Issue 19 Mitrofanoff Support Journal Autumn/Winter 2022

Edinburgh Salar de Uyuni, Bolivia St Anton, Austria Peak District Ridgeway Start

Palma Cathedral, Spain

Arta Caves, Spain Quilotoa Lake, Ecuador London

Editor’s Welcome 3

Chair’s Update 4

Patron Letter 5

Hunter Urology Sponsor Advert 6

Member’s Story - David Rose 7

Fundraising from Foundation Home Loans 8

Member’s Story - Travelling with a Mitrofanoff 9

Member’s Story - Ben’s Gap Year 10-11 BAUN Conference 12-13

Member’s Story - Packing Too Light 14

Peak Medical Sponsor Advert 15 Travel Insurance 16 Travel Tips 17

Fundraising - A Long Walk For Susan 18-19 Aled Griffiths 20

Travelling with a Mitrofanoff 20 - a Parent’s Perspective

Vesica Urology Sponsor Advert 21

Renew Sponsor Advert 22 Quiz 23 Quiz Answers 23

Louiza

Renée Holmes Chairperson

Sharon Fillingham

Welcome

I promised myself that during my summer holiday I would write the welcome for the Autumn/Winter journal; I had nearly three weeks to make a start, but instead filled my days reading, snoozing and lazing by the pool and the nights were busy with meals with friends, playing cards and trips to the beach … well that’s what holidays are all about! So here I am writing this on the plane journey home!!

Fresh from my holiday and with the lifting of Covid-19 restrictions meaning we can now travel more, I thought it timely to theme this journal around travel, incorporating your hints and tips, as well as stories about travelling with a Mitrofanoff.

My daughter saw a helpful ‘life hack’ on TikTok about travelling that we all agreed was a genius idea: taking an extension lead on holiday enables you to use your UK (or home country) plugs for all your charging needs and you only need one international converter plug.  We now have one that has three standard plugs and three USB plugs so we can charge mobile phones, iPads, game-boys, headphones, travel fans and all the other electronic paraphernalia needed for a relaxing holiday, all at the same time!  Thankfully on this last holiday I kept it in my carry-on luggage, as we were delayed on the way home, but still got on the flight with full batteries!

Don’t be afraid to ask for help. Having recently been plagued with foot injuries, I booked assistance at the airport.  While my husband was initially embarrassed, he soon changed his tune when we were escorted to the front of the check-in queue, through security and passport control, bypassing the hundreds of other passengers who were snaking around the airport in long queues. So my advice is if you need it, book assistance!

Strategic packing can reduce the amount of luggage you need to take with you. I have always been someone who packs light – as a family of four we went on holiday with just two bags weighing 16kg and 10kg, plus a small backpack each. The aparthotel we stay in has washing facilities, so I always pack a few washing tabs and we wash and re-wear clothes – an additional advantage is that there’s not a mountain of washing to do when we get home.

So before the memories of sun, sea and sipping cocktails start to fade, I hope you find the articles in this edition helpful. Do contact me with any tips you may have that we can share on our website.

Best wishes

Tania

Well - writing this is as much of a surprise to me as it might me for some of you reading this who have met me.

Five weeks ago, I had an operation to replace my Mitrofanoff. One of the ‘x’% club.

My Mitrofanoff channel was no longer stable and had to be replaced.

Just like child birth I had forgotten what it was really like to go through it. So I thought it might be an idea to write up what I had learnt going through the recovery stage i.e. returning home and managing the day to day.

Now - I am ancient (no specific details from me to you - just 6 years older than the first time) - but in that context recovery can no doubt be shorter or longer. The first three weeks I was functioning (could hold a conversation and walk from room to room albeit at a snail’s pace, climb stairs etc). My taste buds were all over the place - even plain water tasted horrible. I had left hospital with a balloon catheter cited in my new Mitrofanoff and a similar suprapubic catheter.

In my case to minimise movement of these catheters the external tubing was attached to my skin by way of stitches.

Depending how long you are in hospital, you may come out with minimal dressings. Our bodies are AMAZING. Within three weeks my all too large incisions had knitted themselves together.

When you are given the ‘ok’ to go home, you are sent home skilled in the process of flushing out (otherwise known as washouts) both catheters. This skill is needed to maintain the Mitrofanoff in the long term too. It involves slowly pushing saline using a large plastic syringe and then pulling back on the syringe into both catheters (your Hospital/Clinical Nurse Specialist will advise how much).

In the early days you will see quite a few bits (mucous) which cause the catheter to block. In my case, I produced loads of the stuff which, after extraction, would then enable the urine to flow out into my bags with ease. My urine did not flow if I was seated and very intermittently if I was lying down. I have a neobladder (surgical replacement of my own bladder) so that might be an important variable to keep in mind.

Personally I knew straight after the operation that when my abdomen felt odd (difficult to describe… bit of bloating coupled with a ‘weird’ feeling) I needed to be flushed.

In hospital - for the first few days at least- it isn’t about how much water you drink but the various goodie-bags emptied into our bodies via the cannula.

If however - you start to experience bloating or kidney/loin

discomfort/pain then if you are in hospital insist that they help you with an urgent washout and if you are at home - hunt out that syringe and do the same at once.

My nurse expected me to be able to manage at home and thought I would be able to manage the recovery stage with the original set of dressings. Me being me, I have uber sensitive skin and develop water blisters under the waterproof hospital plasters and therefore I was prepared and able to manage with a set of non-waterproof plasters which meant changing them after a shower. If anybody ever needs help with products don’t forget you can always ring us at the Charity.

The other issue that is worth a mention is managing these wretched bags. When they fill they are heavy… which means they pull on the stitches/ balloon catheters. I found sleeping the first couple of weeks hard not from the pain from the surgical scars but the pulling on the catheter stitches. So my first recommendation…. smother these stitches with cream every day/every other day. Stitches dry out naturally and become hard (I call it crispy) and then they are even more uncomfortable then they naturally are. Secondly try and support the bags with every/anything minimising pull.

Well I have mentioned recovery’s new best friends… the bags…. so here goes. To be honest, I do not have a good thing to say about them… expect splash back; legs, hands arms… even got me in the face a couple of times. Expect the plastic to stain; the day bags are supposed to last a whole week! The fastening attachment (balloon catheter to bag) all too often needs the strength of a heavy weight boxer to pull apart. Mucous gets stuck at the join preventing the flow of urine. A special shoutout for the night bags .. the joins are good …worryingly good …so for the first few nights I would wake up and immediately check there was no leaking, however to get them engaged I would have to flush laying horizontally (again, this is more than likely a personal experience).

After three weeks my energies returned and re-engaged. It seemed to take forever. I started to get my appetite back (even for water) and was able to stand for most of the day. My partner knew I was on the mend as I started to reorganise the kitchen cupboards!

At the start of week 4, I went and got some groceries on my own and even walked to the park and back -not quite the walk my dog was expecting but it felt good. Also the swelling from the operation had dramatically reduced which is a confidence booster in itself.

Now I am on week 5 - tubes will soon be removed and I won’t miss the ‘dragging’ feeling.

To those waiting for a Mitrofanoff… please read this writeup knowing your journey will be unique to you. Be kind to yourself and a ‘patient’ patient. I have had to ring the stoma nurses twice - once for a wound urine leak and once because I was no longer able to drain my Mitrofanoff balloon catheter. Neither of these were a medical concern as it turned out. Use the number if you are worried - you won’t be bothering anybody.

To those reading this who will be partnering/caring for a soon-tobe Mitrofanoffer during the recovery phase…. please read this knowing you have an invaluable role and will be an invaluable

help - even when you feel you are doing very little. Just being there with endless cups of teas, empathy and practical help when needed will be just what the doctor ordered.

Brief Update:

Well, I have been self-catheterising for a few weeks now.

The beginning was tough - it was my second Mitrofanoff - of course I would know what to do…. ahhhhhh not quite. Had to learn how to find the hole - an impossibly challenging job at 4 in the morning! But then so was my first one. I had conveniently shelved those memories.

I eventually got the hang of it but tenacity was the key.

I did try a number of different stances, not all of them standing, but I am happy to report that contortions are no longer necessary and I am good to get back out into the real world.

Wishing all Mitro newbies the best.

Renée

Hello!

It gives me great pleasure to write this introduction having been both honoured and delighted to have become your Patron. I realise I have some very big boots to fill, I have known Dan Wood as a friend and colleague since we both sat in a lab doing research together some 20 years ago. I also know the value he placed on Mitrofanoff Support as a community and information source for both patients and healthcare workers which have included some of my own patients. It was lovely to attend my first support day last autumn and find one of my own patients, in whom I will do a Mitrofanoff channel very shortly, had turned up too. I think he was more surprised to see me than I was to see him! He gave the support day a glowing report, particularly having the opportunity to chat to people with Mitrofanoffs about what it is really like.

So to introduce myself, I am a consultant Urological Surgeon working at Guy’s & St Tomas’ Hospital, just South of the Thames in London, for 10 years now. As well as being in a lab with Dan back in the day, I have worked with him and Christopher Woodhouse at University College London training in adolescent and reconstructive urology. I also spent a year doing a fellowship in the paediatric Urology department at GOSH giving me huge insight into how the journey begins for a lot of you. Guys Urology is a big department and acts as the tertiary centre for most of the southeast corner of the UK. It is a busy but friendly place to work with many skilled teams of doctors, nurses and allied healthworkers. My speciality is functional and reconstructive urology – bad bladders and trying to fix them. I see both men and women with neurological disease, complex continence issues and we have a separate

service (YOU or Young Onset Urology) looking after people with congenital problems as they transition from children’s services. In YOU I work with a paediatric Urologist, transplant surgeon and clinical nurse specialist trying to give continuity and support as the teens move across to adult care. No two days are the same and many are long but I love working with my patients to try to find the solution that works for them and gives them best ability to get on with life without their bladders getting in the way.

Home is Southeast London where I live with my husband and “tween” daughter. I am an inveterate city dweller, who, despite enjoying quiet weeks in the countryside on holiday, can’t leave the ease and variety of experiences in London behind. There is nothing I love more than trying out new restaurants, especially new cuisines and luckily London has an inexhaustible supply!

As I write this the restrictions of COVID are slowly being lessened and I am enjoying going back to seeing more of my patients in person when needed. That said, a silver lining of the effects of COVID on the NHS is the widespread integration of virtual or telephone consultations that definitely fit into some people’s lives better. Most importantly, my hospital, like many, have embarked on a big effort to catch-up all the operations that have waited far too long as the theatres lay empty whilst the staff were pulled into caring for those sick with COVID. It feels good to be back in theatres helping my patients, doing the job I was trained to do.

I am really looking forward to the next support day in November, when I hope to really get stuck in and meet as many of you as possible in person and without restrictions.

Best wishes

Claire

Hunter Urology ISC catheters designed for Mitrofanoff use

Our Aloe Hydro+ ISC catheter features our hydrophilic coating When activated using the sterile water sachet provided, the coating lubricates the entire catheter, reducing friction during insertion and removal.

It also features a sleeve for holding during insertion, reducing the risk of introducing infection.

The soft tip is designed to ease insertion, making the Aloe Hydro+ suitable for a wide range of ISC catheter users, including those males with an enlarged prostate or those who experience difficulty when inserting the catheter.

Our HunterCath is a non-coated, DEHP free ISC catheter with a smooth soft tip

The soft tip is designed to ease insertion, making the HunterCath suitable for a wide range of ISC catheter users, including those with a Continence Urinary Diversion (Mitrofanoff), those males with an enlarged prostate or who experience difficulty when inserting the catheter.

enquiries@hunterurology.com www.hunterurology.com

Sleeve

part of the Optimum Medical group

Optimum Medical Solutions Ltd Tennant Hall, Blenheim Grove, Leeds, LS2 9ET, United Kingdom

T: +44(0) 845 643 5479 enquiries@optimummedical.co.uk www.optimummedical.co.uk

Hi everyone! For those who don’t know me, I’m David Rose and I’m one of the trustees for Mitrofanoff Support and have been a Mitrofanoff user since 1995.

I’m also usually fast-tracked through security, which is very helpful if my joints are extra painful or my bladder is playing up. Special assistance can be booked via the airline(s) you’re travelling with.

2. Sunflower lanyard – this was around pre-Covid: by wearing the green and yellow sunflower lanyard, it indicates that the person wearing it is living with an invisible condition. It can be useful to airline staff who can then identify that you might need some extra help with bags etc.

3. Radar key – the use of a radar key is so important, not just for flying, but for most travel. Using the radar key to access the toilets in terminals makes life easier and most of the time the toilets are much cleaner, an important thing for catheter users.

4. Book an aisle seat/seat near the toilet – everyone has their own preferences on where they like to sit. I personally prefer an aisle seat or a seat near the toilet, just for convenience – especially on longer flights.

I’ve been living with an ultra-rare disease known as occipital horn syndrome since I was born – I’m only aware of eight other people living with this condition globally. I also have a few other comorbidities from my main rare disease. I’ve lived my whole life with various health conditions, so I’ve never really known any different. Lots of people have asked me over the years do I travel much – and the answer is YES!

Trips are a big part of my life. Having trips booked, whether it be for work or pleasure, does amazing things for my mental health as well; I find travelling by plane so exciting, even after all these years of doing so. Travelling via plane has changed for me over the years. In my younger life, I could rely on my parents to do everything for me and I’ll admit – it was easier! However, I’ve been independent and managed my own medical needs by myself in an efficient manner from my mid-teens.

Growing up, I was fortunate to go to Orlando a lot with my family and some areas of the west coast of America – fantastic holidays. Thankfully, my bladder just about behaved itself on every family holiday. The only thing that ever happened was I got my finger caught in the hair of my sisters’ Barbie doll –after I wrapped my finger round and around and it started to go blue. Thankfully, in the middle of the Florida Everglades, my parents found a man to pry my finger loose using a sharp blade. Quite the experience!

I’ve flown a lot for pleasure and work over the years. Just before Covid started, I flew to Dubai with work and felt very rough on the last day – always the way. I was incredibly lucky that the flight back was nearly empty and I was able to lie down over four seats. Of course, I do still feel nervous about having a bladder flare-up when travelling, especially when flying.

Below are some of my top tips that have helped my family and me over the years. Some I learnt organically and some are fantastic tips from friends I’ve made in the various health communities over the years. Although they might not all be relevant, hopefully you’ll learn something new.

1. Book special assistance on the outbound and inbound flights – this is something I’ve only been using for the last 4/5 years, as I wasn’t familiar with this before. Special assistance makes life a lot easier – using the wheelchair/golf buggy helps me conserve energy and

5. Travel insurance – I’ve found travel insurance a bit of a nightmare over the years in terms of cost, but it seems to have improved slightly. Do your research and price compare; I’ve often found phoning is far easier than trying online, as you can properly ensure they know your medical conditions) and you’re fully covered.

6. Bring your paperwork – it’s hardly ever checked, but make sure you bring a prescription for your medications and a letter or two from a GP/consultant highlighting your medical conditions. Have this readily available for going through security.

7. Good entertainment – everyone brings their own entertainment, whether that’s Netflix, a podcast, or a book. I find getting lost in a good TV series helps the time fly by (excuse the pun!) or helps to relax me if I’m feeling uncomfortable.

8. Split up your items – make sure you have a small supply of medical stuff in your cabin case, as well as your bags for clothes and any catheters etc that can be left in a suitcase. Just to ensure that you’re still ok if one of your bags goes missing.

I hope some of my tips are useful and wish you a great trip!

Boston conference

Vienna Xmas Markets

Fundraising

Fantastic fundraising from Foundation Home Loans

As part of a summer competition, staff at Foundation Home Loans (FHL)were invited to donate to Mitrofanoff Support to participate in an art competition and a company quiz. The sister of one of our trustees has seen the huge benefit that the Mitrofanoff procedure gives her brother-in-law and proposed our charity as FHL’s Charity of the Month.

The art competition was to create any piece of art – painting, drawing, photo, collage, etc. – which represented “what summer means to you” and the winning submission was a lovely painting of a girl in a flower garden.

The quiz was held ‘virtually’ and was a great success.

The initial fundraising target was surpassed and with the staff donations being matched by the company, we were delighted to receive £770, plus Gift Aid.

The trustees are very grateful to everyone at Foundation Home Loans for their generous support.

Travelling with a Mitrofanoff

It was a long time ago, BC (Before Covid), that Lynda and I last went on a holiday abroad; it is now 2022 and we decided to go to Mallorca for two weeks in September.

I’ve had a Mitrofanoff since 2012 and fortunately it has been virtually trouble-free. However, travelling abroad can be stressful and this can be made worse by worrying about what to take with you and what might go wrong.

Firstly, my advice would be to take everything and anything you think you might need. Catheters, of course, are the main item: work out how many you use in a typical day and multiply that by the number of days you are away, including travelling. I then add two or three days more to allow for possible delays and flight cancellations.

I strongly advise packing all your catheters, and any other essential supplies/medication, in your hand luggage, so you don’t have to worry about lost luggage – it is far easier to replace clothes and toiletries, than specialised medical equipment. I also carry a letter from my GP stating that I must carry essential medical supplies in my hand luggage, in case the overhead lockers get full and hand luggage is transferred to the hold. This nearly happened to me when I didn’t have a letter – it was only Lynda’s hysterical begging that avoided it! I suggest you also pack some smaller gauge and/or special tipped catheters that might assist if you have a problem; it is generally a good idea to have these – samples can be obtained from the sponsors at our education days.

Although unexpected things can happen, taking the time to plan things you can control, will help you relax and enjoy yourself.

Happy Holidays!

Jim

Mallorca

Arta Caves, Spain

After finishing Sixth Form, I took a gap year as I had always wanted to go travelling and I wasn’t about to let my Mitrofanoff stop me!

Two friends and I planned a trip to South America for 100 days, racking up 280 hours on buses and visiting 10 different countries. In classic “boy style” we had booked very little of it in advance, as we wanted as much flexibility as possible. Having landed in Ecuador, we knew we had 68 days to get to the southern tip of Argentina before our flight up to Costa Rica.

Due to the length and nature of the trip, I knew I needed to give

some thought to medical supplies to ensure they didn’t hinder us in any way. When choosing which catheters to take for the trip, I was fortunate to already be using pre-lubricated flexible catheters (Hollister Instant Cath). This meant there was no requirement for clean water to be available in order to activate the lubrication, as needed in some other brands. They could also be scrunched up pretty small into every little pocket of my rucksack.

The largest issue for me was going to be space. Assuming I needed six catheters a day, that would have required 600 before even packing spares. Now with only a 75 litre backpack

Quilotoa Lake, Ecuador

El Chaltén Argentina (Patagonia)

Salar de Uyuni, Bolivia

that wasn’t going to do, so here is how I got cunning: Firstly, I was fortunate to be travelling with two of my best mates who both already knew about my Mitrofanoff. They both very kindly offered to take some catheters in their bag, partly so I could carry more with us and partly so if I had a disaster and lost my bag, I would have enough to last a few weeks until I could source some more. By packing extremely light myself, I was able to take enough for the first month.

To restock on route I posted several boxes to different British embassies across the continent, sent some with a neighbour’s friends who were visiting Buenos Aires – they left them at a hotel where we were going a week later – and found a place in Argentina where I could just buy them. It was good to do this blanket approach, as the majority of parcels I tried to send to British embassies got held up at the border and so it was important to have other options!

The other safety precaution I took was to show my friends how to put a catheter in me, if for some reason I couldn’t. This was only for emergencies, but had I been knocked unconscious at any point it would have come in handy! I also took an unlubricated catheter which I kept sewn into the lining of my money belt. If I had managed to lose not only my bag, but also those belonging to my friends, I would have been able to reuse this catheter using some lubricant and then resterillising it with boiling water. Fortunately it never came to that! We ended up having a fantastic trip; from learning to tango (terribly!) in Buenos Aires, to 10-day treks in Patagonia, my Mitrofanoff didn’t stop me from doing anything!

When planning a long trip, the only thing you might have to do differently is to give a little more attention to restocking catheters before setting off, meaning once you’re out there, you can just relax and enjoy it! If anyone has any questions around the trip or how to arrange medical supplies, please don’t hesitate to contact me through the Charity!

The W Trek, Patagonia San Pedro de Atacama, Chile

The W Trek, Patagonia

BAUN ANNUAL CONFERENCE S H O W C A S I N G 22 20 6 - 8 N o v e m b e r E I C C E d i n b u r g h

the Impact of Urological Nursing

volunteers.

As with most travel, logistically it was a challenge as we had four different journeys to plan. How to get all our stand material from London to Edinburgh was also testing: the large pop-up banners were carried on the backs of our trustee Lynda and her husband Jim and the rest was sent by courier.

The newly-branded Mitrofanoff Support t-shirts were being sent for our team to wear and as the weight limit was exceeded

Angela, Louiza & Sharon

in one parcel, two items were sent for next day delivery. However, one parcel did not arrive: it got ‘lost’ in an Evri depot for 24 hours and finally made its appearance over half-way through the conference! Thankfully the new t-shirts and past copies of this journal were in the first package. In addition, the team had printed out some information sheets and relied on these to promote the Charity, along with spare copies of our pre-printed leaflet for healthcare professionals which had been put on the delegates’ chairs. And we also had a tub of chocolates!

The event enabled us to make contact and network with many Urological Nurses from all over the UK. We caught up with two of our sponsors and met representatives from other companies that were exhibiting their medical supplies, to learn about their products and talk about Mitrofanoff Support. There were also a number of other charities and it was an excellent opportunity to ensure they knew about the Mitrofanoff procedure and the Charity, so information was exchanged and relationships forged that will hopefully be mutually beneficial in the future. A more detailed report about the conference will be published in the Spring/Summer Journal 2023 and on our website, as soon as it is available.

Quotes from the Mitrofanoff Support team:

“The BAUN conference was a great opportunity to be able to network not only on behalf of Mitrofanoff Support but also amongst Urology Nurses. Everyone, delegates and exhibitors took a real interest in Mitrofanoff Support and what we do as a charity.”

“Our approach at the conference was to promote Mitrofanoff Support by designing literature specifically aimed at healthcare professionals, wearing distinctive Charity t-shirts and talking to as many people as possible. Almost all of the Nurses knew of the Mitrofanoff procedure and we were able to highlight how the Charity can support patients and their families.”

“It was great to met up once again with old friends and colleagues. We listened to inspiration and knowledgeable speakers who gave us ideas for new projects and future research.”

3 Wise Nurses

Lynda, Sharon, Angela & Louiza

Members story

Packing Too Light

Packing for a much anticipated holiday is a challenging enough task especially if you are responsible for members of the family - adding the mix of medical paraphernalia of a Mitrofanoff and its enough to wonder whether going on holiday is worth the stress and hassle.

I did not have an excuse to forget my much needed supplies.

I generally pack a couple of days worth of catheters, lube, stoma plasters and a doctor’s note in my hand luggage. The quantity needed for the holiday plus 15% I pack in my suitcase.

As we neared Heathrow (pre-Covid days… arriving ‘in time’ for check-in…) I suddenly had that overwhelming sense of fear ..OMG I had not packed my luggage supplies. Now, this was to be a special holiday - cost a fortune holiday - middle of nowhere island holiday…

No time to go home and I would be back home before trusted delivery companies could arrange delivery of more catheters.

So - I remembered Sharon’s (our Charity’s Adult Nurse Specialist’s words) - commenting on our (NHS) good fortune to be able to use a brand new catheter whenever we need to. REUSE!!!

Hygiene would be key.

Fortunately good bottled water was to hand and I used this bottled water boiled to wash my allowance of one catheter a day and then made sure it could air dry prior to my using it again.

I was concerned I might get an infection and took extra care when maintaining my daily catheter.

I would never recommend this form of ‘travelling’ light but I managed.

We had a lovely dreamy holiday.

I have never forgotten that feeling of dread and despite the Covid induced holiday suspension, I now spend more time focussing on medical supply packing, then searching out my summer wear selection.

N.B.

There is a charity Jacob’s Well, that will happily receive unused, in date, catheters for redistribution abroad. Many recipients of catheters like ours will hold a catheter close for more than just the one day! https://jacobswellappeal.org/

A word from our Adult Nurse Specialist, Sharon.

• In an emergency situation, like Renee found herself in, it can be necessary to reuse a catheter. While we would never normally recommend it, if the following precautions are followed you should be ok.

• Make sure your hands and all equipment is washed before and after every use to decrease any risk of infection.

• Thoroughly wash your catheter after every use.

Travel Insurance

Travel insurance options: some suggestions

Reprinted from the Urostomy Journal, with permission from the Urostomy Association.

Original authors Sharon Fillingham and Lynne Richardson, updated by Tania Levett.

We carried out an internet search using a variety of key words such as ‘urinary stoma’, ‘bladder cancer’, ‘continence’, ‘reconstructive surgery’ in a search for suitable travel insurance. Mitrofanoff is unlikely to be to be listed, you might need to choose ‘Urostomy’.

After looking at a variety websites and calling the individual companies, we have the following suggestions. We asked for quotes for travel within Europe and worldwide on both single trips and annual multi-trip policies. Insurance will be tailored to your needs, but don’t forget that if you take out an annual multi-trip policy, you must inform them of any changes of circumstance or medical condition. If it is not declared you will not be covered.

• Go through a broker for the best rates.

• Speak directly to one of the company agents to discuss your individual needs. They will then be able to look for a quote which will best suit your requirements.

• If dealing with an independent company rather than a broker, do not accept the first quote you are given. It is sensible to get a range of quotes before deciding which company to use. Most quotes will be held for you for a given amount of time and you can get back to them if you find them the most favourable.

• When filling in an online enquiry form, if the company asks when you last had a CYSTOSCOPY, click 0 or find the section which says ‘bladder removed’ and click on this. If you have difficulty with this step, then call the agent and talk to an advisor.

• Compare single trip versus multi-trip options. In some cases, single trip quotes may work out cheaper.

• It may be worth contacting your bank, as many of them now provide travel insurance at competitive rates.

Travel Tips

Travel tips from our Members

Wear a bumbag on the plane.

So I took my rucksack which was stored in the overhead locker for the journey. Having a bumbag allows you to discreetly have everything you need, especially on long flights.

Packing Cubes For The Win!

Trying to keep a suitcase or backpack organized while you travel is a big headache, unless you use packing cubes. These little zippered bags allow you to keep your underwear separate from dress clothes, or dirty clothes from clean ones. They take up very little space, but make finding your stuff so much easier. Another option is compression bags which push all the air out leaving even more room for more stuff.

Take Lots Of Epic Travel Photos

You may only see these places & meet these people once in your lifetime. Remember them forever with plenty of photos! Don’t worry about looking like a “tourist”. Great photos are the ultimate souvenirs.

Learn A Few Foreign Words

There’s no need to be fluent in order to visit a foreign country. However, one tip I’ve learned is to master a few phrases in the local language can improve your travel experience. Hello, please, thank you, nice to meet you, excuse me, sorry, and “can I take your portrait” are some of my favorites. For Mitrofanoffers, Toilet and Hospital might also be useful.

Visit The Local Tourist Office

Most large towns and cities have a local tourist office, and it’s a great place to visit if you’d like to get some ideas for things to do in the area. Tell them what you’re looking for, and they’ll be happy to help.

Whether it’s free activities nearby, family-friendly spots, or even local festivals and events that may be going on at the time, the tourist office is there to point you in the right direction.

Wear or Carry Your Heaviest Gear

Heading to the Alps in the winter? You’ll be hard-pressed to fit much else in your bag if you try to stuff that oversized down jacket in there.

Give yourself more room and ease the shoulder strain by wearing it on the plane. You’ll free up space inside your luggage and reduce the weight of your bags, which can also save you money at check-in.

Besides, you can easily shed the extra layer on the plane to use your jacket as a pillow or put it in the overhead compartment. If your bulkiest shoes, are comfortable enough to navigate airports, wear them.

Also make sure you have enough supplies with you accounting for time differences and incase your plan gets delayed or like us cancelled.x

Carry-on change of clothes

Avoid the risk of being stuck with one outfit by packing a change of clothes in your carry-on. If your checked-in bag doesn’t make it to your destination, you don’t want to be in a situation like I found myself in Jordan, where I had to hike around the desert in my jeans and one of my girlfriends t-shirts.

Ziplock bags

Grab a few extra before going through security as they always come in handy.

Double bag your phone to keep it dry or sand free at the beach. Great for snacks for packed lunches. Emergency sick bag in case your toddler gets travel sick for the first time! Also see change of clothes.

Reusable water bottle

Fill it up after security at the airport to save you the cost in the airside restaurants.

A hydro flask with keep you water cold at the beach or your hot chocolate warm on a long trek in the mountains.

I carry a box of catheters on with me incase they ever lose my case to be safe and haven’t been question in years doing so. I was once asked to put my glowsticks in my case and that was the only time I ever had to explain what they were

Fundraising

A Long Walk For Susan

A few weeks ago, I walked the length of the 87-mile Ridgeway National Trail in six days and managed to raise a grand total of £787 for Mitrofanoff Support in the process.

Often called “Britain’s oldest road”, the Ridgeway starts on Overton Hill, near Avebury and follows a southwest to northeast route along the crest of a chalk ridge to finish atop Ivinghoe Beacon, near Tring. Supporting me every step of the way was my wife Christine, who helped me in my fundraising efforts.

Why Mitrofanoff Support? The connection is through my older sister Susan (Tomblin), who sadly passed away two years ago after a long and brave battle with cancer. I wanted to do a fundraiser in her memory, and it was her husband Mike who immediately suggested that I should support Mitrofanoff Support. He knew that Susan would have loved this gesture, as she had volunteered for the charity, mentoring those who were thinking of undergoing the procedure, and loved the work that Mitrofanoff Support was doing.

with Susan

Ridgeway Day 2 White Horse

Ridgeway Start

Fundraising

The deal was done. Planning and fundraising could start in earnest. After all the logistical headaches involved in a point to point walk of this length, the walk itself was easy and fun! The highlight was undoubtedly approaching the end point on Ivinghoe Beacon, despite the pouring rain, and being surprised by my other sister Jean, who had been sheltering behind the beacon. Job done!

Malcolm Patterson

Ridgeway Day 5

Ridgeway Day 6 Chequers

Ridgeway End with Jean

Aled Griffiths

Hi everyone, it’s Aled again with a quick update.

I received my A level results in August, which were good and what I expected. So now I’m currently studying psychology at the University of Plymouth. I was going to look at other universities, but when Plymouth offered me an unconditional place I decided to stay at home; I think it was a wise decision considering the cost of everything at the moment.

When applying for my student finances, I also completed an application for Disabled Students’ Allowance. I had an interview where they assessed my needs and then provided me with new equipment such as a computer and software, to enable me to take notes and dictate easily. I was also given an ergonomic rise and fall desk, which my dad is envious of! They also supplied a chair and other gadgets for making it easier for me to study at home. So far the equipment and software have been great and extremely useful.

I also had an interview with the disability student support team at the university regarding my needs. They confirmed that they would support me where needed and also gave me my own parking permit, as well as extra time for exams. Since starting university, everything has gone really well; I have made new friends and had a good fresher’s week. I have just finished my first module and completed my first assessment. I’m really looking forward to the rest of the year. Hopefully next year I will be moving into my own student residence to give my mum and dad a bit of piece of quiet!

That’s it for now, hope you are all okay. Stay safe everyone.

Aled

Travelling with a Mitrofanoff - a Parent’s Perspective

My son was born with a multitude of problems and at the age of 7 he had a bladder augmentation which also included an ACE and Mitrofanoff being formed. Due to his issues, as a family we travelled to America quite a lot as they held bi-annual conferences, which were good opportunities to meet people with similar issues to him.

Whenever we travelled we would contact the airline during the booking process to ask for extra luggage allowance, for things like catheters and other medical supplies. Also, because of his issues he needed help to catheterise through his Mitrofanoff, so we asked the airline if they could help us by blocking off access to the toilet by using curtains whenever we needed. Fortunately the airline was really helpful and fully supported us each time we travelled.

The only issue that we have had is when using disabled toilets in supermarkets etc., with people jumping to conclusions and making some sort of comment. However that was normally resolved with a bit of ‘short-notice education’ for those people. We never looked at ways to prove our son’s disability; if questioned, as parents we have always been ready to explain. However, there are numerous ways to show your disability, such as the sunflower lanyard which is now much more recognised. There are also charities and companies that offer ‘proof of disability’ cards, so that paper documentation doesn’t need to be carried around.

The one thing I would finally like to say, is don’t be afraid to travel and always ask for assistance if needed.

STOMA

Quiz of 2021

1. In January, 31 people in east London were fined a fixed penalty of £200 each for having their hair cut in contravention of Covid regulations. What was their job?

2. In February, something named Perseverance hit the news. What was it?

3. In April something called Ever Given caused worldwide disruption. What was it?

4. In June a new £50 note was launched with Alan Turing, a famous British mathematician, on the back. What was he famous for?

6. In August, there was traffic chaos in London after what became stuck for over 12 hours?

7. In September, the Central American country of El Salvador adopted what currency as legal tender?

8. Also in September, it was reported that the tallest country in the world is actually shrinking, being on average over 1cm shorter than 20 years previously – what country?

9. In November, in a landmark legal case a French court awarded more than €100,000 to a couple who suffered ill health from living close to what sort of farm?

10. In December, a Brocken Spectre was spotted in the Peak District. What is it?

a meteorological phenomenon where a person’s shadow is cast on to clouds/ fog below

Netherlands 9) Wind

Bitcoin

Tower Bridge –in the up position

Peppa Pig

cracking the Enigma code

NASA Mars rover 3) The container ship that accidentally blocked the Suez canal

5. In July, US parents were reported as saying their children were acquiring British accents due to what? Quiz Answers: 1) Police officers