Commonwealth grant that allowed us to evaluate our model, grow our services and help thousands more people than we could have otherwise. We also created some brilliant resources, including my children’s picture book – Diabetes Can’t Stop Me, and an e-book on Diabetes Burn Out. We are very grateful for this support and the team of people who came on board during the project.

The diabetes online community, and in fact the online and digital health sector in general, has now exploded, and I see people start forums, groups and websites every day for a range of health conditions. It is wonderful to see. Our little group at Diabetes Counselling Online can move to the next phase of our lives, knowing that there are now plenty of options for support out there and that this will only grow.

Over the journey we had some unbelievable support from so many volunteers, our wonderful Board members who have been strong advocates for the wellbeing of people with diabetes, and some special Ambassadors. Helen W is thanking our volunteers in this newsletter, but I would particularly like to thank her – my Mum, and the rest of my family, along with my aunty Vivienne, who have all given so much to so many, as well as supported every idea I had along the way. I would also like to personally thank Nathan and Nicole Bassett, Kate Marsh, Peter Howard, Kelly Wagner and all of the people who worked tirelessly to keep us on track and operating.

I want to say a big thank you to Professor Timothy Skinner, who believed in me from the early days and continues to work hard to ensure better psychological care for people with diabetes. Finally, I would like to thank all of you – the many, many people with diabetes, health care professionals, peers and colleagues, who believed in and supported our journey.

It has been an amazing time – we were amazing, we did amazing things, but life changes, and after 15 fabulous years, (often not easy and sometimes very very hard, but always extraordinarily rewarding) helping so many people, it is time for me to focus on my work in sustainable living, and my writing, and for others in our little team to look to spending more time doing other things.

You may know that I am also a writer and owner of the online sustainable homewares store Recycled Interiors  I am excited about the recent release of my new book about sustainable living, and the opportunities that lie ahead for me, in helping to improve the health and happiness of many people through this work, and to help improve the health of our planet.

Wishing you all nothing but happiness and peace. I am sure there is much more to come
Until we connect again, take care and thank you all once again – stay sweet

Farewell and Thanks for all the Fish..Volunteers, where would the world be without them?

by Helen Wilde

It is with some sadness that we are Farewelling the amazing Charity, Diabetes Counselling Online. Although for the immediate future, Peer Volunteers will continue to manage a Facebook page as well as a couple of closed groups, the Charity aspect has now ceased.It has been a remarkable journey.

The vision of Helen Edwards in recognising in around 2000 that the ‘new’ space, the Internet, offered opportunities for networking never seen before, has resulted in a body of work of which everyone involved can be very proud. From the earliest days, when Helen was working from home alone, setting up a website, email links, chat rooms, and forums, it was plain to see from the response that there was a need for people with all types of diabetes to find non-judgemental support which they could access from home.

Over time, Helen was able to build her website www.diabetescounselling.com.au into a unique force which became recognised world-wide. You can read her journey elsewhere. I want to focus on the team which Helen was able to gather around her. To begin with, the Diabetes Counselling Online team consisted of family members, building the website, spreading the word, helping with email counselling. Gradually others became involved, as Board members, Fund raising Volunteers, and eventually, as funds became available, as paid Health Care professionals. Then something remarkable happened. Social media. Communication became fast, free, convenient. Thousands upon thousands of people world-wide found us. The teams of Volunteers ‘stuck’, and the teams grew in number. Peer Volunteers also now help to carry the load that open, free, social media brings, that of monitoring and vetting. Amazingly, a small number of Health Care professionals also continue to Volunteer, answering questions, providing access to knowledge that they feel may be relevant.

As the Volunteer Manager, I want to acknowledge the contribution of some of the Key Volunteers over the years. In the Fund raising team, a very large number of Family members have been there when needed. First and foremost of these is the remarkable Vivienne McKenna, who has not only provided crucial support in record keeping and financial management, but also ‘been there’ at large Events such as the ‘Sweet Talk’ dinners, and also at innumerable ‘points of sales’ for Telethon tickets, as well as creating a fund raising line of jewellery, ‘Diabeadies’. Other dedicated Volunteers in the Fund raising team have included Sally Stavrinakis, Bridgett McDonald, and Margaret & Kevin McEvoy, all of whom have supported Diabetes Counselling Online by Volunteering at Events, and at the Royal Show, as well as at the Telethon House. Of course there are many, many, more, each of whom has cheerfully volunteered for a range of tasks, including allowing themselves to be ‘rostered on’ for the sometimes thankless task of selling Lottery tickets.

Our Social Media Peer Volunteer team has been supported by some amazing Health Care professionals, and our Peer Volunteers have gained a high level of skill in recognising who is a genuine applicant to join a Closed Group in Facebook, and who is merely looking to grow a business. They have also learned which questions need to be referred to a person’s own Health Care Team, and which topics and questions are useful for open discussion by peers. We want to acknowledge and thank in particular, Ian Graham, Joan Bailey, Dave Barnes, and Margaret McEvoy. These are all Key Volunteers who have continued, and indeed increased, their Voluntary work over the past 12 months, and who have offered to continue in their roles for as long as Diabetes Counselling Online remains in e space.

The last time that I wrote on this topic was just before our funding ceased, and everyone involved became a Volunteer. Here is a link to that blogpost. /give-happy-live-happy-celebrating-our-volunteers/
We don’t know what the future will bring. But we can feel a deep sense of pride in the work we have done, and a deep sense of gratitude and admiration for the Family members, Friends and Strangers who have joined together to create something unique and beautiful in the world, a Not for Profit organisation which truly had the needs of people at its heart.

Regards Helen Wilde
Volunteer Manager

Once again thank you everyone who has connected with us over the past 15 years and we will see you around still, but in a different way

with love and gratitude

Helen E, Helen W and Vivienne