February 14, 2018
A lot of members of MLMC are living good independent lives. We have friends and a community, and some of us have jobs. But sometimes things happen which make us remember that people with learning disabilities are not treated equally – especially when it comes to health.
Richard Handley’s death from constipation has been in the News this week because the inquest about his death has come to an end.
People who don’t have a learning disability don’t die from constipation at the age of 33 and Richard’s death shows that we have a long way to go before everyone is supported to live healthy lives and access healthcare.
One of the issues that Richard’s inquest brought up is that support providers find it hard to know when to let people choose what they do, and when to tell people what they should do.
When his residential care changed to supported living, Richard’s family was told “he had the same right as anyone else to make unwise choices and eat unhealthily”. Richard’s constipation had been managed by controlling his diet but the provider stopped that diet because Richard had a right to make unwise choices.
We think having choices are important – the name of our charity is ‘My Life My Choice‘ – but nobody should be left to make choices without understanding the consequences, especially if those choices could lead to their death.
Steve Topple wrote an article that says: “No one who was being honest would say that all learning disabled people and those living with Down’s Syndrome and autism can make every single decision about their lives correctly. That is where the whole notion of ‘support’ comes in. But all too often, a lack of support is what leads to tragedy. And in Richard’s case, it seemed that a lack of support over his diet was the tragedy; paradoxically, his support workers probably thought they were giving him independence.”
Steve thinks that a lot of providers leave people to make their own choices because it saves them money and that, “in Richard’s case, it was probably far more ‘efficient’ to leave him to choose whatever he wanted to eat. Because the time needed to support him in buying, preparing and cooking the right healthy food would have cost money in staff training and wages.”
Whatever the reason, anybody who provides services to people with learning disabilities should help them make healthy decisions – because the risk to their life of not doing this is too great.
Sources and further reading:
http://www.bbc.co.uk/news/uk-england-suffolk-42989091
https://www.theguardian.com/uk-news/2018/feb/08/gross-failure-in-mans-care-led-to-death-from-constipation
http://www.georgejulian.co.uk/2018/02/09/sorry-seems-to-be-the-hardest-word/
https://www.thecanary.co/opinion/2018/02/09/theres-reason-man-allowed-die-constipation-no-one-wants-say-opinion/
