Bereaved Suffolk mum raising awareness of condition that claimed the life of her son
Richard Handley, who had Down’s Syndrome, experienced a deterioration in his bowel health after moving into residential care.
A bereaved Suffolk mum has teamed up with local organisations to launch a campaign aimed at preventing constipation – the condition which ultimately claimed the life of her son.
Richard Handley, who had Down’s Syndrome, experienced a deterioration in his bowel health after moving into residential care.
Now his mum, Sheila Handley, is sharing their story via a new video in a bid to prevent similar deaths in the future.
The video, which can be viewed below, is an awareness campaign that has been launched by the NHS Suffolk and North East Essex Integrated Care Board (ICB), Ace Anglia, Norfolk and Suffolk NHS Foundation Trust, Essex Learning Disability Partnership and Essex Carers Network.
The campaign aims to promote good bowel health and over the next four weeks local organisations will be sharing advice and tips on social media.
Organisations involved in the campaign are asking local people to help spread the word.
Richard’s mum Sheila, who features in the video, said: “Anybody and everybody can get constipation. 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.”
The partner organisations have also compiled a range of information and resources which can be accessed online on topics such as diet, hydration, healthy digestion, tracking bowel habits, bowel screening, and exercise.
Across Suffolk and north east Essex 24% of people with a learning disability who died in 2023-2024 had constipation as a long-term condition1.
People with a learning disability may also be less likely to recognise the symptoms of constipation and be able to communicate their symptoms2 increasing the risk of serious consequences.
Jerry Newman, a learning disabilities and autism nurse from the Norfolk and Suffolk NHS Foundation Trust, said: “If you can’t have a poo, it’s really important to tell someone you trust.
“They can then help you to contact and talk in private to a chemist, doctor, or nurse who can then find the best way to help you start having poos again.”
Roger Blake, a learning disability and autism specialist nurse from the East Suffolk and North Essex NHS Foundation Trust, said: “Making simple changes to your diet and lifestyle can help to prevent and treat constipation.
“These changes include eating a healthy and balanced diet, including fruits and vegetables, drinking plenty of water, avoiding alcohol and taking part in light exercise. All these actions can help prevent constipation.”
Wendy Burt, from Essex Carers Network said: “Constipation is really serious – deadly in fact. We can’t ignore it. Everyone has to act to end the taboo, so if you care for someone, please talk about poo.”
Lisa Dexter, Community Service Manager for Learning Disability Specialist Health Services in north east Essex, said: “Constipation is preventable and every death that is linked to constipation is a tragedy. 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.”