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Toolkit on Constipation for People with Learning Difficulties

A campaign to help carers and healthcare professionals spot early signs of life-threatening constipation in people with learning disabilities has been launched by the NHS, with what it described as a "suite of new resources".

Research carried out by LeDeR — an NHS-funded service improvement programme for people with a learning disability and autistic people — showed that while one in 10 of the general population experience constipation, the condition affects up to half of people with a learning disability.

Those with a learning disability were less likely to recognise the signs of constipation and be able to communicate their symptoms effectively, increasing the risk of serious complications, and even death, NHS England said.

The Health Foundation recently predicted a 45% rise in diagnosed constipation in England by 2040, in a study forecasting rates of major illness towards the middle of the century. LeDeR research found that constipation was the seventh most frequently reported long-term health condition among people with a learning disability who died in 2020, accounting for 1062 cases . More than a third of those whose deaths were reviewed in the 2020 annual report were usually prescribed laxatives, the authors highlighted.

Anne Worrall-Davies, interim national clinical director for learning disability and autism at NHS England, said: "Reviews into the deaths of people with a learning disability have shown us that far too many people are unnecessarily developing serious health conditions, with some even dying from constipation."

A review by LeDeR and South West NHS found that better recognition and management of constipation might significantly cut hospital admission and improve quality of life.

Accessible, Jargon-Free, and Easy to Read Toolkit

The constipation campaign toolkit offers advice for different care settings and features posters, leaflets, and charts to "support conversations" about constipation and help drive early treatment. Additionally, it was intended to: 

  • Drive awareness of the seriousness of constipation
  • Help people recognise the signs of constipation early
  • Raise awareness of how to prevent constipation

Vijay Patel , who has a learning disability and works for mental health charity Mencap as a campaigns officer, said it was important that the toolkit was developed with the help of people who had lived experience of the issues, "because information about health needs to be accessible, jargon free and easy to read".

Empowered to Seek Help

Constipation could be "really challenging" for carers to recognise, as they may not know the signs or may attribute the resulting behaviours to the person's learning disability, Ms Worrall-Davies commented. She hoped the new resources would help people get the necessary medical treatment "at the earliest opportunity", and thus reduce the risk of hospitalisation and help save lives.

"It's important that people with a learning disability recognise when going to the loo is difficult or unhealthy and can talk to someone if they are worried about it," Mr Patel stressed.

Commenting on behalf of disabled people's support organisation, Pathways Associates , who were involved in development of the toolkit, Janice Wycherley said that she hoped that by raising awareness, paid or unpaid carers would be empowered to understand signs and symptoms and "crucially where they should go to get help to tackle it".