You said, we did

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


Social prescribing and primary care networks

Social prescribing is where GPs, nurses and other staff refer people to more things than just medicines and treatments. This is because people’s health can be connected to a lot of different things.

Primary Care Networks are groups of:

  • GP practices
  • other health services and social care services
  • local community groups.

We asked the group how we can make social prescribing and Primary Care Networks work for people with a learning disability and autistic people.

You said:

  • Social prescribing is done by link workers. Link workers should start by finding out about the person they are supporting.
  • Link workers need training and guidance on learning disability and autism, including how to communicate best with people.
  • Ask people what they want from social prescribing and what’s already out there.
  • Primary Care Networks need to help health and social care work more closely together. This will help change culture.
  • We need to make it clear how Primary Care Networks will work locally and how we check that they are working well.

We did:

  • We are working with the social prescribing team to use the advice of the advisory group. This is to help them make social prescribing work better for autistic people, people with a learning disability and families and carers.
  • The Engagement Team will work with the Primary Care Networks team. This is to make this work as good as it can be for autistic people, people with a learning disability and family carers.

Read easy read information about social prescribing and Primary Care Networks.

Learning from deaths

We talked about how to can make the Learning Disability Mortality Review (LeDeR) programme better and how we can learn from the deaths of autistic people.

You said:

  • People with lived experience must be involved in local steering groups. Experts by experience need to be given the right support to talk about why people are dying and what can be done to make services better
  • We also need to work with people with a learning disability, autistic people and family carers at a national level so planning is based on what is important to people.
  • Make sure there is support for people who want to talk about death and dying. This includes communicating in the way that is best for them.
  • We need more research to find out why so many autistic people are dying, including in inpatient units.

We did:

  • The LeDeR programme are starting a national steering group of experts by experience, including people with a learning disability, current family carers and bereaved families.
  • The learning disability programme team are thinking about how to find out more about the deaths of autistic people.

Read easy read information about learning from deaths.

Focus on autism 3

Autism is one of the top things in the NHS long term plan. We asked the group what should go in the plan. Read what the group told us about autism in easy read.

You said

  • How to make autism assessment better.
  • How to make the support before, during and after assessment process better for autistic people and their families.
  • What support should be in place to help people avoid crisis.
  • Training for health and social care staff should be co-produced and led by autistic people. This should help lead to a wider culture change.

We did

  • We shared the advice with policy leads to help as they wrote the NHS Long Term Plan.

Read the NHS Long Term Plan.

Watch a video about the learning disability and autism in the NHS Long Term Plan.

Read easy read information about the NHS Long Term Plan.

Ask Listen Do- feedback and complaints

Ask Listen Do is a project that helps people give feedback, raise a concern or make a complaint. Find out more about the project here with Ask Listen Do easy read and video resources. Read what the group told us in easy read.

You said

  • Tell more people about the resources widely and beyond the NHS, to change culture and help people give feedback.
  • Resources in other formats are needed to support the different ways that people communicate e.g. video and apps.
  • Find different ways to change culture and get people to listen.

We did

  • We launched the Ask Listen Do resources at the House of Lords and are publicising the resources.
  • We are working with the Ask Listen Do working group to put the advice into practice.

What’s important to you

We asked the group what the biggest things they’d like to help change. Read what the group told us in easy read.

You said

  • You would like to help health and social care work together better.
  • You would like to improve the culture in the NHS- how we work with autistic people, people with a learning disability and family carers.

We did

NHS.uk website

NHS Digital is making big improvements to the NHS.uk website (used to be called NHS Choices). We asked the group what would make it more useful for people with a learning disability, autistic people and family carers. Read what the group told us about NHS.uk in easy read.

You said

  • How to make NHS.uk useful and accessible for people with a learning disability, autistic people and families and carers.

We did

  • We’ve been working with NHS Digital to make the changes the group suggested, including words that are used and what the pages say. The autism webpages are being reviewed to make them more useful.

Experience of GP services- the quality and outcomes framework

The team which looks at payments to GP surgeries for providing some services, like the annual health check, talked with the group. This team is called the Quality and Outcomes Framework review team.  We talked about the quality of GP services (your local doctor). The group advised what improvements they would like to see for autistic people and people with a learning disability.

You said

  • GPs could get better at supporting people by making reasonable adjustments. These are helpful changes to your healthcare to make it work for you. Awareness training would help.
  • It would be useful to have annual health checks for autistic people as well as people with a learning disability.
  • Support for patient participation groups, to help them involve more people with a learning disability and autistic people.
  • Advice on GP practices working together as networks.

We did

  • The quality and outcomes review team have used the ideas they heard in their review.
  • We are working on ways to ‘flag up’ people’s support needs on NHS computer systems. Read about summary care records and read about summary care records in easy read.
  • The ideas about networks of GPs and patient participation groups are being shared with the new primary care networks.
  • The NHS Long Term Plan says we will test annual health checks for autistic people.

Quality Checkers

The team working on quality checking tools for people with a learning disability to check NHS services asked the group about quality checking mental health services. Read more about the quality checking tools. Read what the group told us about quality checking in easy read.

You said

  • Advised on what would be useful in a quality checking toolkit for mental health services and for assessment and treatment units for people with a learning disability, autism or both.
  • Advised on what might work in quality checking tools for autistic people.

We did

  • The quality checkers team used the advice of the group in the mental health service quality checking tool.
  • The team also used advice to start developing the quality checking tool for specialist mental health services for people with a learning disability, autism or both.
  • We have heard that quality checking could be useful for autistic people too and continue to feed this into discussions about quality and feedback.

Personalisation

You said

  • The group advised on how to make personal health budgets work for autistic people, people with a learning disability and family carers.

We did

Transforming Care evaluation

The Advisory Group told the team who are checking the work of Transforming Care (the evaluators) what they think.

You said

  • More work needs to happen on stopping people ending up in hospitals and assessment and treatment units in the first place.
  • Listen to and involve the person, their family carers in decisions about the persons care.
  • Teach parents and families strategies to help with behaviour.
  • Autistic people’s needs still aren’t being met because not enough people know about autism.
  • It is hard to get an appointment with mental health services. Waiting times are too long.

We did

  • We are using the advice from the advisory group to tell NHS England leadership and Transforming Care Partnerships how to transform care better.
  • Autism will become a focus on its own in the NHS Long Term Plan, separate from learning disability and which will look at how we can work better to meet autistic people’s needs. 

Always Events

Always Events are a way hospitals can improve the care people receive. ‘Always Events’ means two things:

  • The things that should always happen when someone uses a health service.
    People who use the service are the ones who say what the Always Events should be.
  • A meeting where a service works with people to say what the Always Events should be for the service.

Read easy read information about Always Events and a webpage with more information about Always Events.  Watch a video about what the group said about Always Events.

You said

  • Advised on how to make Always Events work for autistic people and people with a learning disability.
  • Advised on how to involve people with a learning disability, autistic people and family carers.

We did

  • We shared the group’s feedback with the people who work on Always Events at NHS England and with all new NHS trusts joining the programme.
  • To help people who are taking part understand Always Events we are improving the easy read information and making a video.

Housing

We talked about planning to spend the Transforming Care money on housing. We asked what is important for the new regional housing leads to know to help people get the right homes locally.

You said

  • Speak to local experts by experience and involve them from the beginning.
  • Start from thinking about supporting people at home. Don’t start from the idea of closing beds or hospitals.
  • Make plans for a person to leave a hospital or assessment and treatment unit early. This will stop delays when they are ready to move.
  • Make sure people get to visit where they are going to live before they move. This will help them feel less worried.

We did

  • This advice was shared with the housing leads at NHS England and the regional advisers at the Local Government Association.