You said, we did

Here are the things that the advisory group has been helping us with and what we’re doing about them:


Focus on autism 2

You said

We spoke to the advisory group about autism in Transforming Care.

They advised us on the refreshed Autism Strategy and language around autism.

We did

  • We have used the advice on language to tell communications staff how to talk positively about autism. We use this to advise speakers at our events too.
  • We will soon put it on the Involvement Hub to tell other staff good ways to talk about autism.
  • The information on mental health and Transforming Care will be used to develop the programme.
  • The Department of Health heard what people said about the Autism Strategy.

Also see focus on autism 1.

Improving care pathways

You said

We did

NHS England is using what you have told us, with the NHS RightCare team to make things better.

Improving annual health checks

You said

You told us how we could improve annual health checks for people with a learning disability. You also told us how annual health checks could be adapted for people with autism.

We did

We are using the advice the group gave us to improve annual health checks.

Improving communication

You said

We did

We are changing how we talk with people and telling other bits of the NHS what we have heard, so we will all improve.

Focus on autism 1

You said

We did

We are telling other parts of NHS England, the Department of Health and organisations involved in training doctors the things we were told. A new person has started working with us on autism- we have shared this advice with her.

So called ‘cures’ for autism

You said

Some people are selling things to parents of children with autism which they are saying will cure them.  Autism is a life-long difference and there is no cure. Some of these things are very dangerous (like using bleach on children’s bodies) and should never be used.

We did

We have shared our notes with the Westminster Commission on Autism who are a government group who are looking at these fake therapies- A spectrum of harmful interventions. We are talking to the NHS.UK website team to make sure they have useful information about fake ‘cures’. Our person in charge of autism is talking with safeguarding leads, to work out what more we can do.

Transforming care (March 2017)

You said

You told us your thoughts about transforming care.

We did

The team working on Transforming Care have taken what they heard back into their work.

Focus on parent carers (March 2017)

You said

You told us what was important to parent carers. And what different groups have been working on.

We did

We put the parent carers who have been working on different bits of the programme in touch with each other and with the children and young people part of Transforming Care.

Complaints and concerns (October 2016)

You said

You told us how you thought we could make complaints and concerns systems work better for people. This helped shape a bigger event about making feedback, concerns and complaints work better for people.

We did

This meeting helped to shape the work on complaints, comments and feedback, now called #AskListenDo.

What the Advisory Group wants to do (October 2016)

You said

At our first meeting you told us what was important to work on. This included:

  • the importance of getting language right,
  • Transforming Care
  • Improving care
  • Issues for autistic people

We did

We have used what you told us to shape future meetings and work.