Recognising excellence in continence care

Ahead of Continence Awareness Week to be staged in June, the Chief Nurse for NHS England in the South explains the need for commissioners to listen to patients:

I recently attended the National Continence Care Awards organised by the Expert Group on Lower Urinary Tract Symptoms, a group of primary and secondary healthcare professionals and patient representatives.

It is not often that a light is shone on bladder and bowel problems but this is something the nursing team is working towards changing in NHS England.

A wide range of people can be affected by continence problems – children, pregnant women and women who have had children, those with neuropathological problems or musculoskeletal problems and men who have had a prostatectomy, to name just a few – and there can be considerable psychological impact.

At the latter end of last year, NHS England published Excellence in Continence Care: guidance for commissioners, providers and people living with continence issues on what good looks like. We brought together existing excellent research and guidelines for best practice in continence care and translated into a clear commissioning plan.

Walking into the room at the Awards, I had the opportunity to hear more about the work that is taking place across England to make care and experience of using services better for patients.

What struck me was the buzz of conversation between clinicians, patients and MPs, all of whom had a common interest of making a difference to continence services. There was lots of laughter and people reminded me you need to keep a sense of humour if you are living with continence problems.

I was also struck by the sense of collaboration; everyone playing their part in the interest of excellent continence care and clinicians and patients sharing expertise and personal experience as equal partners.

The National Continence Care Award categories are closely aligned to the areas we address in Excellence in Continence Care including recognition for commissioning high quality care.

Commissioners are well-placed to focus on transforming the care of people and for me, the biggest priority is making sure that those who commission continence services both understand the burden of continence needs within their local population and work in collaboration with providers.

One example of commissioners and providers working together to improve care for patients is the joint initiative between Somerset CCG and Somerset Partnership NHS Foundation Trust, which won the category for commissioning.

They have introduced ambulatory care clinics which provide local care in what is a rural area and where travel time is a significant factor for both patients and community nurses. The clinics include ongoing support for catheterised patients, through regular appointments for routine catheter changes and emergency catheter care within clinic hours.

The service is continuing to develop and grow but has already shown significant benefits for patients and their care.

In order to understand the needs of people living with bladder and bowel problems, commissioners need to listen to what patients have to say. I was heartened to see Jacqueline Emkes receive the patient champion award in recognition of the active role she takes in supporting other patients and working with health care professionals to improve continence care.

Jacq was one of our patient representatives involved in developing the Excellence in Continence Care guidance. Her story and experience at the receiving end of continence care really helped us to understand what the NHS can do to ensure we provide the best care and support people to manage their bladder and bowel problems.

Indeed, one of the most rewarding aspects of developing the guidance was 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 and in service design.

I urge commissioners to talk to people like Jacq when they are designing their continence pathways; to work with partners to ensure local plans consider people’s needs and offer the right treatment and support; and to take inspiration from the winners of these awards.

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.

Sarah Elliott

Sarah Elliott was appointed as the Regional Chief Nurse for NHS England (South) in April 2014 and also leads a number of national commissioning work streams including continence.

Following qualification, Sarah practiced as a nurse in a range of hospital settings including intensive care. She later developed an interest in health promotion and public health and trained as a Health Visitor and Practice Teacher in Brighton.

She has held several Director of Nursing posts in a number of organisations within the South in community/mental health Trusts and commissioning organisations.

In addition to leading the agenda for commissioning for quality and safety in NHS services across the south, Sarah has initiated multiple patient and public involvement activities.

Alongside Sarah’s professional working life, Sarah has undertaken voluntary work with Youth Offending teams and the Alzheimer’s Society. She is also an accredited coach and special advisor to the CQC.


  1. Aruna Patel says:

    I would like to ask if any of the people involved in putting this document together have a relative who requires help with bladder and bowel and has been deemed to only have 3 pads a day. My relative has a serious brain condition and cannot tell you when they need bathroom and currently in a home. I was totally amazed when a nurse came to assess and deemed 3 pads a day. Also a recommendation was to restrict fluid after a particular time and give lemon barely in the day to try and prevent Uti. Is this care with,compassion. What sort of society are we.

  2. David Halpin MBE says:

    Thank you for the document. I cannot say I have read through every attachment. But like to raise this issue with you please. I have spinal cord Injury. The Bowel requires manual evacuation daily.
    There was admitted to a mainstream Ward suffering from anaemia. Fortunately I was in the condition to carry out the evacuation. I was however dismayed to find that none of the nursing staff were able or qualified to carry out this task if I had needed it.

    From making some enquiries I find out this is not uncommon the people are spinal cord injury. Can you tell me please all commissioning process NHS England has put in place to correct this awful situation people.

    • NHS England says:

      Dear David,
      Thank you for replying to the blog and sharing your experience with us. Access to the right care and treatment at the right time is central to improving both the outcomes and experiences for people living with continence needs. The Excellence in Continence Care guidance recognises that continence care is variable across England and has been produced to support greater collaboration between people who commission services, those who provide the services and people using continence services to put in place the best care. Within the framework, developing and supporting the workforce to ensure they have the correct education and training is seen as a crucial area to ensuring the best outcomes for people. Excellence in Continence Care sets out our expectations of organisations that commission and provide continence care education, including making sure that training is easily accessible, so that as many professionals as possible caring for people with continence needs have a minimum set of skills and are aware of their specific roles and responsibilities. A skilled and knowledgeable workforce will mean patients experience better care and treatment; they will be supported to self-manage their condition where this is their choice; and they will have access to the right information, advice and treatment to make choices about their care.
      Kind regards,
      NHS England

  3. Tiziana Ansell says:

    It is heart lifting to see NHS England taking a lead in developing best practice guidelines for commissioners in continence care. We need to raise the profile of continence problems and encourage appropriate commissioning of services. I am concerned about the future of continence services and continence nurses. They are becoming a “dying breed” and we have to stop extinction with support and care!

  4. Sally says:

    How I wish I had been able to read an article like this 3 years ago when my dear 101 year independent dad was refused approval for a higher rated incontinence pad and instead forced to endure 4 failed attempts over 2 weeks to fit a conveen and then when that failed forced to use 2 lower rated pads that chaffed and caused sores and infections. All because the local ” commissioners ” did not approve high rated pads regardless of the patients situation. My poor dad spent the last months of his dignified life worried about being a nuisance to his carers, worried about leaking urine onto his clothes and chair, worried about smelling like a old man when all his life he had been clean and smart and confident. I had umpteen conversations with various district nurses, GPs, practice managers all to no avail, how could people be so insensitive & uncaring; policies were put before patients needs.

    • NHS England says:

      Dear Sally,
      Thank you for sharing your experience of your father’s care. The Excellence in Continence Care guidance places a great emphasis on the need for commissioning organisations to fully understand the needs of people living with continence problems, and their families and carers, when making decisions around purchasing care on behalf of their local populations. This understanding is crucial to enable people to achieve independence, where possible, and personal dignity. The guidance recognises that the NHS has work to do to improve continence care and the experiences of people living with continence problems and has been produced to help bring about the changes that are needed. One key focus in the guidance is the importance of delivering services that restore dignity to people so we can prevent distressing experiences and improve quality of life.
      Kind regards,
      NHS England