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Media Release

Date: 9 July 2014

RUH tackles the taboo of incontinence

Incontinence can be a taboo subject for many people, and patients are often too embarrassed to talk about their needs upon being admitted to hospital. However, if a patient's continence needs are not handled professionally and with care and good practice, it can seriously undermine their dignity.

The RUH believes that more can be done to break down the taboo surrounding incontinence, and to give people the confidence to talk more openly about it – not just with doctors and health professionals but also with friends and family.

A recent 'focus event' was held at the RUH to highlight best practice in providing patients with continence support and to raise awareness of what it is like to live with incontinence.

Given the sensitive nature of the subject, staff at the event were privileged to hear from guest speaker Tara Willson. Tara lives with double incontinence, but manages her condition and is able to work full time and lead a full and active life. Recipient of the Continence Patient Champion award at this year's National Continence Care Awards, Tara is passionate about talking to health care professionals because she believes they need to understand the patient's point of view in order to empathise and provide optimum care.

Tara said: "I began speaking about my incontinence about eight years ago, and this has given me more confidence and greatly boosted my self-esteem. Incontinence could be seen as a barrier to living and surviving independently. However I won't let it beat me."

Despite her positive approach to managing the condition, Tara also gave a very honest and frank account of what living with incontinence means: "Having a 'hidden disability' is physically, emotionally and financially draining. On a day to day basis, I struggle emotionally with managing the unpredictability of being doubly incontinent.

"I work hard to appear a highly professional working woman who doesn't smell, doesn't rustle like a Christmas present with the noise from the pads or leave a trail of wet seats or have stained clothes. Travelling around with several catheters, spare pads, and spare clothes all means careful planning, thinking about the type of handbag I may need and trying not to look conspicuous. I have felt a burden, a failure, been humiliated and extremely frightened for my future. But sensitivity and the right attitude is key to it all. So daily life revolves around knowing where the nearest toilet is. This means working at it every day to maintain dignity and respect for myself as a woman."

Tara was also keen to break down the taboo of speaking about incontinence, not just for those living with incontinence but also amongst those working in the health care profession: "Speaking openly about incontinence is difficult – as it's such a taboo subject many people are just too embarrassed to talk about it. This includes GPs and nurses on hospital wards. But I want to enlighten people as to what it takes to live and deal with continence issues on a daily basis."

Staff nurse, Melanie De Jaeger, who is a member of the Continence Team at the hospital and organised the focus event, said: "The Continence Team is a dynamic multi-disciplinary group that meets monthly to plan innovative initiatives to improve continence and catheter care for our patients. The team is ably supported by ward-based Continence Ambassadors who face the everyday realities of championing the needs of patients with incontinence. Eighty-five per cent of incontinence is treatable and we need to give our patients the courage to face this taboo problem.

"We hope the focus event has enhanced staff understanding of the issues – and will have inspired staff to prioritise good continence care, so that our patients' experiences at the RUH are characterised by compassion and dignity.

"Listening to Tara's personal story helped bring into sharp focus the challenges of living with incontinence. But it also served to highlight how, with good management, incontinence should not prevent someone from living life to the full. I hope Tara's story will give people who have been secretly battling with incontinence the courage to start a conversation and to seek support."

Tara very much agrees: "My advice to anyone with problems like mine is to speak to someone – the Bladder & Bowel Foundation helpline, the Samaritans, a GP counseling service, a friend or fellow patient. Don't bottle it up. If you do, it will tear you apart."

To help continue its work on delivering compassionate continence care, the RUH is looking to set up a local patient advisory group at the hospital. If you live with incontinence (or care for someone who does) and have been a patient at the hospital, we would love to hear your views – even if only anonymously. Please contact Melanie De Jaeger on: melaniedejaeger@nhs.net

The Bladder and Bowel Foundation are a charity that offers advice, support and contacts for people who live with incontinence. The foundation operates a helpline on 0845 345 0165 and more information about the foundation and about incontinence in general can be found on their website: www.bladderandbowelfoundation.org

ENDS

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