District steps up for patients with intellectual disabilities

October 2020

District offers support for patients with intellectual disabilities

Shaun Martin is determined not to return to hospital.

"I kept on pressing the buzzer [to call a nurse] every five minutes because I was very anxious and nervous. Not to mention scared.

"It was challenging for me. I don't ever want to be a patient in a hospital again so, whatever information James gives me, I always follow," he said.

Shaun's referring to James Courtney, a Clinical Nurse Consultant from Sydney Local Health District's Chronic and Complex Care Program, who's working with him to help achieve his health goals.

"Care doesn't end when a patient leaves hospital. We care for them in their homes too.

"We empower patients to look at solutions to their care needs and we work with them to implement those care options. They have to be long term, sustainable options that keep people safer, healthier, and happier in their own home," James said.

James first visited Shaun, who was recovering from a partial foot amputation, at his home in Redfern last year. Shaun also has multiple other chronic care needs. And, during further visits, James realised Shaun may have an undiagnosed developmental disability.

He sought advice from Dr Alexis Berry, a Staff Specialist in Rehabilitation Medicine for the District's Disability Assessment and Rehabilitation Team for Young People (DARTYP).

She also works for the District's Specialised Team for Intellectual Disability Sydney, or STrIDeS, which was set up earlier this year to better address the health needs of people with an intellectual disability and improve their access to services.

Evidence shows that people with an intellectual disability have a higher prevalence of physical and mental conditions, higher levels of morbidity and have lower life expectancies than the rest of the population.

It's estimated 6000 people who live in the District have an intellectual disability.

"When Shaun was in hospital, he was provided with exemplary medical care. But he was often agitated or distressed and nurses struggled to support him.

"His mild intellectual disability and autism weren't identified during his admission. It had an impact on his experience in hospital," Dr Berry said.

Once he was diagnosed, Dr Berry and James put supports in place for Shaun's second hospital admission, outpatient medical care and at his home.

"We thought about how to best help Shaun ahead of his next hospital visit. We wanted to ensure he'd remain engaged with the health care system," James said.

This time Shaun had a better hospital experience, with doctors and nurses able to tailor his health care to his specific needs by providing a short, simple explanation of his operation and extra time for him to ask questions.

"That was good. I can't concentrate on the same thing for too long. It's better to talk about one thing briefly then switch to another. An explanation is easier for me rather than writing it down.

"The important thing to learn is to simply describe things in a way that I can understand. If I don't understand I might have to ask them to repeat themselves if I don't get it," Shaun said.

He was also admitted early for the routine procedure, accommodated in a single room and loaned a radio, DVD player and clock.

"In the hospital setting, it can be challenging to recognise and understand the needs of a patient living with an intellectual disability," Dr Berry said.

"If a doctor or a nurse sees a patient who is struggling to engage, they can refer them to STrIDeS. It's our job to support the patient and to help doctors and nurses better understand how to manage their care during their hospital stay," she said.

Shaun's health and wellbeing is now greatly improved.

The DARTYP team has helped to arrange medical and allied health referrals to address his needs including diabetes management, occupational therapy, a vision test, a renal review and a dental appointment.

Shaun also has further support via the National Disability Insurance Scheme (NDIS) with carers helping him with domestic cleaning, shopping, meal preparation, medication compliance and transport to medical appointments.

"He has really flourished in the past 18-months. Our services worked together to improve Shaun's quality of life, meet his health care needs and address the gaps in support. It really proves the worth of these types of programs," James said.