To make sure that Ask Listen Do really helps people with a learning disability, autism or both we had lots of meetings with people and ran a survey to get people’s thoughts and ideas.

Here are some of the things we found out:

• Nine out of ten people who responded to the survey said they wanted to raise a concern or complaint about the care or support they, or someone they know has received.
• Of the 1288 people who responded to the survey
  • 75 per cent were family members
  • 11 per cent were people with a learning disability, autism or both
  • 8 per cent were paid carers and
  • 5 per cent were a friend or advocate.
• Of the people who have complained, 72 per cent have done so more than once and 19% more than five times in the last five years.
• Of the people who responded 38 per cent said they did not know, and 33 per cent said they sometimes did not know, who to raise a concern with or who to complain to.
• 50 per cent said they did not, and 30 per cent% said they sometimes did not, get good information about how to raise a concern.
• 57 per cent said they did not, and 20 per cent said they sometimes did not, get good information about how to make a formal complaint.
• 54 per cent said it was not, and 21 per cent said it was sometimes not, easy to complain.
• 59 per cent said they did not feel listened to and 30 per cent said they sometimes did not feel listened to.
• 46 per cent said they were not told what was happening, and 36 per cent said they sometimes were not told.
• 72 per cent said they did not feel their complaint(s) has changed the way that the service/organisation works with people because they have not learned from it, and 19% said they didn’t know.

What did people say they complained about?

• Health care (children) 27 per cent
• Health Care (adults) 18 per cent
• Social care (children) 17 per cent
• Social care (adults) 15 per cent
• Education 24 per cent

 Who did people say they complained to?

• Council 18 per cent
• Hospital 14 per cent
• School 13 per cent
• The organisation that provides the persons care and support 13 per cent
• Doctor 9 per cent
• CQC 7 per cent
• Local Government and Social Care Ombudsman 6 per cent
• Ofsted 5 per cent
• Parliamentary and health service ombudsman 4 per cent
• Advocate 4 per cent

Of the people who said they did not complain at all:

• 28 per cent said they did not think it would change anything if they complained
• 26 per cent said they were worried that if they did it might affect how they or their family member were treated.
• 20 per cent said they didn’t know how to complain
• 8 per cent said they thought it would be too difficult
• 6 per cent said they didn’t want to make a fuss