It’s everyone’s job to involve people with a learning disability

A girl with Down's Syndrome arranges flowers with her mother

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.

We are running a webinar about the guide on 31 August, 12.30 to 1.30. You can sign up here. This is being hosted by NHS England’s Sustainable Improvement team as part of their Share and Learn series.

You can join our network – the NHS England Learning Disability and Autism Forum. Email us at

Aaron Wood

Aaron Oxford is a Learning Disability Network Manager in the engagement team with NHS England, a job he started in August 2015. Aaron was born with a rare genetic mild disability called Kabuki Syndrome that affects one in 32,000 births worldwide and is autistic.

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  1. stephen ellis says:

    hi I am a service user with a learning disability and I am leaving hospital soon so I would like to apply to work with service user with learning disability to have a voice in NH’S chain so can you contact me please I am looking for word to hearing from you