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Continence services within England - Cath Williams

CaringIncontinence has a significant impact upon quality of life and is costly to the individual and society (DH 2000). Despite often being curable or manageable it rarely has a high priority within healthcare. Continence services are often described as Cinderella services, however there have been key periods of development often due to sustained national campaigning both by professionals and patient groups (Thomas 2004) or when poor practice is highlighted. (Francis 2013).

Developments began in the 1970’s with a Continence service established in 1974 as part of the Disabled Living Foundation. This raised public awareness and patient information and the in 1977 the Chief Nursing Officer recommended all areas had an expert resource. Over the decades this joint approach from patient support and professional championship has been at the forefront of service improvement drives.

In 1981 clinicians and industry representatives formed the Incontinence Action Group in response to a questionnaire sent by health authorities. This led to the formation of the Association for Continence Advice (ACA) – a multi-professional group with key aims of improving continence care through education, and the document “Action on Incontinence” was published. (White & Getliffe 2003). This recommended the following:

  • An enthusiastic consultant and general manager
  • Continence Advisors with management and teaching skills, carrying a small caseload
  • A computer database of patient information
  • A sympathetic, knowledgeable person answering the phone
  • Active public awareness activity
  • A designated budget.

It is interesting to note that the general requirements have changed little since that time.

Services grew in the 1980-90’s but with little uniformity. Containment product provision (pad supply) was and still is a postcode lottery. Some services were acute focused, others firmly rooted in community services and skill sets varied considerably as did job bandings. In 1998 a working group was commissioned to develop guidelines for services. This called for:

  • integrated services encompassing adults and children, and bladder and bowels
  • a multi-disciplinary approach
  • adequate funding. 
  • (DH 2000)

It was a sensible, robust document however it was a guideline and not mandatory. It was over ambitious in terminology, calling for a director of continence services which unsettled some providers concerned about wages bills. However it’s major downfall was timing. The publication coincided with the emergence of Primary Care Trusts from Health Authorities and by the time the dust settled on the new commissioning arena organisations were concerned with bigger, more costly services and any impetus for the document to make a difference was the responsibility of enthusiastic committed clinicians who drove service improvement without major organisational implementation.

The NSF for Older People (2001) noted that continence services were not available to all who needed them and specified integrated continence services should be developed by 2004. This still remains to be implemented in many areas. Essence of Care (DH 2001) encouraged nurses to think about continence as a benchmark of minimum standards. NICE guidelines have been useful in raising the profile of continence – urinary, faecal, adults and paediatrics.

The Royal College of Physicians National Audit of Continence Care, re-evaluated over several years, served to highlight to lack of progress following the Good Practice Guidelines. The original results in 2010 found services to be poorly integrated, commissioning lacked clinical or service user involvement and there was a lack of training for health care staff regarding bladder and bowel assessment, treatment or management (RCP 2010)
They recommended that: “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.”

Unfortunately since that time services have struggled. Universities offering a postgraduate continence course have dwindled and as the undergraduate programme becomes fuller many nurses have little of no knowledge of continence solutions on qualification. There is a similar position in General Practice and physiotherapists and Occupational Therapists have even less continence education, although physios specialising in Women’s Health do have some exposure to training.

In 2011 the All Party Parliamentary Group for Continence Care produced guidance for commissioners. The APPGCC (2013) audited services regarding their service provision. A few services saw an increase in funding for staff and service re-design, often as part of an Any Qualified Provider funding uplift. 70% of services saw a population increase with no additional funding and 40% reporting a decrease in funding and a reduction in senior staff bands. The one consistent area of improvement was the development of patient outcome measures, which would be consistent with other areas of NHS care. Of key concern was the reduction in education and training available for the general workforce – training was quoted as being available and usually free to the ward or community team but staff were not released to attend training, resulting in a lack of fundamental knowledge at all levels.

ERIC (Enuresis Resource and Information Centre) began in 1988 to support parents of and children with a bedwetting (enuresis) problem but there were very few childrens continence services. Health visitors gave advice on potty training and some school nursing services provided enuresis advice. More complex urological and bowel problems were typically managed through childrens hospital services. Children with learning difficulties, requiring additional support with toilet training often were left to wear pads for life. Childrens services gradually developed and in 2003 the Paediatric Continence Forum was set up to “engage with policymakers nationally to raise the awareness of childhood bladder and bowel services and to improve NHS services”.

In the last few years NHS England has shown interest and support for service development both for adults and children. In 2015 the Excellence in Continence Care document was published to guide commissioners in the procurement of continence services and has been updated July 2018. https://www.england.nhs.uk/publication/excellence-in-continence-care. The Nursing and Midwifery Council is reviewing undergraduate nursing education to develop a workforce fit for 2020 healthcare. Following a period of consultation the NMC have given assurance that they will re-word much of the continence related requirements, resulting in a more knowledgeable nursing workforce. A review of community nursing requirements is also planned.

Incontinence is a hidden problem with stigma attached. It is rare to find patients willing to speak publically or celebrities to promote the cause, although this is improving slowly. Pressure groups and patient advice forums have always been reliant upon industry for financial support. In the 1990s InContact (a patient support group) merged with The Continence Foundation (a public awareness group set up to be the umbrella organisation and the “voice” of continence) merged to form the Bladder and Bowel Foundation. Unfortunately this folded in the last few years due to lack of funding and more recently the expert LUTS group – a lobbying group found its main pharmaceutical sponsor withdraw and has since folded.

Charitable funding is a competitive market and continence charities do not do well with general public giving. Continence problems are frequently a consequence of other disease and invariably and public fundraising is focused upon the disease rather than one of the lived with consequences. Continence services have also floundered at times because there is no one medical field which has a responsibility for continence. Likewise nursing has many different routes to developing an interest in continence. University post graduate courses have reduced and in all disciplines there is less under-graduate continence input than previously. UKCS has produced minimum recommended standards for education and in response to the lack of taught courses. ACA is shortly to launch a MOOC (Massive Open On line Course) accessible to all wishing to develop their knowledge. Both continue to hold successful annual conferences to enhance professional learning.

Professional groups (eg ACA, RCN Continence Forum, UK Continence Society, Pelvic Obstetric and Gynaecological Physiotherapy and various medical Royal Colleges) and a few committed charities (Bladder & Bowel UK, (formerly PromoCon) and ERIC) have been and remain at the forefront of developments and national lobbying. In a field where the patient voice is small these groups of professionals are the patient advocates and service improvement champions. For many this is undertaken voluntarily on top of full time day-jobs. The committed professionals within these groups striving to improve education, services and patient care embody the best elements of the NHS over the last 70 years and continue to develop services fit for purpose for the next 70 years.

References

APPGCC (2011) Cost effective commissioning for continence care APPGCC London

APPGCC (2013) Continence Care Services APPGCC London

DH (2000) Good Practice in Continence services DoH London

DH (2001) National Service Framework for Older People https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/198033/National_Service_Framework_for_Older_People.pdf viewed 13.5.18

DH 2010 Essence of Care 2010 Benchmarks for Bladder and Bowel Continence Care https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/216693/dh_119971.pdf viewed 2.5.18

https://www.eric.org.uk/paediatric-continence-forum Viewed 13.5.18

Francis (2013) Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/279124/0947.pdf

White H, Getliffe K 2003 Ch 1 Incontinence in perspective in:
Getliffe K, Dolman M (2003) Promoting Continence Bailliere Tindall
NICE

  • CG 49 (2007) Faecal incontinence in Adults
  • CG 97 (2015) Lower Urinary Tract symptoms in men
  • CG 171 (2015) Urinary incontinence in women
  • CG 148 (2012) Urinary incontinence in neurological disease
  • CG 111 (2010) Bedwetting in Under19s

NHS England (2015) Excellence in Continence Care https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/11/EICC-guidance-final-document.pdf viewed 2.5.18

Beadle J Chapter 16 in Norton (1996) Nursing for Continence. Beaconsfield

http://www.paediatriccontinenceforum.org/ viewed 13.5.18

https://www.rcplondon.ac.uk/projects/outputs/national-audit-continence-care-nacc

RCN/ Pharmacia (2000) Continence is everyone’s business. Research Education Development Truro.

Thomas S (2004) Is policy translated into action? RCN 

ACA

NSCP

Content provided by Cath Williams
Divisional Lead - Specialist Services
North Somerset Community Partnership
Clinical Advisor - Association for Continence Advice
NSCP - This email address is being protected from spambots. You need JavaScript enabled to view it.
Tel: 07796 190246
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