Not giving a shit

This is a quick post in response to the heartbreaking inquest for Sally Lewis, which George Julian has been assiduously reporting on in her blog https://www.georgejulian.co.uk/  Sally died as a result of the consequences of prolonged constipation, which despite Sally's 'support' service Dimensions knowing was an ongoing issue for her (and her GP flagging this up to people in the service), almost no-one working with Sally on a daily basis bothered to take seriously. The coroner reported a conclusion of gross neglect, which as those following George's reporting work will know is all too rare when it comes to the deaths of people with learning disabilities.

A final insult to the family is that they are having to crowdfund to pay for legal representation at Sally's inquest, while Dimensions have the funds to pay for lawyer after lawyer - if you have the resources, please consider a contribution https://www.crowdjustice.com/case/justiceforsally/  

In this post I'm just going to provide a short set of links to relevant evidence about constipation and people with learning disabilities, which has been around for some years now. 

1) At least one third of adults with learning disabilities are likely to be experiencing long-standing constipation at any one time, based on research directly assessing constipation.

2) In 2021/22, only 13.1% of people with learning disabilities in England registered with a GP were recorded by their GP to have had diagnosed or treated long-standing constipation in the previous five years - this figure has hardly changed from 2017/18 (13.3%).

3) Richard Handley died from the consequences of chronic constipation in 2012 - his inquest did not take place until 2018. He is by no means the only person with learning disabilities to have died as a result of constipation.

4) Amongst people with learning disabilities, long-standing constipation is one of the most common causes of being taken to hospital in an emergency.

5) Research has reported that over 25% of people with learning disabilities received a repeat prescription for laxatives in one year, compared to 0.1% of people without learning disabilities.

6) Beyond laxatives, there is little research on how to effectively help people with learning disabilities with long-standing constipation, and the evidence there is says that laxatives aren't always that helpful.

7) There is virtually nothing on how supported living and residential care services can support people with learning disabilities to live lives that reduce the chances of long-standing constipation, such as engaging in physical activity and eating healthier diets.

8) In 2019, NHS England identified constipation as a priority for action for people with learning disabilities following a LeDeR report identifying 12 people with learning disabilities dying as a result of constipation. Constipation leaflets were published in 2019, but have not been updated since.

9) In 2016, the Public Health England Learning Disabilities Observatory produced reasonable adjustments guidance (including an easy-read introduction) concerning constipation and people with learning disabilities. Funding for this Observatory stopped in 2019 and this guidance has not been updated since.

10) There are no NICE clinical guidelines relating to constipation and people with learning disabilities.

It's clear there's no reason for services not to know that constipation can be a serious problem for a lot of people with learning disabilities, and that the consequences of long-standing constipation can be fatal. It's also highly revealing that there's very little evidence about helping people live their lives in ways that would make constipation less likely, rather than prescribing laxatives. And it says something quite fundamental that nothing designed to seriously and practically address constipation amongst people with learning disabilities has been sustained. As a very wise colleague and friend said to me recently, how can you make people give a shit?