Update regarding Covid-19 Coronavirus

 

We understand that many people will be worried about whether they have an increased risk of contracting or being affected by Covid-19. This is a fast moving situation - this advice is general and may be superseded by either central Government advice (as this is changing all the time) or your own doctor (who knows you best). 

First of all, if you have concerns you should speak to your own medical team as they will have all your details and be able to give you specific advice (if needed). Try not to call 111 as this service should be left solely for those who suspect they have symptoms. 

We are still learning how Covid-19 works and how it affects us all. In that sense, we do not have any special advice relating to anyone who has a Mitrofanoff. We echo the central advice that applies to us all - always wash your hands (especially before you catheterise) and avoid non-essential travel and social contact. 

If you have symptoms (especially a temperature, dry cough or difficulty breathing) please seek medical advice and follow the current government guidance at https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public and NHS advice https://www.nhs.uk/conditions/coronavirus-covid-19/

As of 2 April 2020, our sponsors report that there are no supply issues affecting your usual monthly deliveries, so please monitor your stock levels and order supplies in the normal way.

Cancelled

Charity Ball & Fundraiser

Saturday 13 June 2020 at 6.30pm

The Runnymede on Thames Hotel and Spa

Windsor Road, Egham, TW20 0AG

We regret to inform you that the Trustees have made the difficult decision to cancel the Ball. This decision has not been taken lightly and we apologise for any inconvenience caused. With the continuing uncertainty regarding the coronavirus we felt the event was no longer viable. Our number one priority is the health and safety of our members, volunteers and guests.

However, we are now planning for June 2021 and hope to see you then!

Patient Education Day

Saturday 7 March 2020

We regret to inform you that the Trustees have made the difficult decision to cancel the Cambridge PED. This decision has not been taken lightly and we apologise for any inconvenience caused. We have been carefully watching the recent developments relating to coronavirus and were initially hoping to go ahead with the event but given the speed of progression, the prospect of increased containment measures, and the potential for impact on our members we have had to reassess. Our number one priority is the health and safety of our members, volunteers and sponsors.

 

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

Before taking this decision we consulted with Dan Wood (our Patron and  Consultant in Adolescent and Reconstructive Urology, UCLH) and Sharon Fillingham (our Nurse Advisor Trustee and Urinary Diversion CPF/Psychosexual Therapist, UCLH), as well as obtaining guidance from the Government and Public Health England. Please look out for details of our next PED in London in September. If any of you have any specific concerns regarding your Mitrofanoff please contact us via email or call us on 07903 382013. We thank you for your understanding. 

Cancelled

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