I had the first indications of bladder cancer in February 2011 and had the diagnosis confirmed early March of that year. I had my bladder removed at the Royal Hallamshire Hospital in Sheffield on 3rd June 2011.Prior to this I had benefited from good health and since the operation I have had no further medical issues so now enjoying retirement. I became a member of the Sheffield Branch committee and subsequently co opted on to the NEC as members rep in November 2013. I believe the Association plays an important role in representing urostomy patients and I certainly found the Association, particularly the journal and the referral system, invaluable when I was first diagnosed. Since joining the NEC I have enjoyed representing the Association at Open Days and standing in for Hazel at meetings when she was otherwise engaged. My 41 year career has been spent in administration with 23 years in the Coal Industry before its demise in the early 90’s. During my time with the National Coal Board I held various positions from colliery Chief Clerk to Company Secretary of a wholly owned subsidiary company. I was seconded out at one stage for 3 years to run a trade association promoting British mining equipment around the world. In 1993 that I set up a small company to develop software. We grew that company to become the UK’s leading supplier of Temporary Staffing software to the NHS. So I have had 18 years of experience with the NHS at various levels.
I have been the National Secretary of the Association since 2002, having been a member of the National Executive Committee as Young Person’s Adviser and Members’ Representative for several years before that. I had a urostomy operation when I was eight years old, as a result of a road-traffic accident, so I have grown up with it. It doesn’t stop me working (I am the Association’s only full-time employee, and prior to this I worked as a Secretary for several different companies) or playing. When I’m not working, I enjoy walking, cycling, ballroom dancing and doing cross-stitch. Having been a horse rider in the past, I have recently taken up carriage-driving, and am really enjoying learning this quite physical sport and helping out at competitive events. I hope to be able to get my own pony at some point and even perhaps take part in some of the competitions I am currently helping out at. Working for the Association is very rewarding, and I hope that I can pass some of my experience of living with a urinary diversion on to others, and maybe encourage people not to be afraid to continue hobbies they enjoyed before surgery, or even to try something new. The Association is here to help, and I am happy to hear from members and non-members alike.
My wife Toni had a urostomy in 1992, following a series of major abdominal major operations that took her very close to death and left her with few options. We both will be eternally grateful for the help that the Urostomy Association has been able to give to her, both in making the decision as to whether to have a urostomy and in the years that have followed. Over the years we both became increasingly involved in the running of UA, first with the Manchester and North West Branch, the closest to where we lived in Cheshire at that time, and later with Stafford Branch, when we moved to Telford following my retirement from full time employment in 2003. It was not many years after this move that my wife and I recognised the need for a local branch of UA, and we founded the Shropshire and Mid Wales Branch, of which which Toni is the Branch Secretary, and which now has members travelling to meetings from places as far apart as Anglesey in the north and Hereford in the south. Time and again, as I help Toni by representing UA at various exhibitions and open days, we meet someone who is hugely relieved to talk to someone understands their concerns, who knows how they feel, and can help them. When I retired, I was asked to consider becoming the National Fundraiser, a post that had been vacant for some considerable time. With time on my hands, I was pleased to take on this role, and with the continued support of our members and others, our fundraising has been reasonably successful year on year ever since. All of us know how important it is to continue the work of the Urostomy Association, not just in supporting our existing members, but also in ensuring that we will always be there to help others in the future to come to terms with their condition and to live as normal a life as possible.
Areas: Cambridge, London South West, Surrey
Jim was born in 1945 in Carlow Ireland. An initial degree in classics(1963) was followed by postgraduate degrees in Psychology and management specialising in autism. However, he spent the next 20 + years running training programmes and from 1992 -2007 was head of Psychology at a college in Surrey. Since then he has continued to run courses especially on assertiveness, anti bullying, preparing for retirement and management training, in addition to consultancy work – his most recent work was in Goa, India. In his spare time he does after dinner speeches and enjoys walking cycling and cruising on Old father Thames with his wife Norma. He was diagnosed in May 2010 and was operated on twice in June /July the same year, and was elected chairman of Surrey branch in 2011. He now wants to see much better counseling for individuals who suddenly are given a diagnosis and feel both shocked, terrified and totally confused. This is one area where he thinks the association must continue to play a key role, and he would like to see many more people joining the association believing that there is overwhelming evidence that socializing and being positive is very beneficial to health. He believes that he always learns something new at the meetings, and is very impressed at how people cope after their operation. He has made many new friends from fellow sufferers, and his two mantras are” Always look on the bright side” and “for health’s sake, get involved”
My name is David Simonds I have had my stoma since the 18th March 2009. I am a bus driver which I have been doing for the last 10 years and for the last 14 months I have also become an ambulance care assistant for E-Zec. I joined the Urostomy Association in 2009 by speaking to Doreen Littlefield who gave me so much help and advice which I so needed in the early days and help from other members and Hazel. So with all the changes going on with NHS etc I wish to give my time and support to help new and existing members of the Urostomy Association to the best of my ability.
Areas: East Anglia, Manchester & North West, Sheffield & District, Yorkshire & Humberside
My name is Julie Varley. I have had my stoma since 2003. The stoma formation was necessary after more conservative treatments failed. I joined the association a couple of months prior to surgery. The Yorkshire and Humberside branch members helped me to come to the decision to agree to surgery. Since having my surgery there has been ups and downs but whatever difficulties big or small the Urostomy Association, its members, family and friends have always been there to give me support and understanding. For me the biggest eye opener was when I attended my first NAGM and realised I was not alone and made some firm friendships which still stand today. I now feel I am in a position to give something back. I am looking forward to working with everyone on the NEC and more importantly getting involved at branch level with members. Due to other health problems I do not work at present but do volunteer at the local hospice in their Day Therapy Unit. This I feel is a privilege whether it be making drinks, serving dinner, chatting to the patients or doing arts and crafts. I am on the committee at the Sheffield and District Branch as Fundraiser, I am also visitor trained and I am part of the admin team on the UA Facebook page.
Diane is a Clinical Nurse Specialist in stoma care at the Royal Hallamshire Hospital in Sheffield, where she specialises in urology. She has worked within the speciality of stoma care and urology for over 20years, working in the private sector prior to her current role. Diane had an article published in the British Journal of Nursing Magazine on the removal of ureteric stents post – cystectomy. This research also won Diane the Urostomy Association award for a completed piece of research into urinary diversion, given at the Association of Stoma Care Nurses Conference 2015. Diane was a finalist in the British Journal of Nursing Stoma Care Awards 2016. As well as being one of the team of national Nursing Advisers, Diane is an active member of the Sheffield and District Branch of the Urostomy Association. She has also involved on the national committee looking at clinical guidelines. Diane says that she feels very privileged to be part of the Urostomy Association, and get great job satisfaction being part of her patients’ bladder journey, assisting them from diagnosis through to discharge and beyond.