Spring 2014 Vista ‘Vision for improving continence care’ All systems are go here at B&BF HQ as we fly eagerly into another year. With a host of projects planned for the coming year we could witness one of the charity’s greatest years yet! To begin, we would like to ‘welcome’ you all to the first transformation of the new year - the launch of the B&BF newsletter ‘Vista’. Vista aims to explain who we are and what we do and to be a source of refreshing news and information on current bladder and bowel related issues. Vista replaces the B&BF Magazine which was released twice a year but Vista will be more frequent. Each issue you’ll see a collection of fascinating stories and news from the world of continence all brought to one place, for you the reader. Whether you’re a member of the public or a heath care professional, there will always be something for everyone in Vista! Company Registered at SATRA Innovation Park, Rockingham Rd, Kettering, Northants, NN16 9JH © Copyright Reserved What else? I hear you ask curiously – well there are too many new ventures to mention here in this short space – but, we will keep you updated throughout the year on the B&BF News Round Up page and of course on our website. Now, a quick look at the year just gone. 2013 saw the start of the momentum. We launched our first ever Facebook campaign on Stress Urinary Incontinence with ERIC the childrens continence charity. B&BF’s Clinical Manager Debbie Gordon, featured on a panel of clinical experts taking part in online clinics for IBS and for men’s problems. We launched a new Catheter Care Booklet and numerous factsheets and we also developed our own accredited catheterisation courses for health care professionals. We would like to take this opportunity to thank everyone who supported us in 2013; without your kind and generous support much of our work simply would not happen. Finally, all of us at B&BF hope you enjoy reading ‘Vista’ and like its format. It is different from the B&BF Magazine yes, but we are confident that you’ll find the content engaging and interesting as always. Thank You. Registered Charity No: 1085095 and a Company Limited by Guarantee No: 4125585. About B&BF Contents Click to view 3 News Roundup 6 Patient Stories 7 B&BF News Vista is produced by B&BF . B&BF is the only UK wide charity dedicated to helping people manage their continence needs as a result of either or both bladder and bowel control problems. The charity is passionate about raising awareness of these often hidden conditions and provides information and advice services for individuals, patients and health professionals. B&BF campaigns for better services, treatments and products by working with researchers, individuals and related organisations, and will work towards delivering the kind of services that meet the needs of people affected by these conditions. The following services are available: 8 Our Fundraisers • 9 Health Care News • • 11 A Bit Extra The Trustees Prof Alan Cottenden: Chairman Prof Chris Chapple Wendy Colley, OBE Jane Dixon Rob Fletcher Tim Harvey Julia Herbert Joanne Townsend The B&BF Team Robert Dixon: Chief Exec Heather Ellison: Support Services Manager Debbie Gordon: Clinical Manager Diane Jeffs: Admin Assistant Anne Shehzad: Clinical Project Assistant Jason Tate: Partnership Consultant Michelle Tysoe: Information Officer • • • Helpline: Offering confidential, clinical advice from specialist continence nurses and physiotherapists. Tel: 0845 345 0165 (24 hour answer phone). Website: Browse information on symptoms, treatments and product choice, and access information resources. Just Can’t Wait Toilet Card: A wallet sized card designed to help you gain access to toilets when you’re out and about. Individual Supporter: Register online as an individual supporter to get access to all website areas, download resources, and receive our Just Can’t Wait toilet card. Health Professional Supporter: Register online as a Health Professional supporter to gain access to the Resource Centre and Library. NHS Continence Clinic Database: Our clinic facility provides local information on NHS and private continence services. For details on local continence services please contact the B&BF office on 01536 533255. General Enquires: 01536 533255 Clinical Helpline: 0845 345 0165 Email: [email protected] Please support our work if you are not already an online supporter, please consider registering. As an online supporter you will have your own login and password which will help you gain access to all of our online resources, including ‘Vista’ & you’ll receive our Just Can’t Wait toilet card. Click here for details. News Roundup Should you get a PSA test? Making the decision to have a PSA test depends on a variety of factors. Here is some information that may help you in your decision. The PSA test is a blood test which can detect the early signs of prostate cancer. The test measures the total amount of prostate specific antigen (PSA) in your blood. PSA is a protein produced by normal cells in the prostate and also by prostate cancer cells. It is normal for all men to have a small amount of PSA in their blood. A raised PSA level may show that you have a problem with your prostate, but not necessarily prostate cancer. What can affect your PSA level? •Age • Urine infection • An enlarged prostate • Prostatitis • Prostate cancer • Medicines You can find out more about PSA tests on the NHS Choices website. Truly a Man’s best friend! A study in 2011 revealed that dogs can be trained to detect prostate cancer by smelling urine. The Belgian Malinois shepherd used in the study was trained by the clicker training method to recognise the scent of urine from men with prostate cancer. The dog completed all the runs and correctly identified the cancer samples in 30 of 33 cases. To read more of this story please go to the News Section on our website. What are the three most common prostate problems? 1.An enlarged prostate - this is the most common problem 2.Prostatitis - an inflammation or infection of the prostate 3.Prostate cancer Symptoms to look out for; • Needing to pee more often, especially at night. • Difficulty starting to urinate. • Straining or taking a long time to finish urinating. • A weak flow when you urinate. • A feeling that your bladder has not emptied properly. • Needing to rush to the toilet - you may occasionally leak before you get there. • Dribbling urine. If you are experiencing any of these problems it’s a good idea to get things checked out, even if it is just to put your mind at rest. Speak to your GP or contact our Helpline 0845 345 0165. You can also find out more in our For Men section on our website. News Roundup A nonsurgical treatment for women with Pelvic floor Dysfunction Pelvic floor dysfunction (PFD) refers to a wide range of conditions that occur when the muscles of the pelvic floor become weakened. Weak pelvic floor muscles can result in bladder and bowel problems such as incontinence, prolapse as well as pelvic pain. Both women and men can experience PFD and at any age, however it is more common in women. Women with bladder, bowel or pelvic pain symptoms could benefit from pelvic floor rehabilitation, which is a ‘work out’ for the pelvic floor muscles. Women who experience tearing after vaginal deliveries could also benefit from this. Yet many women are offered medication to treat their symptoms and are not aware that alternative treatment methods exist, even though nonsurgical options can be as good as medicine or surgery. In a study published in Female Pelvic Medicine & Reconstructive Surgery, researchers analysed data from nearly 800 women with symptoms of pelvic floor dysfunction who underwent the treatment. You can read this research in our News section on our website. How smoking can make you feel 9 yrs older! Scientists have given us many reasons not to smoke, but now, researchers from the University of Pennsylvania provide evidence that, in white women with specific genetic variations, smoking causes early signs of menopause - up to 9 years earlier than average. You can read more of this in our News section on our website. Something coming down below? If you’re feeling a sensation of ‘something coming down below’ you may have a prolapse. Prolapse is a condition in which one or more of the pelvic organs comes down or bulges into or out of the vagina. The pelvic organs consist of the uterus, bowel and bladder. Symptoms include: • A heavy dragging feeling in the vagina or lower back. • Feeling of a lump in the vagina or outside the vagina. • Urinary problems • Bowel problems such as difficulty moving the bowel or a feeling of not emptying properly. • Discomfort during sexual intercourse. If you have any of these symptoms speak to your GP or call our Helpline on 0845 345 0165. You can also read more on the Prolapse page of our website. News Roundup Did you know that smoking can cause bladder cancer ? Once again smoking and its adverse effects have been scrutinised and thanks to years of research, the links between smoking and cancer are very clear. The risk of a smoker developing bladder cancer increases with age and men are more likely to develop this form of cancer than women. If you smoke the risk is up to 4 times that of someone who has never smoked. It’s all to do with chemicals in the smoke that get into the bloodstream. The chemicals are filtered out of the blood by the kidneys and end up in the urine. When the urine is stored in the bladder, these chemicals come in contact with the bladders innermost lining. One of the common symptoms of bladder cancer is blood in the urine, which is not usually painful and can come and go. There can also be a burning feeling when you go to the toilet and you may need to go more frequently than usual or you may need to pass urine very urgently. If you have these symptoms it’s important that you go to your GP as soon as possible. How does it all work? Everybody does it, but do you know how your gut works? until now even researchers were unsure about the exact mechanisms behind a bowel movement. Well new research reveals that two sets of so-called "pacemakers" work together to create a certain rhythm, and these pacemakers use nerves and muscles to help you have a bowel movement: You can read more of this in our News section on our website. Freedigitalphotos.net Hurrah for Cranberries We’ve all heard the age old wisdom that cranberries are able to prevent a urinary tract infection – but is this actually true and does it matter what form they are consumed in? Well according to scientific research, cranberries, whether in a sauce or as a juice do help prevent UTI’s. So what about cranberry extract tablets? According to a study held in 2011, cranberry juice itself, is much better at preventing biofilm formation, the precursor of urinary tract infections, than cranberry extracts. So if you have a UTI such as cystitis, consider trying cranberries. If it works, let us know and we can feature you in our Patient Stories section. You can read more of this research here. Continence Advisor or Continence Physiotherapist, do you know who does what? Click here to find out. Patient Stories “I first remember going to the doctors about my bladder problems when I was seven. My Mum was fed up of me going to the loo and then a few seconds later demanding to go again. We were told it was nothing to worry about and I would grow out of it, but I didn’t. Emma’s story: I went to the loo around 20 times a day and got up three times at night. It disrupted everything in my life - my sleep, schoolwork and friendships. At senior school we weren’t allowed to go to the toilet during class and I was reduced to tears many times because I was literally bursting for the toilet. When the lesson ended I would run as fast as I could to the loo. If I was out with my friends I would leave them every five minutes to go. On one occasion there was the inevitable queue for the ladies so I had to pretend I was going to be sick so I could be next otherwise I would have probably wet myself. In 2008 I spent four months with Camp America working as a special needs counsellor. The first few weeks my bladder problem got worse. I thought I had an infection and drank lots of cranberry juice which made matters worse. On my return I insisted my doctor refer me to a urologist. After scanning my bladder and having a urodynamics test I was finally told I had a very overactive bladder. I simply burst into tears with relief. It wasn’t all in my mind after all and now there was a possibility I would get some help”. You can read more of Emma’s story here. Daniel’s story: Daniel shares his story of living with faecal incontinence from birth and talks about his aspirations for his European walking challenge which will see him endure a 1600+ mile walk. “I am 31 years old and was born with imperforate anus. As a baby, I underwent an emergency ileostomy followed by further surgeries to construct a rectum. However, the surgery left me incontinent of faeces, a condition I have had my entire life. I have tried several other surgeries in recent years but with no success and now use anal irrigation and drugs to help control the impact of my incontinence. Had it not been for the advertisement on the back of a toilet door at a service station stop which my fiancee saw, I would not have been encouraged to seek further help as an adult. It was through visiting the Bladder and Bowel Foundation website and following a link to a forum of others with bowel problems that I first opened up and asked others for advice and went to the doctors to discuss options I had read about.” The challenge…Daniel’s trip will see him walk the entire length of the GR 5 from Hoek van Holland to Nice in France, more than 1600 miles, along with his wife. He says “It is my intention to use my trip to raise awareness of the issues I and many other people with bladder and bowel problems face and show that it needn’t be a hidden problem. I also hope to show others like me what is achievable when you ask for help and have the support of those around you.” We will bring you more news about Daniel’s trip later in the year. B&BF News We are very proud to announce that we have developed, in partnership with the Quality Care Academy (QCA), accredited catheterisation courses and a Level 3 qualification in catheterisation for health care staff. Our Training Other continence courses we deliver in partnership with the Quality Care Academy (QCA) are as follows: • • • • Continence Bladder Continence Bowel DRE & MEF Paediatric Catheterisation Could you deliver our training? You will need to be a registered nurse, (Band 7 and above), have at least 36 months of previous clinical experience and have post graduate training in catheterisation. Welcome Welcome to Julie Marsden our new Helpline Nurse Ideally you will have delivered similar training during your career although this is not an essential requirement. The venue and candidates will be organised by QCA. You will be provided with the course content and any equipment needed to deliver the course. You will work on a self employed basis, with flexible hours and competitive rates of pay. Interested? Then we want to hear from you. Please send your CV to; Debbie Gordon, Clinical Manager. to Carlene Igbedioh our new Clinical Tutor New B&BF Fact Sheets • • • • • Penile Sheaths Bladder control after a prostate operation Medication for OAB Pelvic Floor Repair Surgery Prolapse Click here for details Study Day: Chartered Physiotherapists Promoting Continence 14th June in Kettering. Please click here for details. Clinical Tutors Required We are still looking for more Clinical Tutors to deliver our catheterisation training and other continence courses at venues across the United Kingdom. Click here for more details. Our Fundraisers For some, fundraising can seem a bit of an overwhelming task, for others they see a challenge. By showcasing our 2014 fundraising champions we hope you will find the inspiration and maybe the courage to have a go too! Don’t worry if fundraising is not your thing, you can also show your support by donating on our Fundraising Champions’ Just Giving pages. 2014 looks set to be one of our best years yet for fundraising, so we would like to say a huge thank you to all our amazing supporters below and on our website. Matt’s Virgin London Marathon April 13th 2014 Matt is running the 2014 Virgin London Marathon and has chosen B&BF as the charity he will raise money for. Matt says “I hope that I can reach my own goals while at the same time create some awareness to this problem and raise some money for the charity.” Please support Matt via his Just Giving Page Matt’s coast 2 coast challenge July 7th 2014 Matt, who was recently diagnosed with Interstitial Cystitis, is aiming to run 140 miles in 7 days across the coast to coast path from Whitehaven to Tynemouth. Matt has chosen to raise money for B&BF. Please support Matt via his Just Giving Page Charity Ball and Auction May 10th 2014 Alice Bettney is hosting a Charity Ball and Auction on May 10th 2014 to raise money and awareness for B&BF. The ball is being held at The Press Rooms Bistro in Ashford Kent and those attending will enjoy a 3 course meal, live music, an auction and a raffle. This ball is to honour Alice’s mother Sharon who passed away 4 years ago from a bowel obstruction which led to septicaemia. Please support Sharon’s Charity Ball & Auction via her Just Giving Page Health Care News Round Up Consensus review of transanal irrigation in adults A consensus group of specialists from a range of nations and disciplines who have experience in prescribing and monitoring patients using TAI worked together assimilating both the emerging literature and rapidly accruing clinical expertise. The object of the review was to provide a consensus expert review of the treatment modality for transanal irrigation (TAI). To read the results of this review please visit our Health Professional Resource Centre. NICE gives go ahead to NeoTract’s ground breaking UroLift® prostate implant Incontinence following prostate cancer surgery The Author and B&BF trustee, Wendy Colley, is a nurse with 25 years’ experience in continence care. This case study describes her personal experience of managing urinary incontinence after her husband’s radical prostatectomy for prostate cancer. Click here to read the article. We have more articles on our website within the Health Professional Resource Centre Freedigitalphotos.net Looking to further your career? How about Catheterisation Training? During April we are holding catheterisation training sessions at the following locations; - Croydon - Brighton Contact us for details. Please consider becoming a B&BF Health Professional Supporter. Find out more here. National Institute for Health and Care Excellence (NICE) has issued full guidance to the NHS in England, Wales, Scotland and Northern Ireland on insertion of prostatic urethral lift implants to treat lower urinary tract symptoms secondary to benign prostatic hyperplasia, in January 2014. For further reading of this guidance please visit the NICE website. If you have received poor care, or you know that poor care is being given somewhere, you can report it to the Care Quality Commission (CQC). The CQC would like as many people as possible to tell them about the care they or loved ones have received, or to hear from staff about their experiences of care where they work - the good as well as the bad. Click here for more. Health Care News Round Up NICE issues guidance on drugs in care homes People in care homes should have the same involvement in decisions about their treatment as patients living in their own home. NICE has produced guidance on managing medicines in care homes that applies across both health and social care. You can read this guidance here. Review of new and emerging technologies for urinary and faecal incontinence The Inaugural National Continence Care Awards The expert group on lower urinary tract symptoms (LUTS), including urinary incontinence, is delighted to be hosting the Inaugural National Continence Care Awards. Freedigitalphotos.net The Awards are organised by MHP Health with funding from Astellas Pharma Ltd and will take place in the House of Commons in May 2014. We have more articles on our website within the Health Professional Resource Centre To read more please visit our Health Professional page. If you are a health professional and would like to work with us, either by writing an article or helping with our Helpline, please contact us. 01536 533255 The review aimed to identify new and emerging health technologies, including drugs, medical devices and procedures, for the diagnosis, monitoring and management of urinary incontinence (UI) and faecal incontinence (FI) in both men and women. B&BF helped construct the in depth Horizon scanning review on new and emerging technologies for urinary and faecal incontinence. Please click here to read more. Birmingham 2014 If you have an event you would like to include in Vista please let us know. Or if you would like any B&BF literature for delegate packages we would be happy to discuss this with you. Conference and Exhibition 2014 8-9 May 2014 Hilton Birmingham Metropole Conference and Exhibition 2014 Programme highlights include: • Dementia – Mental Health Conditions and the Impact on Continence • Dementia and the Impact on Continence – A Professional’s Experience • Dementia and the Impact on Continence – A Carer’s Experience • Catheter Troubleshooting • Identifying Continence OptioNs after Stroke (ICONS) – Findings from a Randomised Controlled Trial • Measuring Outcomes in Respect of Continence Issues • Different Way of Looking at and Treating Bladders – The Social Bladder • The Cystitis and Overactive Bladder (COB) Foundation • Circumcision a Form of Male Genital Mutilation? • Female Genital Mutilation – Impact on Continence • Lower Urinary Tract Symptoms (LUTS) Quality Standards – Controversial? • Erectile Dysfunction Register Now For more information visit www.aca.uk.com or call ACA on 01506 811077 Sold out last year book early to avoid disappointment Driving Excellence in Bladder and Bowel Care A Bit Extra Visiting or going shopping in a new town? Or maybe you’re travelling abroad, wherever you go this tool will no doubt become your best friend. Bathroom Diaries .com lists public toilets in 100 countries and rates them from poor to good. You can even find out if there is baby changing, disabled access or if you have to pay a fee. The RunPee tagline says it all: Because movie theatres don’t have pause buttons. The RunPee app will give you a list of 1-to-4 moments in each movie when you can run and pee. It will tell you the best times to go to the toilet during a movie without missing the best parts. It also lets you know if there is anything extra after the end credits. A new app turns any smartphone into a portable medical diagnostic device. The Colorimetrix test analyser app allows semi-quantitative measurement of colorimetric test strips or solutions and could make monitoring conditions such as diabetes, kidney disease, and urinary tract infections much clearer and easier for both patients and doctors. 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