Western Sydney specialists volunteer time to fill nationwide gap in disability adult care

A group of innovative Western Sydney Local Health District specialists are volunteering their own time to help fill a nationwide gap in adult care for Australian adults in with complex disabilities, trialling a “one-stop-shop” hospital clinic that provides life-saving routine checks for free.

Dr Peter Smith set up the “one-stop-shop” clinic in 2020 alongside rehabilitation physician Dr Rummana Afreen, after noticing people with complex disabilities were turning up in emergency departments with otherwise preventable conditions.

For some patients, the clinic utilises what is known as opportunistic sedation which allows patients with cerebral palsy (for example) to tolerate botox injected into their muscles to help relieve muscle stiffness.

While under, several other health professionals provide routine tests such as blood work, dental checks, scans, eye tests, ear checks, urine and bowel assessments to ensure patient health. In one case, 17 different specialty areas were involved in the care of a patient.

We saw an opportunity to provide a centralised approach to patient care,” said Dr Smith.

“Adults with severe physical and intellectual impairments are extremely vulnerable people and can present with complex health conditions that require specialised support.

“For some people with a disability, things like transportation to hospital, GP follow-up and access to specialist services may be difficult, so ongoing surveillance of blood tests, radiological procedures, dental welfare, podiatry needs, skin checks, ear nose and throat procedures, and any number routine procedures become very difficult.

“This is why services like the one-stop-shop model are so beneficial to patient care.”

At the Children’s Hospital at Westmead, clinic services such as this one already exist, but once patients turn 18 it becomes difficult to tell parents where their children (now adults) will be treated.

So far the Westmead Hospital based clinic is only running on a very limited and trial basis.

NSW Health currently provides Specialist Intellectual Disability Services (IDHS) across the state with NSW Health IDHS comprising of six specialised clinical teams which provide a comprehensive, multidisciplinary health assessment and care plan for people with an intellectual disability and complex health conditions across NSW.

The difference between the IDHS service and the one-stop-shop model is that Dr Smith’s led model is in a clinical environment, so it creates greater access for those with a disability.

“We think this would be one practical way to improve the quality of life for disabled people with disability,” explained Dr Afreen.

“We also believe that sedating any person for painful procedures, particularly in the context of someone who prima facie cannot understand the nature of their treatment, is quite simply the right thing to do.”

Both doctors would like to see this clinic model became part of mainstream practice.

“The results of the trial will be presented shortly and hopefully, the results will speak for themselves and create an example for other services and demonstrate what you can achieve without additional resources,” said Dr Afreen.

“We have a long way to go yet, but this is my hope.”