The formation of a Mitrofanoff is a major operation and you must be completely sure it is the right operation for you. It’s a good idea to speak with or meet somebody who has already got one, and your Nurse Specialist (if they have one) should be able to arrange this. Mitrofanoff Support will also be able to help with this.

• The Consultant Surgeon will be your point of contact to help you decide. Ask as many questions that you want, however trivial you may feel they are.

• The Clinical Nurse Specialist (urology for adults) or the Paediatric Urology Nurse Specialist (urology for children) work closely with the consultant and will be able to answer any questions that you may have missed with the consultant.

​

Please have a look at our Frequently Asked Questions page.  In addition, one of our members has kindly produced this list of questions (document download) that she wished she would have asked before surgery.

​

How Mitrofanoff Support can help

• A dedicated website with a wealth of information on the Mitrofanoff procedure 

• Putting you in touch with others who have been through a similar situation.

• A closed Facebook group where you can interact with others and share experiences with over 1,800 people.

• Patient Education Days, where you can come along and learn more about the Mitrofanoff procedure from health professionals, meet other people living with a Mitrofanoff and see the different types of catheters that are available. Children, family and carers are welcome at these events.

• Telephone/email support.

• Source of information for medics and establishments that may be involved in Mitrofanoff care

 

Please remember that no hospital is the same and every Consultant has a different approach to care. However, it is important for you to have the most up to date information. Along with the information available from your own hospital, The Great Ormond Street hospital web site is easily accessible and has up to date relevant information on Mitrofanoff care. This is available at www.gosh.nhs.uk/medical-conditions/

 

The Internet is a great way of gathering information. However, care has to be taken as some information may be irrelevant and may cause you to worry unnecessarily.

​