Issue 14 Mitrofanoff Support Journal Summer 2020

Issue 14 | Summer 2020

Journal Together we will never be alone

• Angela’s amazing journey from patient to nurse • Dan Wood, our Patron, gives his personal perspective of the pandemic • Fundraising Update • Review of 2019

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

Contents Editor’s Welcome

3

We shall go to the Ball – eventually!

4-5

Vesica Urology Ltd Sponsor Advert

6-7

Review of 2019

8

Accounts Summary

9

The Patient and the Patient’s Advocate! 10-11

Legal Advisor

Sharon Fillingham Adult Nurse Advisor

Advisors Louiza Dale and Angela Downer Paediatric Nurse Advisors

Kenneth Edwards Partnership Liaison

Staff Neil Lightning

Hunter Sponsor Advert 12-13 Fundraising Update

14

Dates for your diary!

15

Flexicare Sponsor Advert 16-17 Stoma Friendly Society

18

Life In Lockdown

18

Rare Revolution

19

Puzzle Answers

19

Hollister Sponsor Advert 20-21

Office Manager

Details of our board members, advisors and staff can be viewed on the website.

Puzzle Page

22

Peak Medical Sponsor Advert

23

How You Can Support Us

24

Thank you to all our 2020 Sponsors GOLD SPONSORS

GOLD SPONSORS

Advertising Enquiries

Email: marketing@mitrofanoffsupport.org.uk

GOLD SPONSORS

Editorial Submissions

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

Website

BRONZE SPONSORS

www.mitrofanoffsupport.org.uk /mitrofanoffsupport

@MitrofanoffSpt

@mitrofanoffsupport

@mitrofanoffsupport

2 | Issue 14 | Summer 2020

GOLD SPONSORS

BRONZE SPONSORS

www.mitrofanoffsupport.org.uk

Neil Lightning Editor’s Welcome A lot has changed since the last Journal. In many ways, this is indeed a brave new world.

The situation is still unfolding, knowledge still being gained, advice still being updated.

As I write it is early May, but by the time you read this the world will have already moved on to the next stage of its rebuild, the next iteration of “the new normal”.

However, some things remain the same. Our compassion for each other has not faltered and has, if anything, grown over these last few strange months. Many of us feel a greater sense of community, a unity of purpose, a national pride. The clap for carers every Thursday, the checking on neighbours, connecting with friends and family in some virtual way – these are all small gestures, but hugely important to our collective wellbeing.

I know this personally as well. Just when my instincts as a parent told me to circle the wagons, hunker down, and prepare to ride out the oncoming storm by sheltering my family as best I could, my eldest son announced he wished to return to university to do his bit. As a second year medical student with his exams now cancelled, he wanted to fight the good fight from the frontlines. He signed up to be placed into hospital settings, but was not required in the end, and so now works in a care home in his university city. What a wonderful, brave young man. Words cannot describe how proud I am of him, but boy it was tough to see him go.

And of course he is by no means alone. Never has the nation felt a greater pang of gratitude for our NHS staff, and indeed all our key workers. In our lead article on page four Dan Wood, our Patron, gives his personal view of how the Covid-19 has affected his work and life. He is just one of millions of people who have ‘kept calm and carried on’ in the midst of the most trying of circumstances. This is an army made up not just of an extraordinary array of medical staff and carers, but also of refuse collectors, supermarket shelf-stackers, delivery drivers, emergency services, teachers, cleaners, volunteers and lots else besides.

Some of us have felt we are not doing enough, but everyone is doing something. Simply by following government guidelines on social distancing, by walking on the other side of the road during your daily exercise, by not going to the supermarket when you don’t need to – you are doing your bit. Working from home, helping the children with their remote schoolwork, buying online necessities for the elderly couple next door – these all help to minimise risk for yourself and others.

Some of us have been ill. Some of us will be dealing with bereavement. Some of us are dealing with frustrating delays to planned treatments or surgeries. Some of us will be feeling very lonely. Some of us will be struggling with mental illness.

Some of us are trying to juggle working from home and looking after young children. Some of us will be worried about our jobs or businesses. Some of us have missed holidays or birthday parties or religious events. Some of us have missed

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funerals of loved ones. All of us are adjusting to new routines and behaviours. All of us are desperately missing friends and family. All of us are wondering what the future holds. And most of us desperately need a decent haircut!

I know it is hard. Every day I wake up there are a few seconds of grace before I remember we are now living in a Covid-19 world, and then the harsh reality seeps in. But there are still fragments of joy, glimmers of hope. Hug those that you can, laugh remotely with those you can’t, smile at strangers on your daily walk, breathe in the fresher air. As our amazing medics fight hard to gain ground of this most stealthy of enemies, this is how we shall personally defeat the virus – by refusing to lose hope, by refusing to abandon happiness, by refusing to be beaten.

So thank you to everyone for doing their bit, in whatever form that takes. Thank you for washing your hands. Thank you for standing 2m away. Thank you for adjusting your life and abiding by the rules so that our brave new world might be a better new world.

Stay safe.

Neil

Neil Lightning Editor, Mitrofanoff Support Journal E: info@mitrofanoffsupport.org.uk

Issue 14 | Summer 2020 | 3

A message from our Patron We shall go to the Ball – eventually!

Dan Wood, our Patron and Consultant Urologist in Adolescent and Reconstructive Surgery at UCLH, gives his personal perspective on the last few months.

It has been said by many and felt by everyone; there is no doubt, we really do live in extraordinary times. I hope, by the time you read this, we will be further down the road of recovery from Covid-19. I am sure we will all look back and have our own story to tell, and for me there are some true highs and lows, along with immense frustrations. As we return to a life where we can once again meet, shop, travel and work, what we regard as normal will be different.

Safety first.

Lockdown has been an experience that we have never previously endured. It is easy to feel the negative side of it but perhaps it is important to take some time to re-evaluate the positive aspects. None of us have been able to see our family in the way that we would like. However, more than ever, I have been able to take the time to speak with them or write to them.

In particular I have missed being able to see Freya, my lovely daughter, and my parents, to say nothing of other family and friends. When the time comes for us to emerge, all of those people in my life, and time spent with them, will be valued all the more. We have heard repeatedly that social distancing and avoiding complex social situations has and will continue to slow the spread of infection and save lives; we are gradually seeing the effect of that.

I have loved being able to spend time with Rebecca, my wonderful girlfriend. I don’t think I have driven her too mad!

Rebecca and I both developed symptoms of the virus fairly early on but were lucky that we were only mildly affected. It has been immensely sad to hear of those who have suffered more or lost their lives during this time. I remain incredibly grateful that my family have, so far, been spared such loss.

Tragically, some have not been so fortunate, and we have also lost friends and colleagues across the NHS, some directly through the Covid-19 virus and some who have been taken by other sudden illnesses that they did not survive. My normal response would be to reach out with support and mourn alongside family and friends, but we cannot do that. The need to change our rituals even in the direst of circumstances emphasises the ruthless effects of this virus and the importance of our actions, now more than ever.

However, in the last few weeks my working week, along with that of my colleagues, has changed beyond all recognition.

We began early on by having to phone patients and cancel their planned surgery as we worked to create capacity for the expected surge in patients affected by Covid-19. At that time, we had hardly seen any cases of the virus, making the concept of what we were about to face impossible to imagine and very hard to convey.

A day in the life…..

I admit I had doubts that we were doing the right thing and felt guilty about the cost to those who had prepared themselves and their family for such a singular event in their lives. We spoke to colleagues in Italy who warned us of what we could expect, and their stories were harrowing and sad. What we heard from our friends abroad, and learned from the gradual arrival of people sick with Covid-19 through our hospital doors, emphasised the need to protect patients and avoid bringing them into hospital where we could.

I am fortunate to have my job. The team I work alongside are fantastic – kind, caring, immensely knowledgeable and skilful.

I have always felt privileged to work with my patients, many of whom show immense courage and insight into their conditions and circumstances.

We have learned, through the experience of others, that those patients who appeared asymptomatic and had surgery but were later found to have Covid-19 have a greatly increased risk of death following their operation. The thought of inadvertently exposing someone to that degree of risk for surgery that

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could wait does not bear thinking about. My colleagues and I are mindful that the delay of any operation is dreadful and we certainly do not take that path lightly, but we are totally powerless in the face of this viral assassin. We hope to begin operating and using our training as soon as we can, but we must do so with care and consideration for the unintended consequences.

It has been a harsh realisation that many of the skills of a reconstructive urologist are simply ‘not required’ at present. I have tried to be useful. Initially, I was working with colleagues to reconfigure services so that we could safely manage emergencies in urology and provide important information for patients. We tried to free the time of our team so that they could help where needed and I offered myself as a pair of hands where I could be useful. We set up telephone clinics to try and maintain contact with our patients where we could. I think this was important to ensure that all patients know we are still working for them, but these clinics are very limiting in terms of what we can offer over the phone.

It seems clear that if this was the best way to deliver healthcare we would have been doing so, ever since Alexander Graham Bell invented the telephone. Telephone or video consultations are important for now, and may well be useful for some in the longer term, but they are clearly not the best for all. Many have used telephone/video consultations in the past, they certainly have a place – at the moment they are the sole means of contact for all but the most urgent or emergency patients.

The situation that this virus has imposed upon us is difficult now but it may be a spur to look at how we modify how we communicate in the future. Perhaps technology can augment or improve our service – but it will not replace the important face to face elements of care.

I have had the privilege of working alongside colleagues in areas where I do not normally work. Many of my urology team and I have helped with the care of patients on the intensive care unit, working alongside exhausted and hard-pressed colleagues. We could only offer a pair of hands to help with turning patients (an important part of Covid-19 care) but we were warmly welcomed and thanked for any assistance and support we could offer in a very difficult environment. Many of

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our team have given time to teach new volunteers or provide care at the Nightingale Hospital. In doing so I met people from across society, all keen to do their bit caring for and helping the sick. These included aircrew, an actor and an amazing young man who works as a grill chef for Nando’s in ‘peacetime’. A humbling experience, in every way.

Charity begins at home I remain honoured to be a small part of Mitrofanoff Support and all that it offers. The charity has had to cancel one of its Patient Education Days in March and postpone our planned Charity Ball & Fundraiser in June until 2021. I know that the committee took these decisions with regret but with the best interests of potential attendees and organisers at heart. Behind the scenes there are still many who are working within the charity to provide support for those who need it. The team have also worked to ensure that we have plans for a new Patient Education Day in September and a Ball, to beat all Balls, next year.

Many people are shopping online more than ever before. If you would like to do something positive for Mitrofanoff Support you can find them through smileamazon.co.uk – this donates 0.5 % of the net purchase price of your Amazon buy to the charity (see back page for more details). As we emerge from lockdown there will be many more ways you can help to raise money or support us. All are welcome. If you have ideas, however crazy, let the team know – I certainly have my thinking cap on.

I give my thanks to all of you, if you have done anything (however large or small) for this or any other charity – you are amazing. Most of all, I offer my humble thanks for your calm, courage and resolve in staying at home, protecting those you love, those who care and the people around us from this virus.

Adversity has united us in our goal.

As I write, the newly promoted Colonel Tom’s celebrates his 100th birthday. What an incredible man, who has inspired so many with his incredible walk. It seems fitting to leave you with his words: “Tomorrow will be a better day”.

(This article was written on 30 April 2020.)

Issue 14 | Summer 2020 | 5

Advertisement Feature Vesica Urology Ltd celebrates its 10 Year Anniversary Firstly I want to send my best wishes to all at Mitrofanoff Support. It is has been a difficult year for all of us facing unknown challenges with COVID-19. I do hope you are all well and staying healthy and keeping positive.

and 50cm and in 8ch-18ch charriere sizes. Feedback on these catheters has been excellent, with comments ranging from increased drainage and flow to actually helping to postpone a young boy’s kidney transplant. The OptiSmooth Mitro catheter drained so effectively that his infections reduced, stabilising his kidneys.

Vesica Urology Ltd was founded in 2010, so I feel this is a good time to thank the many people who have supported my company over these last 10 years.

Having identified that 4 large drainage eyes offered such an improvement to individuals, I decided to develop a new catheter. Working with my manufacturer to add the largest drainage eyes possible, whilst taking into consideration the catheter thickness (charriere size), OptiSmooth Mitro XL was created. It has 4 extra large (XL) drainage eyes developed specifically to help improve drainage flow in those individuals who produce large amounts of mucus. The OptiSmooth Mitro XL is now being offered in the major centres across the UK as part of their catheter choices.

I first learnt about bladder augmentation procedures such as the Mitrofanoff back in 1995-6 when I was working for a large company involved in continence care. At this time Mitrofanoff procedures were mostly undertaken at specialist centres such as UCLH, GOSH and John Radcliffe, with so many continence advisor departments wanting to know more about bladder augmentations.

With the help of Sharon Fillingham and Rachel Leaver from UCLH, Sue Keeble from The Portland Hospital and Susie Easton from The Battle Hospital Reading, we ran a series of Mitrofanoff study days, inviting continence advisors from all over the UK to facilitate a greater understanding of the Mitrofanoff procedure.

I personally learnt a great deal from those who participated and I’m extremely grateful to everyone who helped to make these educational days such a great success.

It was generally understood that if bowel tissue had been used in augmentation procedures then mucus formation could occur, often causing impaired drainage or blockage of conventional 2-eyed catheters with smaller drainage holes. Although 4-eyed catheters did exist they were not readily available.

In 2010 when I formed my own company, Vesica Urology Ltd, I wanted to develop a new range of special 4-eyed catheters . The OptiSmooth Mitro catheter was launched in 2 lengths of 40cm

I know a lot of you have been worried about the effect of COVID-19 affecting product supply. Vesica Urology Ltd has taken steps to increase the product availability of OptiSmooth Mitro and OptiSmooth Mitro XL catheters. Following a recent very large sea shipment we are now keeping a much increased stock level which is held in new warehouse space. This will ensure continuity of supply for the many people who use my products.

I am very grateful to Mitrofanoff Support, proud to be a Gold Sponsor and I am looking forward to working with you all for the next 10 years.

With warmest regards

Adrian English Vesica Urology Ltd.

Adrian (second from the left) with Dan Wood (centre) after skydiving for Mitrofanoff Support in 2018

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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

Mitro XL 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) FREE L AT E X

Mitro XL

To el Pe pen O

Pe e Op l To en

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

www.mitrofanoffsupport.org.uk

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.

0197

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

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 OPTISMOOTH MITRO XL IS A UK UNREGISTERED DESIGN 2016

Issue 14 | Summer 2020 | 7

Review of 2019 In the previous journal I promised to publish, in this edition, the Accounts for the year ending 31 October 2019. These are presented opposite, but please bear in mind that they represent only the summary position – more detail is available by searching for Mitrofanoff Support on both Companies House and the Charity Commission websites.

The reason I am keen to include them in the journal is for transparency – to maintain faith in the charity sector I think it is important for everyone to have easy access to financial information. Although we do not charge a membership fee, or for that matter charge for any access to our services, many of you work hard to support us in a variety of ways, and I hope you can see that your efforts have resulted in financial safety and security for our charity.

The key headlines are: •

Income decreased compared to the previous year due to us not having a place in the London Marathon or holding a Ball in 2019.

•

Increased expenditure on charitable activities due to extra costs from Patient Education Days and conferences.

•

Despite this, we still made a ‘profit’ of nearly £14,000 and now have approximately £50,000 in reserve.

•

Given the uncertainty surrounding future fundraising events in the current pandemic, we are in a much healthier position to ride out any storm compared to a few years ago.

But what do all these numbers mean? What has the charity actually done in 2019?

We have introduced a well-received training programme for carers and healthcare professional. We have continued our improvement of the governance of the charity by updating policies and holding training sessions on cyber security and privacy. We have continued to streamline the office operations and reduce costs. We have increased our presence at medical conferences and written new leaflets in order to raise awareness. And of course we have continued to support members by phone, email and social media, with over 1,700 people from all over the world now in our closed Facebook group.

but the feedback afterwards shows just how worthwhile they are. It’s comments like these that remind me of why I, the Trustees and our volunteers do this job.

‘Hi, I’m Chelcie Garratt. My husband, carer and I attended the Patient Education Day that you held in Birmingham in October 2019.

I firstly wanted to thank everyone who was there because I had my Mitrofanoff surgery 16 days after the PED and honestly all three of us left feeling much more prepared for the future with a Mitrofanoff.

I really enjoyed the talks from different perspectives as I learnt so much! This helped me form some of my own questions and feel more ready for my pre-op assessment and operation day itself. Attending helped me, my career & my husband feel not so lost as it provided a better understanding.

Everyone was so lovely and welcoming! Once we felt comfortable we were all talking and relating to others in similar situations; I spoke to other patients while my husband spoke to partners. We both came away with a list of tips, advice and comfort in knowing others have gotten through the surgery and returned back to their lives as normal as possible.

Having the stands of companies with their different offerings of catheters and products was very informative. I left with samples, advice sheets and contact numbers for different suppliers, which was extremely useful when it was time for me to start using the Mitrofanoff. To know there was a range of catheters I could use helped me not panic when I struggled to use the first ones I tried.

I cried on my way home because it genuinely felt amazing to feel part of something rather than the dreadful feeling of loneliness. From the bottom of my heart, thank you for organising the PED. I look forward to attending the next one and talking to the Mitrofanoff community face to face again.’

However, the main highlight of 2019 for me has to be the astonishing success of our Patient Education Days in London and Birmingham. These events offer a rare chance for Mitrofanoffers and their families to come together in a relaxed and friendly setting whilst hearing interesting talks, having questions answered, sampling new products, and enjoying a chat over a rather fine lunch!

The numbers attending both were incredible and never before has our key message “together we will never be alone” been better demonstrated. With the costs of conference venues in city centres, and the increased number of ‘delegates’ involved, these PEDs now represent our biggest ongoing expenditure,

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Accounts STATEMENT OF FINANCIAL ACTIVITIES

Mitrofanoff Support Statement ofOFFinancial Activities STATEMENT FINANCIAL ACTIVITIES

the Year Ended 31 October 2019 INCLUDING INCOME for AND EXPENDITURE ACCOUNT FOR THE YEAR ENDED 31 OCTOBER 2019 Unrestricted

Restricted

Total Unrestricted funds 2018 £ £ Total Unrestricted 13,017 17,333 funds 20,069 37,196 2019 2018 62 £ £-

£ Unrestricted 12,340 funds 20,069 2019 62 £

£ Restricted 677 funds 2019£-

32,471 12,340 20,069 62 1,199 18,098 32,471

677 182 677

33,148 13,017 20,069 62 1,199 18,280 33,148

Total expenditure Expenditure on: Raising funds Net income Charitable activities

19,297 1,199 13,174 18,098

182 495 182

Total expenditure

19,297

Net income SHEET 13,174 BALANCE AS AT 31 OCTOBER 2019

Restricted funds 2018 £ Restricted funds2018£-

2018 £ Total 17,333 37,196 2018 £-

54,529 17,333 37,196 7,350 13,791 54,529

-

54,529 17,333 37,196 7,350 13,791 54,529

19,479 1,199 13,669 18,280

21,141 7,350 33,388 13,791

-

21,141 7,350 33,388 13,791

182

19,479

21,141

-

21,141

495

13,669

33,388

-

33,388

INCLUDING INCOME ANDfunds EXPENDITURE funds ACCOUNT 2019 2019 FOR THE YEAR ENDED 312019 OCTOBER 2019 Income from: Donations and legacies Other trading activities Investments Income from: Total income Donations and legacies Other trading activities Expenditure Investments on: Raising funds Charitable activities Total income

BALANCE SHEET AS AT 31 OCTOBER 2019

Debtors Cash at bank and in hand

Current assets Debtors Creditors: amounts falling Cash at bank and in hand due within one year Current assets Net current assets Creditors: amounts falling due within one year Income funds Net current assets Restricted funds Unrestricted funds Income funds Restricted funds Unrestricted funds

Balance Sheet 2019

Total

At 31 October 2019 £

2018 £

2,226 49,532 2019 £ 51,758 2,226 49,532 (1,440) 51,758 50,318

2,323 36,576 2018 £ 38,899 2,323 36,576 (2,250) 38,899 36,649

(1,440)

(2,250)

50,318 2,359 47,959

36,649 1,864 34,785

50,318 2,359 47,959

36,649 1,864 34,785

50,318

36,649

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Issue 14 | Summer 2020 | 9

Member’s Story The Patient and the Patient’s Advocate!

My name is Angela Adams and I am writing down my personal health journey that has led me to becoming a member of Mitroffonoff Support in the hope that it might inspire others.

I was born in 1959 along with my twin sister Helen, in Oadby, near Leicester. We were the first born of our family, and our younger sister Alex arrived four years later. In the days when there were no maternal scans, we arrived unexpectedly three weeks early and our Mother was not aware she was even having twins!

Weighing around 9lb together, I was rushed off to the local hospital as it was clear that not all was quite right. My twin sister, although only 5lbs, was healthy and stayed with our Mother in the nursing home as it was then (think Call The Midwife and you wont be far wrong!)

It turned out that I was born with congenital abnormalities of the bowel and bladder and was operated on the next day to complete my alimentary tract and create an opening (an anal sphincter). I was also later diagnosed with Hirschprungs disease and a neurogenic bladder.

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To cut a long story short, over the subsequent years I was in and out of hospital in Leicester until my parents decided to move to London so I could be treated at Great Ormond Street Hospital (GOSH). So in February 1965 I became one of the first children to have a urinary diversion known as an ileal conduit and formation of a stoma.

Back then there were no sophisticated stoma supplies and I was sent home with rubber bags and flanges, kept secure with a very tight belt around my waist. My Mum used a Maxwell House coffee jar and rubber tubing as a night drainage system and washed out my bags and flanges, hanging them on the washing line to dry.

Until the age of 6 I attended a school for children with physical disabilities but as soon as I had the operation I moved to a state school and managed my stoma bag on my own. At times I had very sore skin and leakages did occur but having a twin sister we were very competitive and I think this helped me become who I am today - independent and willing to try most things.

Over the next 10 to 15 years I was in and out of GOSH and had surgery for my bowel problem, trying to deal with incontinence

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but nothing really worked. I became used to hospital life and spent a very enjoyable Christmas there helping the nurses look after the younger children. I played hospitals when I came home and became keen to follow a career in nursing.

To cut another very long story short, after applying to several schools of nursing I was successfully enrolled on a nursing course in West Sussex to do my two year state enrolled nurse training. I was ecstatic and revelled in every moment of that training, becoming the student of the year in my final year.

Coincidentally, the Sister on the children’s ward where I trained had nursed me in GOSH and recognized me on my first day on her ward!

In January 1980 I became a qualified enrolled nurse and worked on a surgical ward at Worthing hospital. I had excelled in my exams and fulfilled my ambition, whilst along the way proving a few people wrong who thought that I couldn’t physically manage the training. I later completed a conversion course and became a registered general nurse, enabling me to climb the nursing ladder and also become a qualified district nurse.

Having been a hospital patient as a child and adult, I believe that the empathy I have shown as a nurse has helped patients deal with complex life changes in a way that perhaps someone without my experience would be unable to give. In addition, the way I have managed staff at work has been with a degree of understanding that has taken into account their personal drive and ambition and, particularly, if they have challenges outside of work.

In 1981, as a patient, I asked to be moved to an adult hospital (transitional care had not been invented!) and in May of that year had a colostomy performed in a London hospital, at my request, to manage my faecal incontinence.

that eventually affected my ileal conduit, I underwent surgery for a Mitrofanoff and Indiana pouch at Southampton General Hospital. I have been very fortunate that I have not had any major problems since, apart from a couple of kidney infections requiring hospitalisation.

In May 2019 I retired after forty two years service in the NHS, rising to a middle management position looking after elderly care services and community nursing. I had achieved more than I could have dreamed when I sat as a patient at GOSH in the1970’s wishing to become a nurse.

I have quietly managed my condition and lived life to the full, even completing a 15,000 ft sky dive in New Zealand on a holiday of a lifetime in 2013. Most of my nursing colleagues have never known about my stomas and, when I look back on why I have not told people, I think it is because years ago there were not the support groups in place and people just got on quietly keeping such things to themselves. I just didn’t want to feel any different from others. It has also helped having a twin sister to measure my own success against (in a positive way) and, with our parents treating us the same, I did not see my condition as anything different – I was just me.

In 1986 I married Richard who has been my strength and support over the years and has always encouraged me in whatever I have wanted to achieve. In December 2019 we moved across the Solent to the Isle of Wight to retire and consider what I may be able to offer the local community.

It is early days as I write this article but I hope that in some way I can continue the life skills that I have learnt along my journey to continue to support others in whatever way is deemed appropriate. Mitrofanoff Support (which I found by accident on the internet) is a truly valuable resource for everyone who undergoes the procedure, or is contemplating doing so. I intend to fully support them for as long as I can.

In 1998, after several years of problems with urinary infections

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Issue 14 | Summer 2020 | 11

SOME CHALLENGES OF LIVING WITH A MITROFANOFF One of the many challenges of living with a Mitrofanoff is your stoma site. Some scarring can lead to unsuccessful and uncomfortable insertions, and difficulties with inserting your catheter could lead to urine retention and (yet) another trip to hospital!

The solution could be a catheter with a tapered tip.

Urinary tract infections can occur when the bladder is not fully drained.

The solution could be a catheter with four eyelets for better drainage.

Are you using a hydrophilic coated catheter (water activated), and still getting some UTIs? Have you asked yourself what is contained within the coating of your current catheter? Is it solvent (petroleum) based and are you sensitive to a chemical within the coating?

The solution could be a catheter with a natural water based hydrophilic coating.

Imagine if you could use a catheter with a tapered tip, flexible enough to navigate the bends and loops of your Mitrofanoff, with four eyelets for better drainage and if required natural water based hydrophilic coating. Well you can!

YOU CAN SWITCH! Interested in trying a free sample?

Contact us by emailing support@hunterurology.com or call Vicky on 01392 340169

ď‚‚ď‚

| www.hunterurology.com

TWO ISC CATHETERS SPECIFICALLY DESIGNED FOR MITROFANOFF USE:

• Uncoated.

• Unique 360 flexible tip for precise and easy insertion.

• Tapered tip for maximum comfort.

• Engineered with 4 smooth eyelets.

Smooth flexible tip for easy insertion

• Natural water based hydrophilic coating.

• Containing Aloe Vera to produce a silky, smooth coating with no sticky residue.

• Includes an easy to open water sachet.

• Unique 360 flexible tip for precise and easy insertion.

• Engineered with 4 smooth eyelets.

4 Smooth eyelets

Fundraising Update Generous Friends

Could you go without?

For the third year running the Quakers group in Alton, Hampshire, have chosen to donate their December collections to Mitrofanoff Support.

Thanks to their kindness, we have benefitted by almost £500 over the last three years!

Three sisters who attend the local group – Polly, Fran and Lowenna Yates – suggested us as the charity to collect for after one of their friends underwent the Mitrofanoff procedure a few years ago. Last Christmas they put together a wonderful display (pictured) to adorn the Meeting House, explaining what our charity does.

Scarlett Swindale is 9 years old and recently decided that she would give up chocolate for a month to raise money for Mitrofanoff Support. The charity has supported her best friend who has had the operation.

Scarlett asked friends and family to sponsor her and she did so well to raise £125. She said the hardest part was when other people were eating chocolate around her, such as the time chocolate pudding was on the menu at school! Moments like this were very difficult and often made her want to give in...but she didn’t!

Scarlett’s favourite treats are Hershey’s chocolate and Oreo biscuits, but her first chocolate treat after the month was a chocolate donut.

Alton Friends Meeting House is the second oldest purposebuilt Meeting House in the world that is still in use today. It was built in Church Street in 1672 at a cost of £204.

Tough times for the charity sector The National Council for Voluntary Organisations (NCVO) estimates that the UK charity sector will lose £4 billion in income as a result of the Covid-19 pandemic.

Mitrofanoff Support has had to postpone its largest event, the Charity Ball & Fundraiser at the Runnymede Hotel in June, to next year. In addition, we have recently heard that the Ride London 100 mile cycle event has also been cancelled.

If you have any ideas for fundraising events please contact info@mitrofanoffsupport.org.uk and we would love to help you organise and promote your idea.

14 | Issue 14 | Summer 2020

www.mitrofanoffsupport.org.uk

Dates For Your Diary – Provisional!

One of the many consequences of the Covid-19 pandemic has been the inability to plan with any degree of certainty for the future. We thought long and hard whether to postpone our Patient Education Day in Cambridge on 7 March 2020 before finally deciding to do so the week before.

It was a difficult decision, with the World Health Organisation yet to declare a pandemic, the country not officially in lockdown at that stage, and with major sporting events still going ahead.

However, hindsight has shown that it would have been foolish to proceed, and as a medical charity we have to be cautious on behalf of our members, volunteers and sponsors.

The decision to then postpone the Charity Ball & Fundraiser was a clearer one, although again not taken lightly. It is the main fundraiser in our calendar, but safety has to be prioritised over money. Luckily, both venues are available on similar dates next year so we are hoping these are postponements rather than cancellations.

The situation is less clear for our Patient Education Day in London in September, but we must remain optimistic and proceed on the basis that this shall be going ahead as planned.

Please bear in mind though that all the dates that follow are provisional at this stage and we shall provide updates via the website, email and social media.

Patient Education Days Saturday 26 September 2020 Hallam Conference Centre, London

We return to the scene of our 2019 success! Meet others who have a Mitrofanoff, listen to presentations from medical experts and patients, sample products and take part in small breakout groups. Children, teenagers and healthcare professionals are welcome.

Saturday 6 March 2021

Wellcome Genome Campus near Cambridge

We have never been to East Anglia before and this renowned venue has excellent transport links – just minutes from the M11 and with train options of Great Chesterford (2 miles) or Cambridge (10 miles). On site accommodation is available for those travelling from further afield.

Charity Ball & Fundraiser Saturday 12 June 2021

Runnymede-on-Thames Hotel, Egham, Surrey A ‘feel good’ black tie event that helps raise funds for the charity at the same time. Your ticket will include a three-course meal, half a bottle of wine, tea & coffee, raffle, auction, games, and dancing to a live band.

The previous Ball raised an incredible sum for the charity, due largely to the wonderful auction items we were able to offer, including a session in a flight simulator, tickets for sporting events, a tour of a radio station and work experience. If you or anyone you know could help us with the auction please contact Jo at legal@mitrofanoffsupport.org.uk. www.mitrofanoffsupport.org.uk

Issue 14 | Summer 2020 | 15

Flexicare Medical Ltd. Cynon Valley Business Park, Mountain Ash, CF45 4ER +44 (0)1443 471570 enquiries@flexicare.com +44 (0)1443 474222

www.mitrofanoffsupport.org.uk

Flexicare Medical Ltd. Cynon Valley Business Park, Mountain Ash, CF45 4ER +44 (0)1443 471570 enquiries@flexicare.com +44 (0)1443 474222 Issue 14 | Summer 2020 | 17

Ken Edwards Update Stoma Friendly Society Can I start by saying what an extraordinary time we are living in at present It almost feels surreal, like something from a Sci-Fi movie , but it is real and we must take care and stay safe. It will end and we shall go back to meeting again, although I feel it will be sometime before what we knew as normal will return.

I have been in touch with a number of suppliers and stock is normal so please do not over order. It may take a day or so longer to be delivered , but just order what you need. They are doing a wonderful job to keep us supplied with all our needs even though a number are working from home.

I have continued to keep in close contact with Colostomy UK who are becoming Champions of Accessible Travel. I met with Libby Herbert, their CEO, just before lockdown in Bournemouth where she had been training staff to make travel more accessible for those with hidden disabilities. She is now actively involved with the following airports across the UK: Birmingham, Bournemouth, Cardiff, Edinburgh, Gatwick, Heathrow, Luton, Manchester, and Stansted.

I think it will be sometime before we go travelling again, but a few things it may be useful to know: • Ask the airline in advance if you can take extra hand luggage • Check in as early as possible to secure a preferred seat • Contact the airport to get your sunflower lanyard The use of the sunflower lanyard is growing. Not only is it recognised at airports but also now at Marks & Spencer, Primark, Tesco, Sainsbury, and various parts of public transport, to name a few.

Talking during this time is especially important, whether with friends on the phone, Skype or Zoom. There is also some useful help and advice on company websites so it is well worth looking them up.

Stay Safe. Stay Alert,

Ken Edwards Partnership Liaison

Aled Griffiths Children’s Ambassador Life In Lockdown Hello everyone, I hope that you are all well and managing to look after yourselves during these strange times.

Like everyone else my world was so different only a few months ago. In February I received my provisional driving license and had started driving lessons in the hope that I could pass before my 17th birthday. I managed 3 lessons before the lockdown happened and now it seems I will be lucky to pass before I’m 18.

When the school closed we had a text from them saying that they were closing immediately which was quite sad as we didn’t have a ‘final’ day and our chance to say goodbye was taken away. I have managed to keep in touch with some of my friends and we often chat on social media. Hopefully I will see more of my friends when we start sixth form in September.

When the school’s first closed I was quite pleased….no more school yeah, but oh no, I have continued to do some schoolwork as my school have been really kind and set loads of tasks . This year was my GCSE year and, as I write this piece, I should have been sitting my exams but will now receive my predicted results instead.

Not sitting the exams may seem an easy way to receive the results but it is also a disappointment as I couldn’t show the examiners my knowledge after all my revision. However, if my results aren’t what I need then I will have a chance to sit the exams later in the year.

18 | Issue 14 | Summer 2020

The lockdown has been weird. I’ve been doing what I can to keep busy - bingeing TV shows and movies, playing on my PlayStation, etc. I have even continued to practice my shooting. We set up a range in the hall and, using a shooting simulator (which is super accurate), managed to enter a competition….and win, which was a nice surprise!

The last few weeks have been tough though. Over the last couple of years my Grandma has been in and out of hospital with chest infections so it wasn’t a surprise when she was admitted a couple of weeks ago. Sadly, things deteriorated and we were told she was very poorly, but because of the lockdown we couldn’t travel the 600-mile round trip to see her.

This was really tough, especially for my Mum. On the 21st May the infection took its toll and my Grandma passed away. She was a super Grandma who was loved by everyone and I will miss her dearly. Love you loads Grandma xxx Stay safe everyone.

Aled xx www.mitrofanoffsupport.org.uk

www.mitrofanoffsupport.org.uk

Issue 14 | Summer 2020 | 19

Puzzles Answers The Camel Problem Since there are 3000 bananas and the camel can only carry 1,000 bananas, it will have to make five trips to carry them all to a point in between (forwards, back, forwards, back, and forwards). It is efficient to do this until the camel has eaten 1,000 bananas, so that from the new ‘starting point’ somewhere in the desert there are 2,000 left which can be transported in two loads. 5x = 1000 so x = 200. In other words:

•

we are now 5331/3km into our journey with 1,000 bananas left (3331/3 + 6662/3)

On the final trip, travel the remaining 4672/3km with the last load of 1,000 bananas, leaving you with 5331/3 bananas.

Quiz

5.

we are now 200km into the journey with 2,000 bananas left (600 + 600 + 800).

•

Nissan Qashqai (UK new car sales in 2019 by make and model)

4.

for the last batch of 1,000 bananas you do not have to return to the start, so the camel only eats 200 not 400

•

Instagram (social media platforms by users in 2019)

3.

do the same again

•

George VI (British monarchs)

2.

travel 200km forwards and drop 600 bananas, then go back to the start (the camel having eaten 400 bananas)

•

The Half-Blood Prince (books in the Harry Potter series)

1.

Now we have 2000 bananas, using the same logic we can move bananas in three trips (forwards, backwards, forwards) until left with just 1,000. 3x = 1000 so x = 3331/3. In other words:

travel 3331/3km forwards

•

travel 3331/3km forwards and drop 3331/3 bananas, then go back for the second batch of 1,000 (the camel having eaten 6662/3)

•

Saturn (planets from the Sun)

7.

The Angel Islington (squares on a standard UK Monopoly board)

6.

Diamond (wedding anniversaries every 10 years)

Co-Op (UK supermarkets by sales in January 2020)

9.

The Germans (episodes of Fawlty Towers, series one)

8.

10. E (the last letter of months of the year)

It features an interview with our very own Dan Wood and Renee Holmes, discussing the history of the Mitrofanoff procedure, what we do as a charity and what we would like to do in the

Rare Revolution has a mission to bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community. They publish a quarterly magazine and have asked to feature Mitrofanoff Support in the ‘charity spotlight’ of their next edition, out in July.

The organisation also has a dedicated youth platform, empowering children and young people to have their RARE voices heard and supporting them with a structure of mentoring and work experience. Some of our young members have joined the 2020 programme and if you would like to get your voice heard please get in touch with them at editor@ raverevolutionmagazine.com. future. You can subscribe for free and receive the magazine straight to your inbox at rarerevolutionmagazine.com.

Rare Revolution

Collaborative Work with Hollister

My experience when working as a Paediatric Urology / Stoma Nurse was that Hollister were supportive to enhance the care of children with bladder and bowel conditions. Over 10 years ago we worked together to produce a video about the Antegrade Continence Enema (ACE) procedure to enable children and families considering this operation to be able to receive accurate and realistic information around the procedure.

We also updated the video 5 years ago and again with the support of Hollister this was achieved.

The representatives from Hollister coming into the hospital maintained and worked within professional boundaries to ensure there was no cohesion or pressure about using certain products that they produce. Clear, informative and scientific information would be shared about products, instructions on their use and how some catheters or stoma products may be used to promote dignity and improved quality of life for children experiencing bladder and bowel incontinence and surgery.

The most recent experience I have had working with Hollister is in my new role working for a charity, I contacted Hollister to see if they would work in partnership and help set up a Fun Day Event for children and families. Hollister was instrumental in the day being successful. There was an amazing turn out and informative workshops. Information for children was incorporated into play through equipment displayed on tables and specific colouring in sheets and activities, around bowel management, catheterisation and hydrocehalus, this enabled all of the children to engage with each other and talk about their medical conditions. There were presentations for the adults too and an opportunity to network with other families and build friendships. Parents gave excellent feedback, families said that the event gave them an opportunity to meet other families and children with similar conditions to their child. A parent approached me and said this was the first time their child had the opportunity to build friendships with other children with Spina Bifida. The children clearly had an amazing time and parents were so thankful for the opportunity. There was the opportunity to look at Hollister products, the families commented they had also found this beneficial and useful to be able to compare different types of catheters.

Mary Vallely Support Development Worker Shine Charity Northern Region

20 | Issue 14 | Summer 2020

www.mitrofanoffsupport.org.uk

Holl

Original

NEW

Improved

A 50%* smaller protective tip, the same 100% No Touch Protection New design features: • 50%* smaller and more ergonomically shaped protective tip, for a more comfortable insertion • Transparent protective tip to aid visualisation • New easy-to-open and easy-to-empty collection bag for cleaner handling (applies to VaPro Plus Pocket catheters only) • More discreet packaging design • Less waste as a result of new design

Find out more by visiting www.hollister.co.uk/newvapro or contact Hollister at Email: samples.uk@hollister.com Scan to visit website

VaPro Pocket™ No Touch Intermittent Catheter

VaPro Plus Pocket™ No Touch Intermittent Catheter

Tel: 0800 521 377

Prior to use, be sure to read the Instructions for Use for information regarding Intended Use, Contraindications, Warnings, Precautions, and Instructions. Rx Only.

The Hollister Logo, VaPro Pocket, VaPro Plus Pocket are trademarks of Hollister Incorporated.

www.mitrofanoffsupport.org.uk

Hollister BJN Ad A4 April 2020.indd 1

Issue 14 | Summer 2020 | 21

28/04/2020 16:17

oc

Puzzles Page

(answers on page 19)

The Camel Problem Following the success of our week of Puzzles & Quizzes (still available on the News section of the website) we now present a problem which perhaps requires some more in-depth analysis and extended thought.

travels. What is the maximum number of bananas that can be transferred to the destination using only the camel?

A person has 3000 bananas and a camel. The person wants to transport the maximum number of bananas to a destination which is 1000 km away, using only the camel as a mode of transportation. The camel cannot carry more than 1000 bananas at a time and eats one banana for every km it

• bananas can be left at any point along the way and will still be there on your return • the camel eats one banana per km whether going towards the destination or away • the camel will not move if it runs out of bananas to eat

100

200

300

400

You can assume that

500

600

700

800

900

1000

Quiz – Find the next in each sequence: 1. The Philosopher’s Stone, The Chamber of Secrets, The Prisoner of Azkaban, The Goblet of Fire, The Order of the Phoenix,

1.

2. William IV, Victoria, Edward VII, George V, Edward VIII,

2.

3. (2019) Facebook, YouTube, WhatsApp, Messenger, WeChat,

3.

4. (2019) Ford Fiesta, VW Golf, Ford Focus, Vauxhall Corsa, Mercedes A-Class,

4.

5. Tin, Porcelain, Pearl, Ruby, Gold,

5.

6. Old Kent Road, Community Chest, Whitechapel Road, Income Tax, Kings Cross Station,

6.

7. Mercury, Venus, Earth, Mars, Jupiter,

7.

8. A Touch Of Class, The Builders, The Wedding Party, The Hotel Inspectors, Gourmet Night,

8.

9. (January 2020) Tesco, Sainsburys, Asda, Morrisons, Aldi,

9.

10. Y, Y, H, L, Y,

10.

22 | Issue 14 | Summer 2020

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 M151.

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

Issue 14 | Summer 2020 | 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