About 900,000 children and young people in the UK experience continence difficulties.
The negative impact on their lives and their health is well-documented. One teenager said recently: “It is not life-threatening, but life-ruining”.
A 2017 survey carried out by national campaign group, the Paediatric Continence Forum (PCF), showed that only 41% of clinical commissioning groups and health boards provide comprehensive and integrated community-based paediatric continence treatment services.
The 2015 transfer of school nurses and health visitors to local authority control had a major unintended consequence. These nurses played a key role in the early identification and first-line treatment for bedwetting, constipation and soiling.
Following this transfer, many trained and skilled nurses have been taken off these tasks – a 2017 PCF survey of local authorities showed that only 15% now provide a continence service.
More worrying is that as a direct consequence of the above, we believe many more children are attending A&E and are being admitted to hospital to be treated for advanced constipation (impaction) or for urinary tract infections – a clinically unsatisfactory and much more expensive alternative.
This is not what the government wants to happen. In England, the Carter Review of productivity in NHS hospitals, the NHS RightCare programme and the sustainability and transformation (STP) plans all focus on the need for efficient and effective service delivery.
A good range of guidance and tools to fulfil the government’s brief have been available for some years, for example the National Institute for Health and Care Excellence-accredited Paediatric Continence Commissioning Guide, published by the PCF in 2015 and to be updated this year. This guide provides a clear template for commissioners and clinicians to set up community-based, integrated and cost-effective paediatric continence services.
“The PCF, with its partner organisations, has put together case studies to demonstrate good practice and associated efficiency savings”
NHS England has also published guidance for commissioners and clinicians in 2015 – Excellence in Continence Care – which is about to be re-published.
The PCF is in discussions with Public Health England so that measurement of the outcomes within the commissioning guide can continue in their new FingerTips tool format. The PCF, with its partner organisations, has put together case studies to demonstrate good practice and associated efficiency savings. These are being considered by NHS RightCare as clinical examples in their 2018/9 programme.
What more can we do to improve this situation? On an encouraging note, the survey of CCGs showed that 64% of commissioners were aware of the Paediatric Continence Commissioning Guide and 50% were using it. Clearly awareness and uptake could still improve – and the PCF is driving this by making MPs aware where services in their constituencies are below standard.
The PCF welcomes any feedback from readers on their local service – or on any other aspects of this piece. Do join our Clinical Supporters Group to be our local “eyes and ears” by emailing: firstname.lastname@example.org
More details about the Paediatric Continence Forum and the resources mentioned in this piece are available on the PCF website.
Dr Penny Dobson MBE is chair of the Paediatric Continence Forum.