October 11, 2016
Most organisations know how important it is to engage with the people who use their service. But sometimes they do not do it very well.
After 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.
We were happy to meet with them and help them to improve their service, and make sure nobody else died a preventable death.
They 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.
They 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.
In the 18 years of the charity’s history we have always tried to work with professionals to improve services for people with learning disabilities.
We have never in our history refused to engage with anybody or any organisation that works with people with learning disabilities.
After 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.
We 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.
We wrote an open letter to the NHS Trust telling them that we would no longer engage with them.
Our letter got a lot of attention on the internet, and many people emailed us to tell us that they supported our decision.
This got us thinking about when it is good to engage with organisations like the NHS and when it is not worth our time.
Organisations should not take the time of people with learning disabilities for granted.
We want to know that we are making things better for other people with learning disabilities.
There needs to be positive action because of our involvement.
Like anyone else, if we feel like we are not having an impact, we will stop doing something.
So 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.
People 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!
