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11th October 2016

How (Not) To Engage with Learning Disabled Self-Advocates

1Most organisations know how important it is to engage with the people who use their service. But sometimes they do not do it very well.

2After one of our member’s death in 2013 the leadership of the local NHS Trust were falling over themselves to speak with the people with learning disabilities that lead our charity.

3We were happy to meet with them and help them to improve their service, and make sure nobody else died a preventable death.

4They promised to set up self-advocacy groups in the area, commission our trainers with learning disabilities to carry out staff training, people with learning disabilities to sit on their board, and to provide money to us to help increase the take up of health checks for people with learning disabilities.

5They delivered nothing.

We continued to meet with them a lot. There was a lot of talking, but still no action.


 A few weeks ago, the My Life My Choice trustees all voted to confirm our charity will no longer engage with the leadership of this NHS Trust, and we wrote a letter to tell them that.

7In the 18 years of the charity’s history we have always tried to work with professionals to improve services for people with learning disabilities.

8We have never in our history refused to engage with anybody or any organisation that works with people with learning disabilities.

9After considerable time and effort by our Charity’s Champions in trying to help the leadership of the NHS Trust act in a responsible and kind way we decided that we had been wasting our time.

10We were concerned at the time that when the NHS Trust first approached our charity that this was only a patronising PR stunt. Our experiences of their leadership over the last three years confirmed our fears.

11We wrote an open letter to the NHS Trust telling them that we would no longer engage with them.

12Our letter got a lot of attention on the internet, and many people emailed us to tell us that they supported our decision.

13This got us thinking about when it is good to engage with organisations like the NHS and when it is not worth our time.

14Organisations should not take the time of people with learning disabilities for granted.

15We want to know that we are making things better for other people with learning disabilities.

16There needs to be positive action because of our involvement.

17Like anyone else, if we feel like we are not having an impact, we will stop doing something.

18So if your organisation would like to engage with people with learning disabilities, make sure that the engagement is meaningful and not a PR stunt or a box ticking exercise.

19People with learning disabilities are fantastic people to work with, providing you give them the respect that they deserve.

Thank you to My Life My Choice for this weeks blog in easy-read format!

*All information is correct at the time of publishing. Use of this material is subject to your acceptance of our terms and conditions.

My Life My Choice

MLMC is an Oxfordshire based charity with a national profile whose prime objective is to raise the self-esteem and quality of life for people with learning disabilities. They do this by campaigning, and providing volunteering, training, employment and social opportunities for its members. MLMC also work with other organisations to help produce information for people with learning and communication difficulties that is simple and easy to understand. Read more

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