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Striving to make things better for people with learning disabilities and autism through the ‘Ask Listen Do’ project

Following the Winterbourne View scandal six years ago, NHS England set up a collaborative enterprise for families and carers to raise concerns about educational and support services 

Following the Winterbourne View scandal six years ago, NHS England set up a collaborative enterprise for families and carers to raise concerns about educational and support services 

One of the many catastrophic mistakes at Winterbourne View was the care provider’s failure to respond to – or even consider feedback, concerns and complaints about the service.


Clinical lead nurse Sarah Jackson

Following the scandal in 2012, which led to six care workers being jailed, it became clear there was a wider problem with addressing concerns raised about services for people with learning disabilities and/or autism, their families and carers. This eventually led NHS England to set up the Ask Listen Do project.

This project is led jointly by clinical lead nurse Sarah Jackson and learning disability advisor Carl Shaw, who are both from NHS England’s learning disability programme improving health and quality team.

Partnership

They work alongside a delivery group and in partnership with a wide range of strategic partners.

‘Organisations tell us that they have systems in place to listen, but the fact is these are not always accessible, which means they are not listening at all’

Sarah Jackson


Learning disability adviser
​​​​​Carl Shaw

Mrs Jackson explains that when the Ask Listen Do delivery group came together 18 months ago it was in response to families saying they found giving feedback, raising concerns and making complaints difficult, if not impossible.

Repercussions

They also felt that if they did make a complaint it could lead to repercussions for their family member. 

‘The group are from various backgrounds and our mission was to see how we could make things better for families, carers, people with learning disabilities and autistic people,’ says Mrs Jackson.

Online survey

‘We began with an online survey and though we only expected a few hundred responses – almost 1,300 people took part and from the themes that emerged it was clear we had a lot of work to do to.

‘Organisations tell us that they have systems in place to listen, but the fact is these are not always accessible, which means they are not listening at all.’

The respondents to the survey were:

  • Family carers (75%).
  • People with learning disabilities and/ or autism (11%).
  • Paid carers (8%). 
  • Friends or advocates (5%). 

Raise concerns

Most (90%) said they had wanted to raise a concern or make a complaint at some time. But 77% said they sometimes or never knew how to do it. And 72% said they felt their complaint had not made any difference because the organisation had not learned from it.

‘It’s important people are listened to, because if they’re not, it can mean they don’t get the same healthcare as other people’

Carl Shaw

Round table event

On 31 October an Ask Listen Do call to action round table event is being held at the House of Lords. 

As Mr Shaw explains: ‘We’re asking organisations across health, social care and education to sign up to our principles.

‘It’s important people are listened to, because if they’re not, it can mean they don’t get the same healthcare as other people.

‘“Ask” means they must seek people’s views about services. “Listen” means listening through any way that a person wants to communicate. And “Do” means that the organisation acts on feedback to make things better for people with learning disabilities and people with autism.’  

Ask Listen Do: who is involved?

NHS England’s partners on Ask Listen Do include:

  • Association of Directors of Adult Social Services
  • Care Quality Commission
  • Department for Education
  • Department for Health and Social Care
  • Inclusion East CIC
  • Local Government Association
  • Local Government and Social Care Ombudsman
  • NHS Improvement 
  • Ofsted
  • Parliamentary and Health Service Ombudsman
  • PBS4 support group


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