Inadequate and incomplete – continence care in the UK

Press Statement

The first national audit of incontinence care for older people in the UK shows widespread failure to diagnose and manage continence problems. The audit, undertaken by the Royal College of Physician’s Clinical Effectiveness and Evaluation Unit and commissioned by the Healthcare Commission, examined the quality of care for older people with urinary and faecal incontinence in primary care, secondary care and care homes in England, Wales and Northern Ireland.

The audit was based on the standards set in the National Service Framework for Older People [2001] and the Department of Health guidance “Good practice in continence services”[2000] and recorded the care of over 9,000 patients and 700 care home residents. Data were returned by 159 Trusts covering 195 hospitals, 141 Primary Care Trusts and 29 care homes.

Urinary incontinence affects some 24% of older people and 30-60% of people in institutional care. Faecal incontinence occurs in approximately 1-4% of adults and up to 25% of people in institutional care. Both cause much distress and loss of dignity for the older person.

Effective management of continence depends on a thorough assessment of the patient leading to a diagnosis. The audit found that although specialist NHS staff had good continence knowledge, patients were often not examined thoroughly or given routine assessments. Even where this had been carried out effectively, there was no guarantee that the underlying diagnosis would be found and treated – for most patients only the symptoms are managed, when in some cases there could be a cure. In addition, the audit found a lack of written policies, missing documentation, limited provision of staff training, high use of indwelling catheters in hospital settings and widespread rationing of continence pads.

The National Service Framework for Older People set the requirement that service providers should establish integrated continence services by April 2004. However, the audit indicates that there has been only limited action toward this and that provision of services remains extremely variable. The findings of the audit include:

• Only 59% of primary and 32% of secondary care sites have a written policy which covers continence care for older people
• Nearly all sites ask a screening question relating to bladder and bowel care, but only 64% of primary and 44% of secondary sites have a protocol for providing basic assessment to patients
• Integrated continence services are only present in 53/138 of primary care and 50/195 secondary care sites, and in 10 out of 27 care homes taking part in the audit. On further inspection, many of the services said to be integrated were missing vital elements
• Only 49% of secondary care trusts offer structured training on the management of continence to their staff
• Despite about 80% of services having a written policy that pads should be available on the basis of clinical need, 81% of primary care and 76% of care home services limit the maximum number of daily pads for patients
• 60% of primary and 70% of secondary care patients with bladder or bowel problems received pads as a way of managing their condition, rather than treating the underlying problem
• Less than half of patients, where it was appropriate to do so, had a documented explanation of their condition and treatment

Inadequate assessment of incontinence with an emphasis on containment rather than cure is expensive, from both a financial and health perspective. In the face of the great daily cost of containing continence, the audit indicates a missed opportunity to assess, treat and reduce the numbers of incontinent people. We feel that this audit represents a significant step in raising the profile of continence and contributing to the improvement in the quality of care for older people with bladder and bowel problems.

Dr Adrian Wagg, Chairman of the Continence Working Party, said:

“This is probably the largest audit on continence care world wide and we are extremely grateful to everyone who has participated. It shows that care for people with continence problems is patchy at best, that a cure is seldom attempted and that the single mandatory target for continence in the NSF has not been met. There is a wealth of opportunity for improvement, something that we will be attempting to encourage over the coming months”

Amanda Hutchinson, Healthcare Commission Head of Older People’s Strategy, said:

“We hope that these findings will help clinicians to deliver real improvements in continence services. It is vital that best practice is shared for all older people who need to have access to high quality services.”

Dr Judith Wardle, Director of the Continence Foundation, said:

“The Foundation is not surprised by the results of this audit. However, what the audit could not show is the level of dedication of so many of the staff involved in the treatment of this condition, which is often not a priority for anyone but themselves – and the patients. The important thing is to encourage improvement in services.”

Clive Evers, Director of Information and Education at the Alzheimers’ Society, said:

“It is shocking that incontinence care throughout the country is so appalling. There is no justification for poor incontinence management and the Alzheimer’s Society demands strong and urgent action to ensure everyone affected by incontinence receives a good level of care.

“Incontinence can be distressing and humiliating for the person concerned, and their family, and it is vital that everything possible is done to reduce this distress.

“Incontinence is not an inevitable symptom of dementia, but many people with dementia do experience it. People with dementia often experience incontinence for quite unique reasons; they may forget to go to the toilet, or be unable to find where the toilet is. It is essential that the cause of incontinence is established and a plan is put in to place as quickly as possible.

“The Alzheimer's Society's helpline often hears from people who do not feel this problem is being adequately addressed. We also hear of unacceptable practices such as pads being rationed or the quality of pads being compromised by the NHS for cost reasons.

“It is disgraceful that people are denied such basic care and that staff are not trained in how to support people who are incontinent. The Healthcare Commission needs to ensure that any service providing incontinence care meets the requirements for incontinence management under the National Service Framework for Older People. The standard of incontinence care that this audit uncovers reflects the lack of dignity and respect that we afford older people within the UK.”

Dr Lorna Layward, Research Manager for Help the Aged, said:

"The report rightly highlights that incontinence is still treated as a taboo subject and has not been given the priority it needs, greatly affecting the one in ten older people who have to live with it. As a consequence, it has a massive impact on the quality of life for older people, many of whom end up isolating themselves because they are afraid to go out. We urgently need to look at ways of treating the underlying causes of incontinence rather than just treating the symptoms."

Robert Meadowcroft, Director of Policy, Campaigns and Information at the Parkinson's Disease Society said:

"The Parkinson's Disease Society welcomes this audit as continence problems can be a difficult symptom to manage for many people with Parkinson's disease. The audit clearly states that these problems are not being managed effectively and we are committed to ensuring the issues raised will be applied to the best practice benchmarks for managing continence issues which the Society is working on to improve the quality of life of those living with Parkinson's."

Gordon Lishman, Director General, Age Concern England comments:

“This report highlights the urgent need for better continence services for older people. These services are essential in preserving dignity and enabling a good quality of life. The Department of Health must do more to make sure that all parts of the NHS are providing continence services to the best possible standards.

“The lack of services is shocking in light of this widespread problem. Continence problems are common but too many people find it embarrassing to discuss, so they suffer in silence. More than one in three men and women in the UK have been affected by bladder problems.¹“

¹ Healthy Bladder Campaign by SMS Ltd, 2002

Notes to Editors

A PDF of the audit is available here. Dr Wagg will be available for interview from 17-22 November at various times. The audit will be posted onto the RCP website on Wednesday 23 November.

Dr Judith Wardle is available all day on Friday 18 November, Monday 21 or Tuesday 22 after 1.30 pm, and anytime on Wednesday 23 – please call 020 7404 6875.

The Alzheimer’s Society is the leading care and research charity for people with all forms dementia and their carers. It provides information and education, support for carers, and quality day and home care. It funds medical and scientific research and campaigns for improved health and social services and greater public understanding of dementia. The Alzheimer’s Society provides a national help line on 0845 300 0336 and website www.alzheimers.org.uk. Please include this information in any publication that uses these comments. For more information contact: Gayle Wing, press officer 0207 306 0839

Clare Lipscombe, Communications Media Officer, Parkinson's Disease Society, can be contacted on 020 7932 1335

Sophie Davison, Press Office, Help the Aged can be contacted on 020 7843 1561

Zena Ambrose , Media Relations Officer, Age Concern England, can be contacted on 020 8765 7516, out of hours 07071 243 243. An Age Concern book, “Taking Control of Bladder and Bowel problems”, provides essential information and advice for anyone affected by incontinence. It also gives practical day to day tips, such as dealing with stress, how to prepare for holidays and any financial help available. It can be ordered by calling 0870 44 22 120 or from www.ageconcern.org.uk/shop and is priced at £6.99. (ISBN 0862423864)

Age Concern England offers an ISDN facility.