"Continence Clinic for kids with Cerebral Palsy"

My own experience with my child and the many conversations that I have had and witnessed within the Cerebral Palsy (CP) community, indicate that bowel and bladder health is a significant medical and wellbeing issue for children and families, I believe requiring frequent hospital admissions, pain, stress, and a serious decline in children’s health and wellbeing. As I believe this is often not dealt with while the children are in CAHS service, many are moving into adult services with I feel, this issue still an issue, and I believe no plans in place.  

I am a member of many online Australian CP groups and it is an issue that is raised repeatedly. In one group alone in 2020, the issue was raised in separate posts more than 20 times and generated over 700 comments.  This was mainly parents seeking support and advice on how to manage their children’s chronic constipation.  I believe none were being managed medically for this serious health issue.  

I am in contact with several local parents with children with CP who are available to talk about the need for a service which addresses this, I feel,  unmet need. We have either been or currently are, receiving services from CAHS, under the Paediatric Rehab team and many of our kids have had what I believe to be a standard set of regular clinics (orthopaedic services, hip surveillance, paediatric rehabilitation) and then more depending on the medical need of the particular child. We believe that a Continence Clinic should be added to this standard clinic, that the prevalence of bowel issues and the impact on children with CP warrants this consideration.  

For many parents who, in my opinion, are already dealing with a high level of health and allied health involvement in their lives, the unavailability of continence services under disability services previously, and a condition that I believe isn’t treated as the serious medical condition it is, means that we often manage this without the support of our specialists or allied health professionals – and go from admission to admission without ongoing effective treatment. In my opinion, this is both expensive for the health system, has a considerable negative impact on the health and wellbeing of the child and causes unnecessary stress to parents and families.

Research and anecdotal evidence recognise that bowel issues are common with people with Cerebral Palsy. There is treatment available, there is the capacity under the NDIS to access community-based continence nurses to support families and children like there is with other allied health services, but I feel medical specialist involvement and understanding of this issue from the start is vital.