‘There is no manual’: Supporting the unsung heroes of our health care system

Human Resources manager Namita Biswal with her son Yash.

“Being a mother was a role I chose for myself but being a carer was a role thrust upon me.”

Western Sydney Local Health District (WSLHD) Human Resources manager Namita Biswal is one of 850,000 volunteer carers in NSW. When she’s not at work, she’s looking after her 11-year-old son Yash.

A carer is anyone who helps and provides personal care for a family member or friend who needs assistance. This may be an adult or child with a disability, a frail older person, a person with a chronic or mental illness, or someone recovering after a long illness or accident.

WSLHD is trying to make it easier for all kinds of carers to access the support they need – see more below.

In Namita’s experience, Yash needs full-time care due to a rare genetic disorder called Pallister-Killian Syndrome (PKS).

Pallister-Killian Syndrome (PKS) is an extremely rare condition with only 150 known cases.

“This means he has profound intellectual disability, low muscle tone, difficulty with speech development, seizures, vision impairment, hearing loss and autism spectrum disorder,” Namita said.

“Initially my husband and I really struggled to understand why it happened to us and didn’t quite know what this meant, but very soon it was clear that my son would require life-long care and support.”

Namita and her husband share caring responsibilities for their son, juggling full time work and other daily responsibilities.

“Navigating through various challenges associated with my son’s disability can be tricky. There is no manual to assist us through the emotional rollercoaster, medical emergencies, health system, NDIS and so on,” Namita said.

“Being a carer is a 24/7 responsibility. It can be both exhausting and fulfilling at the same time. It has given me a different perspective on life and nothing seems too difficult or challenging any more. Being a carer has taught me to be more forgiving, thankful and patient.”

The WSLHD Patient and Carer Team recently launched a website to help cater to the needs of carers by providing better access to information, services and support.

“Carers are now able to seek information online, from their own devices before coming into hospital,” Patient and Carer Experience officer Joana Andre Garrido said.

“There is a lot of information regarding concessional parking, staying overnight,  patients meals times, help for non-English speakers, resources and support for Aboriginal carers and key contacts.”

The team has also developed a quick and easy survey to collect carer feedback and comments on their experience.

Joana said that carers make an enormous contribution to our communities and hearing about their experience will help provide WSLHD with valuable feedback.

“Feedback from family members and friends who are carers is important to us,” Joanna said.

“We want our services to meet carer expectations, or otherwise improve them as required.

“The survey only takes a couple of minutes and it will ensure that our patient experience is as good as the carer experience.”

The survey is available on all Patient Entertainment Systems, online via the link, QR codes and the WSLHD webpages.

This survey is anonymous and will not affect care or treatment in anyway. If you have any questions or queries regarding the survey please email WSLHD-PatientExperience@health.nsw.gov.au.