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Respecting lived experience – caring for people with disabilities in Western Australia

Published on 07 Jul, 2022 | Return|


When the Western Australia HealthPathways team developed a pathway for caring for people with disabilities, they drew on lived experience and existing connections.

“Three people in our HealthPathways team have children with disabilities,” says Dr Sue Jackson, Senior Clinical Editor and Regional Group Clinical Advisor.

“We were already involved with local disability networks and we knew from both feedback and our own experience in general practice how hard it can be to navigate the health system. Either personally or through family members, we know what it’s like to be bounced around,” she says.

“Our knowledge of the challenges and links to the disability sector gave us the motivation to start the project, and broaden the focus beyond the clinical to one that takes in the needs of the whole person. Our stakeholders want that holistic view, where GPs support people with disabilities based on what they need overall. It’s so important to ask questions like “What does your life look like?” “Are you engaging socially?” “Is your accommodation, OK?” “What do you need to live a good life?”

“This approach helps a practitioner identify what services will benefit a person, and supports achieving better outcomes for a person through the NDIS (National Disability Insurance Scheme) reports. Our pathway takes a similar approach to the Mackay Autism Spectrum pathways - let’s look at the person, let’s look at the family, let’s look at what the family and the person need.”

A challenging process


Working with such a large and diverse stakeholder group is very worthwhile, but does bring challenges, explains Stef Colquhoun, HealthPathways Team Leader.

“Connecting widely builds a broader perspective into the pathway, but is also a lot of work. Many people were involved over many drafts, with much to include, and lots of differing opinions,” she says.

The team managed this process with a series of stakeholder workshops. In total, 40 to 50 people were involved in the two working groups of consumers, families (including parents and carers), and SMEs.

“We threw all our staff at it, dividing stakeholders into groups, each with a scribe and a facilitator. Each table had a topic to discuss before we came back together, and an overall facilitator ran the session,” says Sue.

“Having people from our team at each table ensured that participants felt heard and supported in a safe environment. It’s also important from a PHN perspective to have robust policies in place to help you engage well and respectfully, such as being able to pay participants for their time, and look after them appropriately,” adds Stef.

Local disability network members also assisted with reviewing drafts of the pathway content, which were widely shared. Due to existing relationships between the Western Australia HealthPathways team and the local Department of Health, draft content is regularly shared with up to 2000 people. HealthPathways Coordinators Sue Gedeon and Olivia Catchick were supported by local disability network members Fiona Payne and Steph Coates. Hospital liaison GP Jacquie Garten-Smith also provided valuable insight, as did neurodevelopmental researcher Rachel Skoss. 

“Sharing drafts this widely ensures good representation from the public health sector and leads to robust pathways, but we do need to manage the feedback process carefully. We guide subject matter experts to focus on the content, rather than the wording. If they want to change something, they need to back it up with research or a reliable information source,” says Sue.

Another challenge was the need to build a request page comprehensive enough for local clinicians, with links to reliable and relevant resources. The Disability Gateway website, managed by the Department of Health and already well used by the local disability community, met the criteria. This also meant that national and state policy would continue to be reflected in the pathway, explains Stef.

Evaluation and impacts


While the pathway launch event was put on hold due to COVID-19 work, the team promoted the pathway at a disability education session at Perth’s Fiona Stanley Hospital, and produced a poster to promote it. The pathway was also highlighted on the team’s HealthPathways homepage, supported by articles in GP Connect, the local PHN newsletter, and other PHN resources Practice Assist, and Practice Connect

Despite not being able to hold a full launch, it’s clear the pathway is already having an influence in the wider local health community. 

“The main outcome we’ve seen so far is strengthened relationships between our HealthPathways team and other players in the disability sector. When you have team members including clinical editors sitting at workshop tables, it demonstrates a high degree of commitment. Our stakeholders now really recognise the value of HealthPathways and want to work with us more. Since the pathway went live, we’ve been invited to sit on various disability trials, looking at barriers for people with disabilities to transition out of hospital more quickly and easily,” says Sue.

“Right from the beginning, we were aware that this first pathway was only part of a bigger suite. As soon as we’d finished the disability pathway, they [the stakeholder group] were asking Now what about intellectual disability?” 

Key learnings and next steps


Thinking about advice for other HealthPathways teams, the main thing is to keep an open mind, says Stef.

“Listen to what your stakeholders need, and be prepared to develop your pathway around that, rather than having a preconceived idea and trying to make it fit. Be open to the conversation, collect the information, then build your pathway accordingly.” 

With future work signalled by the stakeholder group, the Western Australia HealthPathways team are now ready to put what they have learned into practice with the next pathways on the list.

“We’ve got the building blocks now, so with our next piece of work, and when we come to review the pathways, we can be more targeted, we know more about what we need to find out from our stakeholders. I think our next conversations will probably go up a tier,” says Sue.

“We’re also getting more consistency across the suite of pathways, getting the same engagement from the same organisations,” explains Stef. 

Another clinical editor in the team has recently taken a similar workshop approach to developing a transgender pathway.

“They just opened it up to everyone to get the information, and that workshop was pretty awesome. We’re looking forward to sharing the story about that one too, when our Transgender and Gender Diverse Health pathway goes live,” says Sue.

More information

To find out more about the Western Australia Care of patients with Disabilities pathway or HealthPathways in Western Australia, please email health.pathways@wapha.org.au 

If you have any other questions about this update, please have a chat with your lead writer.


Acknowledging the work of Dr Sue Jackson

We’d like to acknowledge the work of Dr Sue Jackson, a long-term clinical editor with the Western Australia HealthPathways team. 

Sue retired from her roles in general practice and HealthPathways at the end of June 2022. During her time as a member of the HealthPathways Community, Sue wore many hats. In early 2018, Streamliners invited Sue to work as the Regional Group Clinical Advisor for Western Australia, Northern Territory, and South Australia. During this time she was a great support for the local HealthPathways community in advocating for the unique challenges faced by these teams, supporting populations across such a vast geography. 

As the first RGCA for the region, Sue defined the challenges and supported the solutions. Some of the many significant projects she contributed to include the community CPD (Continuing Professional Development) resources in HealthPathways Online Help, the international Anaphylaxis collaboration, the particularly challenging and ongoing COVID-19 response, the TGA drug name changes project, and of course the Autism and Disability projects. 

We wish Sue the very best for the next phase of life with family and friends.

Find out more about HealthPathways

If you’d like to know more about HealthPathways, or if your health jurisdiction hasn’t yet joined the HealthPathways Community please:

  • See HealthPathways Global for an overview 
  • Email info@healthpathwaysglobal.org or phone:
    • Within the United Kingdom: +44 20 3519 1964
    • Within Australia: +61 7 3559 2744
    • Within New Zealand: +64 3 595 2830