Do you care for a child or young person with a learning disability, autism or both? Have you ever raised a concern or a complaint about the education, health and social care services they receive? And you have been left feeling frustrated by the response you received?

Then you may well be interested in NHS England’s Ask, Listen, Do project which Cerebra is now involved with. The project is aimed at supporting organisations to learn from and improve the experiences of people with a learning disability, autism or both, their families and carers when giving feedback, raising a concern or making a complaint.

The project includes the development of resources to support good practice in organisations across health, education and social care, and guidance for people, families and carers so that they feel empowered and confident to speak up.

The project listened to people’s experiences of giving feedback, raising concerns and making complaints at events all over England. They also carried out a survey which nearly 1,300 people took part in. Some of the main results from this survey were:

• Nine out of ten people said that they had wanted to raise a concern or make a complaint at some time
• Two out of three people said they sometimes or never knew how to do this
• Seven out of ten people said that they did not feel that their complaint(s) had changed the way the organisation supports people as a result.

As a result of the survey Ask, Listen, Do realised that feedback, concerns and complaints systems (and safeguarding and access to justice) do not seem to work as well as they should across education, health and social care for children and adults with a learning disability, autism or both and their families.

That reflects in part their journey through many complex systems in education, health and care and the many barriers and difficulties they face. The systems and processes are also very complicated. There is also not a good enough understanding about how to listen to families or children, young people and adults, and the reasonable adjustments needed to do that. People and their families are often not included or do not feel that feedback and other systems work for them and do not take part in them.

It must also acknowledge a perception that sometimes families can be seen as difficult and challenging, which can get in the way of organisational listening and learning.

Who do they work with? They are working with national partners, including the Local Government and Social Care Ombudsman, Parliamentary and Health Services Ombudsman, Directors of Adult Social Services, Local Government Association, Care Quality Commission, Department for Education and others, along with families and people themselves. The idea is to work together to help all organisations make it easier for people and their families, children and adults, to give feedback, raise a concern and make a complaint and to know that it will make a difference through the Ask, Listen, Do approach.

Ask, Listen, Do are seeking to influence and change organisational behaviours and approaches through the Ask., Listen, Do approach and the help of families, carers and national partners in education, health and social care.

One example already achieved is that NHS Improvement will include Ask, Listen, Do in their new learning disability standards which is to be issued soon. Another example is that the Department for Education commissioned Whole School SEND to work with families and NHS England to coproduce a guide to help make conversations about their children and young people count for all families in all schools. This can be found here.

They have also produced a Top Tips leaflet for families to help empower them in understanding and dealing with these complex systems, and training and other resources to support organisations.

The project is now launching on social media at #AskListenDo and you can find out more about Ask Listen Do on their website.