Constipation information excludes Learning Disabled who are at particular risk. LeDeR learning into action but nothing on this site

[nidmum]

My son who had severe learning disabilities, Downs and Autism suffered a period of painful malnutrition caused by untreated chronic constipation. This issue that affects those with LD far more than the general population has been totally excluded from the guidance I have read on this site. There have been deaths due to sepsis from untreated Chronic Constipation - Richard Handley. Sadly, on this site you include nothing from the Learning into Action - Dying for a Poo which has been developed by Bristol University alongside Richard Handley's mother, to address these risks. Do the learning disabled who are at such a great risk matter less? It certainly seems so from this site. Why haven't you incorporated this information?

[Cooper27 Administrator]

Hi, and welcome to the healthy eating forum

I'm very sorry to hear about the issues your son has been through. It must be a constant worry for you.

This site operates as a user based forum, and isn't really intended as a medical resource. The information we provide tends to be in answer to specific questions from users, or to share interesting stories we've some across. It may simply be that you are the first person to visit out site, who has been through this, so I'm sorry we don't currently have information to help you.

If you do have any information that would help others though, then please do share it with us, and that will make it available to others to find when they need it.

[Fran182716 Prediabetic]

Hello nidmum, how awful for your son and you. I remember something similar happening to my late mum back in 2006 who had Alzheimer’s disease.

Not quite sure what you mean by “this site “ Health unlocked does not belong to the NHS (even though there are links from the nhs direct website) or any official body, the forums are for peer interaction and support, just everyday people, and are moderated by volunteers who are also just everyday people not medical professionals.

I’m sure we would be interested in information you could tell us, but please don’t blame the admin/moderators for something which is simply not in their remit as laymen who work hard for nothing to keep this message board friendly and free from spam posts etc.

Hoping your son is recovered now 🙂

Edited to add, now I’ve read the title of your post again I think you may be referring to the Constipation information on the NHS choices website and have followed the link to the Health unlocked message board rather than contacting NHS choices directly. I haven’t read the particular page you refer to but would agree that some of the information on the nhs choices pages is oversimplified. I would go back and contact them directly to see if they will consider adding the information you mention about constipation being a particular problem for people with learning disabilities.

Good luck.