and Dr Ana Laura Aiello
A major new research report reveals serious failings by health and social care bodies in the way that they commission and deliver (or don’t deliver) paediatric continence support services.
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.
The research involved analysis of the responses to two surveys conducted with parents of disabled children, interviews with disabled young adults (who used paediatric continence supplies throughout their childhood years), freedom of information requests and website searches of health boards in the three nations.
“A horrendous situation”
Cerebra identified the need for the research following repeated concerns raised by the parents and carers of disabled children. Jess Camburn-Rahmani Cerebra CEO, in launching the report, referred to it as:
“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.
Cerebra is 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.”
Jess Camburn-Rahmani Cerebra CEO,
Continence issues can be life-threatening
Over 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 findings of the incontinence report
The key findings of the report include:
- The impact of inadequate provision: Many of the distressing indignities described by respondents to the research surveys were of such severity as to engage fundamental human rights provisions: of disabled children experiencing conditions that were objectively degrading; of severe interferences with their private and family lives; of unlawful discrimination; and of inexcusable interruptions to their education.
- Failure of accountability: the research concluded there had been a wholesale failure of accountability about the commissioning of paediatric continence services in all three nations: that the absence of formal Governmental guidance had resulted in unacceptable variations as to what is, in practice, provided. The failure of accountability was particularly serious in England where over 85% of the NHS commissioning bodies surveyed were unable to provide any information as to the paediatric continence services they had commissioned.
- Discrimination: The research found that in most regions the criteria that were applied in practice, to determine a child’s eligibility for support (and the extent of that support) violated fundamental principles of dignity and were discriminatory for the purposes of the Equality Act 2010.
- School impacts: The research highlighted 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 experienced – in terms of leakages, of smelling, of being bullied – and of being robbed of fundamentally important and unrecoverable childhood experiences.
- 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.
Indifference and lack of interest from public bodies
The Leeds University team who led the research, Professor Luke Clements and Dr Ana Laura Aiello said, on its publication:
“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.”
Co-author, Lucy Fullard, CEO of the Parent and Carer Alliance CIC, stressed the importance of early assessment and paediatric support services and said:
“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.”
Lucy Fullard, CEO of the Parent and Carer Alliance CIC
Call to Action to highlight continence issues
Cerebra has launched a petition calling for:
- The immediate development of national, fit-for-purpose guidelines for paediatric continence services for disabled children.
- Comprehensive, non-discriminatory support to ensure disabled children’s dignity, health, and inclusion in school and society.
- Urgent action to address the financial burdens placed on families who are forced to pay out-of-pocket for basic care supplies.
Please consider adding your name to the petition – it can be accessed by clicking here.
Please also consider contacting your local MPs, AMs or MSPs and advocate for immediate policy changes. A template letter for this purpose can be accessed by clicking here.
You can read the full report ‘Inaccessible, unacceptable and unaccountable: the provision of paediatric continence supplies in England, Wales and Scotland’ by clicking here.
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Luke is also a solicitor with Scott-Moncrieff & Associates Ltd. He has had conduct of many cases before the European Commission and Court of Human Rights.In 1996 he was the solicitor who took the first Roma case to reach the Strasbourg Court Buckley v. UK (1996)
Luke’s academic research and litigation experience is primarily concerned with the rights of people who experience social exclusion, including disabled people and their carers.
He has helped draft and promote a number of Parliamentary Bills aimed at improving the rights of people experiencing social exclusion – including Bills that became the Carers (Recognition and Services) Act 1995 and the Carers (Equal Opportunities) Act 2004.
Luke’s Chair in Law is funded by the disabled children’s charity Cerebra
- Begging to differ with the Baroness—a new legal framework for disabled children’s social care really is needed - May 28, 2025
- Shameful state of continence services leaves disabled children “robbed of fundamentally important experiences” - March 26, 2025
- Research finds unfounded FII accusations cause “devastating and often life-long impact on children and families” and over 80% of allegations dropped - November 15, 2023
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