Wednesday, 19 February 2025

Colorectal and pelvic reconstruction service

Bev McARTHUR (Western Victoria) (15:34): I move:

That this house:

(1) acknowledges that:

(a) the colorectal and pelvic reconstruction service (CPRS) at the Royal Children’s Hospital is a world-class, patient-specific surgical, nursing and allied health service that provides comprehensive and innovative care for children and their families affected by anorectal malformations, Hirschsprung disease and chronic constipation;

(b) CPRS provides specialised outpatient clinics including nurse-led bowel management, stoma therapy, and a psychology clinic to support families in reducing the psychosocial impacts;

(c) the increasing number of patients treated by CPRS alleviates a significant burden on other health services in Melbourne and regional Victoria, as they lack the expertise to handle complex colorectal conditions;

(2) notes that the:

(a) CPRS is the first and only service of its kind in Australia and has had measurable positive impacts on the physical and emotional health of children and families;

(b) false economy of removing the direct and continuing wraparound care would inefficiently offload responsibility to unprepared emergency departments and healthcare providers;

(3) expresses concern over reports from patients and families indicating that CPRS in its original form will be shut down imminently;

(4) recognises the philanthropic support for the establishment of CPRS in 2020, which could be jeopardised by any reduction in services;

(5) calls on the:

(a) state government to ensure CPRS continues in its original form to support children and families; and

(b) Minister for Health to liaise with the federal minister for health to ensure the funding and future of this vital program is safeguarded indefinitely.

[NAMES AWAITING VERIFICATION]

Bridget lives in my electorate near Warrnambool. This is her family’s story. At 40 hours of life Sidney was airlifted to the Royal Children’s Hospital due to a severe bowel obstruction. After spending a week in the neonatal intensive care ward he was diagnosed with Hirschsprung disease. Hirschsprung is a congenital condition that occurs when the nerve cells in the lower part of the bowel do not form properly. If these nerves are missing, it can cause partial or total blockage in the lower part of the bowel.

[NAME/S AWAITING VERIFICATION]

At six months old Sidney underwent pull-through surgery to cut out the section of his bowel that had no nerve endings. Sidney spent the week in hospital recovering. Surgery has not cured Sidney’s disease but just made it more manageable for the time being. Bridget says:

[QUOTE AWAITING VERIFICATION]

In the months leading up to his surgery we performed bowel washouts twice daily, often more. Managing this with two older children and no medical experience while living 3 hours from Melbourne was extremely stressful. The support of the CPRS, that is the Colorectal and Pelvic Reconstruction Service, was crucial. Many times I relied on Susie or Jess, the clinical nurse consultants, for guidance over the phone or at short notice, walking me through each step of the process, providing reassurance and helping me feel confident in those overwhelming moments. The thought that this kind of assistance may not be available to other families in similar situations is heartbreaking.

Since his surgery Sidney has faced several setbacks. He has had hospital stays for issues like chronic diarrhoea and severe nappy rash and has been closely monitored for an infection of the bowel.

Bridget says:

[QUOTE AWAITING VERIFICATION]

Our son is one of the lucky ones, who at 2 years of age is currently blissfully unaware of his disease. However, as parents we are filled with the fear for his future. The thought of losing the support of the CPRS team is deeply distressing. It is difficult to imagine how we or other families in similar situations would cope without that vital support.

We are surely all in this place to make the lives of Victorians better and especially the most vulnerable in our community: seriously ill children. The colorectal and pelvic reconstruction service, the CPRS, at the Royal Children’s Hospital was developed by Professor Sebastian King with philanthropic funds in 2019, including from the Kyle Sheldon Memorial Fund and the Hickory Group. It was recognised that there was an unmet need for colorectal patients and their families, especially with regard to wraparound care for nursing and allied care coordination. The service was then enhanced significantly by a five-year grant from the federal coalition government in 2020.

The CPRS brought together existing surgical expertise with specialised nursing support, stomal therapy, psychology, social work, child life therapy, dietetics, care coordination and research. The team provided support from the moment babies were diagnosed with a new anorectal malformation and required emergency surgery at one or two days of life; support for families with a new diagnosis of Hirschsprung disease, a condition that almost no-one in the community had heard of, with parents needing to be taught how to wash out their new baby’s bowels; support for parents conducting daily anal dilatations of their children; and support for the families of children who had been constipated and soiling their underpants at school or who, for the first time, now had answers and solutions for why their child was affected with this crippling condition.

Almost as important as the support itself has been the unifying effect on families. For the first time they have come together and found a voice. They have come together in a community, including at family barbeques, where parents meet and share stories and where moments of connection change children’s lives as they see that other children are affected by these conditions and look just like them. On Sunday I had the pleasure of attending a family CPRS barbeque and I met many families who told me their incredible stories.

[NAMES AWAITING VERIFICATION]

Some had flown from Tasmania. Some had caught a train from Albury at 5 o’clock in the morning. Some of these families are in the gallery today: Nazra and her son, for example; Anthea and her daughter Milly and her brothers Sam and Tom; Cassandra; and my daughter Sarah – also a Hirschsprung patient – and our grandson Edward, another Hirschsprung patient. In fact he is a CPRS devotee.

Nazra’s son was born in 2018. After four devastating weeks not pooing or eating he was diagnosed with Hirschsprung disease. Nazra managed bowel washouts for a few months until his pull-through surgery. At eight months of age he became constipated and bloated with constant infections. Bowel washouts were recommended and botox procedures undertaken to alleviate his withholding. At three years of age he had a stoma formed. Nazra was back and forth to the hospital with her son, but Jess and Suzie, the CPRS nurses, were always available on the phone to help her decide whether to come to emergency and then come and meet her and her son once admitted.

When Nazra thinks about the closure of the CPRS she says:

[QUOTE AWAITING VERIFICATION]

It is scary to lose Jess and Suzie.

She describes them as the bridge to the rest of the CPRS team:

[QUOTE AWAITING VERIFICATION]

They feel your emotion and understand your body language.

Nazra is Somalian, and English is her second language. To explain her son’s medical history to a new person every time they seek medical advice is daunting. No-one else in her community has this condition. It is isolating and has been a long journey for Nazra with no social circle that understands what she is coping with. Nazra’s son loves soccer. She wants him to be a normal child with a normal life. The CPRS team have helped him do that so far. But without the CPRS Nazra feels she has lost everything. ‘Who is going to help us?’ she says.

The vision of CPRS was to provide holistic, wraparound care for patients and their families affected by rare colorectal conditions that are not easily discussed in public; to be there for families as they go through some of the most difficult moments of their lives as they see their children require multiple invasive but life-saving procedures; and to provide a service that patients and families deserve with specialised nursing, allied health and care coordination. It is care that has led to reductions in hospital stays, allowing families to be home sooner and in their own environment; reductions in the number of visits to the hospital for appointments with improved coordination of care and multidisciplinary clinics; and reductions in presentations to regional hospitals and to the emergency department of the Royal Children’s Hospital.

Rachael is from Rockbank in my electorate. Her son was first introduced to the CPRS when he was three weeks old. He was diagnosed with a rare condition called LUMBAR syndrome, which includes anorectal malformation. During his first year of life he endured three major surgeries, five hospital admissions and countless clinic appointments. Rachael has been a nurse for over 15 years in both the private and now the public sectors. She has never seen a service that supports children and families like the CPRS. Rachael speaks as a professional, and she knows how good the CPRS is and how important it is. Rachael felt her son was not just a name and unit record number at the CPRS.

Most importantly, it provides continuity of care. That is the key to its effectiveness. It is why it works for families, it is why it provides better outcomes and it is why it saves money. Why is the CPRS different? Well, the CPRS is one of the few truly multidisciplinary paediatric colorectal services in the world and certainly the only one in Australia. Victoria should be shouting from the rooftops how good this is. The service cares for patients from every state and territory as well as assisting children from around Asia and beyond. Its worldwide reputation is clear.

Marc Levitt, chief surgeon of the paediatric colorectal and pelvic reconstruction division at the Children’s National Hospital, Washington DC, recently wrote to the Royal Children’s Hospital. He felt compelled to share an international perspective on the invaluable contribution this program has made across the world. Dr Levitt runs a sister program in Washington DC and frequently collaborates with the CPRS team at the Royal Children’s Hospital on both academic initiatives and patient care. He described the CPRS program as a model of paediatric colorectal care which has significantly benefited countless patients. He notes there is a critical need for a regional referral centre that concentrates expertise and improves patient outcomes for these rare conditions. The CPRS has successfully, he says, filled this role, and it was the first and remains the only recognised centre of its kind in Asia. It is also just one of two programs in the Southern Hemisphere, the second being in Johannesburg. He goes on:

[QUOTES AWAITING VERIFICATION]

I often speak of your program as a global model, highlighting the extraordinary commitment of both the institution and the Australian government to support the infrastructure necessary to provide exceptional care to this patient population. We try hard here in America to follow your example. The success of such a program, from my financial and clinical standpoint, underscores the importance of concentrating resources and expertise in a single centre. Your approach –

that is, the Australian approach, the CPRS approach at the Royal Children’s Hospital –

leads to better outcomes.

And isn’t that what every program should deliver – a better outcome? It also delivers reduced morbidity, few hospitalisations and fewer emergency room visits where our emergency rooms are overloaded as it is. If we can avoid attendance at emergency units, we have made a difference – results that have been well documented and published internationally. Dr Levitt says:

I for one am a better surgeon because of your team’s efforts.

Believe it or not, there is a Royal Children’s Hospital strategic plan – we love strategic plans – and the CPRS clearly aligns with it. The CPRS is internationally recognised for its research, befitting the RCH’s position as a leading paediatric academic hospital. Secondly, it is an integrated paediatric service. The CPRS has worked with providers across the state and beyond to support families in all situations so that they may receive care close to home. Thirdly, healthy children in the community are part of the strategic plan. The CPRS has worked with kindergartens and schools across Victoria and elsewhere to ensure that all colorectal kids are treated with respect and kindness as they enter new and challenging environments. The CPRS fully supports the vision of the Royal Children’s Hospital, a world where all children thrive.

So what has happened? Since last year the colorectal and pelvic reconstruction service has lost the allied health and care coordination expertise created over the last four years. In addition there has been a reduction in stomal therapy support and the imminent loss, any week now, of the specialised colorectal nursing support. These reductions in staffing have been acutely felt by parents – new families unable to access the psychological support they so desperately need, delays in clinic appointments due to the loss of care coordination and an inability to contact the specialised nursing supports that have been essential to families staying out of the emergency department and avoiding hospital admissions. And all the while the hospital has said, ‘It’s business as usual.’ The chief of surgery told families in a letter only last Friday that the Royal Children’s Hospital will deliver ongoing care for patients in a manner consistent with that delivered for other patients at the RCH with complex and long-term surgical conditions. This is simply not good enough for these children.

[NAME AWAITING VERIFICATION]

The CPRS has proven it is possible to provide them with world-leading care. Why go backwards and reduce patient care to the lowest common denominator standard? All care should be raised up to the best possible standard. CPRS sets the model all patient care and allied health should aspire to. The Minister for Health said the RCH has assured her the quality and level of services to families will be maintained. Well, I am sorry, Minister; that is simply not true. You are being misled. You only need to ask the parents, some of whom are here today. They can tell you the services provided have fundamentally changed for the worse. As Annalise from Adelaide has told me, the staff layoffs to date have destroyed the ability of patients’ families to directly contact and seek urgent support from the CPRS clinical teams. Advice from inexperienced staff and those not familiar with their children can be extremely detrimental to their health.

Greg Ryan OAM was born with anorectal malformation 60 years ago and was a patient at the Royal Children’s Hospital for 20 years. He is with us today. He can personally attest to the significant physical and psychological challenges that individuals face with this lifelong condition. Recognising the urgent need for specialised community awareness and support, he established the One in 5000 Foundation in 2017. For Greg and others, it is unfathomable that the Royal Children’s Hospital would choose to dismantle this crucial service only five years later, despite the immense investment, dedication and irrefutable success of the program. Greg launched a change.org petition on 7 February which already has 4300 signatures. Thank you, Greg, for your unstinting support for the CPRS and for the children who are so disadvantaged by this congenital condition.

So why is it important to support the ongoing funding of the CPRS? As the Treasurer said yesterday in this chamber, health is the number one priority. Well, Minister, the CPRS should be your number one priority. These children are vulnerable, fragile and in need of consistent expert care. Colorectal conditions are still largely taboo in the community. There are over 1000 patients currently using the CPRS. They have lifelong care needs and are rarely recognised. This can significantly affect their mental and physical health. The psychological impact of soiling your underpants as a child is devastating. Many CPRS patients will need to wear nappies to school and be constantly anxious about having an accident.

What is clear is that the CPRS provides a level of care that all children with colorectal conditions need and deserve to thrive. With this support they will be far more likely to be able to function healthily as adults. The CPRS model of care should be celebrated, not dismantled. It should be replicated across other sectors of the health system. I urge you to support the motion.

John BERGER (Southern Metropolitan) (15:54): I rise to speak on Mrs McArthur’s motion on safeguarding the future of the colorectal and pelvic reconstruction services, CPRS, program at the Royal Children’s Hospital, the RCH. The essential care provided to children with these complex colorectal conditions at RCH is vital to our state. We as Victorians should be proud to be the nation leader in health care and healthcare services. I want to thank my colleague opposite, Mrs McArthur, for bringing this motion to the chamber today. I also want to note her genuine interest in this important matter, a matter that affects many in Victoria. I also want to begin by stating that the government will not be opposing this motion.

A child born with anorectal malformation, or Hirschsprung disease, has a condition for life. Despite reconstructive surgery, these children may suffer from lifelong health issues which have the potential to significantly impact upon their quality of life. In 2019 the service received federal government project funding. This funding was used to deliver improvements that will have a long-lasting impact on the model of care that the Royal Children’s Hospital delivers. This has so far enabled them to provide families with not only the surgical care their child requires but ongoing support in terms of their nursing and psychosocial needs. The Royal Children’s Hospital has always provided exceptional care to patients with these conditions. I feel confident that there are no cuts to the outstanding level of surgical care and wraparound services that the Royal Children’s Hospital currently provides, and I am sure that there will be no changes to the quality of core medical care that patients with complex colorectal or pelvic conditions receive.

Community health and safety is a priority of this government, and our history shows it. This motion sets out some very important elements. It acknowledges that:

… the colorectal and pelvic reconstruction service (CPRS) at the Royal Children’s Hospital is a world-class, patient-specific surgical, nursing and allied health service that provides comprehensive and innovative care for children and their families affected by anorectal malformations, Hirschsprung disease and chronic constipation.

It also acknowledges that:

CPRS provides specialised outpatient clinics including nurse-led bowel management, stoma therapy, and a psychology clinic to support families in reducing the psychosocial impacts …

and that:

the increasing number of patients treated by CPRS alleviates a significant burden on other health services in Melbourne and regional Victoria, as they lack the expertise to handle complex colorectal conditions …

and I agree.

Victoria’s health system is one of the best in the world, and that is thanks to this government. In 2019–‍20 the Royal Children’s Hospital received $481.38 million from the Andrews Labor government to do what they do best – provide the world-class care that children need. Patients travel from all across Victoria as well as from other Australian states to access the Royal Children’s Hospital’s well-renowned services. But we know we cannot rest. An independent expert advisory committee was established in 2023 to consider how to improve access to our health services for all Victorians. To provide a solution, the committee developed a health service plan. The plan recommended more collaboration and connection between services by creating local health service networks, and because the Allan Labor government is about putting patients first, that is what we have done and what will continue to do.

The health services plan released in August 2024 sets out our government’s vision for a better connected, easy-to-access health service for Victorians, delivering Victorians a better connected health system backed by record investments, one that ensures patients get the care that they need sooner and in their own communities. The Allan Labor government have made a record investment of more than $21 billion in the Victorian budget in 2024–25. This will help health services meet increased demand, deliver more planned surgeries and support the dedicated workforce. This will be achieved through key pillars of reform. The establishment of local health service networks will group health services with geographical regions. These will be responsible for delivering better care as close to home as possible. This will ensure that the planning and management of care meets the population’s health needs in their communities. The networks will enable health services to work better together to deliver more accessible high-quality care for Victorians. This includes coordinating clinical services and attracting and retraining a skilled, well-equipped workforce. The networks will aim to deliver a system that is easier to navigate, with more consistent pathways between hospitals, better and more consistent support of our valuable health workforce and less duplication of administration so that our hospitals can focus on what they do best, and that is caring for patients.

Each health service will keep its name, its local leadership, its own identity and its connection to its community, but they will collaborate in a network to provide greater access to services closer to home. This means that expertise will be easily shared across the region. Additionally, the formalisation of relationships between a majority tertiary, a women’s and a children’s hospital will support better access to high-complexity care and expertise. This will ensure every Victorian has seamless access to specialised care and expertise when they need it. The Victorian role delineation framework will support this collaboration across the system by setting out the roles and responsibilities of every health service site as aligned to their size and capability.

These reforms will deliver even better care by supporting health services to work together and ensuring local voices are heard. This comprehensive and multidisciplinary care model in Melbourne is world leading. Just last year we delivered record investment across the system to all hospitals, including the Royal Children’s Hospital. For them, that meant investing $56.4 million to expand the existing emergency department, and it meant delivering a new 30-bed inpatient unit at the Royal Children’s Hospital. This expansion helps meet the increasing demand through the expansion of acute paediatric beds and emergency department services, and this first stage of the expansion is already treating patients with a range of different illnesses, including cancer. These services are designed to strengthen collaboration between the integrated team of health professionals, including nurses, psychologists, social workers, child life therapists and care coordinators. This enables all care and support that patients and their families need as they grow and eventually transition to adult services to be provided together in one place. We have shown that we will continue to back our nurses, our doctors and our paramedics, and we have proven we will back them with the funding that they need.

We have provided our hospitals with more funding than ever before to treat more patients than ever before. We have made record investments in the state’s healthcare workforce, including through our scholarships and our $32 million trainee GP program to cover the costs of study as well as the recruitment of more than 3000 overseas doctors, nurses, midwives and other health professionals. Alongside that record investment in our doctors, nurses and paramedics we are also investing in building new hospitals. We have provided the most significant investment in our public health system in this state, a far cry from those who privatised our hospitals. Our $20 billion investment into our hospitals in 2024 alone proves our dedication to providing our health services with the funding that they need – the funding to deliver the care and services that the community expects.

We have delivered an uplift in the price of every health service in the state because that is what our health services asked for, and we are the government that listens. Clearly our world-class health system is built on a decade of consistent investment in hospitals. We know that Victorians deserve nothing less. We know that they deserve right now, in the right place and at the right time a world-class health system. Providing this standard of health care has become more challenging since the pandemic. We know that every cent invested in health is absolutely justified, especially when it comes to the health of our great state and of our great community. Costs differ for a range of complex reasons across the health system, and as the Minister for Health pointed out in November, reasons include patient acuity, labour costs and statewide specialist services, but this government does not cut corners when it comes to health, and it absolutely does not cut corners when it comes to health spending. These investments have had and will continue to have measurable positive impacts on both the physical and emotional health of children and families across the community.

Victoria is a place where everyone can and should feel protected. This is why it is important to commit to the safeguarding of the long-term future of healthcare systems, and as long as a Labor government is in power we will strive to ensure the utmost care for our community under the jurisdiction of the state. At the forefront of our health system reforms and investments are Victoria’s patients and staff. This government has introduced a range of measures over its time in office to ensure this. Let me be clear that the government is doing the vital work that needs to be done to support our vulnerable children and families in need and to keep Victoria’s health system running at full strength, and we will continue to do so for many, many years to come. I thank Mrs McArthur for her motion.

Sarah MANSFIELD (Western Victoria) (16:04): I too rise to speak in support of the motion that Mrs McArthur has put forward today and really thank her for the genuine thought that has gone into the motion, and I also acknowledge the stories that she has shared of people who use this service. I thank those people for allowing those stories to be told. I think it is really important that we hear those stories in a place like this, because it humanises what can sometimes be talked about in an abstract sense, so I very much appreciate the contribution that you have made to this debate. As Mrs McArthur outlined, this clinic was established in 2019. It provides services to children and their families from not only across Victoria but southern New South Wales and Tasmania and has supported over 1000 families in the past five to six years. As has been outlined, it provides wraparound services, including dieticians, psychologists, paediatric surgeons, nurses and care coordinators, and provides services for people with anorectal malformations, chronic constipation and Hirschsprung disease, amongst other conditions.

I can tell you that these are very challenging conditions that not only cause significant stress at times for the children who are affected but also for their caregivers and for others who are involved in the children’s lives, like educators. They can be associated with significant stigma and lack of understanding from many, not just in the general community but also sometimes within the healthcare community itself. When you live with a rare condition, it means that often you find yourself having to explain things again and again. Typically people will be much more of an expert in their disease than many of the healthcare professionals that they ever encounter, and that can be a challenging situation to be in.

I recognise that there are many conditions that exist where a dedicated service could be of value – something similar to the CPRS – but they do not all get one. As I think Mrs McArthur put it perfectly, that does not mean we should bring everyone down to that level. We should be aiming for that quality of care. In the case of the CPRS, we had clinicians who were willing and able to establish this dedicated service, and for a time, the appropriate funding to support it. They managed to get it up and running, and it became a globally recognised service, as has been well aired.

I also recognise that, as has been said, the families who access this service will still receive care from the Royal Children’s Hospital, as I understand it. In no way do I want to diminish the quality of care that they might receive from a general service provided by the Royal Children’s Hospital. They provide outstanding care, but we do know that having a collaborative care model that brings together those specialist skills and that knowledge and provides a wraparound, multidisciplinary model of care, particularly for rare conditions, has a very strong evidence base for delivering better outcomes. It makes complete sense that this would be the case. If you have a relatively rare or a complex chronic condition, for example like Hirschsprung disease, most clinicians or even general colorectal surgeons might only see a handful of cases of this in their lifetime. If this condition is all you treat, or you treat a lot of cases of this, you get very good at developing care models and an understanding of these conditions. Many of these conditions also have a genetic component – we have heard a bit about that – which means multiple family members may be affected, and having a trusted specialist nurse or care coordinator who knows not only the condition but your family well is so invaluable in these situations. I think we have also heard that when you have a wraparound service like the CPRS it helps to foster a community connection. It reduces the isolation children and their families who experience these conditions can otherwise feel, and as we have heard, they can be very challenging to live with when you are surrounded by people who do not necessarily understand what you are going through.

The CPRS is not the only model of care like this that exists in Victoria. We actually have a number of these sorts of services that exist for other conditions. I could name a load of them, but obvious ones are things like the cystic fibrosis unit at the Alfred. We have got various transplant units at different hospitals. When I was a medical student and then a junior doctor at the Austin Hospital they ran a chronic liver disease service, and I can tell you it made a huge difference to have a dedicated service. We had people, clinicians from all different craft groups, who had a deep knowledge in these conditions. They knew all the patients, they knew their families, and they were available to assist when something came up. You did not have to run around five different people who had not heard of the patient or the condition. They knew exactly what to do. It was really valuable. It has been even more valuable in my work as a GP when someone comes in with a chronic, complex or rare disease who has one of these sorts of services where there is wraparound comprehensive care. If they have a dedicated care coordinator it makes a huge difference. If they come in with some sort of complication, I can immediately contact that person who knows them, who knows what to do, who knows how to get me in touch with the right people straightaway rather than having to make the general call via switch to whoever the registrar on call for the day is, who maybe has never heard of the patient. It makes a huge difference for the kind of care that you can provide for that patient.

I have heard from a range of different stakeholders about this particular issue before us today. I have heard from both families who are affected and clinicians who are concerned about the transparency around decision-making. I have heard that they have received different messages about what is happening with the service and why it is happening and they really fear for what is going to happen with the ongoing care that is provided by the CPRS. I will acknowledge as well that the CPRS may not have been a direct initiative of the state government and that the state government may be limited in their capacity to direct a health service to do something. What patients and service providers are looking for is some advocacy. They really just want some advocacy support on this issue. This is a really important service that is being provided, and for that reason I think it is something that I would implore all of the chamber to get behind today. That advocacy is something that the state government is well placed to provide, and I look forward to them not only providing that advocacy but hopefully seeing the CPRS continue to receive the funding that it needs and deliver the great care that it does for those many families who rely on this important service.

Renee HEATH (Eastern Victoria) (16:11): I am proud to stand and support this motion today in Mrs McArthur’s name. I want to acknowledge her incredible advocacy and passion for this unit and I also want to acknowledge the amazing families and children that are in the gallery today. Thank you so much for being here. Today it is my great honour to read a story of a mother whose child has Hirschsprung disease and has received incredible care from the colorectal and pelvic reconstruction service (CPRS). This is her story. Tara is a young girl who has Hirschsprung disease, and her mother put together these words:

[QUOTE AWAITING VERIFICATION]

Our daughter Tara could not pass meconium within the first 24 hours of her life. She was transferred to the Royal Children’s Hospital by an emergency vehicle. I have never felt so alone in my life as that day. It was even worse this time since we lost our first daughter during the delivery. Tara was diagnosed with Hirschsprung’s disease after two of the most gruelling weeks filled with shock and fear. Over her first year of life she underwent four surgeries, a time filled with uncertainty and fear as we struggled to understand the disease. A big thankyou to the nursing and surgical CPRS team. The doctors saved my daughter’s life a couple of times.

However, despite the main unfortunate events, the nursing and allied health team was our lifeline during this period, providing us with support that helped us grasp the medical details of this disease and guiding us through each step of our daughter’s treatment. We needed someone constantly to tell us more and more information, as we felt so lost. I would call the CPRS team every week for 11 months with countless questions, and their patience and dedication and expertise were a source of comfort to us. They always took time to answer our concerns, offering medical advice and emotional support that brought a sense of calm and peace into our lives.

During our numerous hospital stays, often once a month, they visited us more frequently and stayed with us as long as needed. We even took counselling sessions and had several dietician appointments. We even had a great relationship with the stoma nurses, who taught us how to handle and take care of our daughter’s stoma. Therefore, the whole team worked with us in order to succeed together towards better health outcomes. Although hospital visits are never ideal, we are grateful to the CPRS team because they turned them into a positive experience as much as possible, with their optimism serving as a guiding light through the toughest of times.

While we are deeply grateful for the care of the Colorectal and Pelvic Reconstruction Service and the team that provided it, we are saddened and concerned by the hospital’s decision, as we fear that the quality of care may not meet the same high standards without the familiar faces who have become like family to us. With the constant care of the CPRS I did not need to re-explain Tara’s medical history to new medical staff every time I had a question. Every time I emailed or called, the CPRS team had already spoken to each other and exchanged information about my daughter, for instance. As English is my second language this helped me a lot since I did not have to explain and re-explain the situation all over again.

That is pretty powerful. I remember when I was a new chiropractor and I was working in Sale I saw a little child with Hirschsprung disease, and I never forget what the mum said to me. The mum said that when they first had their baby and they did not know what was going on, it was the most traumatic time of their life. They were not sure what was an unsettled baby and what was a serious issue. I remember that she said to me, ‘We went from a place of complete panic to a place of complete peace.’ And that really stuck out to me, because like Dr Mansfield said – I am verballing her – there are so many different conditions, but it is good to go to a place where that is what they see every day. They know this in depth, and it is specialist care. I want to acknowledge the incredible work of those teams and the peace that it brings families that are really going through a terrible time.

[NAMES AWAITING VERIFICATION]

I also have another story. This one is from Alex and Hughie, who are in Newham at the base of Hanging Rock in regional Victoria. Their middle child Hamish, who is 10 years old, was born with Hirschsprung disease. This is Alex’s story:

[QUOTE AWAITING VERIFICATION]

Hamish’s initial treatment and care was delivered by RCH general paediatric surgery team, and whilst we have no complaints about the life-changing surgery and initial care he received in his first 18 months, that is where it stopped. After his initial care we essentially had to find our own way in managing his condition. Hamish only had short-segment Hirschsprung, and there are certainly worse versions of this disease. However, Hamish’s story shows the impact that the introduction of the CPRS clinic is having not only on the sickest of kids but also those who are likely to be missed or put on the low-priority list now that the clinic is going to be closed. I fear that the low-priority cases like Hamish, once they get through the initial surgery, will be pushed to the outer, forgotten about and not provided with the unique and specialised support the CPRS have for all patients, not just those with critical care needs.

Prior to the CPRS Hamish was incontinent. While the initial surgery went well, the outcome was that he suffered from chronic constipation, resulting in him soiling himself up to three or four times a day and overnight. He would go through good patches when he was fine, and then he would go through a few weeks of soiling.

At this point we were not in the surgical team’s care. We had been pushed out to 12-to-18-month check-up appointments only, and then we were left to try to figure out how to help him by ourselves. We were dragged around from GPs to local dietitians and a Chinese medicine specialist. We were googling things ourselves, and no-one was able to give us any answers. As Hamish was soiling himself, everyone suspected he had lost muscle definition, storage space or the sensation in his bowel so that he could not hold on. No-one knew that it was actually due to constipation, which was the complete opposite of what they thought it was.

One of the issues with bowel disease and constipation is that trialling new management options takes a long time. We spent nearly two years going from place to place, repeating our stories to different clinicians, trying to get our child ready to attend school and not be faced with the embarrassment of soiling himself in public. He suffered the mental impacts of this, refusing to take medicines, refusing to sit on the toilet, behaviour issues and an aversion to medical intervention.

Right before he was due to start school, a family member who has been much worse from his form of Hirschsprung let us know that CPRS had been formed. We paid out of pocket for a private referral to see Dr Sebastian King in his private rooms. From there we could get a referral. This was life changing. All of a sudden we were speaking to a team that knew what the condition was. In our first appointment we were put on laxatives, which we had never considered before. The team got to know Hamish. They coordinated appointments with the psychologist to assist with refusal and behavioural issues and continued to monitor him regularly. A gastroenterologist joined our care team to further investigate exactly what was not working in what was left of Hamish’s bowel.

As I mentioned, these things take time, but when I had questions and issues with medication or trying dosages and trying to get them right, I could just text or email the nursing team. They would get back to me within a few hours to discuss medications or behavioural priorities. I didn’t need to wait for appointments. We could just find out the right solution for our child without traumatising him further.

The result? Hamish is now socially continent. He attends school without anyone knowing he has a disease. He can attend school camp with support. He is in a swimming squad. He is growing in confidence and enjoying a normal life. If CPRS was not formed, I suspect he would still be soiling himself at school, refusing to go to school and he would be a very sad child. The CPRS has given us everything: a socially happy, well-adjusted child ready to thrive and achieve in life. Hamish has two uncles and two cousins with differing versions of the disease. Our family genetic seems strong in passing this disease on, and I worry for future grandchildren, nieces and nephews about how they will know how to care for their children if this support is lost. I hope this helps you understand the depth of care the CPRS has, providing lifechanging impact. Not only does it support critical care of high-need patients, but it catches those that sit on the border without life-threatening issues. It provides them with a better quality of life, otherwise they may be forgotten.

I commend this motion to the house.

Michael GALEA (South-Eastern Metropolitan) (16:21): Earlier today in another debate I commented on priorities of things that we discuss in this place. This motion that we have before us today is exactly the sort of thing that we should be debating, and I am very privileged to be here today to make a small contribution. I would like to especially acknowledge Mrs McArthur for her heartfelt, passionate advocacy on this issue for her family and for so many others who have had to deal with some incredibly, incredibly difficult medical situations, whether through Hirschsprung disease or others. I would also like to take a moment, Acting President Bourman, to acknowledge that you very kindly gave up your general business slot today so that Mrs McArthur could raise this motion, and I am sure I speak for many in this place when I thank you for that.

We are very, very blessed to have an institution such as the Royal Children’s Hospital in this city and in this state. It is truly, truly world class. Often when it comes to discussion of medical matters and scientific matters we talk about how Melbourne is one of the top three centres in the world for medical and scientific research – up there with Boston and with London and Oxford. It is a record and a legacy that we are very proud of, and the work that is done by some amazing doctors, nurses, other scientists and support staff at places like the Royal Children’s Hospital so perfectly epitomise that. The colorectal and pelvic reconstruction service is another such marvel that we are blessed to have and one that I, until relatively very recently, was not aware of. As Mrs McArthur’s motion says, it is:

… a world-class, patient-specific surgical, nursing and allied health service that provides comprehensive and innovative care for children and their families affected by anorectal malformations, Hirschsprung disease and chronic constipation …

and it –

… provides specialised outpatient clinics including nurse-led bowel management, stoma therapy, and a psychology clinic to support families in reducing the psychosocial impacts …

The motion also talks about the benefit it has for our broader health system in reducing added burdens from patients having to navigate extensive processes if they did not have this clinic. But I think the critical point that really resonates with me and I am sure with everyone in this place is the impact that it has on those who suffer from one of these conditions or who have children who do and the way in which it turns what is already a very difficult situation from being an unfathomably difficult one to one that can be managed and one in which we can support all of our children to thrive.

The difference that that makes surely cannot be quantified. We have families in this place today with lived experience who have come from near and far, and I would like to acknowledge each and every one of them as well. I had the privilege of meeting some of them earlier today, including Anthea and her children Milly, Sam and Tom. They are constituents of mine from the south-east, and I am so privileged that they were comfortable to share their story with me today. Milly is a very special young lady; she is hiding from us now. She has personally benefited from the CPRS over the past four years. Anthea told me how she and her husband struggled for so many years to seek the right answers, to seek the right support. A few years ago they discovered the CPRS, and it was transformative.

With Anthea’s blessing, I would like to share some excerpts from a letter she has sent in support of this cause. Anthea says:

The experience that we have had and the improvement in the quality of both our daughter Milly and our families life as a whole after having an appendicostomy with Dr Sebastion King and his amazing team has been more life changing than you can imagine.

To hear of the changes happening and the removal of team members from the department is very concerning, devastating actually.

my daughter Milly and our family were lost for some 7 years in a medical world that knew nothing about her condition, she was a little girl that had the world at her feet and was unable to participate in it until she crossed paths with the CPRS Team at RCH.

The CPRS is a world leading medical department as is a necessity.

for the kids that finally have somewhere where they feel that their medical needs are looked after and FINALLY FEEL SAFE.

We are very privileged to have the voices of Anthea, Milly and their family here with us today. For their family and for so many like them both in this room and beyond this room and of course for the many families who are yet to come on this journey but who will, it is my personal, very sincere hope that the CPRS will continue for many years to come.

Rikkie-Lee TYRRELL (Northern Victoria) (16:27): I am delighted to rise to speak on Mrs McArthur’s motion 810 on the colorectal and pelvic reconstruction service at the Royal Children’s Hospital. This service is vital in providing care for children suffering from anorectal malformation, Hirschsprung disease and chronic constipation. As Mrs McArthur’s motion says, CPRS is world leading and the first and only service of its kind in Australia.

Families who rely on this service are deeply concerned by reports indicating that CPRS in its original form will be shut down imminently. Cost-cutting measures due to lack of funding by this government are putting the health, safety and mental wellbeing of children suffering from these conditions at risk. This is completely unacceptable. How can they justify shutting down such a vital service and offloading the responsibility of care to unprepared emergency departments and other healthcare providers? Aren’t our emergency departments already overcrowded, understaffed and underfunded? Yet again this government is proving its inability to manage the health budget. All they seem to do is cut, cut, cut and put more pressure on our already stretched health systems.

Mel is a mother who resides on the border in Albury–Wodonga in my electorate. She has two young girls, Lucy and Hannah, who were both born with Hirschsprung disease. This is Mel’s story:

For my eldest Daughter, Lucy’s diagnosis, the Colorectal and Pelvic Reconstruction Service team did not exist, we were entirely dependent on regional services who were unqualified and inexperienced in caring for patients with Hirschsprung Disease. Around 9 of Lucy’s first 12 months were spent hospitalised, with the majority of those hospitalisations being unplanned and involving Regional Emergency Department admissions, many of which resulted in air transfer to The Royal Children’s Hospital in Melbourne …

For our youngest, Hannah, the need to access an Emergency Department, was significantly reduced by having access to the CPRS team, because the team were able to provide satellite support, additionally, the need for Hannah to be transferred to RCH at times has been circumnavigated, because staff from the CPRS service have been able to provide additional knowledge and recommendation to our regional networks, resulting in more time spent together as a family, and less time travelling interstate to services, with an overall benefit to Hannah’s wellbeing and minimal impacts medically, in terms of potential medical trauma.

I anticipate that with the changes to the CPRS service, we will now need to return to accessing our local Emergency Department services, especially in afterhours situations where most of Hannah and Lucy’s concerns present. For Hannah in particular, living with an ileostomy … means that she is at a greater risk of life-threatening dehydration and other associated health concerns. I think we will likely access our ED services, at the least, every second month, there may even be times where this increases to monthly or weekly, costing tens of thousands per admission, and I would anticipate that many of those ED admissions would also result in airlifts, I do not know what a regional paediatric airlift costs, however I know for certain that it is in excess of $25,000, meaning that it is likely that our family alone will cost the state services in excess of $100,000 in care in the coming 12 months, and this care does not include access to regional services such as GP’s, Paediatrics, Dietetics, and Psychology services. It also not does it include the services which do not exist in regional settings, such as support from Social Workers and the essential services of Clinical Nurse Consultants and their wealth of patient specific knowledge. Forcing already underfunded regional services to shoulder the burden of the changes to this service, to me, seems an absurd mismanagement of health funds, and will only result in restrictive access to services for our family.

We are passionate about the ongoing support of the CPRS team, the service is world class, patient specific and has provided measurable outcomes for our family, and enhanced our entire family’s quality of life. Families and advocates are already monumentally fatigued by the ongoing management of complex colorectal conditions and the management of impending changes at RCH has resulted in significant anguish for our family, and others. We do not know where to go without these services, they do not exist anywhere else in Australia.

I fully support Mrs McArthur’s motion 810 on the colorectal and pelvic reconstruction service at the Royal Children’s Hospital and commend it to the house.

Nick McGOWAN (North-Eastern Metropolitan) (16:33): It is a great honour today to rise in this place and also support Mrs McArthur’s motion and in particular support the colorectal and pelvic reconstruction service (CPRS) at the Royal Children’s Hospital. I also implore Minister Shing to make sure that at the next possible opportunity at cabinet she raises this precise matter with her cabinet colleagues and the Premier.

Today I will not speak directly to this motion. Rather, I will use the words of one of those mothers who is impacted and has had the benefit of the service at the Royal Children’s Hospital. Ashlea Fox is mother to young Sinclair. Sinclair was rushed to surgery at only 26 hours of age. This is Ashlea’s story:

After Sinclair was born, the paediatrician examined her. He spent a while examining her “bits” before moving on to other tests. He concluded that Sinclair was healthy, but he was concerned about her lack of anal opening and asked if she had passed meconium, which she hadn’t. Sinclair was then taken to the special care ward, given a nasal tube, and sent to Monash via –

helicopter –

when she was just 4 hours old.

I was contacted 2 hours after Sinclair left, informing me that she had arrived at Monash. I drove there the next morning, less than 24 hours after giving birth. The doctors suspected Sinclair might have a fistula and tried to open it but had no success. At 26 hours old, Sinclair went into surgery, but there were no available operating rooms on the children’s side, so I had to walk as quickly as I could behind the nurses as they took Sinclair across the hospital to the adult surgery area. They found no fistula, so a stoma was created during the surgery. The day after surgery, when I returned to Monash, the nurse who had been by Sinclair’s bed left to help another family try breastfeeding, leaving me standing by my newborn, fresh out of surgery, unsure how to get her out of the cot/warmer to feed her. I asked staff for help, but I was told the nurse was “busy” and it wasn’t a priority.

Due to the surgery, Sinclair’s mucus fistula was overactive and outputting a lot of mucus. However, the Stoma team only worked limited hours and didn’t cover weekends or public holidays. Sinclair needed bag changes every 3 hours or less, which was distressing for her. The nurse assigned to Sinclair was new and often said she didn’t know what to do and needed help. For 3 days, no one was available to assist with the stoma management and bag changes. The day before the public holiday weekend, the team left me with various materials and told me to “experiment” to find what worked. There were no specialists for her condition, and a doctor came to review Sinclair, mentioning her next surgery and telling me she needed to “hit the books and do some research” because he hadn’t encountered her condition before.

After being discharged from Monash, I had a meeting with Professor Sebastian King at Royal Children’s 2 days later. I maintained constant communication with Sasha, the colorectal coordinator, to get Sinclair in as soon as possible. When we arrived, Professor King immediately provided me with an A5 lever arch folder containing specialized booklets on Anorectal Malformation, outlining each step of Sinclair’s journey and explaining her condition in more detail, which wasn’t offered at Monash. He also asked Sasha to arrange for Stomal Therapy to meet with me before our meeting was even finished, ensuring I felt comfortable with the stoma management after hearing about my experience at Monash. Sasha followed up with emails to check on Sinclair and offered to help with any questions. Sinclair was placed on the waiting list for anal reconstruction surgery in May 2024 (category 2), with her position around 160. Any concerns I had were quickly addressed with a phone call or an offer to meet in person. The Stomal Therapy team consistently went above and beyond, solving any issues over the phone, via email, or by coming in for reviews.

Since September as staff was let go and reallocated to other departments the replies have been harder to get, I just spent 2 weeks calling the theatre wait list to find out when Sinclair’s surgery would be. Originally was told 4–6 weeks in May 2024, then in December we were told Feb 2025 MAYBE March 2025 at the latest. Now after calling and calling and leaving messages finally have been told Sinclair is pencilled in for surgery in April, more than likely on her birthday and that I should be excited to give her an anus for her birthday (I guess instead of her first birthday party).

Instead of anal dilations on a baby who doesn’t move much, I’ll now be spending 3–4 months maybe more doing anal dilations on a 1-year-old who wants to move, roll and run away. I’ve already been informed that there is another big wait list for stoma reversal so that could be another year, and she is not allowed on that waitlist until after her first surgery.

My entire life is on hold, having more children? Would that be unfair to Sinclair because the attention she’ll need?

My husband is American, we cannot make plans to travel internationally because I can’t leave the country with Sinclair as we’re awaiting surgery.

We thought we would have a specialised team if we had any issues or concerns. Now what?

Toilet training? What would that look like? What do I now have to consider for Pre-Kinder?

The only answer I get now when I voice my concerns to the dismantled CPRS clinic are “Parents are resilient and they have shown us new things all the time.”

I commend this motion to the house. I thank those who have added to this debate today, and in particular of course I would also like to pay tribute to Ashlea and Sinclair for their forbearance and for their determination. Of course for the care of her loved one, I hope this matter is resolved swiftly.

Sheena WATT (Northern Metropolitan) (16:40): Thank you for the opportunity to rise today to speak on the motion brought forward by Mrs McArthur regarding the colorectal and pelvic reconstruction service, CPRS, at the Royal Children’s Hospital. This is an important matter, and I take the time now to acknowledge Mrs McArthur’s sincere interest in ensuring that children and families affected by complex colorectal conditions receive the best possible care. Can I also take a moment to acknowledge all other fellow members who have made a contribution and joined so sincerely in sharing the stories and the lived experience of those in our community.

What this motion does is it speaks to and acknowledges the world-class nature of the CPRS, the benefits it provides to patients and to families and the need for certainty around its future; calls on the state government to continue the CPRS in its original form; and urges the Minister for Health to liaise with the federal government to secure its funding. It is worth noting for the chamber that I am a member for Northern Metropolitan Region, and that includes the Royal Children’s Hospital. So can I take a moment to acknowledge the extraordinary leadership, research and delivery of world-class health services right there in the Northern Metropolitan Region. I am enormously lucky to have it essentially at the end of my street. This is an enormous privilege and one that I do not take lightly. I know from being around my community that people come from all over Australia to enjoy the world-class services of the Royal Children’s Hospital, and in fact some of the most complex cases are even international cases. I know because I hear those helicopters that come in and land at the hospital.

Can I just say too that I want to outline that the Allan Labor government is entirely committed to health care, particularly for children, and the services it provides, and clarify the current and future status of the CPRS. It is a highly specialised patient-specific surgical, nursing and allied health service, providing care for children with complex conditions such as Hirschsprung disease, anorectal malfunctions and chronic constipation. It really is unique in Australia, and it provides crucial support through outpatient clinics, nurse-led bowel management, stoma therapy and psychological support. This holistic approach ensures that children not only receive medical treatment but also the necessary allied health support to improve their quality of life and overall wellbeing.

I do not have the lived experience of Mrs McArthur when it comes to Hirschsprung disease, but can I take a moment to acknowledge the incredible complexity when it comes to stoma therapy. It is something that I have experienced, not with my own body but in caring for a very loved one who was the beneficiary of some stoma therapy. I tell you what, it is an extraordinary development in medical science. Can I also acknowledge and thank all the workers that make it possible, the folks that come out to our homes and the folks that patiently sit with us and explain what it is that we need to do to replace stomas, because it is not an easy thing to do. As we have heard the complexity of all these conditions being shared here in the chamber, I would also say that it is a lot for a family to learn. These are not things found in the mummy blogs or in the books; these are really complex treatments for your children, and it takes a lot to stretch yourself and learn these things. So can I just acknowledge all the parents that have gone through an enormous learning journey to learn about these, because I remember learning about stoma care and thinking, ‘This is the most complex thing ever.’ I learned about it and fumbled along the way, but the patience of the nurses and the care professionals was something that I will cherish and remember always.

I also just want to go back and acknowledge that the CPRS is so critical in that it alleviates pressure on other healthcare services in Victoria, particularly emergency departments, which are not equipped to manage these complex cases. By keeping the CPRS fully operational we are preventing the unnecessary diversion of cases to less specialised facilities – because these are incredibly specialised treatments; I cannot say that enough – and ensuring the best outcomes for affected families. The impact on this service is clear: it has transformed the care available to children with complex conditions, providing them with specialist treatment that improves both their physical but also their emotional health. We absolutely recognise the importance of maintaining high-quality paediatric care, and to be clear, we fully support the principle that children with complex medical conditions should receive world-class treatment at the Royal Children’s Hospital, as indeed they do. The Royal Children’s Hospital has a long history of treating paediatric colorectal conditions, and this care will continue. The CPRS model was initially funded through a one-off federal grant. Many of the improvements will have some really long-term benefits here in Victoria, including expanded stomal therapy capacity, a dedicated colorectal clinic and greater access to allied health services, such as psychology, social work and dietetics. We want to assure the public that the core high-quality medical care for these children will continue. Patients will still receive allied health and nursing support through the hospital, just as children with other complex surgical conditions do.

I would like to join my colleague Mr Galea in offering my support for the work of the CPRS – support enjoyed across the chamber from other speakers on this motion today for the Royal Children’s Hospital – and reaffirm that we on this side of the chamber have a really strong record of investing in our public health system. We are committed to ensuring that the Royal Children’s Hospital remains a world-class institution. Even though sometimes those helicopters that come through in the middle of the night wake me up and I wonder what is going on, I know that at the end of that hospital ride that patient will be treated by world-class physicians and a world-class system that can only be provided here in our city. That makes me a little bit proud each and every time I hear them and sometimes a little bit worried about what is happening and what the story is that has brought that helicopter to the sky.

I want to thank Mrs McArthur for bringing this motion forward and also for supporting the families to be here and hear our contributions. It is not often that we get to have the chamber full of people with real-life experience of the things that we are discussing, and so it matters and makes an enormous difference. Our priority absolutely remains the same, and that is the health and wellbeing of Victoria’s children, and we will continue to invest in the Royal Children’s Hospital. Long may those helicopters continue.

Joe McCRACKEN (Western Victoria) (16:48): I too rise to speak on Mrs McArthur’s motion, and I commend her for bringing it to the house today. I particularly want to talk about Meg from Ocean Grove in my electorate, who is a mother to an 11-year-old daughter who suffers from chronic constipation. This is Meg’s story and these are Meg’s words:

[QUOTE AWAITING VERIFICATION]

My first knowledge of the CPRS closure was the email on Friday that I read while sitting with my daughter in emergency at the Royal Children’s Hospital. I had no warning this was happening and feel fortunate to be surrounded by other families at the barbecue on Sunday just gone, feeling the same sense of anger, anxiety and pure disbelief that this has happened. My 11-year-old has experienced chronic constipation since birth and started school with faecal incontinence. After seeing multiple professionals for several years, we were referred to the paediatric gastroenterologist at the Royal Children’s Hospital. This was our pathway that landed us to the CPRS team around five years ago. My daughter had an appendicostomy and a Chait button inserted. The surgery has been life-changing. Medically, we can clear her bowel out every day. However, there are regular complications, such as blocked tubes, rashes, bleeding from the stoma, dislodged Chait button and occasionally impaction still occurring.

Many of the complications have been managed at home, with timely advice from the CPRS clinical nurses and stomal nurses preventing hospital admissions.

We live in Ocean Grove. Our closest hospital is Geelong. We found one incontinence physiotherapist that had some understanding of our daughter’s condition. However, local GPs do not have confidence to address complications and tell us we need to go back to hospital, particularly the Royal Children’s Hospital, for advice. We also attended Geelong Hospital for an inpatient admission prior to the CPRS. My daughter experienced treatment that has had lasting psychological impacts and has left us without any confidence that our local ED is a viable option. In short, we have no other option but to travel to the Royal Children’s Hospital for specialised care.

The psychological impact of colorectal conditions is very real. My daughter has gone through periods of anxiety related to her condition and feeling very isolated and unable to share with her friends due to extreme embarrassment. She has missed several days of school due to home treatment, hospitalisation and travel to the Royal Children’s. This has had severe impacts on her learning at school. Colorectal conditions are isolating. They are not seen in the media, featured on the Good Friday Appeal or talked about by those that are impacted. They are extremely isolating conditions that no-one understands or wants to hear about.

The CPRS team have created a wonderfully safe place for my child and me to share my worries, concerns and questions and to have them met with unqualified understanding, care, kindness and solutions. More importantly, having a small, accessible and responsive team has prevented small complications ending up in ED for yet another admission. Additionally, the CPRS picnic has created a tribe of ‘button buddies’ that have a special bond that is quite unlike any other friendship. They see other kids with buttons like their own and offer support to each other in a way that adults around them are unable to do in quite the same way. This has been created by the CPRS team, who listened to their little people and created a space for this to happen. Medical care is so much more than physical for these kids.

That is Meg’s story and, like so many others, shows the need to have ongoing support to the CPRS. I urge members to support this motion and support the families and patients who rely on this vital service so very much that it is life changing. Thank you again to Mrs McArthur for bringing this on.

Sonja TERPSTRA (North-Eastern Metropolitan) (16:52:462:): I rise to also make a contribution on this motion standing in Mrs McArthur’s name, and I too want to thank Mrs McArthur for bringing this motion. I also want to acknowledge her personal connection to this matter.

I have learned a lot today about some of the diseases that are experienced and treated by the colorectal and pelvic reconstruction service (CPRS). It is one of the things about this job; you tend to learn a lot once you are in here. I can also say as a parent – when I had my son he was premature – I also had a similar journey with special care nurseries, paediatricians, doctors and the like, but of course not through this service. I understand that when you are a new parent sometimes you are plunged into a very disconcerting journey, not only having to navigate the experience of being a new parent but also having to deal with health concerns, so I also want to acknowledge the parents who have come in today into the gallery to listen to the debate and also anyone who may be watching us at home. That might be a few people, but nevertheless we want to acknowledge everyone who has an interest in this debate today. I can say that the government will not be opposing this motion. We support this motion.

For those who may be watching along at home, as I said, I did not know what was involved in this. I note, Mrs McArthur, you mentioned Hirschsprung disease, so I just did a little bit of research myself. I know Mr Galea made a very eloquent contribution around the sort of work that CPRS does, and there is good news and bad news of course. When a little one needs a service such as CPRS, it can be complex. Some children will not have a lot of complexities, but others will. It is a real testament to the doctors, the nurses and the clinicians that are involved in this service – the treatment that they provide for children. Having a look at Hirschsprung disease, some of the surgical interventions mean that the outcomes are excellent.

It is not always straightforward, though, and sometimes it can be years in the process of getting a really good outcome for little kids. Nevertheless, the help and support that has been provided by CPRS – from everyone who has spoken on this in the chamber and looking at the reports of parents who have used the service – is really second to none. It just goes to show that we are so fortunate to be living in a country like Australia, where we have a fantastically supported public health system that is able to offer expert care and support to children.

A friend of a friend I know had a child who had similar indications, and it can be very disconcerting. Just looking at your motion, Mrs McArthur, it is framed very well, because you go into great detail about the sorts of supports – not only the medical intervention but the psychological support and support for parents who are having to get their heads around this as well. As I said, when you are a new parent having to deal with yet another issue that you are not familiar with, it helps to be provided that help and support by the expert clinicians and the nurses who are so caring and take expert care of our little people but also the families and the parents who are navigating this.

There is nothing more challenging than having to deal with a little one that is unwell, and of course when they are a baby they cannot tell you what is wrong. They cannot talk to you yet, so you have to try and figure that out. I remember those early days only too well when my little ones were unsettled. That is why in our health system we have so many experts to be able to be on hand to help navigate and find what is actually going on. A service like this is really something, and to have all that expertise in one place is excellent.

What I can say is I also looked at some of the responses that our government has made and some of the other circumstances around the funding. I note that the funding that was provided to this service was a $5.9 million federal grant that was provided back in 2019. I note that that funding has come to an end and that our health minister, Mary-Anne Thomas in the other place, said that she has sought assurances from the hospital about this service. She has said that in terms of our funding support for the hospital, we have not changed our funding support at all and we continue to fund the hospital. Ms Thomas has also said that the health service has assured her that the quality and level of service to families would be maintained. That is important, because families also need certainty about the expert level of care and support that they can access. That is reassuring in one sense, but nevertheless it is the complex level of care that is often required. As I said, little ones might have surgery in the beginning but they might need additional surgeries over their journey and lifetime.

Our government in the 2024–25 budget invested a record investment in our health and hospital systems, including the Royal Children’s Hospital. We have invested $56.4 million to expand the existing emergency department and deliver a new 30-bed inpatient unit at the Royal Children’s Hospital. This expansion will allow the hospital to continue to meet increasing demand through the expansion of acute paediatric beds and emergency department services. Also, the first stage of the Royal Children’s Hospital expansion to deliver a new 30-bed inpatient ward on level 5 was completed in 2022 and is treating patients with a range of different illnesses, including cancers.

I note the clock is going to beat me on this. Unfortunately, I came at the end of this debate. I just want to make sure that everyone understands that I am not trying to quickly rush through this. The clock is going to beat me, so I have to wrap up my comments very soon. Again, I just want to commend Mrs McArthur for bringing this. I also want to note that the tone in which this matter has been debated today has been sensitive and it has been done with a great sense of collegiality, which is a rare thing in this place. It is a good thing that we can all stand here in support of this service. The government will not be opposing this motion.

Ann-Marie HERMANS (South-Eastern Metropolitan) (16:59): I just want to rise to use the last 16 seconds to thank Mrs McArthur for this incredible motion that she has put forward and to thank the families that are here and those that are watching online. I have been incredibly moved, and I am so glad that we are able to stand up and support this motion. Thank you for bringing it to the house.

Bev McARTHUR (Western Victoria) (16:59): Poo is not a dirty word. It is the difference between life and death for vulnerable children battling rare congenital bowel conditions, colorectal malformations and chronic constipation. Never underestimate the celebration that follows a child’s first bowel movement after corrective surgery. Never underestimate the relief parents feel when their child can attend kindergarten or school and play sports without the constant fear of soiling themselves. These are life-changing results of surgery, a correct diagnosis and the ongoing support from the colorectal and pelvic reconstruction service allied health team at the Royal Children’s Hospital (RCH). So why then would any government, any bureaucrat, any health professional, any human being want to end or even change this essential service – a service that is endorsed by every parent who has ever walked through the doors of Professor Sebastian King’s world-class clinic at the Royal Children’s Hospital. In fact any change to services so that they are in a manner consistent with that delivered to other patients, which is what the hospital is proposing, is incredibly detrimental to the child’s health. I reiterate: this service has already changed. The CPRS will be no more. The funding has ended, and the CPRS wraparound service will end with it. No amount of spin from a hospital bureaucracy can change that.

Why is the hospital trying to lower the gold standard of care already provided to our precious children? And the cost? Very little. It is peanuts – just over a million a year. In fact the cost of changing the logo, the letterhead and the furniture for the Minister for Health’s office would clearly be higher. Many of the cost savings made by the CPRS for the community are hidden. It is not easy to put a price on the mental health impacts of specialised support that enables a child to go to kindergarten consistently or allows a parent to get to work and function. Even the direct savings are a false economy. In the short term the RCH may save money cutting this team, but the burden will simply be transferred to other parts of the Victorian health service. This is why the minister needs to take an overall view and intervene. And worse: isolated diagnoses and treatment in health care across the state will take longer and be less integrated and less effective. It will create more work and more cost. The $5 million funding we are talking about has saved countless millions and improved hundreds of lives. It is the definition of good value by government. To jeopardise it for short-term savings is unforgivable. This motion simply calls on the state health minister to pick up the phone to the Prime Minister and the federal health minister say, ‘Please, continue to save our children.’

I want to thank my colleagues for speaking on this motion and supporting it so vigorously: Dr Renee Heath; Joe McCracken, my colleague in Western Victoria; Nick McGowan; Ann-Marie Hermans; Dr Sarah Mansfield, the Leader of the Greens in this house and also my colleague in Western Victoria; Rikkie-Lee Tyrrell from the One Nation party; and all the Labor MPs – John Berger, Michael Galea, Sheena Watt and Sonja Terpstra. I thank you and I thank the Labor Party for not opposing this motion. Your unwavering support and sharing the stories of families affected by complex colorectal issues is important to this place. Most importantly, I would also like to thank Jeff Bourman from the Shooters, Fishers and Farmers Party, who gave up his spot today so that I may bring this motion forward. Thank you, Jeff.

Families feel abandoned after receiving the letter from the Royal Children’s Hospital on Friday informing them that the CPRS they relied on is no more. It is heartbreaking. It is a service which is being lauded by the most eminent health professionals in the world. Please make sure it continues. For the kids in the room today, I am sure you would like the excitement of hearing the bells ring. But you know what? The bells are not going to ring, because everybody is supporting this motion. Everybody across all parties are supporting this motion, so you will not hear the bells, children. Believe it or not, we are all supporting this motion to make sure the CPRS continues. Thank you to the parents. Thank you to everybody who has come here today and the members of Parliament who have supported the motion.

Motion agreed to.