Guest Contribution: Margaret McCulloch, President of ACT Pain Support Inc

Margaret Mcculloch is the President of Pain support ACT Inc, a grassroot, consumer based organisation that supports the over 50,000 people living with chronic pain in Canberra. Painaustralia was honoured to nominate Margaret for this year’s Lifeline Canberra Women of Spirit Award, and thrilled that Margaret was one of the exceptional finalists for the awards.

Twelveyears ago I could never have imagined myself at a “Lifeline Women of Spirit Awards” event for women who had overcome adversity and gone on to help others. 

After a knee operation my knees had become too painful to bear, my leg was burning like fire and my toes had “electric shocks”.  I was desperately seeking help, but sometimes finding disbelief or dismissal.  I was in a very dark place.  If I wanted to survive, I’d have to defeat this thing, or it would defeat me.

And so I set about tracking down the kind of help where there was empathy, listening, working together plus the medicine and exercise to help dull the pain over time.  It took years of struggle and tearful setbacks and yes, a lot of my money. But gradually I was making progress. 

I started reading and found the Draft National Pain Strategy.  I was amazed -  I was not alone in my nightmare.  I was fairly typical, although I had paid to access care.  Most can’t and that seemed shocking.  The facts are still that 1 in 5 people of all ages have chronic pain. Stigma, disbelief and isolation are common.  Best practice pain care is clear, but only 1 in 100 gain access to it and the damage is profound.  Anxiety and depression are massive and suicide is 2-3 times the rate of others.  This situation costs Australia $139 billion yearly, which could be reduced. 

I had not found a support group in Canberra, so I set out to find others.   I advertised, and 15 of us started out.  Nine years on, Pain Support ACT has transformed and grown hugely, helping people with phone and other support, information, advocacy and special events.  It is now joining forces with Arthritis ACT and CEO Rebecca Davey to make one large and effective group helping ACT people living with chronic pain.

Any venture needs many hands and many have come forward to help.  Suzanne Newnham and Janne Graham have been key people among many. Young people like Liam Miller make a contribution and gain experience.  Others like Barbie Robinson and Richard Scherer provide their great pro bono expertise.  Then there are organisations like Health Care Consumers’ Association and groups like the Shiny Bum Singers with Donna O’Brien who have given much.  And family, friends – the list goes on. 

Painaustralia has been outstanding in gaining recognition for people living in pain and so I offer a huge thank you to CEO Carol Bennett and all at Painaustralia.  And not least, thank you to Lifeline for the empathy and care you give so many– and what a great event!

Margaret McCulloch