As NHS England publishes a guide to gaining insight from people with a learning disability, one of our Learning Disability Network Managers explains why it is so important:
I believe everyone has the right to get high quality care and treatment.
And people with a learning disability should get the same chance to voice their opinions about what is important to them regarding the health services they receive.
Most of the services people with a learning disability use are the same services as everyone else uses. So it is our duty to include them when getting feedback about these services from patients.
People with a learning disability die earlier than other people on average. For men it is 13 years earlier, for women 20 years. This is because of avoidable causes. This must change. There is more about the numbers on the CIPOLD (Confidential Inquiry into Premature Deaths of People with Learning Disabilities) website.
When services don’t meet people’s needs properly it means they get less good care than other people.
I work as a Learning Disability Network Manager for NHS England and it’s my team’s job to make sure people with a learning disability get their chance to be part of NHS England’s work.
We run the NHS England Learning Disability and Autism Forum, and our members have given us feedback on a wide range of subjects, some relating to specialist services but mostly about the mainstream services that people use.
With our colleagues in the Insight and Feedback team, we have made a bitesize guide to including people who have a learning disability in giving feedback through surveys and engagement events.
We are also launching easy read version of this guide – not just so more people can see what we are saying on their behalf, but because more and more people like me are being employed in the NHS to be part of the work to get feedback.
What can you do? You can read our guide! And you can tell other people about it too.
You can join our network – the NHS England Learning Disability and Autism Forum. Email us at LearningDisabilityAutismEngage@nhs.net