Ace Anglia, a people-led advocacy organisation working with people with learning disabilities and autistic people across Suffolk, have shared a new video highlighting the dangers of poor constipation care.
In the video, peer educator Steven talks with family carer Sheila Handley, whose 33-year-old son died due to complications related to constipation in 2012.
Richard, who had Down’s Syndrome, experienced a deterioration in his bowel health after moving into residential care.
This video is part of a four-week campaign to promote resources and information about diet, hydration, healthy digestion, tracking bowel habits, bowel screening, and exercise.
The project is a collaboration 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.
In the video, Sheila highlights the importance of being aware of constipation and provides guidance on prevention and identifying crucial signs and symptoms.
She said: “It’s only by raising awareness of what it is, how you get it and how you stop it will stop sad stories like Richard’s from happening.
“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. 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.”
People with a learning disability are more likely to suffer from constipation than people without learning disabilities. They are also more likely to have unusual presentations or cannot communicate symptoms very well, which can lead to misdiagnosis and avoidable emergency admissions to hospitals.
Prevalence rates range from 33-50% in studies and this figure increases to nearly 60% in people with profound intellectual and multiple disabilities (PMLD).
The Learning Disabilities Mortality Review (LeDeR) also found that 23% of deaths identified constipation as a long-term health problem.
This is why it is important that carers and anyone supporting a person with a learning disability are aware of the higher risks of constipation and how to manage the condition.
Further resources, tips and accessible links are available at The Suffolk Ordinary Lives website.
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