Issue 12 Mitrofanoff Support Journal Summer 2019

Issue 12 | Summer 2019

Journal Together we will never be alone

• Professor Paul Mitrofanoff wins prestigious award • Mitrofanoff family visit our London event from America

• Save the date!

Upcoming events • Travel tips for a stress-free holiday www.mitrofanoffsupport.org.uk Registered Charity Number for England and Wales 1145382

@mitrofanoffsupport

Welcome!

Board Members Renée Holmes Chairperson

John Thatcher Strategy Advisor

Jo Lightning Legal Advisor

Contents

Editor’s Welcome

An Update from Renée, our Chairperson

Adult Nurse Advisor

Advisors Angela Downer and Louiza Dale Paediatric Nurse Advisors

Kenneth Edwards Partnership Liaison

Lloyd McAllister Treasurer

Staff Neil Lightning Office Manager

Rachel Wall Marketing Manager

4

Paul Mitrofanoff honoured with prestigious award

4

Meet the Mitrofanoff Support Team

5

Members story - Lost and Found

6-7

Training Update

7

Sharon Fillingham

3

Tips for a stress-free holiday

8

Vesica Urology Ltd Sponsor Advert

9

Upcoming events

10

Fittleworth Sponsor Advert

11

Fundraising Update

12

How to donate and how to help fundraise

13

London Patient Education Day 14-15

Vesica Urology Ltd Sponsor Advert

15

Congratulations Urostomy Association

16

Vesica Urology Sponsor Advert

17

Aled gives his top travel tips

18

Peak Medical Sponsor Advert

19

Children’s Corner

20

Vesica Urology Sponsor Advert

21

Peak Medical Sponsor Advert

22

Donations form

23

How You Can Support Us

24

Thank you to all our 2019 Sponsors GOLD SPONSORS All Advocate’s details can be viewed on the website.

Advertising Enquiries

Email: marketing@mitrofanoffsupport.org.uk

Editorial Submissions

GOLD SPONSORS

Contributions to the journal are welcome. If you have a story, article or letter please email marketing@mitrofanoffsupport.org.uk or call 07903 382013

GOLD SPONSORS

Website

GOLD SPONSORS

www.mitrofanoffsupport.org.uk /mitrofanoffsupport

@MitrofanoffSpt

@mitrofanoffsupport

@mitrofanoffsupport

2 | Issue 12 | Summer 2019

BRONZE SPONSORS

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Rachel Wall Editor’s Welcome Welcome to the Spring/Summer edition of the Mitrofanoff Support journal, I hope the first half of 2019 has been a happy and healthy one for you.

This issue is packed full of news including details of our recent Patient Education Day in London where one family travelled from as far as America to join us! They have also kindly written an account of their experience of the day. I am pleased to announce that our next Patient Education Day will be in Birmingham on Saturday 28th September 2019 and you will soon be able to book your free place over on our website. Details about this event will be issued on our social media platforms so make sure you follow us to stay up to date.

Our Patient Education Days are an extremely important part of our work to ensure that you can meet others with a Mitrofanoff stoma and seek advice and support from the medical professionals that we work closely with so make sure you follow us to stay up to date.

With the summer months upon us we have included some valuable tips for travelling with your Mitrofanoff and our Children’s Ambassador, Aled, has also shared his own advice for making your holiday run smoothly. We have been continuing to educate medical professionals about the work we do and what it’s like to live day-to-day with a Mitrofanoff after leaving the hospital. We know how valuable this work is to patients and to raise awareness of the procedure. It’s great to see an update from our friends at the Urostomy Association who are about to celebrate their 50th anniversary, so a huge congratulations to them.

I would again like to encourage everyone to use our closed Facebook group to try and get together with those local to you, perhaps have a coffee and cake morning, so you can support each other. You could even use these events to raise some funds for the charity. We are more than happy to help support you in organising these meet ups. Our Facebook group now has over 1,500 members and, as a member myself, I can’t express enough how helpful every member is in sharing their advice and support. We really are one big family.

The charity runs solely on donations so if you can help us to continue supporting you on your Mitrofanoff journey then please contact the office: info@mitrofanoffsupport.org.uk You could organise a dress down day at work or school, a coffee morning, sponsored walk or if you’re feeling brave a skydive or abseil! Every effort big or small, really helps. There are also details inside of how to make one-off or long-term donations

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I’d like to thank all our sponsors and volunteers for their continued support as without them we would not be able to run the charity.

Thanks also to you, our members for your support in the work we do. Enjoy reading the journal and if you would like to share your own journey in the next edition then I would love to hear from you. Have a wonderful Summer.

With very best wishes

Rachel.

Rachel Wall BA Hons Cim Dip Editor, Mitrofanoff Support Journal E: marketing@mitrofanoffsupport.org.uk .

Issue 12 | Summer 2019 | 3

Renée Holmes An Update from Renée, our Chairperson Dear All I am currently on holiday, and being rightly chased by Rachel to write this piece for the Mitrofanoff journal. In between dodging dubious clouds, in a supposedly temperate climate, I have been musing on my good fortune (mixed with a personal tinge of insanity !).

I am 2 1/2 years into living the Mitrofanoff way and I can scarcely believe that my life is as normal as used to be. During the last six months I have been on full-time grandma duty for my 18 month old granddaughter which has involved early starts, swimming and toddler gym (not to mention reorganising my catheters and plasters after the little one has sneakily got hold of them ! ). Looking after her has been in addition to the general role of managing the day-to-day logistics of a full house, being the Mitrofanoff chair and a school volunteering role. Within all of this activity, my Mitrofanoff has been the least bothersome.

This has been a startling revelation, as my Mitrofanoff, as in many cases, got off to a very slow and at times, difficult start.

Part of my Mitrofanoff responsibilities involves chatting with fellow members, carers, partners and parents and regional nurses who ring our number looking for assistance.

It is a huge privilege.

Very often, our number is called because it might be difficult to get hold of the hospital’s specialist nurse and could result in a ‘to go to A&E or not” discussion. Local medical communities often do not have the expertise to help. Parents and carers

may need a chat to discuss practical or relationship issues.

An individual may be seeking information to decide whether a Mitrofanoff is the right personal choice. Many of the questions are very relatable e.g. is there an end to never-ending UTIs or how much leakage is normal? We welcome all callers. The Mitrofanoff team is the mum, the dad of teenagers and small children, the adult or paediatric urological nurse specialist and similarly to me, the individual with the Mitrofanoff. Our team is always available to offer practical advice but, as importantly, a listening ear.

Our Patient Education Days give everyone (not just members) a further opportunity to discuss all issues. Our recent event in London was well attended and well received according to audience feedback. The group sessions are particularly valuable as the topics relate to individual needs and experienceled solutions by those in the group. Rachel will be giving details of where our next event will be held, in her article. I hope I get the opportunity to meet you in person at one of these events.

I think it is fair to say that Mitrofanoffs take some getting used to…. as much as anything, those of us with a Mitrofanoff have to get our heads round doing what comes naturally… in a different way ! Not as easy as it sounds. There are practical, organisational and housekeeping things that we also need to get used to. This involves changes in routine, planning and care but, all is eminently doable and Mitrofanoff Support is here to help if needed.

I wish you all a great summer, enjoying better weather than I currently am and success with your Mitrofanoff.

Renée

Chairperson Trustee

Paul Mitrofanoff honoured with prestigious award Professor Paul Mitrofanoff has received a prestigious award at The European Society for Paediatric Urology (ESPU) Annual Congress.

At its 30th event in April, held in Lyon, France, the Annual Congress awarded the Professor with an Honorary Membership where he was also presented with a Member’s Medal to mark his achievement.

paediatric urology.

Professor Mitrofanoff also gave a presentation covering the history of the procedure where he kindly referenced the work of the charity in supporting those going through the surgery. Our own Children’s Nurse Advisor, Louiza Dale, attended the event in her role as Treasurer of the ESPU Nurses Board.

He joined the University Hospital of Rouen in 1968 where the limitations of continent intermittent catheterisation via the urethra became apparent. A 1976 case involving a 16-year-old boy with spina bifida inspired him to create what is now known as the “Mitrofanoff Principle”, a procedure that has now been reproduced thousands of times around the world.

Paul was born in Paris and now lives there with his family in retirement. He completed his medical studies there and initially trained in general paediatric surgery before specialising in

Mitrofanoff Support was fortunate enough to host Paul at our London Patient Education Day in 2013, and we are thrilled to see his groundbreaking efforts recognised in this way.

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www.mitrofanoffsupport.org.uk

Meet the Mitrofanoff Support Tea m Angela Downer & Louiza Dale Children’s Nurse Advisors

Ken Edwards Partnership Liaison

Sharon Fillingham Adult Nurse Advisor, Trustee

Renée Holmes

Chairperson Trustee

Jo Lightning Legal Advisor Trustee

Neil Lightning

Office Manager

Lloyd McAllister Treasurer

Kyla Rogers Founder

John Thatcher

Strategy Advisor Trustee

Rachel Wall

Marketing Manager

Dan Wood Patron

Angela and Louiza are both Paediatric Urology Nurse Specialists and between them, they have many years experience and expertise within Urology and Urinary Diversions. Angela and Louiza are responsible for educating children and their families before a decision is made to form a Mitrofanoff. They both support the children through and after their procedure.

Ken joined Mitrofanoff Support in 2010. He was a Trustee and Chairperson between 2010 and 2015. Ken has worked with the sponsors since 2012 and has more recently became the Partnership Liaison. He looks after the corporate sponsors and liaises with other charities. Ken spent 50 year in retail Management and Politics, serving in local government as an elected member on many governing bodies while handling the press and TV. In addition Ken is Chairman for the Wessex Stoma Support Group and Vice-President for his local MS group. He is also involved with campaigns at the CA and member of UA. Sharon Fillingham is a Clinical Nurse Specialist and has many years of experience and expertise within the Urology and Urinary Diversions. Sharon gives lectures and holds training days to teach other medical professionals across Europe on the Mitrofanoff procedure. Sharon is also qualified and works as a Psychosexual Therapist.

Mitrofanoff Support is very lucky to have Sharon as its Nurse Advisor and on its management board. Sharon is also involved in all Patient Education Days and has worked closely with Mitrofanoff Support since its launch in 2010.

Renée has a wealth of experience in leadership and management from years working in the corporate world. She took on the role of Chairperson for the charity in 2017 and brings with it a passion and enthusiasm for leading the Board of Trustees to provide greater support for patients going through the Mitrofanoff journey.

Jo joined Mitrofanoff Support in 2016 as a Trustee in the capacity as legal advisor. Jo and her teenage son Will, who has a Mitrofanoff have both benefited from the support of the charity and Jo wanted to give something back by way of time and expertise. Outside of her work with the charity, Jo is the Senior Director, Johnson & Johnson’s Consumer business in Northern Europe where she has worked for 8 years. Prior to J&J, Jo spent 10 years as a software attorney with various US software companies and trained as a litigator with London law firm, Simmons & Simmons.

Neil was a maths teacher and Curriculum Manager for 17 years before becoming a writer and tutor. He first became aware of the charity when he and his wife Jo went to a Patient Education Day in 2015, shortly after their son Will underwent the operation. Having benefitted immensely from the support network, Neil jumped at the opportunity to get involved.

Neil volunteered to help Mitrofanoff Support in November 2017 and is responsible for the day-to-day running of the charity. He manages all the charity’s administrative tasks.

Lloyd joined Mitrofanoff Support in 2018 as treasurer. Outside of his work with the charity, Lloyd is Responsible Investment Analyst at Newton Investment Management where he has worked for six months. Prior to this, Lloyd worked at KPMG for nine years where he qualified as a chartered accountant.

Kyla Rogers founded Mitrofanoff Support in early 2010 with the intention to help others who were going through similar experiences with the Mitrofanoff procedure. Kyla was a Dental Care Professional in Dorset for 10 years before leaving to focus on Mitrofanoff Support.

John Thatcher joined the Board of Trustees as the advisor on Strategic Planning. He was Chairperson between 2015 and 2017. John currently works for Barclays in a Technology Design and Strategy role and is hoping that some of this experience can prove beneficial to Mitrofanoff Support.

John is married to Lily and has three children Elizabeth, Lulu, and Ben. Lulu was born with a variety of conditions that meant she had the Mitrofanoff operation just before her 5th birthday and the whole family are looking forward to getting involved in providing (and receiving) advice on coping with, and providing support for, a child with a Mitrofanoff.

Rachel has worked with Mitrofanoff Support since 2016 as the Marketing Advisor and also provides admin support.

Rachel has a 9 year old son who has a Mitrofanoff so can provide a great parent perspective. Outside of her charity work Rachel is Director of her own business Lighthouse Virtual Assistant where she provides marketing services to businesses and has a media degree and Chartered Institute of Marketing Diploma. Rachel previously worked as the Marketing Manager for Kent Police.

Dan Wood is a Consultant Urologist in Adolescent and Reconstructive Surgery at The University College London Hospital.

After gaining a sound background in general urological practice, he developed an interest in reconstructive urology. He has worked in the fields of female and pelvic reconstruction, urethroplasty and artificial urinary sphincters, paediatric urology and surgery for congenital malformations, as well as adolescent urology. He currently performs a wide range of procedures in urological reconstruction and adolescent urology.

Mitrofanoff Support is extremely proud to have Dan Wood as its Patron. Dan attends all of the patient education days and he is very much in favour of the modern peer to peer approach of Mitrofanoff Support. Dan Wood – “I am honoured to have been asked to become the Patron of Mitrofanoff Support”.

Telephone: 07903 382013 | Email: info@mitrofanoffsupport.org.uk | www.mitrofanoffsupport.org.uk | Registered Charity Number England & Wales: 1145382

www.mitrofanoffsupport.org.uk

Issue 12 | Summer 2019 | 5

Members Story by Gina Caspi Lost and Found There are times in your life when you know you’re in the right place at the right time. It’s not easy to summarize 20 years of anything, but I’ll try my best.

My son was born with Spinal Bifida Occulta. For those unfamiliar with this condition, it’s a “behind the scenes” kind of defect that arises from a malformation of the spinal cord at birth. At five days old, he had seven hours of neurosurgery in order to correct it. At about three years of age, bowel and bladder issues became evident along with some tingling in his feet. We were surprised and frankly, disappointed, to learn that we, his parents, had more insight than the doctors.

Most of them, albeit highly regarded, dismissed our concerns. We’d gone to the “biggest and the best.” It turns out that everyone has at least one of those. We were beyond fortunate to end up at Boston Children’s Hospital. This was a whole different world of medicine than that which we had ever experienced—the one we’d been looking for (this is not meant to be an indictment of the whole medical field, but it is a realistic account of our interactions within it). In Boston, they had an entirely different approach to testing. They were actually listening to us. They, and only they, discovered that my son’s cord had retethered. This was the result of a brilliant cross-pollination of ideas, a kind of “think tank” of doctors in related areas, discussing each case. Prior to meeting this amazing team of doctors, my heart was so broken. Truth be told, it has been, ever since my son was born. The most crushing moment that I’ve endured was hearing the prognosis that his bladder was not functioning at all. This is what the tech, at one hospital, concluded and shared with us (apparently, our doctor had another commitment that day, and couldn’t make it to our appointment, so the tech became our new doctor). He delivered this news, and then was able to continue along with his day, while our lives were changed on a dime, and forever.

I’ve left many appointments in tears, but that was the first time, I cried because I also felt hopeless.

I’m not alone. My husband and daughter have felt the same sadness, because they adore him just as much as I do.

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But life experience has taught me that “mother tears” are very particular…so deep rooted in knowing you created this beautiful human being, who will likely experience pain of all different kinds, and for their entire lives. They will live with embarrassment and preoccupation, which will lead to distractibility. They might be ridiculed, leaving them feeling alienated. They sometimes need to avoid group sports, for fear of kids finding out what our son sadly referred to as his “secret.” That very word can easily connote feelings of shame. It’s amazing that he intuitively thought of it in this way.

Children often become the victim of others who were clearly absent during life’s most invaluable lessons on sensitivity and empathy…on inclusion, rather than exclusion. Given by whomever, schools included, this must be taught.

So, here we are. We have this amazing child…now a young man. He has numerous gifts; he’s a film student at a great college, already an accomplished writer, great tennis player, sweet, funny, handsome as can be, and very kind. He has a smile that can light up a room. With all of that, he’s still impelled to keep his “secret.” This has manifested itself in many ways.

He’ll only play tennis with a very short list of people, including his very best friend whom he implicitly trusts; he’s hesitant to form relationships with guy friends and girlfriends and worries about intimacy; While all of his friends have or have had girlfriends, his concern that no one will be interested in someone with his kind of issues has led him to avoid romantic relationships altogether; he’s fearful of running in the park and serendipitously kicking a ball around, or even doing something as simple as going to the gym. The list, of course, goes on. You can fill in the rest…

Since he was seven, almost 14 years have gone by. He’s done biofeedback, physical therapy, acupuncture. He did self-catheterization, which was okay for six months, and then it became too painful. Fortunately, for a few years, he was socially continent, at least in the daytime. Although his bladder and kidneys have always been perfectly healthy, he’s had a few infections this year, difficulty emptying fully, and some burning.

A few years ago, our Boston Children’s urologist mentioned the “Mitrofanoff.” He was doing better, so it didn’t come up again.

Recently our doctor could sense that we yearned for a more concrete plan, so they brought it up once more. Immediately, and

www.mitrofanoffsupport.org.uk

without having an understanding of the procedure, Sam said, “let’s do it.” We left Boston, with little background knowledge and much to research. The more we learned, the more terrified I felt. I needed to find answers and could not find one support group in this country. It’s unfathomable that the United States doesn’t seem to have a single community to help families, patients, or prospective patients deal with these concerns and fears. There are people who consider this surgery in order to improve their quality of life and there are people who are led to it for a variety of reasons. I have not found one institution that has anything like what this Mitrofanoff support group offers.

After having really scoured the internet for many days—over a period of weeks—to no avail, I stumbled upon the Mitrofanoff Support on Facebook. I read comment after comment, but most of them did not allay my fears. Finally, I was led to the MITROFANOFF SUPPORT PED (Patient Education Day), which takes place in the UK. My husband and I soon discovered that we were the first people from America to ever attend. Although we are not sure that this surgery will be the correct route for us—at least, as of now—we had to learn more, and could not do so in the United States. We craved more of an education and were willing to travel in order to receive it.

In the months leading up to this research, my son had asked me whether or not we had a plan in mind, going forward. I said that our plan was to be as informed as possible, before I would let anyone touch him. When I wrote to him from our London Hotel, he was shocked. He told me that he didn’t know how to thank us for going all that way to try and help him. I told him that we met the nicest people imaginable, heard an amazing nurse and doctor speak, met fantastic parents, and great, smiling kids, who’ve had this surgery, and are all getting on with their lives. I told him that we had a beautiful lunch and that we were made to feel special and not at all alone. Neil, and the other organizers of the event, were grateful and flattered that we would travel all that way to be a part of this.

The Mitrofanoff Team run this day beautifully. We were struck by how giving they are as human beings. It is evident that they want to help others, to provide them with a warm atmosphere, and I dare say, to make it really enjoyable. It’s a day that, even now, I think of often, with true gratitude. As crazy as it sounds, I recall it with nostalgia. We truly feel as though we made some great new friends in London. It was the very first time that, instead of feeling terribly lost, we felt found.

Training Update Raising the charity profile Part of the ethos of our charity is to collaborate closely with healthcare professionals (HCPs). We see the support package for a patient as a partnership between specialist doctors and nurses, family and friends and the Mitrofanoff Support community.

We have recently tried to enhance relationships with HCPs through a series of training events and are keen to undertake more work like this. Both parties benefit enormously from such an arrangement – nurses feel more informed and better prepared to support their patients in hospital and the community, whilst we as a charity are able to raise awareness of our services.

In December our nurse advisor Sharon Fillingham led a training session at Wokingham Continence Advisory Service that was very well received, with useful contributions from those present. This was followed up by attending and exhibiting at the Paediatric Study Day organised by Berkshire Healthcare NHS Foundation Trust in January.

In April, our Office Manager Neil Lightning spoke at the Stoma Care Nurse Meeting at Teddington Memorial Hospital. The day www.mitrofanoffsupport.org.uk

was organised by Caroline Rudoni who leads the Surrey branch of the Association of Stoma Care Nurses. She said afterwards “I’ve had great feedback from the nurses – they really enjoyed your presentation and found it so valuable.”

If you are interested in opportunities for future training events from the charity please contact Neil at info@mitrofanoffsupport.org.uk.

As members can get also get involved – at your next appointment please make your specialist doctors and nurses aware of these sessions, thank you.

Issue 12 | Summer 2019 | 7

Tips for a stress-free holiday Can you travel with a Mitrofanoff?

Of course you can!

The Summer is fast approaching, and you may be dreaming of sunshine, sea and sand but naturally you might also worry about travelling with your Mitrofanoff.

A Mitrofanoff should not impact your lifestyle in any way and you will be able to travel anywhere in the world to any destination you choose. Our tips below will help you prepare for your holiday and help you to feel more confident while away.

The first thing to ensure is that you will have enough medical and catheter supplies to last for your trip so order items from your delivery service early so that they arrive in good time.

Before you travel, make sure you have travel insurance that covers you for your medical needs. You must explain your medical condition to them; they may not understand what a Mitrofanoff is and your underlying condition so be sure to explain fully. When booking travel insurance, expect it to be more expensive than usual. Although this is not ideal, it is better to get the relevant cover and treatment should you need it. Have a look at Free Spirit or Fish travel insurance who specialise in medical conditions (please note we are not linked to these companies in any way).

Many high street banks offer medical insurance as part of their current account offerings. If so, it is well worth explaining to them about the Mitrofanoff and we have examples from members whereby annual cover, for a relatively ‘low’ monthly extra, will cover the Mitrofanoff.

Checklist of items you should always keep with you:

• Antibacterial hand gel • Wet and dry wipes; to ensure you can maintain the same

cleaning technique and you know that it is sterile • Catheters; always take more than you would usually carry,

especially in hot climates where you tend to drink more fluids • Lubricant or KY jelly for your catheters • Plaster removal/barrier sprays (if used) • Plasters (if you cover your site)

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•

•

Reusable drink bottle to keep your fluids up especially if it’s likely to be hot Your camera; to capture lots of fun memories!

Contact the airline (special assistance) prior to travelling and ask whether you can have extra baggage, especially when travelling long haul. Some airlines will provide you with your own toilet on board the flight (especially if it’s your child that is flying with a Mitrofanoff) and also a lanyard to wear that discreetly lets airport staff know that you may need extra support.

You should carry most of your supplies in your hand luggage as you will not be separated from this. It is advisable to have a letter from your GP or a travel card stating your medical needs and the equipment that you will have with you. Some hospitals have a standard letter to explain the importance of medical equipment when travelling and that you will need this in your hand luggage. It is also advisable to have some form of Medicare jewellery if you have not already got this.

Long haul

When travelling long haul, you should think about what you want to do with your bladder management and your Mitrofanoff when not being able to access a toilet. It is a good idea to use the toilet before boarding and before landing.

You might want to play it safe from the offset and tape a catheter in situ for the duration of the journey with a spigot or a flip flow on for easy drainage. Otherwise, it may be advisable to have a catheter, some tape and a drainage bag with you, in case of turbulence and not being able to access the toilet.

The thought of travelling can be daunting, especially when you are travelling for the first time after surgery. Do what makes you feel most comfortable. It is important to tell someone you are travelling with any concerns you may have and to prepare yourself for the flight. The chances are, if you are prepared for the worst, nothing will happen.

Of course the most important thing is to relax and enjoy your holiday.

www.mitrofanoffsupport.org.uk

www.mitrofanoffsupport.org.uk

Issue 12 | Summer 2019 | 9

Upcoming events Dates for your diary!

Get those diaries to hand as we have two very important events coming up for you.

Patient Education Day Saturday 28th September, Austin Court, Birmingham.

We run two events a year and host them in different locations so that people can attend. (Previous locations include London, Liverpool, Portsmouth, York and Bristol).

Come along and meet others who have a Mitrofanoff, listen to presentations from our medical experts and patients and take part in small breakaway sessions so you can have all your questions answered. Children, teenagers and industry medical professionals are welcome. You will also have the opportunity to meet our sponsors and sample some of the latest catheters and other industry products. You will soon be able to book your free place on our website. Keep an eye on our social media platforms for updates.

Charity Ball & Fundraiser – 10-year celebration Saturday 13th June 2020 Runnymede-on-Thames Hotel, Egham, Surrey The Mitrofanoff Support Charity Ball & Fundraiser is a ‘feel good’ black tie event that helps the charity reach out across the country. We feel that both patients and their families deserve a night off from the manic lifestyle that bladder issues can bring to our daily life.

Your ticket includes a three-course meal, half a bottle of wine, tea & coffee, raffle, auction, games, professional photographer, live band and disco. The night is set in the beautiful surroundings of the Runnymede-on-Thames Hotel and the 2020 event is very special as it will be our 10-year anniversary!

All are welcome so bring your friends, family, partners, neighbours, colleagues!

(We’re afraid this event is not suitable for children) So come along, have a fantastic night and help raise funds for the charity at the same time, we’d love to see you.

You will be able to book your tickets on our website, keep an eye on our social media platforms for our news.

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Issue 12 | Summer 2019 | 11

Fundraising Update Thank you for your support We have been very fortunate these past months to have received a generous donation of ÂŁ1,200 from the Freemasons. Andy Crawford, Charity Steward for the Hundred of Axstane Chapter, has coordinated donations from the Chapter itself, the West Kent Province and the Perfect Ashlar Lodge. Andy has promoted our charity as he has a familial connection with this procedure.

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We have recently introduced a strategy to enhance our relationships with Health care professionals. I am delighted to have been able to direct some donations to a charity that means a lot to me and my wife, knowing it will make a significant difference and be well used.�

We are very grateful to him and to the members of these Lodges for their generous donations.

If you would like to support Mitrofanoff Support then fundraising is extremely simple from dress down at workdays, to school playground walks, cake and coffee mornings or cycling. Every donation helps no matter how big or small. If you think you can help raise some much-needed funds, then please contact Neil in our office info@mitrofanoffsupport.org.uk

www.mitrofanoffsupport.org.uk

How to donate and how to help fundraise

To support the charity you can donate online with Virgin Money Giving. Just type

uk.virginmoneygiving.com into your web browser, search

Mitrofanoff Support and click ‘donate’.

Easy Fundraising is a shopping directory listing some of your favourite online stores including M&S, eBay, Tesco and over 3,000 more.

It doesn’t cost a penny to raise funds for us this way, many retailers give exclusive discounts, special offers and even evouchers exclusive to Easy Fundraising.

www.mitrofanoffsupport.org.uk

Visit www.easyfundraising.org.uk search for Mitrofanoff Support and register for free. Each time you shop use the Easy Fundraising website address.

Please encourage your friends and family to signup and raise funds in the same way for Mitrofanoff Support.

Issue 12 | Summer 2019 | 13

Together we will never be alone London Patient Education Day ensures people no longer feel alone Saturday 23 March 2019 We pride ourselves on being a national, and increasingly international, charity and deliberately plan events to make them as accessible as possible for those in various parts of the country. However, we had not been to London since 2013 and the time was right to return, given the excellent transport links and large concentration of local members.

The event was again superbly led by Dan Wood, our Patron and Consultant in Adolescent and Reconstructive Urology at UCLH, and Sharon Fillingham, our Adult Nurse Advisor and Clinical Nurse Specialist at UCLH, ably assisted by children’s advisors and specialist paediatric urologist nurses Louiza Dale and Angela Downer. They are leading lights in the world of Mitrofanoff and we really are so fortunate to be able to draw on their expertise, not just at days like this but throughout the year

The day saw The Regent Suite of the Hallam Conference Centre buzzing with attendees sampling the latest products from our sponsors and exhibitors, meeting up with friends new and old, and enjoying the rather fine catering that was provided, as always, free of charge to all.

Sharon Fillingham Adult Nurse Advisor & Trustee and Dan Wood Patron and Urology Consultant

This PED now holds the record for the furthest anyone has travelled to attend – two delegates travelled an astonishing 3,500 miles all the way from America! We are honoured that Gina and Jay took the time, and not inconsiderable expense, to fly from New York to join us, and you can read their story in this journal. Thank you to all who attended and helped to make it a hugely worthwhile day.

14 | Issue 12 | Summer 2019

However, thanks must also go to all our volunteers, ambassadors and trustees who once again proved that, through great teamwork, the Mitrofanoff community remains as vibrant and friendly as ever – you know who you are, and I hope you know how much we appreciated all of your support in the run up to the event and on the day itself. Everyone present in a green shirt or jumper gives their time freely to be part of this special family and without their goodwill there simply wouldn’t be a charity.

The Council Chamber provided the prestigious setting for a range of talks. For the first time, our Q&A session was guided by questions supplied from those on our closed Facebook group that couldn’t be present on the day – look out for a write-up of that session www.mitrofanoffsupport.org.uk

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on the website. The spread of ages in the room hinted at the various routes to the Mitrofanoff and mirrored the eclectic mix of our membership as a whole. After a very well-received lunch, the breakout sessions saw adults, parents and children come together in smaller, more informal groups to share experiences.

If you have thought about coming to a PED in the past but, understandably, felt a bit nervous to

attend I hope these comments help persuade you of the open, friendly and fun nature of these events. We hope that you will be able to join us at our next Patient Education on Saturday 28th September in Birmingham, please see page 10 for more details.

Neil Lightning Office Manager

Some feedback from the event: “Thank you for existing!

There are a lot of parents in the dark that can use this organisation!”

“Nothing can beat being amongst people like ourselves. I now know that I am not alone!”

“Brilliant – very informative, a great lunch, and interesting topics of discussion”

www.mitrofanoffsupport.org.uk

Issue 12 | Summer 2019 | 15

Congratulations!

Urostomy Association looks forward to its 50th anniversary We recently held a regional “Information Day” in Telford, which was attended by over 80 members and friends.

Excellent speakers were listened to, a buffet lunch eaten and exhibitors visited. There was also plenty of time for people to chat, meeting up with old friends and making new ones. A large raffle meant that most people went away with a prize and two donated pictures were auctioned at the end of day.

Our thanks to everybody who helped to make the day a success, especially all of the volunteers who made refreshments, ensured that everybody was where they should be and cleared up at the end of the day.

We are already starting to plan for next year’s events, and also thinking about our 50th anniversary in 2021.

Meanwhile, our local Branches around the country provide regular meetings and support and our closed Facebook group is always active.

16 | Issue 12 | Summer 2019

This year we have also started to produce a newsletter 3 times a year, going out between our 3 Journals.

Members will now receive more frequent regular communication from us. A further newsletter specifically for our volunteers is also being sent quarterly.

A National Raffle is the main fundraiser for this year, with tickets on sale at £1 each until 6th September and the draw taking place at our National Annual General Meeting on 21st September in Sheffield. Tickets are available from our National Office (tel: 01386 430140).

We are certainly keeping very busy!

With best wishes

Hazel Pixley Chief Executive Officer Urostomy Association

www.mitrofanoffsupport.org.uk

Mitro XL

ce bla us No nt dd ed w re e in b s r r t ei th ec he ng ro o m ug ns a ho tru jor ut ct th ion e UK

OptiSmooth Mitro XL Key Features •

For the first time 4 unique oversized Xtra Large (XL) Heat Polished eyes. Developed especially for mitrofanoff bladder drainage. The oversized eyes will help to flush out the thick mucus produced when bowel tissue is used in the bladder reconstruction. Leading to potential improvements in mitrofanoff drainage and reduced infections.

•

The four Xtra Large (XL) eyes are also heat polished and extremely smooth. Maximizing comfort on insertion and removal.

•

Smooth uncoated PVC nelaton catheter (requires additional water soluble lubrication).

•

Available in 40cm, 10ch, 12ch, 14ch (Charriere sizes)

•

Flexible funnel connects securely to an external collection device such as a night drainage bag.

•

Meaningful product codes OSMXL for OptiSmooth Mitro XL the next two numbers represent the catheter length and the final two numbers are the charrière size (catheter thickness).

•

Can also be used for Ace procedures.

Uncoated nelaton catheter with 4 unique oversized xtra large (XL) Heat Polished drainage eyes Requires additional water soluble lubrication (For single use only)

The New Mucus buster

Four perfectly formed extra large heat polished drainage eyes.

Four eyes are better than two (providing improved flow and drainage) L AT E X

To el Pe pen O

Mitro XL

Pe e Op l To en

For samples please email me on: adrian@vesicaurology.com or phone me on: 01753 445087

Nelaton Catheter with 4 heat polished xtra large (XL) drainage eyes for Single Use Only

Zhejiang Sungood Technology Co.,Ltd

Add: No.39 3Road Baiyang Street Economic Development Zone Hangzhou, Zhejiang, China Tel: 0086-571-28969218 Fax: 0086-571-28969226 http:// www.sungoodmed.com.cn E-mail: *****@sungoodmed.com.cn

Curas Ltd.

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OptiSmooth® is a registered trademark, Mitro® is a registered trademark OptiSmooth Mitro is a UK unregistered Design 2011

FREE

289 Coronation Road, Bristol. BS3 1RT. England Tel: +44 7796 338585 E-mail: info@curas.com

PO Box 4145, Slough, Berkshire. SL1 0QA www.vesicaurology.com

Vesica Urology Ltd PO Box 4145 Slough SL10QA Phone : +44 (0) 1753 445087 Fax : +44 (0) 1753 447446 Mobile : +44 (0) 7948 172607 adrian@vesicaurology.com www.vesicaurology.com

OptiSmooth®, Mitro®, MitroXL® are registered trademarks OPTISMOOTH MITRO IS A UK UNREGISTERED DESIGN 2011 Issue 12 | Summer 2019 | 17 OPTISMOOTH MITRO XL IS A UK UNREGISTERED DESIGN 2016

Aled Griffiths Children’s Ambassador Aled gives his top travel tips Hi everyone, I hope you had a great Easter and didn’t over indulge with eggs.

I have had a good couple of months, I managed to win a couple of shooting competitions and I was told that I was the most improved shooter in the Devon winter league so I will also receive a trophy for that.

My training at Stoke Mandeville is going well, hopefully I will receive my new air rifle in the next week or so that will then allow me to train much more in preparation for any potential Paralympic opportunities. However, that said, I had an arthroscopy on my wrist a couple of weeks ago, so my only good arm is in plaster for the next few weeks while it recovers, so no shooting for me for a while.

In this edition one of the subjects has been about travel and how we cope with a Mitrofanoff, so as summer is fast approaching and therefore the chances of travel increase, I thought it would be good to add my thoughts.

Even though I am only 15 I have managed to travel quite a lot over the years, 5 trips to the States and a 3-week trip to India (without Mum and Dad) to name a few. These trips have all been organised with my needs in mind so I haven’t had any major issues.... so far that is. A few things we have done though have made a difference to how the trips have gone.

Some of these are quite simple, whereas a couple need to be organised.

18 | Issue 12 | Summer 2019

For me some of the simplest things are making sure that I have a variety of catheters with me so that I can catheterise in any circumstance. I also take a flip/flow valve and a leg bag just in case the need arrives.

If we are flying anywhere my Mum contacts the airport and the airline ahead of time to organise help so that we don’t spend a long time in the security queues and have good access to the toilets when aboard the plane. The flight attendants have always been good, on a couple of occasions they have closed off the toilets to everyone while my Mum or Dad have helped me.

I think most of the time it’s all about knowing your body and having a good routine, luckily for me I know my body quite well and my parents make sure that I have a good routine.

If you have any good tips for travelling with a mitro it would be great to hear from you. Please remember that if you or your child would like to chat about life as a kid with a Mitrofanoff I am always available, just drop a line to the office with your details etc.

Well, whatever you do or wherever you go for your holidays, I hope you have a good time with no complications.

See you soon,

Aled xxx

Aled Griffths Mitrofanoff Support Children’s Ambassador

www.mitrofanoffsupport.org.uk

Non-coated Nelaton Catheter with 4 Drainage Eyes and Introducer Grip Designed specifically for the drainage of urine from a Mitrofanoff catheterisable channel. MCath4® can also be used for urethral catheterisation and ACE procedures.

MCath4® is a cost-saving alternative to your usual 4-eyed catheter.

Ultra Smooth Polished Eyes

High Quality Smooth Non-coated PVC Catheter

Four staggered heat polished eyes for improved drainage, especially where mucus is a problem. Engineered to an exceptionally smooth finish for a safer insertion and removal.

Requiring water soluble lubrication prior to use.

Flexible Funnel For a secure connection to a night drainage or other urine collection system.

Green Introducer Grip Soft but firm green introducer grip to assist with a more precise and hygienic insertion.

Available in a 40cm length in various charrier sizes: 8Ch, 10Ch, 12Ch, 14Ch, 16Ch and 18Ch.

Product Information Label Self-adhesive product information label for convenient record.

Try our UltraSmooth MCath4® Catheters.

Simply call FREEPHONE 0800 652 0424, and quote M143.

For more information on our UltraSmooth MCath4® Catheters, www.mitrofanoffsupport.org.uk please visit our website: www.peakmedical.co.uk

Issue 12 | Summer 2019 | 19

Children’s Corner Brain Teasers Q1.

Which weighs more, a pound of feathers or a pound of bricks?

Q2:

What word begins and ends with an E but only has one letter?

(Answers under jokes)

Name: _________________________________________________

Jokes

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Find the following words in the puzzle.

Words are hidden and .

CHRISTOPHER ROBIN EMOJI MOVIE DUMBO CINDERELLA FANTASTIC BEASTS FROZEN

GOOSEBUMPS HARRY POTTER PETER RABBIT GOOSEBUMPS MARY POPPINS INCREDIBLES

TOYSTORY TROLLS WRECK IT RALPH

Q: What music frightens balloons?

A: Pop music.

Q: Why can’t you give Elsa a balloon?

A: She will Let It Go. Q: Why can’t Cinderella play football?

A: Because she’s always running away

from the ball.

Q: What do you get

when you cross a

Labrador and a magician?

A: A labracadabrador!

Q: Where does a polar bear keep his money?

A: a snow bank.

Created by Mitrofanoff Support using Word Search Generator on Super Teacher Worksheets (www.superteacherworksheets.com)

Q: Why do cats make terrible storytellers?

A: They only have one tail.

A1: Neither. They both weigh one pound..

A2: Envelope 20 | Issue 10 | Spring/Summer 2018

www.mitrofanoffsupport.org.uk

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0LWUR OptiSmooth Mitro Key Features •

Developed specially for Mitrofanoff bladder drainage but can be used urethrally and for Ace procedures.

•

Four drainage eyes help to improve urine flow and help reduce eye blockage due to debris and mucus.

•

Smooth uncoated PVC nelaton catheter (requires additional water soluble lubrication).

•

Available in 40cm and 50cm lengths in 8ch, 10ch, 12ch, 14ch, 16ch and 18ch sizes.

•

Flexible funnel connects securely to an external collection device such as a night drainage bag.

•

Meaningful product codes OSM for OptiSmooth Mitro the next two numbers represent the catheter length and the final two numbers are the charrière size (catheter thickness).

Uncoated nelaton catheter with 4 drainage eyes Requires additional water soluble lubrication (For single use only)

Four perfectly formed staggered drainage eyes.

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Four eyes are better than two (providing improved flow and drainage) For samples please email me on: adrian@vesicaurology.com or phone me on: 01753 445087

www.mitrofanoffsupport.org.uk

Vesica Urology Ltd PO Box 4145 Slough SL10QA Phone : +44 (0) 1753 445087 Fax : +44 (0) 1753 447446 Mobile : +44 (0) 7948 172607 adrian@vesicaurology.com www.vesicaurology.com

OptiSmooth® is a registered trademark, Mitro® is a registered trademark OPTISMOOTH MITRO IS A UK UNREGISTERED DESIGN 2011 Issue 12 | Summer 2019 | 21

Stoma Cap Advert Mitrofanoff Spring 19_Layout 1 23/04/2019 14:26 Page 1

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Exclusive UK Distributor For

22 | Issue 12 | Summer 2019

Ostomy Products www.mitrofanoffsupport.org.uk

‘Follow us online Don’t forget you can keep up-to-date with all the charity news on our social media platforms.

@mitrofanoffsupport

You can also find support and advice over on our website.

www.mitrofanoffsupport.org.uk

www.mitrofanoffsupport.org.uk

Issue 12 | Summer 2019 | 23

How You Can Support Us Most of us now shop online and when you use AmazonSmile Amazon will donate 0.5% of the net purchase price (excluding VAT, returns and shipping fees) from eligible purchases to Mitrofanoff Support.

So each time you shop just type in www.smile. amazon.co.uk and shop away. It doesn’t cost you a penny but will help raise some funds for the charity.

Here are the full instructions for you to follow to set everything up - it couldn’t be easier!

Thank you for your continued support.

You must use smile.amazon.co.uk from now on, both to sign up and to shop (if you use amazon.co.uk we will not receive the donation!)

Enter “mitrofanoff” in the search box, and then click select

We’ve changed our address and it’s now

Tick the box and start shopping! Remember, always use smile

Mitrofanoff Support, PO Box 3690, Wokingham, RG40 9QH

Don’t forget to follow us online on our social media pages or on our website.

www.mitrofanoffsupport.org.uk Registered Charity Number for England and Wales 1145382

@mitrofanoffsupport