Neobladder support group

Mrs Kavita Sharma1
1Perth Urology Clinic, , , 2Sjog Murdoch Hopital, ,

A neobladder support group was established in Perth with the assistance of Stomaltherapy nurse and business practice manager of the urology practice.

Neobladder patients were reporting a sense of isolation following their neobladder surgery and they had varied levels of satisfaction or dissatisfaction following the surgery.

Patients who have neo bladder surgery report ongoing problems:

  • Varied experiences with level of continence.
  • Constipation
  • Urinary tract infection
  • Mucous in urine
  • Consumption of alcohol reduces night time continence
  • Possible residual cancer
  • Varied experiences with chemotherapy
  • Erectile dysfunction

There is small numbers of patients having neo bladder surgery and no support organisation so these patients feel isolated. It was recognised that a support group was needed for this vulnerable group of patients.

At St John of God Murdoch patients had been put in contact with other neobladder patients when requested and if a willing contact was available. Support needed to be larger than a couple of individuals.

It was hoped that the support group could assist to:

  • Reduce the sense of isolation amongst neobladder patients
  • Allow sharing of information that may benefit other individuals
  • Provide support for prospective neobladder patients
  • Information from invited guests


The initial meeting was held in in August 2018 with patients attending who had had their surgery up to 12 years previously. 15-20 neobladder patients and family members or support person attended. The lead of the group was a neobladder patient. It is expected that the neobladder patients will take over the administration of the group in time.


Continence Nurse/ Stoma Nurse

Urology Practice Nurse