Wednesday, 4 March 2026

 Bev McARTHUR (Western Victoria) (17:36): I move:

That the petition be taken into consideration.

One year ago in this chamber I warned that without dedicated wraparound care colorectal patients would suffer. A year on, children are suffering because that care no longer exists. Last year I shared the story of Bridget, a mother and constituent near Warrnambool. She and her family are in the gallery tonight. At just 40 hours of life her son Sidney was airlifted to the Royal Children’s Hospital with severe bowel obstruction. After a week in neonatal intensive care he was diagnosed with Hirschsprung disease. At six months old he underwent pull-through surgery to remove the section of bowel without nerve endings, which caused repeated blockages. Bridget understood that surgery could not cure Sidney’s condition. She had hoped that the worst was behind him. But the colorectal and pelvic reconstruction service, the CPRS, so important for little Sidney’s health and quality of life, was closed in May 2025, so Bridget’s problems were just beginning.

The CPRS was a unique world-class multidisciplinary service. It provided patient-specific surgical, nursing and allied health care to children with complex conditions such as Hirschsprung disease, anorectal malformations and chronic constipation. It was the only service of its kind in Australia, globally recognised and respected. In the months leading up to the closure last year, little Sidney had 17 dirty nappies a day. He could no longer have baths, only short showers, and would defecate at least twice during a 5-minute shower. Bridget asked whether that was normal for Hirschsprung disease. No, it was not normal. Under the CPRS model Sidney could have commenced a bowel management program with clinical nurse consultants via telehealth within 48 hours. Instead he waited eight weeks for a surgical appointment. Bridget called the hospital three times a week for six weeks chasing a prescription. Calls were not returned. It took a volunteer parent from the colorectal consumer advisory group to escalate her unanswered calls before a surgeon contacted her directly. How is it that volunteer parents are acting as liaison officers in Australia’s premier children’s hospital? But by then it was too late. Sidney was rushed from the Warrnambool hospital. He had a complete bowel obstruction. He spent six nights admitted. He endured a bowel washout under sedation, further procedures, biopsies, iron infusions and botox under anaesthetic. His recovery from anaesthetic was, in Bridget’s words, scary. He was like a caged lion.

The escalation was avoidable. Colorectal conditions deteriorate quickly; they require constant adjustment and follow-up. As the medical journal Children states:

To achieve a good functional result for a colorectal patient … it takes hundreds of hours of additional work to achieve good results – the vast majority of which relies on good nursing care.

That was the CPRS model: consistent specialist nurses, care coordinators, psychological support for children enduring invasive procedures and for parents administering daily enemas and dilatations at home, and expertise that recognised these rare conditions immediately and intervened early. Without it, a child becomes critically ill and a mother blames herself, saying, ‘I can’t begin to tell you how deflating it is to have calls for help go unanswered.’ There are hundreds of families like Bridget’s, perhaps even thousands. One or two surgeons, however skilled, cannot provide the wraparound, ongoing care required for a lifelong, unpredictable condition. The CPRS improved quality of life. It kept children out of emergency departments, out of critical care beds and out of ambulances. It saved trauma and it saved money. The cost of Sydney’s emergency transfer and prolonged admission could have been avoided. The vision for the Royal Children’s Hospital is a world where kids thrive.

 Michael GALEA (South-Eastern Metropolitan) (17:41): I am pleased to rise, following my colleague Mrs McArthur, to speak on this motion regarding the colorectal and pelvic reconstruction service today, and in doing so I wish to acknowledge my colleague Mrs McArthur for her continued advocacy on this matter. It is a matter that is of concern and interest, I know, to members across this chamber. I note that we did, as was mentioned, discuss and debate this issue just a little over 12 months ago in this place too. The CPRS, as members will be aware, was a one-off, time-limited initiative of the Commonwealth government, which has now lapsed. We have in this state a remarkable children’s hospital, the Royal Children’s Hospital (RCH), which has provided much succour and support to countless Victorian families in their times of need. I do want to take a moment to acknowledge the remarkable efforts of the doctors, the nurses and the support staff in that hospital and the work that they do on an ongoing basis. It is clear to me that the CPRS was providing particularly special support, particularly special outcomes and, frankly, a sense of security for countless Victorians as well, many of whom I know are with us today. On that motion just over a year ago we had as well many people joining us in the chamber, and I was able to share the story of a wonderfully bright young lady called Milly, who lives in my electorate. I shared the words of her mother Anthea to speak to the level of support that the service provided to them.

It became clear to me that the service was unique in that the conditions that it treated are themselves very unique and often not sufficiently covered by the breadth of knowledge that many other general practitioners or specialists will have, despite the wonderful work that they do. The CPRS provided that one source of information, of guidance and of solace to those families. Since that time the time limit for the federal initiative has come to an end. I know many of us were hoping that the federal government may continue that funding, and that is something that, at least as of yet, has not happened. There have been many other conversations that many of us have undertaken across this chamber with the minister, and I acknowledge the minister for her great investment into the RCH as well.

I do want to come back to my constituent Milly and a conversation I had with her mum Anthea earlier this week, when she spoke to some of the challenges that they have faced in more recent months, such as with the replacement of a button, which would have taken around a day in previous circumstances but in this situation took a bit over three weeks, and the psychological distress that caused Milly as well, which is something that is worth noting. I do think that we need to continue this conversation. We need to find a workaround, a solution that works for families who are dealing with this issue now and for families that will in years to come.

I note that we do now have an auxiliary group, the Colorectal Champions, and I really wish to acknowledge their volunteer work, supported by the RCH. They are people, most of whom have been involved in one way or another with this issue, who have come together themselves to raise that. I am pleased to see them here in the chamber today and advance that as well. My colleague in the other place Matt Fregon did wish to be attending this debate as well, but he is in the Speaker’s chair in the Assembly at the moment. He and I have been working on this issue as well, and we have reached out to the CEO of the Royal Children’s Hospital, Dr Peter Steer, seeking to meet with him on behalf of our constituents in particular but to raise this issue and to see just how we can make the support services provided to families dealing with these issues better and as strong and as improved as they can be, whether it be through a full return of the CPRS or through another mechanism. We are eagerly awaiting a meeting with the CEO, and I very much look forward to continuing to do what I can to raise the voice of constituents of mine who have raised this issue with me.

 Sarah MANSFIELD (Western Victoria) (17:46): I want to start by acknowledging and thanking the petitioners who have signed Mrs McArthur’s petition. It is worth noting the extraordinary number of them; there are over 10,000 signatures on this petition. That is quite incredible for what is a fairly specialised service. Most Victorians I think will have never heard of the colorectal and pelvic reconstruction service before, let alone ever had to use it, but for those who have, it has been life changing. That is really reflected in the incredible level of support the service has, as demonstrated by this petition.

It is a unique service, as has been described by Mr Galea and Mrs McArthur. It was established in 2019 and provided holistic, dedicated services – like dieticians, psychologists, paediatric surgeons, nurses and care coordinators – all to support babies and children with conditions like anorectal malformations, chronic constipation and Hirschsprung disease, amongst others. These are complex conditions. They can be very confronting for families, and there can be a lot of stigma. There is a lack of awareness, not just amongst the broader community but also even within the medical profession itself, about many of these conditions. I have previously spoken to families and clinicians about their experiences with the CPRS, and having a service that deeply understands the needs of these families – where sometimes there can be multiple family members affected, because there can be a genetic basis to some of these conditions – and where they have the same group of health workers that they can develop a relationship with and experience that continuity and trust is therapeutic in and of itself. Not only are families spared the stress of having to explain their condition again and again to different providers, but issues can actually be identified more readily – because of that familiarity and that relationship – and can be dealt with more quickly and complications can be prevented. This is something that is supported by evidence regarding this sort of specialised care model for complex conditions.

I have spoken in this place before when this issue has previously come up about the value of this kind of service for GPs as well – for GPs like me – when they are out in the community trying to support a patient or their family with one of these conditions that they do not necessarily have the depth of knowledge required to manage. If you can quickly and easily access advice from someone who knows that family well, you can provide better support to that family and to that patient.

Since we last debated this topic the children’s hospital executive did meet with Mrs McArthur and me and some representatives of families – and I am aware that there had been ongoing discussions between the Royal Children’s Hospital (RCH) executive and family representatives – to try and find a way that this terrific service, or elements of it, could continue. I appreciate that families have still been able to access high-quality care through broader services and in no way want to cast aspersions on the health workers or services providing that care, but the signatures on this petition being debated today make it clear that the needs of these families are still not being completely met. Something has been lost in the change in the model of care and the loss of the CPRS. It was a credit to the RCH that they established this service back in 2019, and it became globally recognised for providing gold standard care. While I appreciate that maybe there have to be some changes, I sincerely urge the government and the Children’s hospital to listen to these families and commit to restoring the things about the CPRS that have clearly been lost, that were so valuable. That continuity, that familiarity is something that is clearly missing in whatever care that they are currently being provided. I commend this petition to the house.

 Renee HEATH (Eastern Victoria) (17:50): As we all know, the closure of the colorectal and pelvic reconstruction service last year is the issue that brings us all here today. It has ignited a passion in many parents to advocate for the model of care that best serves their children and their families. At the time of the closure, first indicated in February 2025, the new CEO of the hospital recognised the parent and patient perspective had not been consulted as part of the changes made to the CPRS. He initiated the establishment of the parent advisory group to work with the hospital. Since its establishment in June 2025 the colorectal consumer group has met nine times. There are 15 parent or carer representatives and five hospital staff members, including a member of the Royal Children’s Hospital (RCH) executive and surgeons.

The following statement has been provided by Alexandra Ellis, a mother and the volunteer co-chair of the colorectal consumer advisory group. The following statement has been prepared on behalf of the parent and carer members of the colorectal consumer group, and I am going to read it. It says:

Since the closure of the CPRS due to the end of federal funding in June 2024, the RCH has actively engaged in consultation with patients, parents, carers and supporters as part of the colorectal consumer advisory group. Together with the executive and medical staff from the RCH, this group has undertaken a significant, robust and clear assessment of the current patient needs and resulting gaps in services which are no longer being provided. This joint assessment has uncovered that with the current resources available the gaps in the service are now causing quality-of-life impacts to patients and their families. The highest priority gaps include, but are not limited to, clinical nurse consultants and psychological services. Other areas of service decline include multidisciplinary care coordination, dietetics and transitional programs into adult care.

There is clear evidence that the multidisciplinary and wraparound care that the CPRS service used to provide reduced inpatient nights and emergency department visits and improved quality-of-life outcomes for patients. Since the closure these improvements have been reversed. Patient care and quality of life are now in decline, while hospital costs increase due to patients returning to hospital when previously they could have been assessed and accessed care from home. The impacts of this decline in service have been shared today through patient and family stories.

We commend the hospital on their willingness to investigate our concerns. The consumer advisory process has allowed both the hospital and parent representatives to reflect on the changes in services and delve deep into a better understanding across both parties around patient needs, actual impacts of the closure and current hospital resourcing availability. We have worked thoroughly and collaboratively to now fully understand specific areas that need to be reinstated and resourced.

It is now clear that the hospital no longer has the resources it needs to provide even just the baseline care our children require to be able to live a dignified life. We therefore request that the Legislative Council call on the government to ensure that the colorectal patients at the Royal Children’s Hospital are provided with the full range of services required for their care and to commit to safeguarding the long-term sustainability of such services.

That is the end of their statement. I want to thank everybody who has put into this. Everyone embarked on this patient advisory process with the desire to ensure sick children with colorectal conditions can be adequately cared for. The result of this robust collaboration is clear. The hospital needs dedicated and immediate funding to ensure the restoration of the CPRS on a permanent basis, as this is the best model to care for complex conditions for children with these issues. I commend the petition to the house.

 Ingrid STITT (Western Metropolitan – Minister for Mental Health, Minister for Ageing, Minister for Multicultural Affairs, Minister for Prevention of Family Violence) (17:55): We all know that there is nothing more challenging for families than when our children are unwell, and the Royal Children’s Hospital provides world-class care for some of the most complex paediatric cases in the country and is a world-leading provider of paediatric care, delivering some of the most complex, specialist high-acuity care in the country. The hospital’s care extends to children not just in Victoria but Tasmania, southern New South Wales and other states around Australia and indeed overseas. They are also the designated statewide major trauma centre for paediatrics in Victoria, as well as a nationally funded centre for cardiac and liver transplantation, and the leader of many other statewide services. I know that the Royal Children’s Hospital does hold a very special place in the hearts of every Victorian family. Access to high-quality, safe and supportive care for children and families is an absolute priority for the Victorian government, and for decades the Royal Children’s Hospital has provided care for our kids with complex colorectal conditions. They continue to do so, and we will continue to support the Royal Children’s Hospital and all our hospitals.

The Victorian colorectal and pelvic reconstruction service was, as some of my colleagues have already indicated, a one-off Commonwealth grant that was delivered by the Royal Children’s Hospital, and many of the improvements delivered through this project will have ongoing and long-lasting impacts and benefits for patients and families, particularly in the model of care delivered at the Royal Children’s Hospital. These include an expansion of the RCH’s stomal therapy capacity; the establishment of the colorectal clinic, which will continue; and a stronger, more holistic approach to supporting patients, which includes psychology, social work and dietitian services that have been and will continue to be delivered. The high-quality core medical care received by patients will continue, and I am advised that patients will continue to receive allied health and nursing support through those central teams in the same manner that children with other complex surgical conditions do.

Our record investment in health also has included an uplift to all of our hospitals, including the Royal Children’s, for the care that they deliver. Clinical care decisions are led by clinicians, and I am absolutely confident that the level of care that continues to be delivered at the Royal Children’s Hospital is world class. We will continue to support the work of the Royal Children’s Hospital, and we have been providing further investment to allow the hospital to expand their 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. 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 it is treating patients with a range of different illnesses, including cancer.

I too want to thank those that have been involved in this petition, and I know that the Royal Children’s Hospital take incredibly seriously the very specialist care that they have been providing to children and by extension their families. As I have indicated, many of the improvements that have been delivered through the CPRS will not end just by virtue of the Commonwealth funding grant ending. They will continue to be delivered and embedded through the model of care at the Royal Children’s Hospital and continue to provide that highly specialist care. We thank our nurses and our clinicians at the Royal Children’s for the incredible work they do day in and day out.

Renee Heath: I ask that the clock be extended by 6 minutes.

 Georgie PURCELL (Northern Victoria) (18:00): I too rise to speak on this petition. I want to thank Mrs McArthur and all petitioners who have signed it for bringing this important debate to this place and to state from the outset that I support any move that would see the colorectal and pelvic reconstruction service reinstated at the Royal Children’s Hospital. The work of this clinic cannot be underestimated, so when I heard about its closure, I knew that we as politicians all had to do something to find an urgent solution for the families who rely on this vitally important clinic. That different parties across the chamber have spoken on this petition today really demonstrates the importance of this clinic and how much the stories have united us. I want to acknowledge the colorectal consumer advisory committee for their advocacy on this matter, and I know that many of them join us in the gallery here today. They are an amazing group of people who have used their own stories to push for change. To recap, the CPRS, as it is known, was a highly specialised unit at the Royal Children’s that provided care to children born with anorectal and colonic malformations and diseases. Last year the clinic closed after a $5.9 million grant from the federal government in 2019 was not renewed. It is simply unacceptable for governments to just say that these families will continue to get care while at the same time not renewing this highly important specialised service.

In talking about this issue, I want to bring attention to the story of Seija. Seija’s daughter was born with an anorectal malformation known as a rectovestibular fistula. Within minutes of her birth, nurses recognised that Seija’s daughter’s abdomen was distended and there was no anal opening. Before Seija was able to hold her daughter, she was rushed to the Royal Children’s Hospital. When she was just three months old, she underwent a 10-hour corrective surgery, which also formed a stoma, and due to COVID this was in place for nearly a year. During that time the family managed leaks, bleeding, skin breakdowns and the daily realities of looking after an infant with a colostomy. Seija and her partner were also required to perform twice-daily rectal dilations, which involved inserting a metal dilator rod about 10 centimetres into her rectum. The couple has since learned that their daughter is permanently faecally incontinent because she does not have an internal sphincter.

I was about to talk about the fact that I have obviously just become a new mum. As someone who has gone through this experience recently, I know how difficult motherhood is, particularly the vulnerabilities in the beginning, and I cannot begin to comprehend the added struggles that these families have gone through on top of that. Seija tells me the difference in care before and after the closure of the CPRS has been stark and that what was once a coordinated, responsive team available within hours has been replaced by generic communication channels and delayed responses of sometimes up to two weeks with persistence. ‘We know firsthand how essential wraparound care has been for our daughter, especially now that it is gone,’ she said. This service has proven to be life-changing for the families who use it, and without it they are worse off. I call on the government to find a solution urgently, to act on the ask of the people who signed this petition and the many families who reached out to all of us and are joining us in the gallery today – for Seija’s family and for every other kid that has gone or will go through this service.

 Georgie CROZIER (Southern Metropolitan) (18:04): I rise to speak to the petition presented by Mrs McArthur this evening, and the reason we are debating this is because of the enormous numbers of people that have signed this petition – over 10,000. That is not an insignificant amount, as I have said. That just goes to show, as Dr Mansfield and others have said, the concern that has arisen out of the decision to shut down the colorectal and pelvic reconstruction service at the Royal Children’s Hospital.

I was first alerted to this issue in February of last year, when a mother from New South Wales contacted me. She has two children who are affected by bowel disorders, one of six years and one of three years. Both suffer from two of the most serious forms of the condition, Lucy with long segment and Hannah with total colonic, meaning the ganglion cells are missing from the entire colon. She wrote to me:

The condition is serious, unpredictable and complex. Hannah continues to live with a stoma, and Ileostomy Bag, which helps her manage the condition. When Lucy was born, we spent the first 9 weeks of her life living at the Royal Children’s Hospital in Melbourne, and subsequently, across the first 12 months of her life, we spent a total of over 9 months at the Royal Children’s Hospital. Most of our visits were unplanned admissions, involving transfer from Albury’s Emergency Department via emergency patient air transfer. Hannah has walked a similar path with her condition; however, her journey was made significantly better by changes which the then Liberal, Government were able to make.

Of course people have referred to that one-off funding that Greg Hunt provided back in 2019 to set the clinic up. Even though it was one-off funding, it does not mean that the service should shut down, and that is the issue here. I spoke to Mel last night. She phoned me, knowing that this petition was going ahead. As others have said, what this service does is provide psychologists, dietitians, social workers, stomal therapists, clinical nurse consultants, all providing that wraparound care for the children that are affected and their families. This service, which has looked after many hundreds, thousands of children across the nation, has been really nation-leading, and we know that from the stories that have come through the media and through other means and the advocacy that I have raised and Mrs McArthur certainly has raised over the last 12 months and beyond. Her petition talks about why this service is important and what the state government needs to do.

We should not actually have to be standing here debating this, because when I spoke to Mel last night she said, ‘The care’s just going to be put onto the local services. My children are going to need emergency admissions into Albury–Wodonga and then be flown back down here and back into the emergency department, where we had the wraparound service that could deal with it, that prevented all those emergency admissions.’ It makes no sense. It makes economically no sense, let alone the holistic care that these children got. And yet this government is refusing to remedy a very simple thing.

I have been to the Royal Children’s Hospital and I have spoken to the CEO Dr Steer, who actually reassured me that, as the minister said – she is not here anymore – it was embedded in the model of care. That is what they reassured me. But that is not what the parents have told me. That is not what Mel told me last night. All of that support has gone. As Ms Purcell said, the wait times and the rigmarole that people have to go through to try and get that so-called embedded model of care is putting the putting the health and all sorts of elements of these children’s care at risk.

The other thing I want to say in the final few seconds that I have got is it is not only babies that are affected, it is the teenagers that the Royal Children’s are assisting with and this unit assisted with in helping teenagers navigate both their sexual health and also their bowel health. What a very important process and very supportive process this unit did. We see the amount of waste and mismanagement and the corruption and the huge amounts of dollars going out the window. Congratulations to Greg Hunt for having the foresight to set this clinic up. It should not mean that it gets shut down. It should continue. That is what good governments do: they continue with services that actually make a difference to people’s lives, and this unit did.

 Bev McARTHUR (Western Victoria) (18:09): I want to thank my colleagues the Shadow Minister for Health Ms Crozier, Dr Heath, Dr Mansfield, Georgie Purcell and Michael Galea for speaking on this petition today. Unfortunately, the minister just read out the propaganda from the management of the hospital. That is what we heard over there, very sadly. I want to thank Bridget and her family for being here – and all the other families – because Bridget has put herself out there in the public arena to raise this issue so publicly, not just by authoring the petition but by the media she has done and by allowing me to read out her very personal story. I would also like to acknowledge my daughter Sarah, along with Seija and Alex, who work so hard for all parents across Australia to ensure that this service is continued.

It is a monumental disgrace that it has been closed down for a measly $1 million a year. This service is no longer available to these babies, children and families across this country. Those in government in Victoria and in Canberra, the Labor governments, should hang their heads in shame that they have done this to the children and families of Australia and particularly Victoria. The colorectal and pelvic reconstruction service improved quality of life. It kept children out of emergency departments, as Ms Crozier said. It is penny-wise and pound-foolish to stop this sort of allied health care that we actually promote in many other areas to stop the need for patients and families to get on an air ambulance and fly from all parts of Victoria and Australia to the hospital. No emergency department and no doctors waiting room can help these children. They have to have this specialised care.

Motion agreed to.