Leading learning disability and continence care nurses have welcomed a new NHS England campaign that is aiming to improve recognition of life-threatening constipation in people with a learning disability.
Yesterday NHS England launched the major national campaign which focuses on how people with a learning disability, and health and care professionals, can spot early signs of the condition.
“Anything that can help address the prevalence of constipation and poorer outcomes and early deaths for people with learning disabilities is absolutely vital”
It comes as people 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.
An NHS-funded service improvement programme for people with a learning disability and autistic people, known at LeDeR, reported in 2019 that only 10% of the general population experience constipation, while up to 50% of people with a learning disability are affected.
Meanwhile in a 2020 report, LeDeR found that constipation was one of the 10 most frequently reported long-term health conditions among people with a learning disability who died that year.
The latest NHS England campaign is underway to raise awareness of the seriousness of constipation and help people recognise the signs of the condition in people with learning disability at an early stage.
In addition, it aims to ensure that people with a learning disability can receive treatment at the earliest opportunity.
The campaign, which has been developed in partnership with the Down’s Syndrome Association, Mencap and Pathways Associates, includes a new animation, leaflets and posters for use in different care settings.
The resources are available through the NHS England website, as well as being promoted by these partner organisations.
Anne Worrall-Davies, NHS England’s 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.”
Meanwhile Jim Blair, learning disability nurse consultant, told Nursing Times that it was “a really good initiative”.
He said: “Anything that can help address the prevalence of constipation and poorer outcomes and early deaths for people with learning disabilities is absolutely vital.
“It’s a very welcome campaign, it just needs to take momentum.”
Mr Blair said it was “a sad indictment to society” that people with a learning disability continue to suffer from constipation and are dying as a result.
He added: “With the many other things that people with a learning disability face, this is a significant issue that is relatively easily addressed, if focused, and if people are aware of issues and know how to look for it.”
Mr Blair added that it was also important for health professionals and carers “to not feel uncomfortable talking about people’s poo”.
“If your health needs aren’t being picked up then, sadly, often you have a poor life, your life expectancy is much shorter, and you can die avoidably and preventably – that’s the issue around constipation,” he said.
The Royal College of Nursing professional lead for learning disability nursing, Jonathan Beebee, echoed this, and told Nursing Times that “it often shocks people to hear that people die from constipation, but it is a common problem for people with learning disabilities”.
He said: “Learning disability nurses are skilled in identifying constipation in people with learning disabilities, which may not always present symptoms in typical ways and people may not be able to identify or communicate the symptoms themselves.
“However, people with learning disabilities are not always seen by a learning disability nurse, so it is vital that carers and those working in primary care are aware of the importance of constipation too.”
Meanwhile, June Rogers, a retired specialist children’s bladder and bowel nurse, told Nursing Times that any campaign about constipation in people with learning disabilities should be “two-fold” by educating health and care professionals as well as the public.
She said: “The general belief is that constipation is a mild thing, [and if you] take a couple of pills it goes away.
“But no, it’s not a benign condition – if it’s not treated appropriately it becomes chronic.”
Ms Rogers is currently working with Down Syndrome UK as an independent practitioner, to support over 4,000 families of children with down syndrome to learn more about the issues of constipation.
In this role, she said she helped to “empower parents and families” to try and prevent the condition from happening in the first place, and to challenge health and care professionals if constipation is not being treated properly.
She said the most important thing about these sorts of campaigns was ensuring that the information can be disseminated to families.
Ms Rogers added: “You don’t know what you don’t know, so whatever campaign is done, it needs to be reached out to as many forums and groups as possible”.