Learning Disability Today
Supporting professionals working in learning disability and autism services

Inadequate continence services are having a “detrimental impact” on disabled children

Toilet with toilet paper

New research has highlighted serious failings in the provision of paediatric continence supplies in England, Wales and Scotland, which is having a long-term detrimental impact on the lives of disabled children and their families.

The report from Cerebra, along with the School of Law, Leeds University, and the Parent and Carer Alliance CIC, found that the lack of guidance on dignified and accessible continence support means families have to bear the financial costs of suitable containment products. There are also extra costs incurred as a result of the poor quality (and/or quantity) of products related to washing clothing, bedding, carpets, and furniture.

Children with bowel and bladder conditions also face the trauma of using poor quality and often outsized containment products and having to manage the “devastating shame” they experience in terms of leakages, smelling, being bullied and “being robbed of fundamentally important and unrecoverable childhood experiences”.

The authors said denying a basic human right creates a further painful and unnecessary barrier to inclusion for many disabled children.

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.”

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Need properly resourced continence services

Cerebra undertook this research following repeated concerns raised by the parents and carers of disabled children that it supports. It is now calling on the Government to provide ‘fit-for-purpose’ guidance on the provision of dignified, accessible, non-discriminatory and properly resourced continence services in the three nations.

In the UK, 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, as well as stigmatising and socially isolating.

Lucy Fullard, CEO of the Parent and Carer Alliance CIC, added: “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 are 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 not to 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.”

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Alison Bloomer
Alison Bloomer is Editor of Learning Disability Today. She has over 25 years of experience writing for medical journals and trade publications. Subjects include healthcare, pharmaceuticals, disability, insurance, stock market and emerging technologies. She is also a mother to a gorgeous 13-year-old boy who has a learning disability.

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