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ISSUE 08 T F SPRING U matters 2019 NEWS AND VIEWS FROM THE UROLOGY FOUNDATION A surgical revolution Experience: surviving cancer in both kidneys Powering prostate cancer recovery through exercise Ending the suffering caused by urology disease theurologyfoundation.org TUFmatters ISSUE 08 | theurologyfoundation.org contents welcome to 03 How do we end the TUF matters suffering? 04 The latest TUF News 06 Tackling prostate cancer Hello and welcome to one marathon at a time TUF matters. Surviving cancer in both 08 kidneys The Urology Foundation has headed into 2019 with huge enthusiasm following a year of exciting moments and great progress. 10 A surgical revolution 2018 saw us invest over £360,000 into research, it saw us train 22 new urologists to perform robotic surgery, launch a new campaign Taking kidney stone to fight testicular cancer (p.18), and we had more people than ever 12 treatment to new levels before learn about their urology health on our website (120,000 people in 2018, compared to 7,000 in 2017). Battling an ocean for TUF 13 On top of this, we hosted the most successful Urology Awareness Month ever, with a digital campaign led by urology patients, Powering prostate cancer 14 articles in the Huffington Post and The Guardian, radio interviews recovery through exercise that reached just under 5 million people, and support from the wonderful Stephen Fry on Twitter. Spotlight on fundraising 16 All of this, as well as our refined strategy (p.3), has provided us with a huge momentum as we have headed into 2019. Taking the power back: 18 Testicular Cancer I’d also like to take a moment to thank a number of our trustees who have reached the end of their tenure in office. Roger Plail Fundraising: Where to start stepped down in late 2018, as well as Christopher Smith, our 19 Treasurer, and in 2019 John Tiner, our excellent Chair of Trustees, will chair his final TUF meeting. My thanks to each of these gentlemen for all they’ve done for TUF and urology patients. They have been excellent advocates and trustees and I am personally grateful for all their support. I’d like to The Urology Foundation also extend a warm welcome to our incoming Chair, Paul Fletcher, 1-2 St Andrew’s Hill and our new Treasurer, Angela Daniel, both of whom make fine London EC4V 5BY additions to our Board of Trustees. t: 020 7713 9538 e: [email protected] With warmest wishes w: theurologyfoundation.org A member of Louise de Winter, Chief Executive 02 | Front cover image: Mr Ravi Barod and his surgical team TUFmatters theurologyfoundation.org | ISSUE 08 How do we end the suffering? As with any Our goal has not changed since our inception in 1995, and nor will it change any time soon. What has evolved, however, organisation, The is how we seek to reach our goal. Urology Foundation From 2019, our goal will be achieved only by work that fits into one of these three categories: is in a state of Prevention: ensuring the public know constant evolution about the signs and symptoms of urology disease and ensuring that no one feels too as we look to most embarrassed to talk about their health. effectively achieve Treatment: equipping doctors and nurses with the latest skills and knowledge, our goal of ending and sending them to the front lines with everything they need to offer patients the the suffering caused best treatment the world has to offer. by urology disease Cures: investing in the best and brightest and save lives. researchers in the UK and Ireland, so they can find new ways to treat and ultimately cure these devastating cancers and conditions. By concentrating our work within these three areas, we believe that we will bring change to patients faster than ever before. To complement this latest evolution in the life of The Urology Foundation, we are happy to announce that Paul Fletcher will be taking over as Chair of The Urology Foundation when John steps down. With a background of steering big businesses to big successes, Paul is an excellent addition to our board as Chair. Paul has been a supporter of The Urology Foundation for several years, having taken part in numerous cycling fundraisers. Having had prostate cancer himself, Paul knows You can help us achieve our what urology disease can mean for families across the country. aims and together we will end Under Paul’s leadership, and with our new strategy, we are the suffering caused by excited to begin 2019 and embrace all the opportunities it urology disease. brings to end the suffering caused by urology disease and save lives. | 03 TUFmatters ISSUE 08 | theurologyfoundation.org Ending the Here is a little look at where else your money has gone. NICHOLAS BULLOCK suffering European Cancer Stem Cell Research Institute, caused by Cardiff University Nicholas’ research is focused on aggressive forms of prostate cancer, particularly on treatment for prostate urology disease cancers that have metastasised, meaning the cancer has spread to other parts of the body and is more deadly. RESEARCH There are currently a number of successful treatments for men with prostate cancers that haven’t spread throughout SCHOLARSHIP the body, but the options for men with cancers that have spread are limited. Nicholas is looking at one of our body’s GRANTS natural mechanisms for repairing damaged DNA. This mechanism relies on a protein that is known as PARP, which In 2018 The Urology repairs cancer cells. Nicholas hopes to explore whether PARP inhibitors could stop the cancer cells being repaired Foundation funded more and provide new treatments for those with prostate cancer. vital research to the tune Nicholas’ research has been supported by the John Black of £200,000. In our last Charitable Foundation, who fund research into prostate newsletter we told you about cancer. David Eldred-Evans, who is looking at new screening PROFESSOR TOBY JENKINS University of Bath opportunities for prostate cancer, and Pramit Khetrapal, Toby was awarded a small research project grant in December 2018. Toby’s research is looking for a new who is researching how method of detecting catheter-associated UTIs in patients. surgeons can monitor Around 40% of infections acquired in hospital are as a patients once they have result of having a catheter and these infections increase hospital stays for anywhere between half a day and five returned home. days and cause serious health risk from catheter blockage, which can cause kidney damage and even death. If you need to use a catheter, you’ll most likely be given a leg bag, which is where the urine will go. Toby is looking at introducing a small capsule to this leg bag. In the event of a possible UTI, this capsule will release a bright green dye that can act as an early warning of catheter blockage, allowing the catheter to be changed before damage occurs. It’s hoped that this solution will dramatically reduce complications with UTIs as a result of having a catheter. 04 | TUFmatters theurologyfoundation.org | ISSUE 08 The Urology Nurse of Online health the Year clinics This year we are providing three new online clinics on the topics of female urological issues, penile health, and kidney issues. These online clinics are run in conjunction with talkhealth and provide members of the public the opportunity to ask questions of medical experts. So, if you have any questions on the above issues, please keep an eye out on our website for details. We want your stories In 2020, TUF is turning 25 years old. To celebrate this milestone Ms Helen Johnson, of Christie Hospital in we would like to hear your Manchester, has won The Urology Foundation and stories about The Urology British Association of Urological Nurses’ ‘Urology Foundation. Nurse of the Year’ award at the Conference Were you operated on by a TUF-trained of the British Association of Urological Nurses surgeon? Perhaps you are the TUF- in Bournemouth. Helen was nominated by her trained surgeon. Maybe you received manager, Jane Booker, for her contribution funding for your research, or have cycled all over the world to raise money to working with groups across Manchester to for us. Have you been part of a TUF improve the patient experience for prostate fundraising evening? Maybe you’ve only cancer patients in the city. just heard of us. You are an important part of The Urology Foundation. Helen saw that prostate cancer patients in Manchester were each having a very different experience of Whatever your story, we’d love to prostate cancer treatment because they were each hear from you. If you would like to share your story as part of our meeting different GPs, consultants, and nurses. Helen 25 year anniversary celebrations and her small team have been working to create one call Sayara or Tim on standard path for patients so that they won’t receive 020 7713 9538 or email mixed messages. She wants to make Manchester the [email protected] gold standard for prostate cancer after care. | 05 TUFmatters ISSUE 08 | theurologyfoundation.org Tackling prostate cancer one marathon at a time In 2010, Tom’s dad was Tom Maples’ dad, John, had a very aggressive strain of prostate cancer that spread very quickly. Now, diagnosed with prostate 6 years on from his dad’s death, Tom is taking on a cancer. Tom and his mum huge challenge in his honour. thought they would have In April I’m doing the Marathon des Sables, which will see another 10 years with him. me run 150 miles across the Sahara Desert in under a week.

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