New guidance to improve services and lives for people living with bladder and bowel problems

NHS England has today published new guidance to help improve the care and experience of children and adults with continence issues (revised document published July 2018).

Problems with the bladder affect more than 14 million people in the UK and about 6.5 million have bowel problems. In addition, 900,000 children and young people reportedly suffer from bladder and bowel dysfunction.

Continence is sometimes debilitating, often embarrassing and it can be a life-changing problem. There are a myriad of reasons and conditions that can affect how someone goes to the toilet, but quite a bit of variation in what people can expect when they visit a health professional for help.

The new guidance brings together the most up-to-date evidence based resources and research to support commissioners and providers of health services, which have the ability to make real and lasting changes to raise standards of care for continence. It encourages much greater collaboration between health and social care, working in partnership with the third sector, as set out in the NHS Five Year Forward View.

Increased preventative services, good quality, easily available information and advice, as well as integrated health and social care could have a significant impact on the numbers of children and adults suffering with continence issues and the severity of their health and social problems.

Two important areas of work include the need to develop the workforce of health professionals, so they are more informed and educated about continence issues, and robustly measuring people’s health outcomes to make sure services continue to provide the best care possible.

Jane Cummings, Chief Nursing Officer for England, said: “Millions of people are affected by continence problems, but it is an issue that many are still too embarrassed to talk about. This means that too many people are suffering in silence and not receiving the care and support they need. ”

“This new guidance will provide the health and care system with a clear framework to help support the improvement of services, ensuring the best and most appropriate care is provided.

“We hope that the guidance will reassure people experiencing this often distressing problem that it’s not something they need to remain silent about.”

Dr Danielle Harari, Consultant Physician and Continence Lead at Guy’s and St Thomas’ NHS Foundation Trust, said:  “This new guidance offers insights and practical support for anyone concerned with continence. The reality is that bladder and bowel continence needs can affect anyone at any age. It can reduce a person’s enjoyment of life, ability to live an independent life, reduce education and work opportunities and lead to further medical complications. A minimum high standard of care should be provided by professionals and expected by people.”

Sarah Elliott, Chief Nurse, NHS England (South), said: “One of the most rewarding aspects of developing the guidance has been listening and responding to people using continence services and giving them the opportunity to rebalance power so people can have a greater role in the assessment and management of their continence condition. Now is the opportunity to put into effect the best care and to guide people to the help they need to manage their bladder and bowel problems.”


  1. Melanie Coxon says:

    In my role as a school nurse l can say that there needs to be more advice and guidance for parents around continence issues
    Services in the West Midlands have been cut to the point there are no Specialist Continence Nurses. With resources and training school nurses already employed by NHS could be commissioned to provide much needed support.

  2. Josef K Kafka says:

    Section 4.4 of the report headlines:
    4.4 Empowering people
    Which lists the various agencies and voluntary sector providers who can do things for us.
    The report is most responsible in stating:
    ”Where help is sought, a third of parents reported they were not always involved in decisions about their child’s care (CQC 2015), demonstrating the need for more active involvement of patients and families not just in decision-making but also in service review and design.”
    BUT, then drops the baton :
    ”As full partners in the design and delivery of person-centred care, voluntary organisations can significantly extend the range of support that is available. Working alongside CCGs, ..”
    Section 4.4 ends with :
    ”True empowerment of people brings choice: not just a choice of a provider, but choice of what they feel is appropriate for them. This may mean turning down a particular treatment option. Empowerment means having access to information, advice and treatment and brings the understanding that people have the right to continent living, whenever this is achievable. This enables an optimum quality of life, independence and personal dignity.

    When so many ”Voluntary” agencies are now linked into Government finance, are governed by high salary CEOs, Board Directors who have much experience of being Board Directors, the opportunities to even have one’s voice heard at those levels is remote, never mind influencing the direction of interest, It can be argued the Central Gov’t funding dictates that.

    To the CCGs
    Mr S Stevens [NHS England] is on record as stating publicly, at NHS Expo 2015, that democratic election of Lay Directors to CCG Boards will not be even considered. They will be appointed, and payed, from NHS monies, by the CCG Board.
    Taxpayers may attend the Public face of CCG Boards, but at Meetings (held) In Public, and not Public Meetings.

    HealthWatch, the successor to Community Health Councils, are now privatized profit centres, with the same type of command and control centralized system as other ”Voluntary” organizations.

    Until the voice of the people is heard, and thru’ our organizations, controlled and sponsored by us, then NHS, and other services, will never allow us to be empowered,
    Why should they?
    We pay the bills – ‘they’ own the services.

  3. Dr Gordon A. Read says:

    Practical advice for patients in bookle form would be a most useful adjunct .

  4. Joy Osborn says:

    Bladder weakness is a difficult condition at any age, but in old age it is really embarrassing as it takes longer to get to the toilet, especially if the toilet is in a theatre where the chances are that there will be a queue. Subsequently, it is less stressful to simply decline invitations and stay at home.