EMBARGOED UNTIL 00.01 HOURS WEDNESDAY 11 NOVEMBER 2009 ‘THEY TOOK ALL YOUR DIGNITY AWAY’ Two in-depth studies of continence care of older people in hospitals and nursing homes show that older people are not always treated with dignity or able to use toilet facilities when needed. The studies were carried out by the University of Kent and the RCP’s Clinical Effectiveness and Evaluation Unit (CEEu), and supported by the Royal College of Physicians and the British Geriatrics Society. The results have been used to inform the next round of the National Audit of Continence Care, which begins this week. Urinary incontinence affects a quarter of older people aged 65+ and up to 60% of people in long term care. Faecal incontinence occurs in up to 25% of people in institutional care. Both cause much individual distress. For the first study, researchers interviewed 33 people between the ages of 68 and 89 over a four-month period about continence issues and how these affected their dignity. Patients were interviewed in depth about various aspects of care – dignity; coping strategies; professional care; communication; personal care; and choice and privacy. The results showed a huge variation in the quality of care: - Participants often had to wait to use the toilet despite buzzing and calling for help. At times they were left for long periods on the commode which was uncomfortable and painful - Participants were not always cleaned following toileting which led to distress and loss of dignity - Participants said that incontinence is a threat to dignity as it is a stigmatising condition with social consequences. Concealing incontinence and being reluctant to admit it meant that people were unlikely to seek help from professionals and friends - Patients were reluctant to criticise the care they had received initially, but on probing revealed that they had not always had the best care in relation to friendliness, rushed manner and handling - High staff turnover made it difficult for participants, particularly those who had sensory difficulties, to develop relationships - Ineffective communication increased the likelihood of misunderstanding and older people feeling isolated and left out - Some participants felt that there was little attention given to their individual needs and that they were fitted around a timetable Another in depth study observing continence care for 10 patients over a period of days gave very similar results, with concerns being raised over dignity, privacy, cleanliness and hand washing facilities. Anonymised quotes are included in the second study: “I mean some people have to be hoisted to the toilet, well I’d hate that. That’s what happened when I went into xxxxx hospital for the two weeks, they hoisted me everywhere and boy did I get sick and tired of that. …..They took all your dignity away. Well as they say you’ve got no dignity left, I said ‘No, all the dignity’s gone, stand up, pull your pants down, pull them up when you get up.” (NH3:4:v3:p6) (On mobility problems and having a choice between using a bedpan in bed which was uncomfortable because the hard edge cut his bottom, or being hoisted onto it which was better): “No. There wouldn’t be a choice. The reason is that the hoist is in constant use with other patients and trying to get hold of it is very difficult and I think if you wanted the bed pan, invariably that means that you need to go so they’re quite quick with it and they don’t hang about, they might take 5 minutes or maybe 10 but there is not a choice, you only get the hoist if you have already got it and you make the opportunity of it. It’s not a toilet requisite if you like, its not, we’ll hoist him out and he can go to the toilet, that doesn’t happen.” (H2:15:V1:p3). Both studies show the need for care that reflects the patient’s personal preferences rather than prescriptive clinical guidelines. The findings will inform the development of reflective guidelines for practitioners to support dignity in continence care. The National Audit of Continence Care is a key means of improving standards of continence care in primary care, acute hospitals, mental health care and care homes. The findings have previously demonstrated an improvement in quality of care with repeated audit. The audit enables all participating care providers to compare the quality of their continence care to evidence based criteria. Dr Adrian Wagg, Clinical Director of the National Audit of Continence Care, said: “It is clear that there is still a great deal of room for improvement in care for people with incontinence. The National Audit will show us the extent to which the current NICE guidelines are being implemented, enable providers to improve care, and should lead to improvement in the way the many people who suffer with bladder or bowel problems are managed.” Jackie Morris, British Geriatrics Society Dignity Lead, said: “It is unacceptable for older people not to receive dignified continence care. We have produced a set of standards and decision aids aimed at helping healthcare professionals to ensure patients and residents in long-term care have their toileting needs met with privacy and dignity. These materials are part of our dignity campaign ‘Behind Closed Doors’ and can be downloaded from our website.” Notes to Editors Privacy and Dignity in Continence Care Project, Reports of Phases 1 and 2, will be posted on the RCP website on 11 November 2009. For executive summaries or full versions of the reports and to arrange interviews please contact: RCP: Linda Cuthbertson, 020 3075 1254/07748 777919, linda.cuthbertson@rcplondon.ac.uk BGS: Iona-Jane Harris T: 020 7608 8573/07766 227724, ionajaneharris@bgs.org.uk The Royal College of Physicians of London provides a huge range of services to its 20,000 Members and Fellows and other medical professionals. These include delivering examinations, training courses, continuous professional development and conferences; undertaking clinical audits; publishing newsletters, guidelines and books through to maintaining the College's historical collections. It also leads medical debate, and lobbies and advises government and other decision-makers on behalf of its members. The British Geriatrics Society (BGS) <http://www.bgs.org.uk/index.htm> is a membership association of doctors, nurses, therapists, scientists and others with a particular interest in the care of the frail older person and in promoting better health in old age. The BGS ‘Behind Closed Doors’ campaign produced a set of standards, a decision aid for using the toilet in any care setting, an audit to be undertaken by lay people and best practice guidance. Visit: http://www.bgs.org.uk/campaigns/dignity.htm