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Mitrofanoff Online Networking Sessions

Saturday 26 September 2020

The Trustees have taken the decision to postpone the Patient Education Day (PED) in London scheduled for Saturday 26 September 2020. With the continued uncertainty regarding the pandemic, we feel a decision is required now so that plans may be made. We want to assure our members that we hope to return to Patient Education Days, where our community can meet in person, in the future as soon as it is safe to do so.

However, we would like to announce a new intiative – Mitrofanoff Online Networking Sessions (MONS). We shall hold the first of these via Zoom on the day we were due to be in London – Saturday 26 September 2020.

For those not familiar with Zoom please do not worry - we shall be sending out full instructions beforehand. The sessions will be free to attend.

Format:

1) From Saturday 12 September there will be a pre-recorded video available to view - please click here to watch. This will mirror the traditional opening of our PEDs and feature Dan Wood, our Patron (and Consultant in Adolescent and Reconstructive Urology, UCLH) and Sharon Fillingham, Adult Nurse Advisor (and Urinary Diversion CPF/Psychosexual Therapist, UCLH). There are also contributions from our sponsors and we thank them for their ongoing support. Please view this at your leisure in advance of the event.

2) Saturday 26 September, 10:00 to 11:00am – a live Q&A with our panel of experts via Zoom. You can submit questions in advance via email to , or on the day via the Zoom chat box function. These questions will be kept anonymous and only the host will see the questions submitted via the chat box. As time is limited not all questions will be answered but hopefully a broad range will be included.

3) Saturday 26 September, 12:00 to 1:00pm – a Breakout Group where you will have the chance to chat and network in a more informal setting. For this session your video and name will appear on the screen. Depending on the number and mix of attendees, we shall probably split this into separate groups so that everyone has a chance to make their voice heard and feel part of the community. Each Breakout Group will be moderated by somebody from the charity and attendees will be asked to raise their hand if they would like to speak.

Registration forms are now live on the website. You will need to pre-register for each event – joining on the day will not be allowed. There will be a maximum of 100 attendees for each session so please sign up as soon as possible to avoid disappointment. Please note that if you wish to attend both sessions you will need to complete two sign-up forms.

Q&A

Breakout Groups

Mitrofanoff Support provides information, emotional support, reassurance and networking.

Urology problems in general and bladder problems, in particular, are not subjects that are openly discussed. Hence, there is a general lack of knowledge and awareness of what it is like to have a Mitrofanoff.

Mitrofanoff Support offers information and reassurance to individuals (and the people closest to them) who may be about to have, or already have, a Mitrofanoff.

We also work with Healthcare Professionals and Hospital Trusts to improve education and awareness of what it is like to live with a Mitrofanoff.

The purpose of the operation is to restore confidence and convenience to those experiencing incontinence and other urological issues. It is a long-term solution to enable patients to maintain a normal quality of life.

The procedure may be an option for those with congenital malformations, multiple sclerosis, spinal cord injuries, or bladder and prostate cancer.

It is important that you take control of your medical condition and not allow it to control you.

What is a Mitrofanoff?

Creates a channel into the bladder
A catheter is used via the channel to empty the bladder

The purpose of this operation is to form a channel between the bladder and the wall of the abdomen to allow intermittent self-catheterisation ie. drainage of the bladder