Mum warns of danger of constipation after son dies

Richard Handley died at Ipswich Hospital in November 2012 from complications related to constipation

A woman said she wanted to raise awareness of the danger of constipation after complications of the condition claimed the life of her child.

Sheila Handley's 33-year-old son, Richard Handley, who had Down's syndrome, died at Ipswich Hospital in November 2012.

He experienced a deterioration in his bowel health after moving into residential care home in Lowestoft, Suffolk, and about 10kg (22lb) of stools were removed from his body two days before his death.

Ms Handley and health organisations in Suffolk and Essex have launched a new campaign designed to prevent similar deaths occurring in the future.

"Richard suffered with constipation all his life, right from birth, but when he lived at home he learned to manage his constipation and keep him safe," she said.

"It was never a problem because I made sure his diet included lots of fruit vegetables and salad and he always had plenty to drink.

"But when he moved into residential care all that knowledge seemed to disappear, and when he was 33 he died as a result of very poor constipation care – it's a sad story."

Mr Handley experienced a deterioration in his bowel health after moving into residential care

The four-week campaign will promote resources and information about diet, hydration, healthy digestion, tracking bowel habits, bowel screening and exercise.

The project is a collaborative effort between the NHS Suffolk and North East Essex Integrated Care Board, Ace Anglia and the Norfolk and Suffolk NHS Foundation Trust.

They have also joined forces with the Essex Learning Disability Partnership and Essex Carers Network in an effort to promote good bowel health.

Preventable condition

Twenty-four percent of people with a learning disability who died in Suffolk and north-east Essex between 2023 and 2024, had long-term constipation.

"Anybody and everybody can get constipation, but it is common in people with learning disabilities," said Ms Handley.

"It's only by raising awareness of constipation, what it is, how you get it, and how you stop it, that we're going to stop sad stories like Richard's from happening."

Ms Handley says death from constipation is preventable

Lisa Dexter, the NHS community service manager for Learning Disability Specialist Health Services in north-east Essex, agreed that constipation was "preventable".

"Every death that is linked to constipation is a tragedy," she added.

"There are excellent resources out there that can equip carers and health professionals with the knowledge they need to prevent future deaths.

"During this campaign we are asking people to learn more about constipation so they can best support the people they care for."