Valuing patient opinion

Claire Watts (centre) with Central Gippsland Health Service community network officer Jude Deedman (left) and director of community Mandy Pusmucans (right).
Claire Watts (centre) with Central Gippsland Health Service community network officer Jude Deedman (left) and director of community Mandy Pusmucans (right).

FOR many people, the death of someone close to them is unfamiliar.

There is no text book which says what to do when confronted by a loved one's death, what decisions to make or how they should feel.

So when Claire Watts was confronted by a medical team of eight people at Sale hospital in 2014, who asked her to make decisions about her elderly father's deteriorating health, she was bewildered.

Her emotions were mixed shock, anger, sadness and frustration at what she later said was a lack of support and empathy for her family.

"During this whole process, no-one was deliberately unkind," Ms Watts said.

"(But) what still distresses us as a family is that we were utterly left on our own, amidst all the hospital busy-ness, to try to understand and manage the dying of our much loved dad and husband.

"We need hospital staff to communicate, to take the initiative to offer some guidance, services or resources to help family through the process, to take the time to personally talk with us and tell us that our loved one is dying."

So 14 months later, when Ms Watts and her elderly mother, Barb Pritchard of Sale, were still struggling with what happened, she did something about it.

Ms Watts wrote her story on a website called 'Patient Opinion', where people can write anonymously about their experiences with hospitals and health services.

What she didn't realise at the time was that anonymous post, which has had 1600 views, put in action a series of events that not only included an apology from Central Gippsland Health Service, but positive steps taken by the service to ensure no-one else ever has a similar experience.

Recently, Ms Watts travelled from Sydney, where she lives, to speak at the launch by CGHS of Patient Opinion.

The national platform has growing membership from hospitals and health services throughout Australia. While the platform is well used in Queensland and Western Australia, it is only now being picked up in Victoria.

CGHS is the ninth Victorian health service to join and only the second in regional Victoria.

By doing so, it makes a commitment to respond quickly to any comments, positive and negative. The process, including eventual resolution, is transparent for all to see.

Because at the time Ms Watts wrote, CGHS was not a member of Patient Opinion, CGHS chief executive Frank Evans contacted her as soon as he learned of her story and reiterated his response at the launch.

"I am so sorry. We let your father and your family down at such a sad and difficult time," Dr Evans said.

"We have learnt from this and we will learn more.

"This (experience) has opened the door to us to receive a new level of feedback which is wholly determined by the patient, not by questions we think we need to ask.

"I am confident Patient Opinion will provide us with feedback to focus our efforts on what is important to our patients. It will put our patients at the centre of our care."

CGHS community network officer Jude Deedman said the platform was not about "naming and shaming".

"It's about ensuring something positive comes out of a story," said Ms Deedman, who gave a presentation of how the new platform works to the large group of people who attended the launch, including staff and the service's many consumer advocates.

CGHS director of community Mandy Pusmucans assured Ms Watts, her mother and those at the launch, that the service's commitment to patients and their families was "not just talk".

"We're not always perfect, but we are trying," Ms Pusmucans said of measures that have been introduced to ensure Ms Watts' experiences won't happen again.

"We have excellent palliative care staff who are assisting all staff to design a ward plan for patients in these situations that best meets their needs," she said.

This involves medical staff, nurses, care coordinators, allied health staff and others.

The system is designed so it best meets patients' needs and ensures there will be a smooth transition for palliative patients.

"This experience is a humbling reminder of our privileged position," Ms Pusmucans said.

" With that privilege comes responsibility and it is no excuse to say you're busy.

"We need to provide solutions."

For Ms Watts, the service's actions have "blown her away". She said CGHS had responded "over and above" anything she could have expected.

"It's such a celebration of communication," she said.

"People generally do the best they can and there are lots of good experiences.

"But when communication isn't built in, people fall through the cracks, and our family fell through the cracks."