Quality statement 3: Coping with symptoms

Quality statement

Adults with faecal incontinence and their carers are offered practical support, advice and a choice of appropriate products for coping with symptoms during the period of assessment and for as long as they experience episodes of faecal incontinence.

Rationale

Faecal incontinence can be depressing, demoralising and detrimental to everyday life and it is important that people are able to cope with symptoms. Because some interventions may take time to be effective, people have to cope with symptoms while undergoing baseline assessment and sometimes during the period of initial management, while waiting for specialist referral, or while undergoing specialist assessment or management. People for whom specialist management has not been effective and people who do not wish to pursue active treatment also have to cope with symptoms. Access to support, advice and appropriate coping strategies, including a choice of appropriate products, can allow people with faecal incontinence to lead active lives with as much independence as possible.

Quality measures

Structure

a) Evidence of local provision of ongoing practical support and advice on coping with symptoms of faecal incontinence.

Data source: Local data collection.

b) Evidence of local pathways (which are known to healthcare professionals carrying out baseline assessments for adults reporting bowel control problems) for accessing practical support and advice on coping with symptoms of faecal incontinence.

Data source: Local data collection. The APPG Continence Care survey includes a question on what pathways are available for people with incontinence within the organisation.

c) Evidence that a choice of appropriate products for faecal incontinence is available locally.

Data source: Local data collection. The APPG Continence Care survey includes a question on whether a choice of products within a range is offered after assessment.

Process

a) Proportion of adults reporting bowel control problems and their carers who receive support and advice at the time of baseline assessment for coping with symptoms.

Numerator – the number of people in the denominator for whom they and their carers receive support and advice at the time of baseline assessment for coping with symptoms.

Denominator – the number of adults with faecal incontinence.

Data source: Local data collection. The National Audit of Continence Care (NACC) collects data on the information available to people with faecal incontinence and their carers.

b) Proportion of adults reporting bowel control problems who are given a choice of appropriate products at the time of baseline assessment for coping with symptoms.

Numerator – the number of people in the denominator who are given a choice of appropriate products at the time of baseline assessment for coping with symptoms.

Denominator – the number of adults with faecal incontinence.

Data source: Local data collection. The National Audit of Continence Care (NACC) collects data on the NHS continence products that people can access.

Outcome

Feedback from adults with faecal incontinence that they receive ongoing support and advice and a choice of appropriate products for coping with symptoms.

What the quality statement means for service providers, health and social care practitioners, and commissioners

Service providers have local pathways (which are known to healthcare professionals carrying out baseline assessments) for accessing ongoing practical support, advice and a choice of appropriate products to help adults and their carers cope with symptoms of faecal incontinence.

Health and social care practitioners ensure that they offer adults with faecal incontinence and their carers (or refer for) practical support, advice and a choice of appropriate products to help them cope with symptoms during the period of assessment and for as long as symptoms persist. This includes up-to-date information about product choice and provision.

Commissioners ensure that they commission services with access to ongoing practical support, advice and a choice of appropriate products to help adults and their carers cope with symptoms of faecal incontinence.

What the quality statement means for patients, service users and carers

Adults with faecal incontinence and their carers are offered advice, support and a choice of products (such as pads, plugs, skincare products and disposable gloves) to help them deal with bowel control problems for as long as there are symptoms.

Source guidance

Definitions of terms used in this quality statement

Faecal incontinence

This is any involuntary loss of faeces that is a social or hygiene problem [NICE clinical guideline 49, scope].

Practical support and advice

This includes written information, opportunities for discussion and access to appropriate services covering:

  • where to get emotional and psychological support, including counselling or psychological therapy or support groups, as appropriate, to foster acceptance and positive attitudes

  • how to talk to friends and family about incontinence and its management

  • strategies such as planning routes for travel to facilitate access to public toilets, and carrying a toilet access card (available from Crohn's and Colitis UK and Bladder and Bowel Foundation) or RADAR key (available from Disability Rights UK) to allow access to 'disabled' toilets in the National Key Scheme.

  • skin-care advice

  • advice on odour control and laundry needs.

[Adapted from NICE clinical guideline 49 recommendations 1.1.5 and 1.3.11].

Appropriate products

These are continence or bowel management products that are appropriate to the person's circumstances, taking into account their preferences. These may include:

  • disposable body-worn pads in a choice of styles and designs, and disposable bed pads if needed

  • pads in quantities sufficient for the person's continence needs (it is inappropriate to limit the number of pads given)

  • anal plugs (for people who can tolerate them)

  • disposable gloves

  • cleansing and barrier products for skincare.

Information should be given about product choice, supply sources and use. Reusable absorbent products are not generally recommended for managing faecal incontinence.

[Adapted from NICE clinical guideline 49 recommendations 1.3.11, 1.3.12 and 1.3.13].

Equality and diversity considerations

Faecal incontinence is associated with many protected characteristics that are covered by the Equality Act 2010, including age, disability, sex, and pregnancy and maternity. The consequences may also impact on others, including religion and belief. Without access to individually tailored coping strategies (including continence products), some people with faecal incontinence who have protected characteristics under the Act could be adversely affected. Failure to make reasonable adjustment to take account of disabilities is a particular concern. Providing access to individually tailored coping strategies for people with faecal incontinence and their carers enables them to participate more fully in society and is an important step in preventing discrimination and promoting equality of opportunity.