Spotlight on Gary Hondow

Gary Hondow is a consumer advocate, father of four, and Queensland Genomics Community Group member. He was also awarded volunteer of the year at the World Hospital Congress in 2018. Gary has devoted a lot of time to Queensland Genomics Community Group projects and initiatives. This includes the creation of the Genomics Information Toolkit, which was an idea Gary brought to the Community Group as a way of giving families accurate information about genetic testing, the different kinds of tests, and where to go for genetic and genomic testing in Queensland.

 

Getting a diagnosis for a rare disease can be a long and challenging journey. Tell us about your family’s experience.

My son Dallas was born in 2008 with a very rare disease. Like many other people around the world, before genomic testing we had eight years of different tests, and driving four hours from Bundaberg to our specialists in Brisbane close to 200 times for Dallas.

Finally we were able to get whole genome sequencing for Dallas, and his genetic specialist was able to diagnose him with Van Maldergem Syndrome 2. Dallas is one of only 12 people in the world with that diagnosis.

 

What difference did it make for you and Sharmaine to get that diagnosis for Dallas?

There are many advantages with gaining a diagnosis – we now have less trips to Brisbane and this has enabled my wife to return to work and we have been able to buy a house.

The downside is that there is less support for Dallas now. We now only have three specialists who are very responsive to all issues Dallas has and they are our local paediatric specialist, our metabolic specialist and our neurologist.

So it is great to have a diagnosis – an official label, but with such a rare condition as Dallas has, there’s not a lot of evidence for treatment so we do feel a little bit on our own with Dallas’ healthcare now that he has the diagnosis.

 

What has worked well on Dallas’ healthcare journey?

We recognise that most people were just trying to do their best for Dallas. We’ve built a really good relationship with our specialists and we work together on Dallas’ care.

We feel a part of Dallas’ care team because it’s such a rare condition – our specialists have been learning alongside us and we all share our knowledge as we go along.

For example – After getting the diagnosis – our paediatrician, and our specialist and Sharmaine and I, all worked together to reduce Dallas’ medications from 13 a day, down to 2 a day.

Being able to work in partnership with his clinicians, has felt like the health system is delivering person centred care. Without that partnership approach, Dallas would still be on those 13 daily medications needlessly.

And we’ve had the opportunity to contribute to improving hospital & healthcare policies in a whole range of areas, including improving the process for inter hospital transfers between Wide Bay and the Children’s Hospital, and the introduction of food for families at the Children’s Hospital.

The change that I’ve seen in the health system over the last 4 years is astronomical.

Single use people – one stop flyers in the health system, 99% of the time have a great experience of the health system. But it’s families like ours that live the hospital life – that is where we see the gaps in the health system. It isn’t a criticism, it’s just about being able to voice our opinion to make the health system better.

 

Along the way, what kinds of things might have made your journey easier?

The Government did fund Whole Genome Sequencing for Dallas, myself and Sharmaine – after I bailed up the Health Minister at a Community Cabinet. So it would be good if testing was funded as then the test would be more accessible.

But during our journey to get a diagnosis and afterwards, we have often felt quite alone.

So it would be good to have someone we could call for advice about what to do next, or what support groups are out there. When people get a cancer diagnosis, it seems like there is a lot more support, or people they can call for advice.

Or even just information about what the different tests are. I spoke to lots of parents in waiting rooms over the years – most of them don’t know the difference between whole genome, or whole exome, or the different kinds of genetic testing that their child had gotten.

Also I don’t know that the health system always understands how different the health system is for patients in rural areas compared to the city. Yes there is the Patient Travel Subsidy Scheme but that is just one small part of the challenges of being a rural or regional patient.

It’s hard for health administrators to see things from the perspective of someone like me, in a rural area, accessing super specialised healthcare. So I think it’s also important for the health system to have a way to take into account the perspective of patients like me and others, and what our journey has been through the health system.