Thank you to everyone who came along to our Patient Education Day on Saturday in London.
Our new Patron, Claire Taylor and our Adult Nurse Specialist Sharon gave informative talks and our Paediatric Nurse Specialist, Louiza was a hit with our youngest Mitrofanoffer, who only had his surgery 4 weeks ago!
A full report will be in the Autumn/Winter Journal, look out for it in the next few weeks!
I am writing to the many patients, colleagues and friends that I have worked with over many years through UCLH and Mitrofanoff Support. You may have heard that I have been offered a job as Professor of Urology at the University of Colorado in Denver, this is a very exciting and prestigious professional opportunity for me. I am extraordinarily grateful for all the support, I have had from so many people over the years, that has brought me to this point.
We have worked hard at UCLH to appoint a successor to my role; Professor Gunter De Win and Mr Anthony Noah will continue our work as part of the team - you will be in excellent hands.
I have tried to tell people this news in person, where possible, but the pandemic has meant my ability to do this has been very limited. Our administrative staff have been heavily burdened with the extra work that Covid has bought for them, in unfamiliar circumstances. I apologise to anyone who has not heard from me directly but I could not burden the team by writing to everybody in the way I would have liked to.
It has been an extraordinary privilege to work with you all. I was delighted to be asked to continue as an International Patron for Mitrofanoff Support and look forward to working alongside your wonderful new Patron - Miss Claire Taylor - a consultant reconstructive urologist at Guys Hospital in London.
Finally, I have had some wonderful messages of thanks and support from those people I have managed to speak to. I am so grateful and truly humbled. I will always remain a friend and colleague of Mitrofanoff Support, the team at UCLH and the incredible patients I have met and worked with over the years. Thank you all so very much.
At Mitrofanoff Support we are all about helping you navigate your way through life with your Mitrofanoff. We feel we could be doing more for young adults. That is why we have put together a survey designed to collect information on how you feel and come up with a plan that will shape the way we support 15-24 year-olds in the future.
This is a pivotal time in a person’s life; you are striking out on your own, taking ownership of your health and trying to find your way in life. I’m Harriet, and I was 17 when I was first told I was to have a Mitrofanoff and was moved to adult care, no longer seen as a child within paediatrics.
We want to understand what 15-24 year-olds struggle with or need support with, as well as what they have, or are doing, which may help others. From the answers and comments from the survey, we will look at what we can do that will particularly suit this age group – possible ideas at this stage include:
A section on the website aimed at 15-24 year-olds
Vlogs on the website, answering questions posted by people aged 15-24
Setting up a separate Instagram page aimed at this age group, with guest editors (you)
A group session for this age group at our Patient Education Days, when we are able to hold them again
All the questions are designed with the age groups in mind. The answers will be anonymous and unable to be tracked back to you.
So if you are aged between 15 and 24 and wish to take part, please fill in the survey using the button at the top of the page.
If you are a parent or carer of someone in the age bracket, we would be grateful if you could ask them to fill in the survey.
Help us, to help you!
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
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