Disabled children’s continence care services: a national scandal
A major research report has been published concerning the degrading experiences of many disabled children who are denied adequate continence support services. The report, ‘Inaccessible, unacceptable and unaccountable: the provision of paediatric continence supplies in England, Wales and Scotland’ represents an urgent call for action, revealing as it does, the long-term and detrimental impact these failings are having on the lives of disabled children and their families in the three nations.
The report, published by Cerebra, the UK charity working for children with brain conditions, the School of Law, Leeds University and the Parent and Carer Alliance CIC identifies a wholesale failure by the Governments in England, Scotland and Wales to publish ‘fit-for-purpose’ guidance requiring the provision of dignified, accessible, non-discriminatory and properly resourced continence services in the three nations. It highlights the dreadful consequences of this failure and calls on the three Governments to take urgent action to rectify this overlooked and profoundly distressing situation.
Lead authors of the report, Professor Luke Clements, Dr Ana Laura Aiello and Lucy Fullard identify that 900,000 children and young people suffer from bladder and bowel dysfunction. Disabled children are considerably more likely to experience incontinence related problems and to need continence containment products than their non-disabled peers. Such problems can be life threatening, excruciatingly painful, stigmatising, socially isolating, significantly impacting on their education, denying almost all normal childhood experiences and materially undermining their sense of self-worth.
Key messages from the report
The impact of inadequate provision: Many of the distressing indignities described by respondents to the research surveys are of such severity as to engage fundamental human rights provisions: of disabled children experiencing conditions that are objectively degrading; of severe interferences with their private and family lives; of unlawful discrimination; and of inexcusable interruptions to their education (para 7.03).
Failure of accountability: the research concludes that there has been a wholesale failure of accountability in relation to the commissioning of paediatric continence services in all three nations: that the absence of formal Governmental guidance has resulted in unacceptable variations as to what is, in practice, provided (para 7.19).
The failure of accountability is particularly serious in England where over 85 per cent of the NHS commissioning bodies surveyed were unable to provide any information as to the paediatric continence services they had commissioned (para 7.20).
Discrimination: The research finds that in most regions the criteria that are applied in practice, to determine a child’s eligibility for support (and the extent of that support) violate fundamental principles of dignity and are discriminatory for the purposes of the Equality Act 2010 (paras 7.23 – 7.39).
School impacts: The research highlights the traumatic school experiences of disabled children with bowel and bladder conditions: children desperate to be included but acutely self-conscious because of the rudimentary design of their highly obvious (often outsized) and poor quality containment products and having to manage the devastating shame they experience, in terms of leakages, of smelling, of being bullied – and of being robbed of fundamentally important and unrecoverable childhood experiences (paras 7.48 – 7.51).
Poverty: Disabled children and their families are one of the most severely disadvantaged groups in the UK. Many parents referred to the severe financial hardship they experience in having to pay for sufficient and suitable containment products and for the costs incurred as a result of the poor quality (and/or quantity) of products – of constantly having to wash clothing, bedding, carpets, furniture – and indeed repeatedly having to throw away bedding, clothing and much else (para 7.52 – 7.55).
An overwhelming response was received from parents in response to the research surveys asking for their experiences. The scale and trauma of the situation are reflected in some of the comments below:
“I have a 14yr old who is doubly incontinent. No progress has been made at all. My son wears pull-ups day and night and we have never been offered pull-ups or nappies or any other meaningful help. I spend a small fortune on pull-ups – help with supplies would have been/would be amazing but I don’t have the time or energy to fight for it. I don’t have the best opinion of the advice/“help” we received from the community continence service – they didn’t seem to know what to do with an autistic child with continence issues. All their advice/techniques seemed to be more fitting for neurotypical children who wet the bed at night/need basic toilet training”.
“We have been made to spend so much money just to let our son go to the toilet hygienically and with dignity. It has had a huge impact on our lives. I had to give up work initially to care for my son and go through all the issues getting diagnosis etc and then to have to pay this on top of an already difficult situation is scandalous. We are paying huge bills for washing and drying too as incontinence means soiled clothes and bedding – especially as he strips too due to sensory issues and autism”.
On publishing the report:
Luke Clements, Cerebra Professor of Law & Social Justice and lead author of the report, said:
Disabled children – like all children – have a huge need to be ‘included’: to have a happy childhood; to make friends; to enjoy their schooling and so much more. All disabled children encounter problems in this respect, and these problems can be a thousandfold greater if they have bladder and bowel difficulties. This report reveals a devastating failure of support services and a lack of interest – at times best described as indifference – by many health and social care bodies to these traumatising childhood experiences. This is a problem that can be resolved without difficulty – and the Governments in England, Scotland and Wales must take urgent action to ensure that it is addressed.
Jess Camburn-Rahmani Cerebra CEO, commented:
Cerebra undertook this research following repeated concerns raised by the parents and carers of disabled children that we support. The findings are a stark wake-up call to the horrendous situation many families find themselves in, trying to provide dignified and accessible continence support for their children. It beggars belief that such a basic human right is systematically being denied children who are already some of the most discriminated against in our society. As our research demonstrates, the lack of access to appropriate continence products causes undue distress and disruption to children and their families, and further impacts on their financial ability to cope. Most importantly it creates a further painful and unnecessary barrier to inclusion for many disabled children. These children deserve much better. We are calling for the immediate development of fit for purpose national guidance on the provision of continence services for disabled children, and we stand ready to give our full support to any government willing to step up to address this appalling gap.
Lucy Fullard, CEO of the Parent and Carer Alliance CIC., said:
Continence is an important part of disabled children’s health and development. They may have an increased risk of underlying medical conditions that affect their bladder and bowel. Without treatment, these conditions can lead to long-term health problems and affect their quality of life. Significant distress and trauma is being caused to families by the current delays in accessing holistic continence support and care. Parent carers often face blame and often report that they are viewed as simply trying to not pay for these important items. The NHS and Government must hear that the current situation cannot continue. The human rights of many young people are being impacted with devastating consequences.
You can read the full report here.
An online webinar to discuss the research findings from this report will be held on March 4th (10am to 12pm). If you would like to attend, please email Dr Ana Laura Aiello (A.L.Aiello@leeds.ac.uk) by February 28th.
Posted 5 February 2025