Useful Information

Prescriptions

All children will be exempt from charges until the age of 18 or 19 if still in full time education, however once that exemption no longer applies the Mitrofanoff procedure does exempt you from paying for prescriptions.

You will need to ask the GP surgery for an FP92A form. You should ask a healthcare professional if you need help to fill in the form, they will also have to sign the form to say the information you have provided is correct. Although a Mitrofanoff is not stated on the form, it is a permanent fistula. You must state the Mitrofanoff procedure is a continent urinary diversion and intermittent self catheterisation is required approximately 6 times a day. Never assume everyone knows what the Mitrofanoff procedure is.

You can find out more about medical exemption and refunds on the NHS Business Authority’s website.

You can use a Home Delivery Service for your medical supplies and have them delivered to your home or preferred address. There is no cost involved with this.

Ace Stopper

An ace stopper is a small high-grade silicone which is just like a plug and sits just inside the Mitrofanoff. Ace stoppers can be used to help with stenosis, narrowing of the Mitrofanoff, to keep the stoma dilated. Always be guided by a healthcare professional.

Ace stoppers come in various charriere sizes and lengths, and are used in between catheterising. Once cleaned and dried it can be reused for a maximum of 30 days. Patients who are allergic to silicone must not use an ace stopper.

You can use a Home Delivery Service for your medical supplies and have them delivered to your home or preferred address. There is no cost involved with this.

Alarm Watch

An alarm watch is useful for anyone with bladder issues, or a Mitrofanoff. Most brands have multiple settings, you can set the alarm to go off at various times throughout the day, this will then prompt you to make your way to a toilet.

When having bladder surgery, the nerves can be affected and you may not have the signals going to the brain which tell you to drain the bladder. People who have neobladders do not know when they need to empty their bladder however some people may get a bloated feeling or a sense of fullness.

An alarm watch is particularly useful for children, especially during school and activities.

These watches are discreet and come in a range of colours. They can also be used for personal, drink and medication reminders. The watch vibrates for approximately 5 seconds, then automatically resets to count again.

To purchase a watch visit:  Dry Day and Night    Connevans    Pivotell

Catheter

An intermittent catheter is passed via the Mitrofanoff into the bladder to empty urine. You will need to do this about 4-6 times a day.

 Intermittent catheters come in three different types:

  • Non-coated – These can be coated with a lubricating gel or local anaesthetic gel

  • Hydrophilic – These will need to be activated in water, see manufacturing guidelines

  • Pre-lubricated – These are lubricated within the packaging and are ready to use

 

A number of companies come to the Patient Education Days, so you can see some of the products that are available to you.

You can use a Home Delivery Service for your medical supplies and have them delivered to your home or preferred address. There is no cost involved with this.

Dressings

Dressings come in various sizes and materials, so you will need to see what suits you.

You may wish to use a dressing for a number of reasons:

  • Post operatively to keep the wound clean

  • Mucus from the Mitrofanoff

  • Protection for leaking

  • Protection for swimming

  • To secure the Ace Stopper

 

If you develop any redness or a rash, this may be due to a reaction from the dressing. Stop using the dressings and place a new order.

A number of companies come to the Patient Education Days, so you can see some of the products that are available to you.

Medical Jewellery

Medical jewellery and identification is useful, such as a bracelet or necklace once you have had this type of surgery.

Companies can hold important medical information about your condition and any allergies. You will have a custom made ID in both jewellery and a wallet card. An annual fee will apply, however this information can be accessed 24 hours a day 7 days a week if there is an emergency from anywhere in the world.

Hopefully you will never need to use it but it will give you peace of mind should you ever be in an emergency.

What should be on medical jewellery?

Mitrofanoff Urinary Diversion – No urethral access – Allergies – Any other medical conditions

 

To purchase medical jewellery visit: Medic Alert    Mediband    Medical tags    SOS Talisman Retailer    The ID Band Company  Universal Medical ID    Ice Gems (includes fashion)

Radar Key

A Mitrofanoff procedure does entitle you to purchase a radar key so you can use an accessible toilet should you need to. Radar keys work nationally and can be used in any toilet.

To purchase a radar key and see prices go to www.radarkeys.org

There is also a free app you can download to your mobile phone called ‘Toilocator’ which allows you find the nearest toilet when you’re out and about.

Rapid Access and Personal ID card

Mitrofanoff Support produces Rapid Access and Personal ID cards for patients, free of charge. This card can be used to access public toilets quickly without question. The ID card can be useful when presenting at a hospital other than your specialist.

You will receive a free Rapid Access and Personal ID card when becoming a member, for more details contact: info@mitrofanoffsupport.org.uk

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