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.
- 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