Like many brothers, Sean and Connor Matthews have a list of favourite things to do when they hang out together – swimming, walking and getting strawberry milkshakes at the local Geraldton diner. But Sean is more than a brother to Connor, he’s also his carer.
Connor has cerebral palsy, which means he can’t walk or talk, and relies on his family. Initially, Connor’s care was relatively straightforward, but when he turned 18 there was a change.
“He would scream repeatedly, from five in the morning until seven at night,” Sean says. “He’d bite himself, headbutt the floor – we ended up putting a rugby helmet on him because he was hitting the ground so often.
“It was pretty rough for our family, trying to figure out what was going on with him. It was very distressing.”
The Matthews family needed to find out was causing the change. This led to two years of consultations with a revolving door of specialists, physiotherapists, occupational therapists and psychologists, as well as Connor’s regular GP and pharmacist.
They also had to take Connor to see a neurologist, which meant sitting on a long waiting list before a four-hour trip south to Perth. Each visit required preparation to ensure they had all of their documentation. Forgetting a single medical document could spell disaster.
This is what pushed the Matthews family to sign up to My Health Record. They needed a way for Connor’s information to be available to all of his healthcare providers, whether they were based in Geraldton or Perth. It also removed the administrative burden placed on Connor’s parents as primary carers.
“Before My Health Record, my parents had to have a big list of all the people Connor saw,” Sean says. “They also had to keep track of everything that was going on with him. It would take five or ten minutes to repeat his medical history every time they saw a different healthcare provider. Then they’d need to remember what each provider did or said. They were always writing notes and carrying around big folders full of information.
“Now all of these different healthcare providers access his information, especially in an emergency situation. My parents always know what’s going on with him.”
Vital information is always there
Now that Connor has a My Health Record, Sean feels more confident caring for his brother. He recalls a time, not long after Connor turned 18, when his parents were out for dinner.
“Connor started to act up and scream and headbutt the floor – more so than normal,” Sean says. “So I took him to the local hospital. But when I got there, they started asking me a lot of questions. I knew he had cerebral palsy but I didn’t know what medication he was on or what treatment he was having with his physios.
“They couldn’t run any tests because it’s impossible to try and get blood from him. In the end, it was pointless.”
Caring for Connor is a constant job, which means the family needs support from a number of different carers. An advantage of My Health Record is that Connor’s parents don’t have to worry about him – whether he’s with Sean or someone else.
“They feel comfortable knowing that if anything happens, his information is there,” Sean says. “It’s given my parents another lease on life. They get to go out on the weekends and spend time with friends while he’s with the carers, rather than being at home or worrying about him the entire time.”
For Sean, the biggest benefit is peace of mind. He can spend more time enjoying Connor’s company, rather than worrying about him.
“He likes being around people all the time,” Sean says. “He’s pretty much like all teenagers and young adults – wanting to do stuff, laugh, be stupid and play around the whole time.
“My Health Record means you don’t have to try and remember all the important health information. It’s always there in one spot.”