issue 29 winter 2016 women’s and children’s health network · issue 29 winter 2016 women’s...
TRANSCRIPT
Issue 29 Winter 2016
Women’s and Children’s Health Network
How the Barry Group is seeking to pull rank on the immune system’s police
T Cell Team
HEALTHY FOCUS2
The multiplier effect of good partnershipsHelen Keller once said: “Alone we can do so little; together we can do so much.” This philosophy is thriving in the Women’s and Children’s Health Network. We value relationships within our organisation, and we value strategic partnerships with those external to us. We believe that partnerships are the sine qua non of our ability to deliver on our promise to the community, that we will make a difference in the health outcomes of this State’s babies, children, young people and women. It is too big a challenge for a myopic and insular approach.
A commitment to these sorts of partnerships is more than a social innovation or the latest fad. High-performing health organisations across the world, are at the vanguard of a new paradigm, which identifies such partnerships as an opportunity to develop new ideas, resolve long-standing problems, unlock creativity and innovation, create synergies and improve performance.
In this edition of Healthy Focus we showcase our alliance with a research body at the frontier of discovery and translating research into practice, how we are empowering our consumers to partner with us in health care design, delivery and self-management of their health, as well as key collaborations with agencies such as the Department for Education and Child Development to deliver schooling to sick children.
The words “I can do things you cannot, you can do things I cannot; together we can do great things” are often attributed to Mother Teresa. While the provenance of the quotation is disputed the message is clear.
Each member of a partnership brings its own skills and expertise and together the partnership is greater than the sum of its parts. Our partners
bring their expertise in generating community support and philanthropy to support our work, they harness intellectual research capacity and inquiring minds to break new scientific ground to benefit our community, they provide services to our children that make a difference to their overall wellbeing and future, and they provide the voice of lived experience and their aspirations and ideas for how we can always do better.
Our cover story this edition looks at the work of Associate Professor Simon Barry, a leading expert on T cells, who we are lucky to have at the Women’s and Children’s Hospital as one of our senior research scientists. Simon and his team are investigating novel ways to tackle type 1 diabetes and also target cancers with pinpoint accuracy. His project links into the Cooperative Research Centre for Cell Therapy Manufacturing and is also supported by TeamKids/Women’s & Children’s Hospital Foundation. It is an excellent example of important work strengthened by partnerships that provide both financial and intellectual support to pursue a critical area of medical science.
Similarly, a pairing of skills has resulted in a major benefit for our hospital, with TeamKids again raising funds for much-needed medical equipment.
One of the most important and vital partnerships we are forging is with our consumers and their families. In this edition of Healthy Focus, we hear from Tanya Cheeseman, the mother of a young person who has been supported by our Child and Adolescent Mental Health Service. What is particularly significant about Tanya’s story is in finding her voice as a consumer and developing the confidence to ask questions and seek answers, she was able to become empowered and achieve some positive outcomes for her son.
This type of partnership is central to our philosophy as a Health Network. It is the way the health sector in the 21st Century will need to evolve if we are to be a leader in the care of children, young people, women and their families.
Henry Ford said coming together is a beginning, keeping together is progress, and working together is success. We have a lot of success at WCHN, thanks to our great partners.
Naomi Dwyer Chief Executive Officer
From the Chief Executive Officer
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 [email protected] 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
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 Media and Communications unit. 72 King William Road, NORTH ADELAIDE 5006
Editor: Tim Boord [email protected]: Charmaine Newton, Amanda Stewart, Bronwyn Ludlam Photography: Tim Boord, Christopher SprodDesign: Studio Alumni
© Department for Health and Ageing, Government of South Australia. All rights reserved.
Our cover: A/Professor Simon Barry and some of his team from left: Batjargal (Baggy) Gundsambuu, Tim Sadlon, Ying Wong, Veronika Bandara, Cheryl Brown and Vincent (Soon Wei) Wong are harnessing the power of special cells in the immune system to treat type 1 diabetes and target cancers. Picture: Christopher Sprod
www.ausgol.gov.au/creative-commons
Women’s and Children’s Health Network
Issue 29 Winter 2016
Women’s and Children’s Health Network
HEALTHYFOCUS
How the Barry Group is seeking to pull rank on the immune system’s police
T Cell Team
FOCUSHEALTHY
“Each member of a partnership brings its own skills and expertise and together the partnership is greater than the sum of its parts.”
The Women’s and Babies Division of the Women’s and Children’s Health Network (WCHN) was recognised in March with a prestigious 2015 Governor’s Multicultural Award.
The award in the Public Sector category was presented to the division for its role in supporting new mothers from culturally and linguistically diverse backgrounds and promoting a greater understanding of cultural diversity.
The annual awards are administered by Multicultural SA and were presented by the Governor of South Australia, His Excellency, the Honourable Hieu Van Le AO at a special ceremony at Government House on 22 March.
Bernie Cummins, Advanced Divisional Director, Midwifery and Nursing (Women’s and Babies Division), who accepted the award on behalf of her team, said that about 30% of the women who were cared for by her division were from culturally diverse backgrounds.
“I believe our team has demonstrated an ongoing commitment to embracing and learning from the
cultural diversity that our consumers bring to our service,” she said.
“Our cultural care of women, babies and families is enhanced by working closely with consumers and representative groups in our community.”
The Women’s and Babies Cultural Diversity Group has representatives from across the division who have focused on three key aspects of delivering safe and effective care to culturally and linguistically diverse women and families.
These are the development of educational resources in written and digital form, improved processes for how information is delivered, and increasing the knowledge and understanding of cultural diversity among staff.
“In addition, community groups have been invited to provide feedback on service improvement initiatives that enable us to provide the best possible cultural care that is both safe and meets the needs of women and their families,” Bernie said.
“I believe our team has demonstrated
an ongoing commitment
to embracing and learning
from the cultural diversity that our consumers bring
to our service.”
Bernie Cummins Advanced Divisional Director,
Midwifery and Nursing (Women’s and Babies Division)
3 HEALTHY FOCUS
Women’s and Babies team wins multicultural award
Bernie Cummins, Advanced Divisional Director, Midwifery and Nursing (Women’s and Babies Division) with Governor of South Australia, His Excellency, the Honourable Hieu Van Le AO.
NEWS
HEALTHY FOCUS4
MULTICULTURALISM
The Women’s and Children’s Hospital and the community health sites that make up the broader Women’s and Children’s Health Network (WCHN) took on a distinctly orange hue during March for a celebration of cultural diversity among staff and consumers.
To coincide with Harmony Day, a nationwide celebration held each year on 21 March, the Health Network took the lead from its Cultural Round Table group, which developed the idea of the month-long celebration.
“One of our six pillars of consumer and community engagement is diversity, and at WCHN we decided to devote March to recognising and celebrating our wonderful cultural diversity,” said WCHN Chief Executive Officer Naomi Dwyer.
“Embracing diversity means effectively partnering with all of our consumer groups to deliver appropriate care that is understanding of their cultural experience and respectful of their needs.
“It’s about giving people the power to be heard and promoting cultural respect for everyone who calls Australia home, from our traditional owners to those who have come from many countries around the world.”
A growing number of consumers of services provided by the WCHN speak languages other than English with the most common being Arabic, Dari, Farsi, Cantonese and Vietnamese.
In addition, there are 60 Indigenous languages spoken in Australia today, with Kaurna (the language of the traditional owners of the Adelaide Plains) having resurgence in recent years, as new generations embrace their Aboriginal culture and history.
WCHN Manager, Consumer and Community Engagement Allan Ball said the Cultural Round Table, which provides peak governance and consultation around cultural awareness, wanted to enhance the experience of all people who access the Health Network’s services, regardless of their religious, ethnic, cultural or social backgrounds.
“Our Cultural Round Table enables us to have a deliberate and unapologetic focus on ensuring that we are meeting the needs of diverse population groups,” Allan said.
During March staff, consumers and members of the community held activities to embrace cultural diversity and celebrated our shared aims as Australians.
Cultural Diversity Month is expected to be an annual event.
For further information about WCHN’s cultural diversity initiatives or to join the Cultural Round Table please contact Allan Ball on 8161 6935 or at allan.ball@ sa.gov.au.
Orange is the new black … as cultural diversity takes hold at WCHN
“It’s about giving people the power to be heard and promoting cultural respect for everyone who calls Australia home...”
WCHN Chief Executive Officer Naomi Dwyer
Above: African drummers and dancers performing at the Women’s and Children’s Hospital on Harmony Day. Picture: Tim Boord
Feeling comfortable, listened to and respected are just some of the reasons 19-year-old Amber is a client of Women’s Health Service (WHS).
Having suffered from severe period pain in her early teenage years, with seemingly no answers from visits to hospital and other doctors, Amber sought the support and advice of the WHS based at the GP Plus Health Care Centre at Elizabeth.
There her doctor had a sense that what Amber was experiencing wasn’t typical, and considered that she may have endometriosis, a condition in which tissue that normally lines the uterus starts to grow outside the uterus.
This diagnosis was later confirmed following exploratory surgery, and Amber hopes treatment will eventually free her from the pain.
Amber’s doctor, Mathilde Schaefer-Buss, said the prognosis for her patient is now very good.
“Given that she’s young, it can be treated. Of course, if it is not diagnosed it can cause long-term complications, including infertility,” Dr Schaefer-Buss said.
Amber has accessed other services through WHS, including seeking contraception and also undergoing Pap tests.
She said that for many women – and particularly young women – the thought of undergoing a
Pap test fills them with dread, as the procedure, if not handled with sensitivity, can leave a woman feeling vulnerable or embarrassed and not wanting to repeat the experience.
One of the important features of WHS is that appointments with doctors and nurses can be up to 45 minutes, providing both patient and clinician with an opportunity to thoroughly discuss any health issues.
Women’s Health Service Acting Manager Ruth Steer said WHS provided a unique, confidential service to women for all aspects of their general, emotional and sexual health.
“Our staff include doctors, nurses, Aboriginal clinical health workers, social workers, mental health counsellors and administrative staff. Importantly, all our services are provided by women for women,” she said.
Amber said: “I think it takes a woman to understand women’s health problems.”
“Even when you’re getting undressed and sitting on the (examination) table, there’s so much respect and dignity.”
Women’s Health Service is located at Port Adelaide, Elizabeth, Gilles Plains and Smithfield Plains. For appointments or more details call 8444 0700 Monday to Friday 9am-5pm or visit www.whs.sa.gov.au.
19-year-old Amber with Dr Mathilde Schaefer-Buss,
a Senior Medical Officer with Women’s Health Service
based at the GP Plus Health Care Centre, Elizabeth.
5 HEALTHY FOCUS
A place of her own
WOMEN’S HEALTH
Story and picture: Tim Boord
“I think it takes a woman to understand
women’s health problems.”
Amber, WHS consumer
Cultural careAn enhanced program of maternal care, which provides pregnant Aboriginal women with safe, culturally appropriate services, is now under way at the Women’s and Children’s Hospital (WCH).
The revised Aboriginal Maternal and Infant Care (AMIC) Program combines specialist Aboriginal health workers and midwives to deliver holistic care to the women and their families.
Findings from the Aboriginal Families Study, which ran between 2011 and 2013, showed high rates of social health issues affecting South Australian Aboriginal women and families during pregnancy, as well as high levels of associated psychological distress after the birth of a child.
The AMIC Program at the WCH is part of a major effort to improve health outcomes for Aboriginal women and their babies by providing a comprehensive service from the antenatal stages to after the baby has been born.HEALTHY FOCUS6
Story and picture: Tim Boord
ABORIGINAL HEALTH
“We have had to re-frame care in ways that address broader social determinants of adverse birth outcomes.”
Deanna Stuart-Butler, Manager AMIC Program
Involvement in the program usually starts at 10-12 weeks into the pregnancy and for up to six weeks after the birth of the baby. The women are then referred to a range of community services for further support as required.
AMIC Program Manager Deanna Stuart-Butler said that in order to change the poor birth and associated health outcomes among the Aboriginal population, greater attention needed to be paid to the social determinants of poor health by looking at the circumstance of Aboriginal women’s lives.
“This means combining high-quality clinical care with a public health approach that gives priority to addressing modifiable social risk factors, including housing problems, family violence, drug and alcohol problems and other consequences of social disadvantage,” she said.
“Addressing these issues should be an integral and core component of antenatal care for Aboriginal families.”
Deanna said that over the past 12 months the AMIC Program had been revised to ensure it could better meet the needs of Aboriginal women and their families.
“We have had to re-frame care in ways that address broader social determinants of adverse birth outcomes and re-think outdated frameworks for providing antenatal and postnatal care,” she said.
“This has meant expanding our Aboriginal workforce and re-designing services to pay attention to cultural safety and appropriate ways of engaging Aboriginal families, and expanding the role of Aboriginal health professionals in antenatal and postnatal care.”
Key to this model of care is the role of the AMIC workers. These health professionals have attained Certificate IV in Aboriginal and/or Torres Strait Islander Primary Health Care (practice) and are the primary link between the health care services and Aboriginal women and their families.
AMIC worker Shanamae Davies said that under the program women not only received clinical care but an “all round experience”.
“Meeting an AMIC worker and midwife at their first appointment and seeing those same people right through pregnancy provides Aboriginal Women with reassurance that they matter and we are here to support them,” she said.
“This continuity of service allows us to build positive rapport with our clients, which ultimately leads to better outcomes for our women.”
The AMIC workers are supported by a team of midwives who have been recruited to work exclusively as part of the AMIC Program.
Michelle Mitakiki gave birth to a baby boy on 20 June. She is one of the first women to be part of the revised AMIC Program. For Michelle and her mother Narelle Brady, the program provides excellent support, including assistance with getting to and from hospital appointments.
Narelle said: “I would recommend AMIC to everyone. The AMIC workers are loving and caring. They make sure that we’re really looked after. We don’t have to sit down and wait for (our appointments).” 7 HEALTHY FOCUS
Mum to be Michelle Mitakiki (right) with registered midwife Natalie Horan (left) and AMIC worker Shanamae Davies during one of Michelle’s antenatal appointments.
Mum-to-be Michelle Mitakiki (right) with registered midwife Natalie Horan (left) and AMIC worker Shanamae Davies during one of Michelle’s antenatal appointments.
HEALTHY FOCUS8
14-year-old Luke Warburton was assisted to keep up with his Year 7 studies by attending the Hospital School at the WCH in 2015.
School’s inEDUCATION
Story and picture: Tim Boord
Progressing through school can be difficult even for a healthy child, but when you add an acute or long-term illness, which requires hospitalisation or ongoing treatment, education can sometimes be a casualty.
That is where Hospital Education Services (HES), a speciality school division of the Department for Education and Child Development (DECD), comes in.
With teaching services provided at Flinders Medical Centre, Lyell McEwin Hospital and Adolescent Services Enfield Campus, as well as the main Hospital School at the Women’s and Children’s Hospital (WCH), HES operates like any other school, with the aim of helping children achieve their learning potential. But it does so while they are also undergoing treatment or recovering from an operation or illness.
The Hospital School at the WCH has been in operation in one form or another since 1930.
Today HES has 24 teaching and support staff across the three campuses and for the 2014-15 financial year delivered 13,000 face-to-face teaching sessions to 1523 students from pre-school to Year 12.
Principal Margot McDougall said the teaching sessions had increased by 45% over the previous year. “More students who are in hospital are getting a teaching service more of the time and we’re doing a lot more work on the wards,” she said.
“For those kids who are not well enough to come down to the classroom, we are able to deliver a teaching service at the bedside or in the small (recreational) rooms in wards.”
Other areas the school has focussed on include building greater specialisation among its staff by employing SACE teachers from metropolitan secondary schools to teach years 10,11 and 12 students, as well as a special education teacher, who has attained a “highly accomplished” professional standards rating.
Margot said the Hospital School catered to a large number of long-term patients or “frequent flyers”, often children with cancer or chronic conditions, and their education needs required a greater degree of planning, particularly in the core areas of literacy and numeracy.
“Instead of a general ‘let’s keep some education going’ (while they are in hospital), we’re saying here’s an opportunity where they can work one-on-one with a teacher or in a small group, and we can really target their learning need,” she said.
Margot said it was important for students to keep a connection with their usual school while in hospital and the advent of easily accessible video conferencing
technology, such a Skype, enabled Hospital School students to participate directly in some classes.
She also said that the Hospital School played a key role in building capacity and knowledge at mainstream schools around illnesses such as cancer, a process facilitated last year by the formation of the Oncology Education Planning Group.
One former student of the school is 14-year-old Luke Warburton, who attended in late 2015 after he underwent surgery to remove a spinal cord tumour, followed by daily rehabilitation treatment over several months.
Luke was in Grade 7 at school and soon to make the critical leap into secondary school. His condition left him unable to walk initially and consequently he had considerable time off school, including the entire Term 3.
“He was discharged two weeks after the surgery but was then admitted to the Ambulatory Rehabilitation Service, which involved coming into the hospital on a daily basis for appointments with the rehab team,” Luke’s mum Theresa said.
She said that being able to attend the Hospital School enabled Luke to continue to have a connection with schooling and consolidate his learning.
“Luke was able to attend the Hospital School for a morning or afternoon session before or after appointments – it was great that there was flexibility around attendance. There was no pressure to attend at a particular time, just as and when he could and when he felt up to it,” she said.
Luke said: “I thought the Hospital School was great. It had a number of different teachers who could teach a variety of subjects. The teachers were really friendly and they helped me to keep up and stay on track with my schoolwork.”
At the beginning of this year Luke successfully transitioned to Year 8, where he is now getting back into the swing of things and keen to resume many of his favourite activities, including the myriad sports he likes to play.
“He has been able to go into Year 8 not feeling like he’s behind the other students or missed out on anything and he’s on the same level as the rest of his year. It’s really like he’s just been able to pick up where he left off,” Theresa said.
9 HEALTHY FOCUS
“He has been able to go
into Year 8 not feeling like
he’s behind the other students … It’s really like he’s just been
able to pick up where he left
off.”
Luke Warburton’s mother Theresa
HEALTHY FOCUS10
The Women’s and Children’s Health Network (WCHN) is using poetry to capture the thoughts and ideas of consumers and families in a novel approach to collecting feedback on their experiences.
Coordinated by health consumer advocate Tessa Kowaliw, the concept has been trialled in the Women’s and Children’s Hospital’s Postnatal Ward, with consumers sharing their experiences of childbirth, which are then interpreted as poetry by Tessa.
A former high school English teacher, Tessa is now a major advocate for health consumers, having first become involved in CARES, a not-for-profit group which supported women who had birthed by caesarean and offered information to those planning subsequent births. Today, she continues that work as president of the South Australian Maternity Reform Association Inc. and as a consumer representative with the WCHN’s Person and Family Centred Care Network Steering Group.
“The poetry marries my experience of the health sector with my background in teaching,” Tessa said.
“I think it allows for a little bit more artistic licence and it means that consumers can explain their experiences in a way that isn’t necessarily captured in a stock standard survey.”
Tessa will typically spend about 10 to 15 minutes talking with consumers and hearing about their experience of hospital and how they feel about it. “They can relay things that are perhaps a little more personal to them and therefore more meaningful to both the consumer and the health service,” she said.
Tessa said there was a “practical element” to choosing the medium of poetry for consumer feedback.
“Being a shorter form of writing you can get the same effect with a much more efficient use of time,” she said.
“They (the consumers) are actually writing the poetry themselves when they are giving me their experience and people deliver fabulous lines of poetry without realising they’re doing it.”
The quick turnaround from voiced experience to poetry often leaves consumers pleasantly surprised.
“It’s because they’re hearing their own words come back to them, which is really powerful, because in that moment they hear the gravity of the things they’re saying and how important they are to their lives,” Tessa said.
Tessa’s feedback poems tend to be written in free verse, but she will throw in the odd rhyme if it fits the situation and creates a nice rhythm to the piece.
“Sometimes the rhyme is a really good way of drawing out a particular element you want to bring attention to,” she said.
In addition to developing a poem out of the consumer experience, Tessa reports back to the Health Network with more detailed comments about service provision and suggestions for improvements. This information is then considered by the Consumer and Community Engagement Unit’s “citizen jury”, which in turn makes recommendations to the WCHN Safety and Quality Committee and Consumer and Community Council, the Network’s peak decision-making and governance body.
WCHN Manager, Consumer and Community Engagement Allan Ball said: “This concept is an example of how our Network is seeking to do things differently, to more effectively capture consumer feedback on experience.”
He said there were plans to compile the poetry into a book to provide an “ensemble of consumer voices” to be used as part of a consumer engagement and staff orientation toolkit.
For more details contact Allan Ball on 8161 6935 or at [email protected]
“It means that consumers can explain their experiences in a way that isn’t necessarily captured in a stock standard survey.”
Tessa Kowaliw
Chapter and verseCOMMUNITY ENGAGEMENT
Story and picture: Tim Boord
I walked into this baby blue cloudSurrounded by family and loveMany hands held meAs my beloved entered the worldHe is my everythingI hear his seal-like cry above all othersAnd when we walk back out of the cloudI’m going to be my best mother for you.
An example of Tessa’s consumer poetry
11 HEALTHY FOCUS
‘Consumer poet’ … Tessa Kowaliw is using poetry to reflect consumer experience at the Women’s and Children’s Health Network.
HEALTHY FOCUS12
Two years ago, Grace Williams, 7, was diagnosed with a rare disorder she has had since birth – Primary Ciliary Dyskinesia (PCD).
PCD is a disorder of the mobile cilia, the tiny, hair-like structures surrounding cells which keep the lungs, sinuses and ears free of organisms and debris that can cause infection and disease.
It is a rare and difficult-to-diagnose disorder, with the symptoms of PCD overlapping with a number of other respiratory conditions.
It can cause chronic, recurrent infections in the lungs, ears and sinuses due the loss of ciliary activity in these areas.
When Grace was 2, she was tested for PCD through a biopsy of her cilia, undertaken interstate. PCD was not a well-known condition and her mother Jo believes there was only one Australian doctor at the time who had the expertise to conduct the biopsy required and make a clinical diagnosis.
The test was negative for PCD but Grace’s doctor at the Women’s and Children’s Hospital, Dr James Martin, Medical Unit Head of Pulmonary Medicine, still suspected PCD given Grace’s clinical symptoms and recurring respiratory infections.
Two years later the biopsy was repeated interstate, which again proved negative. Jo said Dr Martin remained unconvinced.
It was only when Grace was five that she was able to be officially diagnosed, following more testing interstate.
For Jo and family, the positive diagnosis was bittersweet. There was relief at finally knowing the cause of Grace’s recurring health problems but also sadness, knowing that PCD is a life-long condition for which there is currently no cure.
Grace is admitted to the Women’s and Children’s Hospital generally once a year because of infections in her lungs, and has regular appointments at the WCH, to monitor her lung function and health.
Jo thanked Grace’s doctor, Dr James Martin, for his persistence, support and ongoing care, as well as staff across the hospital.
Jo admits that had she known earlier about Grace’s condition, she may have decided not to have any more children.
“Because PCD is a genetically inherited condition, we may have thought twice about having more children if we had known that we could pass this onto them, but Grace’s late diagnosis meant that we completed our family and had two more children after she was born,” she said.
Anyone wanting more information about PCD can visit https://www.facebook.com/PCDAustralia/
PCD is a rare and difficult-to-diagnose disorder, with the symptoms overlapping with a number of other respiratory conditions.
Finding answers for Grace
MY STORY
Story: Charmaine Newton Picture: Tim Boord
13 HEALTHY FOCUS
Grace Williams and mum Jo
“I noticed the difference almost as soon as I woke up ... I can only promise to take the best care of my new lungs.”
Flynn O’Malley
HEALTHY FOCUS14
For two years, avid fisherman and surfer Flynn O’Malley wasn’t able to do what he loved most - spending time at the beach near his Aldinga home, but thanks to a double lung transplant last year, the 17-year-old is now leading a much more active life.
In 2007 at the age of eight and after years of ill health, Flynn was diagnosed with primary pulmonary hypertension – the right side of his heart was doing all the work – he was at risk of heart failure and his lungs were being impacted.
Under the care of Women’s and Children’s Hospital cardiologist Dr Malcom Richardson, a regime of vaso-dilators stabilised him for several years.
Flynn’s Mum Bridget said his prognosis was “shocking” – with predictions he would not
survive until he was 13 – but “it’s amazing what doctors can fix these days”.
He had limited physical abilities and exercise tolerance – couldn’t run, surf or swim (the medication precluded him from going in the water) so his Dad Brian encouraged him to take up target shooting which involved minimal physical exertion.
Flynn started to find stairs more and more challenging, was unable to take Dot the dog for a walk up the road and was often so unwell he was unable to get out of bed in the morning.
“Breathing always felt like taking in air through the eye of a needle,” Flynn said.
From 2013 he was attached to a pump 24/7 as part of end-stage treatment and Dr Richardson told him he needed a double-lung transplant.
Flynn’s second chance
MY STORY
Story: Bronwyn Ludlam* Picture: Tim Boord
Over the next 22 months his condition was kept as stable as possible to allow him to grow and develop to a stage where he would be able to accept adult organs – which are more commonly available for transplant than those of children.
Flynn was officially listed for a transplant in July last year.
The family waited on high alert knowing that two out of ten calls are false alarms because after retrieval, organs can still be found unsuitable for transplant.
In late spring, a five-hour operation at the Alfred Hospital in Melbourne gave Flynn a priceless gift and a new energy for life.
“I noticed the difference almost as soon as I woke up,” Flynn said.
His donor organs started to work immediately and his recovery was an astonishing 13 days. He was walking after only two days and soon was in the rehabilitation gym.
Bridget said it had been a hard road for the whole family but praised others on a similar journey
for still being able to ‘crack a smile’ despite the serious illnesses they live with.
She finds herself having to readjust.
“I’m still walking at a snail’s pace, he’s miles ahead or we’re walking up a hill and I stop and think: ‘This time last year he couldn’t do that’.”
With the waves on the doorstep at his southern beaches home, Flynn is now getting back into surfing.
Having also missed a considerable amount of school, he’s studying a modified SACE Year 12 curriculum though TAFE and Willunga High School’s Flexible Learning Option (FLO) program.
Flynn is considering a possible career in thoracic medicine. He’s at the gym every day and careful to take his anti-rejection medication.
As he moves into a new chapter of his life, Flynn says he doesn’t know how to begin to say ‘thank you’ to the family of his donor.
“I can only promise to take the best care of my new lungs,” he said.
Bridget said: “One thing that is always with us is that a family has lost a loved one.
“It’s only in very special circumstances that someone can donate organs so please register your donation decision and speak with your family.
“If something tragic happened to me I’d want to be able to help someone.”
For more information about DonateLife SA call 8207 7117, email [email protected] or visit the website at www.donatelife.gov.au
*Bronwyn Ludlam is Senior Media and Communications Officer with DonateLife SA
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Flynn’s second chance
Flynn with WCH cardiologist Dr Malcolm Richardson
Double lung transplant recipient Flynn O’Malley
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T cell team
Professor Simon Barry
RESEARCH
Story: Tim Boord Picture: Christopher Sprod
In immunology, regulatory T cells (or Tregs) act to police the immune system by controlling the way the body responds to potential threats.
In the case of an autoimmune disease such as type 1 diabetes, the Tregs have failed to determine what is harmful and what is helpful to the body and have allowed the immune system to destroy the pancreas leading to insulin dependence.
Scientists are now developing the ability to grow and infuse these T cells so that they can more effectively discern individual threats and benefits. This requires the manufacture of T cells, which can be introduced to the body. The challenge is to produce the T cells - an intricate and tricky process - in large enough quantities to enable widespread clinical trials and then therapeutic use.
The Adelaide research is led by molecular biologist Associate Professor Simon Barry, a Chief Hospital Scientist based at the WCH and affiliated with the University of Adelaide. He and his team are working on two key projects which examine how T cells aid in immunological tolerance and also act to fight cancers.
The Barry Group is part of the multi-state, $59 million Cooperative Research Centre (CRC) for Cell Therapy Manufacturing, which aims to progress the cost-effective manufacture of cell therapies and accelerate their use in clinical practice.
Working in collaboration with the Barry Group are research groups led by Professor Nico Voelcker of the University of South Australia and Professor Dietmar W. Hutmacher from the Queensland University of Technology, each bringing specific expertise to the project.
Professor Barry said that research in mice with induced type 1 diabetes, which were treated with Tregs, had resulted in the disease being reversed.
“There was a belief that once a disease such as type 1 diabetes attacked the pancreas it was destroyed, but the work in mice has shown that if you can get the attack under control it may be able to recover,” he said.
The other side of Professor Barry’s work with T cells is in developing therapies to fight cancer.
This work is being supported by the Women’s and Children’s Hospital Foundation and will involve taking a patient’s own cells and re-engineering them to recognise and attack tumours.
“One of the things cancer cells do quite effectively is fool the immune system into thinking they’re good, and that’s how a tumour progresses,” Professor Barry said.
“When the cells move through metastasis they don’t get picked up along the way because they have fooled the policing system into thinking they are part of a normal biological process.
“But you can now take someone’s T cells and modify them to specifically recognise a cancer cell.”
This technology is known as chimeric antigen receptor (CAR)-T cell therapy which enables T cells to recognise a tumour-specific protein.
The cell therapy model is a radical departure from the traditional “global” approach of chemotherapy.
“It’s been accepted for a long time that chemotherapy is effective but not very selective, so it has unwanted side effects,” Professor Barry said.
“So now we take out T cells and we engineer them to only recognise the cancer cells and then put them back into the person so they can find the cancer and destroy it.”
Professor Barry welcomes the possibilities presented by cell therapy and believes the technology is now on an accelerated trajectory.
“Normally the timeline for such research to reach the human testing stage would take about 10 years, but given the worldwide excitement about the potential of CAR-T therapies, it is likely the process will be fast-tracked if safety can be assured,” he said.
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Researchers based at the Women’s and Children’s Hospital (WCH) are part of a major push to investigate how powerful cells in the human immune system can be used to potentially reverse autoimmune diseases and also destroy cancer cells more directly and with fewer side effects.
“You can now take someone’s
T cells and modify them
to specifically recognise a cancer cell.”
Associate Professor Simon Barry
New lung function testing equipment installed at the Women’s and Children’s Hospital (WCH) provides a safe, non-invasive way to detect lung abnormalities, especially in young children with cystic fibrosis (CF).
The Exhalyzer machine is located in the Lung Lab – the only specialised children’s lung function laboratory in South Australia.
The Exhalyzer, which cost almost $90,000, was funded by TeamKids/Women’s & Children’s Hospital Foundation.
Dr David Parsons, Chief Medical Scientist in the Department of Respiratory and Sleep Medicine at the WCH, said the machine helped doctors to determine if lung disease was present, if it was progressing and if more aggressive treatment was needed.
“Unlike the usual lung function tests, this one can be used in very young children – all they have to do is breathe normally into the mouthpiece rather than trying to produce quite deep and controlled blows,” he said.
“We will even be able to test a child while they are asleep if necessary.
“Importantly, having early and sensitive measurements like these, means we can start
treatment early, and reduce the onset and severity of the permanent lung disease that can result if treated too late in childhood.”
The new equipment is particularly beneficial in regularly monitoring lung health in very young children with CF.
Children with CF produce an excess of thick, sticky mucus that clogs the tiny air passages in their lungs and traps bacteria. Repeated infections and blockages can cause irreversible damage and a shortened life. CF also affects the digestive and reproductive systems.
The earlier that doctors can detect and treat these infections, the better the long-term lung health prospects will be.
TeamKids Chief Executive Officer Sam Tolley said that paediatric medical equipment was tremendously expensive and must constantly be upgraded to ensure the hospital can continue to provide the very best care for injured and seriously ill children.
“Thanks to the year-round support of our generous donors, including those who give to specific appeals, we are able to help fund the very latest technology and equipment,” he said.
Sisters Savannah and Ruby are among the children whose lung function will be tested using the new machine.
Picture: Sam Wundke/Newspix
Lung machine helps kids breathe easier
HEALTHY FOCUS18
PARTNERS
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A new portable ultrasound machine is helping anaesthetists in the operating theatres at the Women’s and Children’s Hospital (WCH) to more precisely deliver pain relief during operations.
Last year alone, around 10,000 children had surgery at the hospital and this machine will enable more young patients to benefit from this latest approach to giving anaesthetics.
According to Medical Unit Head, Children’s Anaesthesia Dr Todd Maddock, ultrasound guided anaesthesia has many benefits for patients and the surgical team caring for them.
“Thanks to high quality, real time ultrasound images, doctors can clearly see the nerves and structures like blood vessels around the site of the operation and very accurately apply local anaesthetic to block pain throughout the operation,” Dr Maddock said.
“This technology is now very commonly used to insert cannulae (tubes) into veins and arteries with greater accuracy and reduced risk.
“Not only does this increase rates of achieving a successful nerve block, it can also reduce the chance of any complications that may arise as we can see and avoid the nerve itself and surrounding blood vessels.”
The ultrasound equipment has a range of versatile uses in the theatres, including helping surgeons to identify lesions in organs like the liver and their relationship to surrounding organs, tissues and blood vessels.
Funding for the $78,000 machine was provided by TeamKids/Women’s & Children’s Hospital Foundation.
WCH Medical Unit Head, Children’s Anaesthesia
Dr Todd Maddock with the new ultrasound machine which assists
in delivering precise pain relief during operations.
Ultrasound for operating room
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I fill 18 hours a week in this position, which is mostly joyful, delightful and challenging, and sometimes, heart-achingly sad.
The role of the Multiple Birth Coordinator at the Women’s and Children’s Hospital (WCH) is a unique one. As far as I am aware there is no other position quite like it. The position was created in collaboration between the South Australian Multiple Birth Association (SAMBA), now known as Multiple Birth SA Inc. (MBSA), SA Health and the Women’s and Children’s Health Network.
Funding was sought in the late 1980s to provide home help for multiple birth families, and in 1990 the Home Help Program began. Initially managed by SAMBA, with assistance from the former Child and Youth Health, in 1996 administration of the program was taken over by the newly created role of Multiple Birth Coordinator based at the WCH.
This role supports multiple birth families at the WCH and other maternity hospitals in South Australia. The position has evolved over the years and now includes providing antenatal classes, or individual sessions as appropriate, for all multiple birth families.
The Home Help Program provides hands-on assistance and respite in the family home. It is mostly baby-centred, assisting parents with multiples, teaching parentcraft, routines and providing much needed respite. If a family is struggling and finding themselves overwhelmed, the three hours per week for six weeks provided by the program may just be the glue that holds them together.
Applications for the Home Help Program are sent to the Multiple Birth SA Inc. office then forwarded to the Multiple Birth Coordinator, where they are assessed against established criteria and applications already received. Referrals for metropolitan families are forwarded to an agency with whom MBSA has a contract to provide staff able to carry out the Home Help Program. Country applications can be a little tricky at times, and often require a lot of investigation and calls to find appropriate carers and an agency able to assist.
The second major task of the Multiple Birth Coordinator is to provide antenatal classes that are specific to families welcoming multiples. This is a part of the role that I unashamedly love.
The role of the Multiple Birth Coordinator at the Women’s and Children’s Hospital (WCH) is as rewarding as it is unique, so says Deb Rossi.
Multiple Mothering
OUR PEOPLE
“Multiple birth families often differ from singleton families in that their major focus is on how they will cope after the birth, rather than the birth itself.”
Deb Rossi, WCH Multiple Birth Coordinator
Multiple birth families know that they need to gather as much information as possible – usually this will be in the form of antenatal classes. They come along to classes with their heads swimming with questions, doubts, ideas and of course the usual horror stories that are so freely shared. Most commonly, new parents will want to know: “How will they come out?”, “When will they arrive?” “How do we feed them?”.
Multiple birth families often differ from singleton families in that their major focus is on how they will cope after the birth, rather than the birth itself.
I hear questions like: “What equipment do we need?”, “Is there any assistance available?”, “How do we feed two babies at once – is that even possible?”.
The classes are delivered over three weeks. In the “going home” class, the aim is to encourage attendees to start planning and organising life and home in advance. Recommendations include: cook up a storm, host a freezer party to get the freezer stocked up in readiness. Lock in those offers of assistance from family and friends. Discuss how to ask for help and where to seek help and information. We discuss realistic expectations of life with twins at home. How many nappies will newborn twins
go through in 24 hours? I often get eyes as wide as saucers when we get to this topic!
Above all, I hope to reassure parents that they will survive and they will
enjoy this new beginning. After all, I did. Yes, I am a parent of multiples. My twins are now 19 years old, and are truly nice young adults. We survived
twins and they survived us! When I share this with attendees, I see shoulders and faces relax. There is some validation to the information that I am sharing.
Each of the classes is invited to one of the four reunions I schedule during the year. This is a fabulous time as friendships are fostered, stories are swapped, and I get to catch up with those who birthed in another hospital. It is also an opportunity for me to identify families who may benefit from the Home Help Program, or who may need assistance with referrals and connections with other services.
As the WCH is South Australia’s major tertiary hospital for births and women’s health, I have contact with many country families. If travelling to the city for classes is inappropriate and inconvenient, I will offer one-on-one time with them that coincides with appointments at the hospital. Within the hospital environment I also support inpatient families with education and emotional support, especially for long-term clients in the antenatal ward. I provide resources, advocacy, referrals and education during their stay.
For many families the postnatal stay is short. If I can, I will visit and offer practical assistance with the babies, feeding, expressing and facilitating breast pump hire.
In the WCH neonatal nurseries I will follow the families through their journey, by offering support, advice, resources, and a shoulder to cry on, until they eventually reach that amazing next step – taking their precious little babies home.
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Multiple Birth Coordinator Deb Rossi with some of
the children whose mums have been part of the WCH’s
multiple birth program.
HEALTHY FOCUS22
How consumer advocacy is making a differenceI am a consumer/carer representative for the Women’s and Children’s Health Network.
I have been involved with the Child and Adolescent Mental Health Service (CAMHS) for around seven years, after accessing their service with my son, Bradley, who has an intellectual disability, which led to mental health issues for him in his teens.
I knew when he was a young child there were things that he was not doing at the same stages of childhood that most other children were able to do. I made appointments with anyone who would listen but this did not lead to a specific diagnosis.
So we plodded along as parents feeling very alone and isolated. School was always on board with Negotiated Education Plans (NEPs), but things did not seem to get any better. He was struggling to learn new concepts and had a lot of trouble associating with his peers.
Just out of luck I met Bruce Ormonde, a behavioural support coach with the Department for Education and Children’s Services (DECD), who referred us to Adolescent Services Enfield Campus (ASEC). This is when things really started to look up for us.
Bradley was enrolled in the Group Program and he was finally around other young people that were struggling and he finally felt like he belonged.
The staff treated him with respect and understood his difficulties. He was finally praised for the things he was able to achieve instead of being compared with others. This is where I first became involved with the Women’s and Children’s Health Network. After being involved in parenting programs I was invited to be part of a team of carers that would speak out about the difficulties ours and other children are suffering. In 2011, we developed the Energetic Lived Experience Consultancy Team
(ELECT) group. We came together and met bi-monthly at the start. We had consultations with DECD and many other stakeholders. This is where things started to change for me. For the first time I felt like I had a voice. I felt like together we could make a real difference.
In late 2014, I was asked to join the Women’s and Children’s Health Network more broadly. I became a member of the CAMHS Transformation Taskforce, which led to the co-design workshops led by management consultant Liz Mellish. The workshops took place for two full days every two months over a period of 10 months. This was one of the most amazing things that I have had the privilege of being involved in. Along with other consumers and carers, we put our minds together and came up with pilot programs that would make significant changes to the way CAMHS does business, with consumers and carers working collaboratively alongside staff.
For the first time I could see how my voice would make a difference in the way other families would find and receive an appropriate referral or a service from CAMHS. It wouldn’t have to be a matter of luck for other families. This is how much of a difference consumers and carers can make if a service is willing to open the doors to some new ideas.
I am now a member of six committees across the Health Network and a co-chair of one. I would like to thank all the WCHN and CAMHS staff who have helped make this possible.
With authentic consumer/carer engagement we can all make a difference.
– Tanya Cheeseman
Tanya’s voice
MENTAL HEALTH
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“For the first time I felt like I had a voice. I felt like
together we could make a real
difference.”
Tanya Cheeseman
Tanya’s voice
HEALTHY FOCUS24
The opportunity to be a part of the Parenting SA team responsible for updating Parent Easy Guides for Aboriginal families was an exciting one for Keara Pearce.
In her role as Aboriginal Senior Health Promotion Officer, Keara recognised that the updated guides were an opportunity to highlight the strengths of families and the positive impact that Aboriginal culture and identity can bring to raising children. They should also acknowledge the challenging life circumstances that many families face.
Armed with this knowledge, Keara began extensive statewide consultations with 160 individuals and 49 services over a two-year period.
“I spoke with mums, dads, aunties, uncles, grandparents, carers and workers in a wide range of services,” she said.
“From yarning with such a wide range of people, I gained a picture of current family issues and the information families thought was important to know as they raise their children.”
Acknowledging the diversity of Aboriginal families was extremely important.
“It’s not a ‘one size fits all’ approach,” Keara said. “We are talking about families who may have very different levels of connection to culture and family, and who may be facing a range of challenges in their daily lives.”
Keara is proud of the end result, as the guides have been well received by families and services, with orders coming from all over South Australia and interstate.
The guides address fundamental aspects of parenting and having a healthy family life, as well as difficult issues such as violence. All guides provide practical strategies and a comprehensive list of support services.
“It is really pleasing that workers are keen to give them to families, and find them a useful tool in opening up conversation about sometimes tricky topics,” Keara said.
As well as updated information, the design of the guides was refreshed to include photographs of local Aboriginal families.
“It was clear from the consultation that families wanted resources to “look like they are for me’’.
Aboriginal Parent Easy Guides are free and available for download or order at: www.decd.sa.gov.au/parentingsa/peg_aboriginal_list.htm#peg190 or phone Parenting SA on 8303 1660.
Parenting resource for Aboriginal families
ABORIGINAL HEALTH
Story: Amanda Stewart
Keara Pearce