Issue 32 Summer 2017-18

Women’s and Children’s Health Network

Issue 32 Issue 32

Women’s and Children’s Health NetworkWomen’s and Children’s Health NetworkWomen’s and Children’s Health NetworkWomen’s and Children’s Health Network

Jack beats odds with help from WCH’s Maternal Fetal Medicine team

HEALTHY FOCUS2

Welcome to this edition of Healthy Focus, which contains a range of stories highlighting the exciting and innovative work the Women’s and Children’s Health Network (WCHN) is doing in providing a large variety of health care services to South Australians.

I feel honoured to have the opportunity as Acting Chief Executive Officer to lead this organisation through an important time of change, and continue the wonderful work Naomi Dwyer did over her three and half years as CEO.

The provision of health care to another human being is a special privilege because it is so personal, and involves deep trust.

WCHN takes this special trust seriously, and is committed to delivering exceptional care, every time.

Over the last three years, we have been embarking on a significant cultural transformation, which has, at its heart, the activation of the consumer voice in how services are planned, delivered and reviewed.

Co-designed with our consumers, the WCHN Person and Family Centred Care Charter – and all the priority actions that have evolved from this promise to consumers – places the needs of consumers at the centre of actions and decision-making, so that their experience of care responds genuinely to their needs.

‘The WCHN Person and Family Centred Care Charter … places the needs of consumers at the centre of actions and decision-making.’

Hallmarks of this exciting approach to health care include the Person and Family Centred Care Awards, to recognise staff who translate our values into everyday practice. That is, they treat consumers and families with dignity and respect, communicate information clearly and openly, actively involve them in decision making and are positive and kind.

Notably, the Awards were co-designed with consumers, and governed in partnership. The inaugural 2017 Person and Family Centred Care Staff Member of the Year was announced during Person and Family Centred Care Week at WCHN (18-22 September), which showcased and celebrated this focus. Jo Pugliese, Play Therapist in the Paediatric Outpatients Department, was a popular award recipient for making a positive difference to how families and children experience outpatient appointments.

Also launched during Person and Family Centred Care Week was the WCHN Volunteer Strategy 2017-2027. The strategy offers WCHN’s vision, mission and strategic direction to engage meaningfully with the community, providing a blueprint to enable better planning, design and delivery of care and services that meet the diverse needs of the people who use them.

The strategy was co-designed with WCHN volunteers, consumers, community and staff, and informed by international best practice and learnings from high-performing peers.

Our journey of consumer and community engagement has enabled our consumers to see first-hand our authentic efforts to engage with them, consider their views and show that we care by enacting change to improve our services.

We made a promise to our consumers that we would show that we care, and we’ve been able to deliver on that promise. Person and Family Centred Care is now solidly hardwired into the Women’s and Children’s Health Network’s DNA.

For more on WCHN’s Person and Family Centred Care charter visit http://www.wch.sa.gov.au/support/consumer/pfcc_charter.html

Lisa Lynch Acting Chief Executive Officer

From the Acting Chief Executive O�cer

Our strategic goals are to:

> Provide quality health care to our patients, clients, and communities.

> Provide effective systems and processes to support delivery of our health services.

> Manage resources and infrastructure to best meet health needs.

> Build and support our people, culture and capability.

Healthy Focus is the official newsletter of the Women’s and Children’s

Health Network and is produced by the Corporate Communications unit. 72 King William Road,

NORTH ADELAIDE 5006

Editor: Tim Boord tim.boord@sa.gov.auContributors: Charmaine Newton, Bianca Liersch, Tim Boord Photography: : Tim Boord, Christopher Sprod, Meg Hansen, Claire Magliulo (CountryMade; Images by Claire), Shutterstock, 123RF.Design: Studio Alumni

To receive Healthy Focus electronically, visit http://wch.sa.gov.au/media/publications.html and subscribe.

© Department for Health and Ageing, Government of South Australia. All rights reserved.

Our cover: Jess Ruciack with son Jack, who was born with a congenital diaphragmatic hernia and Kathy Lynch Maternal Fetal Medicine Associate Midwifery Unit Manager. Picture: Tim Boord

2 HEALTHY FOCUS

From the Chief Executive O�cer

In September, we launched the Women’s and Children’s Health Network (WCHN) Consumer and Community Engagement and Responsiveness Strategy.

It marked a key point in the evolution of our Health Network, and we publicly made a commitment to improve our relationships with our consumers and the community at large.

What we are saying to the South Australian community is that not only are we committed to delivering safe, quality health services, but that this process is not a one-way street. Our strategy is about building and enhancing partnerships, which recognise that our consumers and the community are central to what we do and how we do it.

By investing considerable time and resources in creating this strategy, the WCHN is looking to engage with our core stakeholders in a meaningful, respectful and purposeful way.

In developing the strategy we want to embed and strengthen effective engagement into our culture so we can meet the needs of our consumers and the community, and also achieve the National Safety and Quality Health Service Standards.

The principles, strategic goals and strategic actions it contains are based on an extensive consultation, a literature review to capture the best evidence to support our way forward, an analysis of other strategy documents, taking the learnings from high-performing health services in Australia and hosting a consensus conference to capture critical input from consumers and staff involved in the Consumer and Community Engagement Project Advisory Group.

Through this we make a very serious pledge to allow for our decisions to be authentically informed by the needs and aspirations of the people we serve.

You might ask how can we improve on what is already a very good service?

My answer is that if you stop seeking to improve, you will eventually find yourself going backwards.

And the best way of improving is through listening and genuinely caring about what people have to say, caring about their lived experience, and tailoring our professional knowledge and skills to ensuring we can deliver what our community wants and expects.

Theodore Roosevelt, the 26th President of the United States said: “People don’t care how much you know until they know how much you care.”

And that is what true engagement is about, caring about what your communities of interest think.

This goal is clearly captured in one of the key principles for engagement we have identified – namely empathy – or walking in another’s shoes.

This strategy will guide us over the next three years, but there has already been a flurry of activity, which is helping to set the foundation for the successful implementation of the strategy, including the establishment of a Consumer Register, which now boasts more than 100 members and is constantly growing.

Work has also begun on the consumer governance structure for the strategy; including an innovative youth advisory group and a patient feedback and improvement citizen jury, which I will chair.

I would like to thank everyone who provided input into, or were involved in the development of the strategy and implementation plan.

Our Manager, Consumer and Community Engagement Allan Ball often says that to do things differently, we need to think differently. This strategy and implementation plan marks a real paradigm shift in our approach to engaging with our consumers and the wider community and it’s a journey I’m really looking forward to.

To read the Consumer and Community Engagement and Responsiveness Strategy go to www.wch.sa.gov.au/support/consumer

Naomi Dwyer Chief Executive Officer

Women’s and Children’s Health Network

HEALTHY

FOCUS

Healthy Focus is the official newsletter of the Women’s and Children’s Health Network and is produced by the Media and Communications unit. 72 King William Road, NORTH ADELAIDE 5006

Editor: Tim Boord tim.boord@health.sa.gov.au Contributors: Charmaine Newton, Sheryl Klingner Photography: Tim Boord Design: Paul Barrow Graphic Design

© Department for Health and Ageing, Government of South Australia. All rights reserved.

Our strategic goals are to:

> Provide quality health care to our patients, clients, and communities.

> Provide effective systems and processes to support delivery of our health services.

> Manage resources and infrastructure to best meet health needs.

> Build and support our people, culture and capability.

www.ausgol.gov.au/creative-commons

“If you stop seeking to improve, you will eventually find yourself

going backwards.”

Our Cover: 7-year-old Adelaide boy Gary Wanganeen became the first child in Australia to undergo an auto islet transplantation operation, which was conducted at the Women’s and Children’s Hospital. Read his story on pages 10-12.

HF

www.ausgol.gov.au/creative-commons

Women’s and Children’s Health Network

Issue 32 Summer 2017-18

Women’s and Children’s Health Network

Issue 32 Issue 32

Women’s and Children’s Health NetworkWomen’s and Children’s Health NetworkWomen’s and Children’s Health NetworkWomen’s and Children’s Health Network

Jack beats odds with help from WCH’s Maternal Fetal Medicine team

FOCUSHEALTHY

From left: Ella McDougall, Nerida Saunders, Melissa Cadzow, Presiding Member Margaret Wallace, Mark Buckerfield, Neil Wigg and Helen Marshall

3 HEALTHY FOCUS

On 1 July 2017 a new WCHN Health Advisory Council (Governing Council) was appointed for the Women’s and Children’s Health Network.

The new council includes re-appointees Nerida Saunders, Melissa Cadzow, Mark Buckerfield, Neil Wigg and Margaret Wallace as Presiding Member.

We also welcome new members, Helen Marshall a senior medical practitioner and researcher with

extensive experience in child and public health, and Ella McDougall who has a background in corporate governance and corporate law, with particular skills in assisting organisations with strategic development and risk management.

This Council members offer an exceptional blend of expertise, skills and knowledge to guide, support and advise WCHN.

New WCHN Governing Council appointed

NEWS

Huddle time

HEALTHY FOCUS4

HOSPITAL REFORM

WCHN leaders meet for one of the afternoon huddles to discuss hospital access and flow strategies.

5 HEALTHY FOCUS

A more coordinated approach to managing patient flow and bed capacity in an effort to improve the consumer journey from admission to discharge has been introduced at the Women’s and Children’s Hospital (WCH).

The WCHN Access and Flow Strategy is a whole-of-network approach, which follows the Patient Flow Management Framework, launched in October 2016. The aim of the strategy is to provide a platform for the standardisation of practices and processes that support daily patient capacity and demand management.

In addition, twice daily executive-led ‘Network Capacity Huddles’ are held so issues can be canvassed by key hospital personnel, and high- level decisions made in real time.

“The huddles run for 10 to15 minutes at 10am and 3.30pm each week day, with teleconferences held over the weekend,” said Sally Milsom, Women’s and Children’s Health Network (WCHN) Interim Access and Flow Coordinator.

“Each huddle has a standard agenda, with at least one of the Heath Network’s executive team attending to be briefed about the current capacity of the hospital as well as any other issues that may impact on services.

“We also discuss potential activity as well as booked admissions for the following day to ensure there is capacity and smoother access to WCHN services for our families.”

Senior staff from WCHN’s Women’s and Babies, Paediatric Medicine and Surgical Services, Child and Adolescent Mental Health Service divisions, as well as SA Pharmacy, SA Pathology, SA Medical Imaging, and Spotless also attend the huddles.

“Staff are encouraged to bring issues to the table, so we can reflect on how we might improve processes. By having the right people in the room to address issues and provide advice, we are able to make informed collaborative decisions,” Sally said.

“And having the statewide shared services such as pharmacy and pathology and medical imaging as part of the meetings means we can ensure that those patients who are being discharged have everything they need such as medications.”

Dr Jenny Fereday, Executive Director Nursing & Midwifery said that Sally Milsom’s work had created a solid foundation for access and flow at WCHN.

“With the recent appointment of Monique Anninos as the Director, Access and Flow, we will further develop and refine processes, establish an Access and Flow Unit, introduce information systems to support access and flow throughout the hospital and capacity planning, and involve consumers in new initiatives to streamline planned admissions and discharges to ensure they are person and family centred,” Dr Fereday said.

HEALTHY FOCUS6

Choosing Wisely

HOSPITAL REFORM

The Women’s and Children’s Health Network has become a Champion Health Service for the Choosing Wisely Australia initiative, which aims to eliminate the use of unnecessary – and sometimes harmful – tests, treatments, and procedures within the Australian health system.

Choosing Wisely Australia encourages clinicians to re-consider treatments and medications where evidence shows they provide no benefit or may lead to harm.

This important initiative is led by Australia’s health sector colleges, societies and associations and is facilitated by NPS MedicineWise, an education service for health professional and students.

“It is incumbent on all health professionals to provide the best possible care to our consumers, while always striving to do no harm,” said Dr James Rice, WCHN’s Deputy Director, Medical Services.

“By acting as a champion for the most effective and safest practices, WCHN can contribute to important reforms towards improved health care delivery.”

Through its involvement in Choosing Wisely Australia WCHN will benefit from sharing important learnings from the large network of health care providers across Australia.

For more details visit www.choosingwisely.org.au.

Five questions to ask your doctor or other healthcare provider

Some tests, treatments and procedures provide little benefit. And in some cases, they may even cause harm. Use the 5 questions to make sure you end up with the right amount of care — not too much and not too little.

1. Do I really need this test, treatment or procedure?

Tests may help you and your doctor or other health care provider determine the problem. Treatments, such as medicines, and procedures may help to treat it.

2. What are the risks?

Will there be side effects to the test or treatment? What are the chances of getting results that aren’t accurate? Could that lead to more testing, additional treatments or another procedure?

3. Are there simpler, safer options?

Are there alternative options to treatment that could work? Lifestyle changes, such as eating healthier foods or exercising more, can be safe and effective options.

4. What happens if I don’t do anything?

Ask if your condition might get worse — or better — if you don’t have the test, treatment or procedure right away.

5. What are the costs?

Costs can be financial, emotional or a cost of your time. Where there is a cost to the community, is the cost reasonable or is there a cheaper alternative?

Source: www.choosingwisely.org.au

7 HEALTHY FOCUS

A 10-year plan has been developed to enhance the value of the volunteer workforce across the Women’s and Children’s Health Network (WCHN).

Launched in September 2017, the WCHN Volunteer Strategy 2017-2027 aims to ensure that the continuing participation of volunteers is planned, developed, valued and integrated within the organisation.

“One of the enduring qualities that makes the Women’s and Children’s Health Network so great, is the incredible contribution of our volunteers,” said Lis Brittan, Manager, Women’s and Children’s Health Network Volunteers.

“Their goodwill, dedication and expertise is firmly embedded in our culture and, as we look to the future, we must ensure that the continuing participation of volunteers is planned, developed, valued and integrated within our organisation.

This strategy is a 10-year blueprint for further integrating and strengthening volunteer engagement throughout all levels and services of WCHN, a key part of our person and family centred care philosophy.”

COMMUNITY ENGAGEMENT

Volunteer plan

HEALTHY FOCUS8

CONSUMER ENGAGEMENT

Story and picture: Tim Boord

The VerdictConsumers are directly influencing policy and practice across the Women’s and Children’s Health Network (WCHN) through an innovative model of engagement known as the Health Citizen Jury.

The Citizen Jury reviews and adjudicates on a range of topics and provides insight and commentary on the proposals and makes recommendations for their implementation.

Director, Consumer and Community Engagement Allan Ball said the WCHN Citizen’s Jury provided an opportunity for consumers to learn about an issue, deliberate together with a diverse group of their peers, and develop well-informed solutions to challenging public health concerns for the Health Network.

“It allows for consumer participation in the analysis, design and evaluation of quality improvements to meet safety and quality requirements,” Mr Ball said.

Using democratic decision-making as a core principle, the Citizen Jury aims to attract members of the local community to have a say on matters in which they previously may not have had a voice.

Issues, initiatives, and improvement suggestions are brought before the Citizen Jury for consideration on monthly basis. The jury hears from expert “witnesses” such as clinical professionals or other staff, as well as consumers of services. After weighing up all the information presented to them, the jurors make a decision

The Citizen Jury in action

9 HEALTHY FOCUS

(verdict), which is then considered for implementation by one of WCHN’s peak governance bodies, the Community Partnering Council.

Citizen juror Vikki Bedford, who has been on the jury since inception, said: “This is a unique group which analyses data or situations from all over the hospital.”

“We work with the executive team directly to ensure our verdicts are fair and achievable and we hold each situation/department accountable for any verdicts given.”

Vikki said that seeing the jury verdicts being put into action had been inspiring.

She cites the HUG (Helping U Give) initiative which, with the support of the Friends of WCH Inc, funds random acts of kindness to support consumers and families who are doing it tough as one of the highlights to come out of the citizen jury process.

“To see something from the very beginning to what it is now and the reception it received was just mind-blowing,” she said.

Other key verdicts delivered over the past year include:

• Smoke-Free WCH Campus, multimodal approach to reduce and eliminate smoking from entrances of the hospital

• Parents and caregivers to be supported to administer medication to children while in the Hospital

• Advocacy for additional supports to families accessing the hospital, such as a Family Room

• Better communication to support choice around private hospital use.

For more details about WCHN’s Health Citizen Jury contact Allan Ball on 8161 6935 or email Health.WCHNConsumerEngagement@sa.gov.au

Caring for babies before birth

The Women’s and Children’s Hospital’s Maternal Fetal Medicine Service cares for women experiencing di�cult and often life-threatening pregnancies. The Ruciacks are just one of the many families, who have been helped by this specialist team.

HEALTHY FOCUS10

COVER STORY

Story: Charmaine Newton Picture: Tim Boord

Jess and Jack Ruciack return to the WCH for a follow-up appointment with Dr Cathy Cord-Udy, who performed lifesaving surgery on the infant.

From the tranquil comfort of his pre-birth home, little Jack Ruciack at just 20 weeks’ gestation was already facing the fight of his life.

A routine scan at the 20-week mark of Jess Ruciack’s pregnancy showed Jack had a congenital diaphragmatic hernia (CDH), a tear or gap in the diaphragm – the thin muscle separating the chest from the abdomen; vital for respiration.

A hole or malformation of the diaphragm in unborn babies allows the abdominal organs to push into the chest cavity, resulting in lungs that do not form properly and are compressed.

It’s a rare birth defect, affecting about one in 2,500 babies and many don’t survive. In Jack’s case, the hernia was on the right side of his diaphragm, making his case even more exceptional.

Mum Jess and husband Craig were referred to the Women’s and Children’s Hospital’s Maternal Fetal Medicine Service, a multi-disciplinary service which provides expert diagnosis, ongoing surveillance and management for women whose pregnancies are significantly complicated.

The Ruciacks learned more about the condition and how devastating it could be.

“We were told that he might not survive either the pregnancy or the birth,” Jess said.

Congenital diaphragmatic hernias can be isolated or associated with other problems, such as malformations of other organs, abnormal chromosomes or a syndrome.

But, thankfully, the genetic test results came back clear.

Jack still faced an uphill battle. CDH babies have smaller lungs, particularly on the side of the hernia. Their lungs are less elastic, have less surface for oxygen uptake and fewer and thicker blood vessels.

While they are in the womb the babies do not need to breathe for themselves as they receive their oxygen supply from their mother through the placenta.

But at birth the lungs of a CDH baby can be so small that they are not able to receive enough oxygen and remove enough carbon dioxide. Babies need to be immediately placed on ventilation machines to take care of this process for them.

Surgery can correct the hernia and associated organ displacement, but survival depends on a number of factors, including the size of the baby’s lungs, how they are functioning, and impact on other organs.

Another risk factor for a CDH baby is a build-up of too much amniotic fluid in the womb.

Normally babies swallow amniotic fluid while in utero. CDH babies often swallow less easily because the digestive organs are not where they should be, resulting in more amniotic fluid in the womb.

This was the case for Jack. Jess faced the risk of going into labour early because of this increased fluid volume.

The Maternal Fetal Medicine Service (MFMS) team at the WCH monitored Jess and Jack carefully and closely during the pregnancy, with regular scans to measure what impact the hernia was having on Jack’s lungs and other organs.

Dr Peter Muller, Director of the MFMS, said multi-disciplinary care was required during Jess’s pregnancy, given the complexity of the abnormality, and to give Jess the best information and planning available.

MFMS led the way in developing a pathway, which included fetal ultrasound, fetal MRI and further visits with paediatric surgery and neonatology.

The specialist obstetric and neonatal team looking after the Ruciacks agreed on a natural birth. Jess was induced at 37 and a half weeks and gave birth with mixed feelings, excited but understandably anxious.

The Neonatal Intensive Care Unit team was in the delivery room and Jack was intubated immediately after birth, and taken to the Paediatric Intensive Care Unit on a respirator.

He was stabilised and three days later had life saving surgery, by paediatric surgeon Dr Cathy Cord-Udy.

“When we got the call to say the surgery was finished and that it had gone well, it was a massive relief,” Jess said.

“We felt quite positive then. He had come through two big hurdles – the birth and then the surgery – so we felt that, having overcome those, Jack would be okay.”

Jack continued to do well post surgery and just four weeks later was discharged from hospital.

His development and health will continue to be monitored as he grows, but a normal, happy life with no major, lasting problems looks likely.

“Jack should have the capacity to run around as a normal child,” Jess said.

11 HEALTHY FOCUS

“We were told that he might not survive either the pregnancy or the birth.”

Jess Ruciack

Jess and Jack return to the WCH for a follow-up appointment with Dr Cathy Cord-Udy, who performed lifesaving surgery on the infant.

MENTAL HEALTH

Story: Tim Boord Picture: Country Made; Images by Claire

Building bonds

HEALTHY FOCUS12

Young mum Jessica has been able to work through past traumas and focus on parenting daughter Kiralee through a Child Parent Psychotherapy program offered by CAMHS in her rural South Australian town

Like any mother Jessica wants the best for her daughter. She wants her to grow up in a loving environment and be given every opportunity to live a fulfilling life.

It can be a challenge for any parent, but for young people the journey can be especially di�cult as they are still negotiating their own transition into adulthood.

13 HEALTHY FOCUS

Jessica, who lives in a rural South Australia, is 17 and the mother of two-and-half-year-old Kiralee.

As much as she was happy at the prospect of becoming a mum when she found out she was pregnant, things changed after the birth of her daughter and joy turned to anxiety and “feeling down a lot of the time”.

Jessica said life was difficult before Kiralee’s birth and she had experienced a number of traumatic events in her early childhood.

“(But) I really wanted to get on top of those things to be the best parent I could be. I knew I needed some help so I could take care of Kiralee,” she said.

After Kiralee was born, Jessica was visited by a Child and Family Health Service nurse, as part of the universal home visiting scheme South Australian parents can access.

“I found this service supportive (but) they recognised I was struggling and they linked me to the Child and Adolescent Mental Health Service (CAMHS),” Jessica said.

CAMHS across the state is now building capacity to focus more on parents and their small children through a range of different therapeutic models.

One of these is child parent psychotherapy (CPP), which provides an opportunity to work with both the parent and their small child to build on their relationship, particularly when there is trauma in the parent’s past.

Emily Lowe, Acting Clinical Coordinator with the CAMHS Northern Country Service, worked successfully with Jessica in this way.

Emily presented her work in this area at the Faculty of Child and Adolescent Psychiatry 2017 Conference held in Adelaide in October.

Trauma can broadly be defined as experiences which threaten an individual’s psychological or physical wellbeing and overwhelm their coping mechanisms.

“In infants and children, traumatic experiences are frequently related to threats to their attachment relationships with their parents and their sense of security,” Emily said.

CPP is a relationship-based treatment for young children 0-5 and their caregivers, which involves developing a plan to address the challenges faced by the family.

“We then address the issues that the caregiver and child bring to treatment, which is often done through play-based intervention and creating a safe space where the caregiver can try to understand the

child’s experience and the child is allowed to process their experiences through play,” Emily said.

“The final stage of the treatment is about planning for the future, celebrating positive changes in the relationship and thinking about what the child will need as they grow.”

Jessica said working with Emily had helped her to process some of her more difficult early life experiences and the difficult times she had adjusting to being a new parent.

“I feel like I have a better understanding of myself and my vulnerabilities,” she said.

“I have improved my general parenting skills, particularly the emotional side of parenting. I feel I am more confident in myself and my role as a parent. I tend to think more positively about life in general.

“This has also impacted my life in other ways. I live independently now and have regular paid employment. This is something I wasn’t sure I would ever be able to achieve.”

Emily said that working through traumatic episodes with young parents was important to help reduce the generational impact of such experiences.

“Parents who have experienced trauma or have unresolved traumas from their own childhoods can directly impact on the ways in which they parent and relate to their own child,” she said.

“They often have more difficulty communicating and responding to emotions displayed by their children as well as in their ability to ‘hold the child in mind’ in their day-to-day interactions.

“The child’s behaviours may even act as a trigger for the parent’s trauma memories or re-experiencing of past trauma and loss.”

Emily said that through CPP, a clinician can take a holistic approach to the parent and the child, working on their relationship and addressing past traumas for them both.

“Parents and caregivers are the central part of a young child’s world. As therapists, if we can partner with the caregivers to recognise and support their strengths, the outcomes for the child are far better than trying to address the presenting concerns one-on-one with the child,” she said.

For Jessica, the support she and Kiralee have received from CAMHS has enabled her to look to the future with great hope.

“My future seems more set, happier and predictable, which is a nice place to be in,” she said.

“I feel like I have a better understanding of myself and my vulnerabilities.”

Jessica, 17

HEALTHY FOCUS14

MY STORY

Story and picture: Tim Boord

Lexi’s storyHow subsidised technology is helping children and their families better manage type 1 diabetes.

At just 10 years old, Lexi Pratt is quite philosophical.

She hates the fact that she has type 1 diabetes, but is determined that it won’t stop her from living her life.

“I find it very hard,” she said.

“I have my good days and my bad days. Some days I cry because I am struggling with being different and not being able to just run off and play without any blood glucose consequences. But most of the time I am positive … it’s not my fault I got it and I like to educate and inform people of what type 1 diabetes is. I won’t let type 1 diabetes stop me.”

The cruelty of type 1 diabetes, as Lexi’s Mum, Michelle, puts it, is that it is such a “fickle, complex disease to manage”.

As with most diagnoses of type 1 diabetes, Lexi’s emerged suddenly and unexpectedly in the summer of 2015-16.

Michelle admits she missed some of the usual signs that may indicate diabetes, such as excessive thirst, craving sweet treats, weight loss and lethargy, as it was a hot summer and the family had also just lost its beloved pet dog, so she put her daughter’s symptoms down to those factors.

It was when Lexi complained of being freezing on a 36° Celsius day, that the family knew something more serious was happening.

A trip to the Emergency Department at Lyell McEwin Hospital followed, where her symptoms were relayed to doctors who confirmed the diabetes diagnosis

with a blood glucose test. Lexi was then transferred to the Women’s and Children’s Hospital (WCH) for management of her condition.

Since that diagnosis in February 2016, Lexi and her family have endured a tedious and exhausting daily routine, including carbohydrate counting, food weighing, calculating insulin doses and checking blood glucose levels with a finger prick up to 10 times a day.

Despite her illness, Lexi continues to lead an active lifestyle, doing up to six dance lessons each week.

But because of her diabetes, exercise is never just straightforward.

“We need to question what her blood glucose level (BGL) is. If it is too high – how much insulin is needed? If it is too low – how much glucose is needed? Then it’s the balancing act of anticipating how much energy she will burn during the classes and ensuring we have calculated the right amounts to sustain her BGLs,” Michelle said.

In April 2017, the Australian Government announced that subsidised access to continuous glucose monitoring (CGM) would be available to all eligible children and young people under 21 years in Australia.

Dr Jan Fairchild, Paediatric Endocrinologist and Clinical Lead in Diabetes at WCH, said CGM measures the glucose level in the body every five minutes via a small sensor inserted under the skin, providing large amounts of glucose data

“I honestly couldn’t imagine daily life without the continuous glucose monitoring.”

Lexi Pratt’s mum Michelle

Lexi’s storymore quickly and easily than finger-prick blood glucose monitoring.

“This extra data allows families to better understand their child’s diabetes,” Dr Fairchild said.

Lexi has been able to access CGM under the subsidised program and uses it in conjunction with an insulin pump, giving her access to ongoing blood glucose information and enabling more responsive management with insulin.

“I honestly couldn’t imagine daily life without the continuous glucose monitoring,” Michelle said.

“Having an insulin pump has also helped give us back some of the freedom we had prior to Lexi’s diagnosis.”

Michelle said Lexi’s insulin pump and CGM “talk” to each other.

“If she is dropping low, we get an alarm from the pump – the same if she is trending high,” she said.

Michelle says she is very proud of how Lexi has tackled the challenge of living with type 1 diabetes and that she doesn’t let it stop her from trying new things.

“There are days we mourn the changes diabetes has brought into our lives, but whilst things aren’t as simple as they used to be, it just means we need to be more prepared and adopt forward planning,” she said.

Lexi Pratt at home with her dog Roxy

15 HEALTHY FOCUS

HEALTHY FOCUS16

OUR PEOPLE

Inaugural Person and Family Centred Care Staff Member of the Year Jo Pugliese with a young consumer.

Picture: Meg Hansen

17 HEALTHY FOCUS

Person and family centred careIn 2017, the Women’s and Children’s Health Network (WCHN) introduced a new awards program to recognise staff for the excellent work they do with consumers and families.

Known as the Person and Family Centred Care Awards, the program is overseen by consumer representatives from the Person and Family Centred Care Network Steering Group.

The awards follow the release in 2016 of the Person and Family Centred Care Charter, which makes a promise that WCHN staff will:

• Treat consumers and their families with dignity and respect

• Communicate information clearly and openly with the consumer

• Actively involve consumers in decision making, and

• Be positive and kind.

“Person and family centred care is about consciously making a positive difference to the way in which our consumers experience health care,” said WCHN Acting Chief Executive Officer Lisa Lynch.

“It is something that can be applied across all areas of our organisation – each of us can adopt a consumer focus when we go about our daily roles.”

Under the new program, staff can be nominated by consumers and other staff members for demonstrating exemplary service.

Each month, all nominated staff receive a certificate of recognition, with a monthly winner selected to be in the running for the WCHN Person and Family Centred Care Staff Member of the Year Award, announced to coincide with Person and Family Centred Care Week celebrated each September .

The inaugural Person and Family Centred Care Staff Member of the Year Award went to Jo Pugliese, the play therapist in the Paediatric Outpatients Department.

Throughout the year, Jo regularly received high praise from consumers and their families, who thanked her for making their visit to the outpatient clinics fun and less stressful.

“The respect, kindness and patience she demonstrates with children and their parents/carers helps to distract and entertain, making sometimes difficult situations much easier for the consumers and clinicians alike,” the award judges noted.

The 2017 awards were supported through sponsorship funding from Multicultural Youth South Australia to enable Jo and colleagues to hold a team-building event.

If you have experienced excellent person and family centred care from a WCHN staff member and wish to nominate them for this award, visit the WCH website (http://wch.sa.gov.au/support/consumer/pfcc_awards.html) for more details or to complete a nomination form.

New WCHN sta� awards recognise commitment to

HEALTHY FOCUS18

OUR PEOPLE

Picture: Tim Boord

Comfort ZoneRebecca May, a Registered Nurse at the Women’s and Children’s Hospital’s Neonatal Intensive Care Unit (NICU) was named the Young Professional of the Year at the Women’s and Children’s Health Network’s 2017 Service Excellence Awards. Healthy Focus spoke to Rebecca about her work in supporting families of young babies requiring palliative care and the creation of the Mayfly Room, a dedicated space for families experiencing the loss of a baby.

How long have you been working as a nurse?

I commenced work at the Women’s and Children’s Hospital as a graduate nurse in February 2008. I completed my Graduate Nurse Program in Neonatal Intensive Care and Newland Ward. Upon completing the program, I gained a full-time position in NICU.

What made you decide to specialise in neonatal nursing and, in particular, the areas of grief support and palliative care?

From a very young age I wanted to be a nurse and work with children, in particular babies. When I was eight years old I had surgery, and spent approximately a week in hospital. I recall thinking how wonderful the nurses were, and this confirmed that nursing was the career for me.

Ironically, my love for babies and children has combined with my passion and interest in palliative care. I believe it’s an incredible privilege to care for someone else’s baby and child and to support families at a time when they are at their most vulnerable.

You would have to deal with families at an extremely emotional time with very sick babies and those who lose babies. How do you support families in this time?

Providing families with information and choices is most important at this time. I don’t believe anyone embarks on their pregnancy expecting that

their baby will not survive. Although palliative care for children has become more recognised and talked about in society recently, the majority of families are not aware of what to expect and options for creating memories. Open and honest communication is extremely important. Identifying what is important to the family and what gives them meaning can assist in creating memories. Families often feel overwhelmed and need gentle reassurance and support to normalise the very difficult situation. Sometimes just being there and sitting in silence with the family provides comfort and support.

What was the impetus for creating the Mayfly Room?

The room was developed for the neonates and families. NICU is an extremely foreign and overwhelming environment and certainly out of most people’s comfort zone. Within the nursery, the staff provide 24/7 care to the neonates using high-tech equipment. While we strive to integrate the families in the care as much as possible, the majority of the care is done by staff.

The Mayfly Room was developed to provide families experiencing the loss of a baby with a private, home-like, non-clinical environment for them to spend time together throughout the palliative and end of life care process. While it has some medical equipment such as oxygen, air and suction, this is made discreet within the

“Identifying what is important to the family and what gives them meaning can assist in creating memories … Sometimes just being there and sitting in silence with the family provides comfort and support.”

Rebecca May

OUR PEOPLE

Picture: Tim Boord

Comfort Rebecca May, a Registered Nurse at the Women’s and Children’s Hospital’s Neonatal Intensive Care Unit (NICU) was named the Young Professional of the Year at the Women’s and Children’s Health Network’s 2017 Service Excellence Awards. Focus spoke to Rebecca about her work in supporting families of young babies requiring palliative care and the creation of the Mayfly Room, a dedicated space for families experiencing the loss of a baby.

How long have you been working as a nurse?

I commenced work at the Women’s and Children’s Hospital as a graduate nurse in February 2008. I completed my Graduate Nurse Program in Neonatal Intensive Care and Newland Ward. Upon completing the program, I gained a full-time position in NICU.

What made you decide to specialise in neonatal nursing and, in particular, the areas of grief support and palliative care?

From a very young age I wanted to be a nurse and work with children, in particular babies. When I was eight years old I had surgery, and spent approximately a week in hospital. I recall thinking how wonderful the nurses were, and this confirmed that nursing was the career for me.

“Identifying what is important to the family and what gives them meaning can assist in creating memories … Sometimes just

19 HEALTHY FOCUS

Comfort Zone

room. The room provides basic facilities to enable families to stay for up to 48 hours, including a sofa bed, comfortable sitting area, meal service, tea and coffee making facilities, cold cot and sibling play area. The goal of the space is to allow the families to spend private time together. Within the space there are many items to assist with memory making, including essential oils, bath and body products, music player, journals and scrapbooking supplies, camera and printer, clothing and linen and items that can be kept by the family as mementos.

What is the meaning behind the name of the Mayfly Room and how did you go about having the idea approved and funded?

The name is based on the Mayfly Day Story. Mayflies might have only one day to live, but they enjoy every moment, embrace every opportunity and have very fulfilling lives.

The room was developed with a grant received from the Women’s & Children’s Hospital Foundation (WCHF) and coordinated by the WCH Facilities Planning & Management department. In addition, the WCHF provides ongoing stocking of food and drink supplies, meal service and items to assist with memory making and supporting the families, including grief and bereavement books for siblings.

What feedback do you get from families who have used the room?

Feedback from families and staff has been extremely positive. Although it is sad when the room is utilised it is always nice to hear about the positive experiences families have had. Over time, the room has continued to evolve with new additions and items donated by bereaved families. I have been contacted by a number of families wanting to donate items to ensure the memory of their baby lives on and to support families in the future.

Rebecca May

HEALTHY FOCUS20

Aboriginal people experience some of the highest levels of ear disease and hearing loss in the world, with rates up to 10 times more than those for non-Aboriginal Australians.

Ear disease in Aboriginal people often begins within weeks of birth, has repeated episodes and can persist into adolescence and adulthood.

Ear disease and associated hearing loss also contribute to poor educational achievement, higher unemployment, and, as a consequence, can lead to greater contact with the criminal justice system later in life.

The Women’s and Children’s Health Network’s Children’s Audiology Service provides a free state-wide hearing service to children 0-18 years of age.

Over the past year, the service has partnered with the Rural Doctor’s Workforce Agency (RDWA) in its Healthy Ears-Better Hearing, Better Listening (Healthy Ears) program.

The collaboration has enabled the expansion of the Children’s Audiology Service to new locations, with audiologists now working alongside ear, nose and throat (ENT) specialists, local Aboriginal Community Controlled Health Services, general practitioners and Aboriginal health workers to help improve ear health in Aboriginal children.

Aboriginal children can now receive hearing services at the following locations:

• Adelaide Metro (Central, South and Northern Adelaide)

• Murray Bridge

• Mount Gambier

• Riverland (Berri)

• Yorke Peninsula (Point Pearce and Wallaroo)

• Port Pirie

• Port Augusta

• Whyalla

• Port Lincoln

• Ceduna

• Yalata/Oak Valley

The expansion of hearing services for Aboriginal children has meant that specialist services are now more equitable and more children have received early detection of hearing loss, intervention and health promotion, helping to reduce the health outcomes gap between Aboriginal and non-Aboriginal children.

Working under the Healthy Ears program has ensured a coordinated approach and that children can be followed up and supported locally, receiving surgery where identified and supporting overall improved outcomes.

Most importantly, this enables a consistent approach to assessing children’s ear health and hearing, and optimises the expertise of the paediatric audiologists.

The Children’s Audiology Service has valued the work it has provided to rural, remote and metropolitan Aboriginal children under the Healthy Ears program and plans for 2018 are now under way.

The Australian Government has committed to funding the Ear Surgical Support scheme for at least the next three years and the Children’s Audiology Service is an important contributor to the success of this program.

The success of the Healthy Ears program has been in the close partnership between the Children’s Audiology Service and local Community Controlled Aboriginal Health Services. This resulted in a 90% attendance rate at clinics across the year. Working alongside local GPs, local Aboriginal health workers and outreach ENT specialists resulted in holistic health assessments and seamless transitions of care from hearing loss identification to medical management.

Long-term involvement in these clinics across a broad range of services has the potential to dramatically impact the health of Aboriginal children from more remote communities.

Listen ’ear

ALLIED HEALTH

Story: Bianca Liersch, Manager, Children’s Audiology Service