Incontinence causing a 'life sentence' of suffering

People with incontinence are faced with a 'life sentence' of suffering, due to poorly organised NHS services and disjointed care for patients and carers, according to the audit commissioned by the Healthcare Quality Improvement Partnership (HQIP) and carried out by the Royal College of Physicians’ Clinical Effectiveness and Evaluation Unit (CEEU).

Dr Adrian Wagg, Clinical Director of the National Audit of Continence Care, painted a stark picture of the care of people with incontinence:

Bladder and bowel incontinence affects 1 in 5 people causing ill health, depression, social isolation, and costing the NHS millions of pounds. Although these are treatable conditions, people of all ages, and vulnerable groups in particular (frail older people and younger people with learning disability) continue to suffer unnecessarily and often in silence, with a 'life sentence' of bladder and/or bowel incontinence

The audit surveyed the care given to 18,253 people across 135 NHS Acute Trusts, 26 Mental Healthcare Trusts, 86 Primary Care Trusts, and 122 care homes. Key findings include:

• Diagnosis and treatment of incontinence is often poor or non-existent:
  • no diagnosis for urinary incontinence was documented in a large proportion of older people, ranging from 19% in primary care to 38% in mental health care, indicating a reduced rate of assessment or limiting the potential for treatment
  • only 50% of patients in mental health and care home settings had a treatment plan for urinary incontinence
  • 29% of older people in primary care and 36% in acute care did not have a treatment plan
  • 41% of patients in acute care, 27% in primary care, 54% in mental health and 43% in care homes had no bowel history taken despite being faecally incontinent
  • only half of older people in acute and primary care services had a documented diagnosis for faecal incontinence – the rate was higher but still not ideal for younger people at 68% and 65% respectively. Less than a third of patients in mental health care had a clear diagnosis
  • a documented care plan was evident in only one third of patients in acute hospitals.
• The great majority of continence services are poorly integrated across acute, primary, care home and community settings, resulting in disjointed care for patients and carers – although 55-80% of services say they are integrated across healthcare settings, only four services across the country fulfil all the requirements set out in “Good Practice in Continence Services” (2000)
• Often there is no one specifically responsible for commissioning and improving continence services, and – in hospitals, only 48% of self-reported integrated services have a designated lead or director, and only 40% in primary care
• Patients are rarely consulted for advice in commissioning services – only 15% of acute services and 24% of primary care services have a user group
• Training of healthcare professionals is inadequate – structured training in continence care only occurs in 49% of acute hospitals and 39% of mental health care sites
• Clinical services are not complying with NICE guidelines – only 74% of PCTs commission according to NICE guidelines and many hospitals fail to provide care according to NICE recommendations

The findings show that there is an urgent need for improved and equitable practice for all people with bladder and bowel problems. Further work must be done to achieve an acceptable standard of care for the many thousands of individuals with incontinence by developing:

• commissioning frameworks
• training health professionals with regard to national evidence based guidelines
• empowering patients to increase their expectations of cure.