A word with… Tricia Parker

“Being at the table and representing the people whose voices aren’t always heard, is a privilege for me.”

Health Consumer Representative

 

Tricia is an experienced health consumer representative in South Western Sydney who can look back on an almost 30-year career representing patient, carers, their families and the local community to make health services better. We talked to her about what has changed, what has stayed the same and why she has decided to take a step back from her consumer representative commitments. 

 

 

How did you become a health consumer representative?

In 2002, my dad died in an Acute Care Facility, and he didn’t receive good care. As his carer, I wasn’t listened to but ignored. At that time, I’d been a South West Sydney Local Health District (SWSLHD) Palliative Care Volunteer for nine years and I knew what a ‘good death’ looked like.

So, I wrote a letter after he died which ended up on the desk of the General Manager (GM). I offered to come and speak with the staff of that ward, so I could tell them about my dad’s experience and let them know how they could have done things differently. In my mind, if nobody tells them how their ‘care’ impacts patients and carers, they won’t have an opportunity for change. The GM said no. I couldn’t speak to the staff because it would be too upsetting for them.

This was long before the National Safety & Quality Health Service Standards (2^nd edition) ‘Partnering with Consumers’ was around. As luck would have it, a new consumer group was starting up in SWSLHD and I thought I may be able to help in some small way, so I joined this group of passionate consumer change makers.

 

What – for you personally – is the most important part of your health consumer representation work?

It’s sitting on a committee alongside decision-makers and trying to make a positive difference for patients, carers and staff. As consumer reps, we build relationships with health staff over time. When we sit on a committee or take part in a round table or forum, we come prepared and we offer our expertise, we do all the reading, we’re engaged with the process, we do all the things staff members do…except we are doing this for free.

Being at the table and representing the people whose voices aren’t always heard, is a privilege for me.

 

Do you find that people in health are listening to what you and your health consumer representative colleagues have to say?

A resounding ‘yes.’ In SWSLHD, we’ve worked incredibly hard to build strong relationships with the Chief Executive, the LHD Executive, the facility General Managers (GMs) and the staff. Having their total support has helped us with the work we do. Beginning this ‘new’ Consumer & Community Participation (CCP) Network from scratch in 2002, we’ve grown up together.

As the Chair of the Bankstown CCP Network, I’m able to email or phone the GM, Peter Rophail, and he is always willing to discuss any matter with me. The GM knows that I wouldn’t contact him unless I felt it was important. This exemplary behaviour from the top has been extremely helpful in encouraging all staff to work with consumers in a positive, constructive way.

Consumer reps are also completely supported by the District CCP Manager, Lynda Johnston and we each have a facility CCP Manager too. For me, at Bankstown, that person is Denise Abboud. These two people have supported me so well in everything I’ve done, they are simply amazing.

 

What project you have worked on as a health consumer representative are you most proud of and why?

Oh my goodness there have been many over the past 19 years, here are a few that stand out in my mind:

• In 2013, SWSLHD consumers began raising health literacy as an important issue long before the LHD thought it was ‘a thing’ and it’s still an ongoing focus.
• In 2014, the Consumer & Community Council (the LHD peak consumer committee) called for a Discharge Planning/Transfer of Care workshop. Highlighting this issue helped change the way Discharge/Transfer of Care is managed throughout the LHD.
• In March 2015, Bankstown CCP Network members began lobbying Bankstown Hospital Executive and the LHD to employ a full-time designated Aged Care Clinical Nurse Consultant for Bankstown Hospital. Nine months after we put a compelling case forward, they employed one – a brilliant outcome. That same month, I was invited by the Australian Commission on Safety and Quality in Health Care to be part of the committee to develop the new Comprehensive Care Standard 5. I was proud to be part of this fantastic committee for six years.
• In 2017, 2018 & 2019, the Bankstown CCP Network held Community Open Forums inviting the local community to come and meet CCP Network members and Hospital Executives. They could find out all about consumer involvement and ask the Executives questions. These Open Forums were a wonderful way to introduce the community to what’s happening at their local Hospital and ask questions.
• In August 2018, I was invited to present my mother’s patient story at Grand Rounds and I participated in the excellent discussion that happened afterwards with senior clinicians. This was the first time a consumer was invited to speak at Grand Rounds at Bankstown.
• In December 2019, the CCC held an information Forum for all SWSLHD staff on the new Comprehensive Care Standard 5. We felt health staff could understand this Standard better. We invited guest speakers from the Commission, the hospital board, consumers and staff. The feedback was excellent.
• Anthony Brown invited me to speak at the Health Consumers NSW Graduate Certificate Course in Consumer Participation many times and I love all the wonderful questions and meaningful discussions that follow from participants.
• In 2020, I was proud to be invited to be part of the Health Consumers NSW Consumer Leaders Taskforce. Health Consumers NSW established the Consumer Leaders Taskforce to bring experienced consumer leaders together, gather feedback and share this knowledge broadly across NSW Health entities and networks in response to Covid-19.

 

What an impressive list, Tricia! What is the biggest piece of advice you would give to somebody who is just starting out becoming a health consumer rep?

Firstly, I would say ‘well done for wanting to help’. Then, I’d suggest they ask for a buddy, someone who has a bit more experience as a consumer rep whom they can ask questions and generally get help with interpreting the ins and outs of health. Nineteen years ago, when I first started, I didn’t come from a health background, so I was gobsmacked at how complex it was. A lot simply didn’t make any sense to me, and, if I’m honest, sometimes, even now, I still think that.

Next, I would let a new consumer rep know that you need a lot of patience, things take time in health…sometimes you can be working on something for years, so don’t give up.

When they are on a committee, I would advise them to be professional, be as prepared for the meeting as they can, be on time and don’t be scared of speaking up when the occasion arises, don’t waffle, keep to the and finally and importantly, I’d tell them to be themselves and enjoy the experience.

 

I heard you are about to retire from representative work, looking back at your 28-year volunteering to make health services better, what are the highs and lows?

In SWSLHD, I’ve been incredibly blessed to work with and learn from the most awesome consumers you’d ever hope to meet, they give their all for their community. I’ve also been so fortunate to work with the most amazing staff who show me every day, by the work they do and the way they do it, how much they care about their patients.

I’ve been lucky to have been around long enough to witness the many changes in health, and it’s been incredible. From 28 years ago, when end-of-life care was fobbed off to Palliative Care Teams, to today, where every facility has an end-of-life care coordinator.

Compare 19 years ago when, as my dad’s carer, I couldn’t get a whole ward of health staff to listen to me, to now, when patients and carers are partners in their own care and it’s written into the National Standards. Back then, I wasn’t permitted to tell staff my dad’s patient story because it would be too upsetting for them, compared to 2018 being invited to speak at Grand Rounds.

Clinicians, staff and the executive now know us and trust us, and this trust creates a wonderful space for open robust discussions, differing opinions and most of all, respect.  When you have the patient and carers at the centre of care, you get a fabulous LHD. SWSLHD rocks! Consumers have come such a long way and I’ve been lucky to have played a small part in the change.

I’m now tapering my committee involvement to spend more time with my family. There were a couple of times this year where my extended family had some health issues (nothing serious) and I wasn’t as free as I’d like to help out. So, I thought it’s no good for me to try to help strangers if I’m not able to help the people I love.

I’ve loved being a consumer rep. I’ve met fabulous people, had brilliant discussions, have gone into battle and still came out friends…who would have known 28 years ago that this would turn out to be my life’s work.

 

Thank you so much for this interview, Tricia!

 

You can contact the SWSLHD community and consumer participation team by emailing the Manager, Lynda Johnston:  lynda.johnston@health.nsw.gov.au or calling (02) 8738 5783.