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


This conference is proudly hosted by the Australian Association of Stomal Therapy Nurses:

One of the Association's major objectives is the promotion of quality care for a wide range of people with specific needs. These needs may be related to ostomy construction, urinary or faecal incontinence, wounds with or without tube insertion and breast surgery.

Patients/clients across the life span are provided with preventative, acute, rehabilitative and continuing care as required. Another objective is the maintenance and improvement of professional standards in relation to Stomal Therapy Nursing Practice to the highest degree possible. Recognition of the need for and encouragement of the development of specialist expertise in the field of Stomal Therapy Nursing underpins the Standards for Stomal Therapy Nursing Practice.

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