New NHS campaign to help spot early signs of life-threatening constipation in people with a learning disability

The NHS has today launched a major new national campaign to support people with a learning disability, healthcare professionals and carers to spot the early signs of potentially life-threatening constipation.

The campaign, which has been co-created with people with lived experience, launches today with a new animation and posters for use in different care settings to support conversations about constipation and ensure people with a learning disability can receive treatment at the earliest opportunity.

Those with a learning disability are more likely to be constipated than the general population, while also being less likely to recognise the signs and be able to communicate their symptoms effectively, increasing the risk of serious complications and even death.

Research carried out by LeDeR, an NHS-funded service improvement programme for people with a learning disability and autistic people, shows only 10% of the general population experience the condition while up to 50% of people with a learning disability are affected.

The study also found constipation was one of the 10 most frequently reported long-term health conditions among people with a learning disability who died in 2020. More than a third of those whose deaths were reviewed in the 2020 annual report were usually prescribed laxatives.

But from today a major new NHS campaign is underway to raise awareness of the symptoms among those with a learning disability, primary care professionals and paid and unpaid carers, aiming to help prevent severe constipation.

The campaign will use a suite of new resources that have been developed in partnership with the Down’s Syndrome Association, Mencap and Pathways Associates to support different audiences.

It comes after a review by LeDeR and South West NHS, which found that better recognition and management of constipation may significantly cut hospital admission and improve quality of life.

Anne Worrall-Davies, interim National Clinical Director for Learning Disability and Autism, 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.

“That’s why our new campaign is so vital to support people with a learning disability, as well as their carers and primary care professionals, to identify the early signs of constipation and ensure they can receive the medical treatment they need at the earliest opportunity.

“Constipation can have a major impact on quality of life for so many people, and it can 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. But thanks to these new campaign resources, we hope to make the signs and symptoms easy to spot so that treatment can begin as soon as possible, reducing the risk of hospitalisation and helping save lives.”

The resources, including an animation, posters and leaflets, aim to:

  1. Drive awareness of the seriousness of constipation
  2. Help people recognise the signs of constipation at an early stage
  3. Empower people to take action and ensure that people with a learning disability experiencing constipation receive medical attention straight away
  4. Raise awareness of the steps which can be taken to prevent constipation.

The resources are designed to be printed and used in primary care or care settings to help with conversations about constipation, leading to swift treatment and improved outcomes for those people with a learning disability.

The resources are available through the NHS England website, as well as being promoted by partner organisations which represent and support people with a learning disability.

Vijay Patel, Campaigns Assistant, Mencap, said: “These resources are important because constipation is one of the reasons people with a learning disability die avoidably every year. 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.

“It is good that people with a learning disability, like me, have been involved in the creation of these resources because information about health needs to be accessible, jargon free and easy to read, so that people can understand them and know what to do.”

Julian Hallett, Services Development Manager, Down’s Syndrome Association, said: “We know, from calls to our helpline, how important maintaining digestive and bowel health is for people who have Down’s syndrome.

“If untreated, constipation can become far more serious or even life-threatening. The experience of developing these resources has been hugely positive, with groups of adults who have Down’s syndrome helping to shape them and giving their valuable lived-experience to ensure the awareness raising campaign is as effective as possible.”

Janice Wycherley, Associate Consultant, Pathways Associates, said: “The North-West Staying Healthy Group facilitated by Pathways Associates CIC was delighted to be involved in the co-production of these new resources about constipation.

“The group feels strongly that all health and social care partners should be raising awareness about constipation. We are all too aware that constipation has led to the premature death of many people with a learning disability and this is both tragic and largely avoidable.

“We hope that by raising awareness about the topic this will empower people with learning disabilities and their paid or unpaid carers to understand signs and symptoms and crucially where they should go to get help to tackle it.”