Improving experiences and outcomes for children and adults who are autistic or have a learning disability, their families and carers
Ask Listen Do resources are designed to:
- support organisations to listen, learn from and improve the experiences of children and adults who are autistic or have a learning disability, their families and carers
- make it easier for people, families and paid carers to give feedback, raise concerns and complain.
What people told us
Ask Listen Do came from the poor experiences people reported when giving feedback, raising concerns and making complaints. We ran a survey in which nearly 1,300 people took part. Some of the main results from this survey were:
- Nine out of 10 people said 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 10people said that they did not feel that their complaint(s) had changed the way the organisation supports people as a result.
We also carried out events across England where we asked people for their ideas about what needs to change and advice they could share with others.
Find out more about what people said about feedback, concerns and complaints. See the principles of Ask Listen Do below.
Why it matters
The NHS constitution and values are grounded in equality and human rights laws which say everyone has the right to good quality services, person-centred care and support. Children and adults who have a learning disability or are autistic often have more health inequalities than other groups, which are unfair, sometimes life-shortening, differences that could be avoided.
History shows that people with a learning disability and autistic people can be at increased risk of harm through institutional abuse or neglect, giving organisations an absolute duty to encourage the reporting of, and response to, concerns.
Ask Listen Do means doing things differently so people who have a learning disability or are autistic get their right to high quality, safe care and equal access to services. This is about ensuring people, their families and staff are truly listened to and have their concerns acted on.
This is a service development improvement plan (SDIP) for all providers who offer services to people with a learning disability, autism or both (including children and young people) to set out how the provider will use the Ask Listen Do resources and embed the practice into how the provider supports people with a learning disability, autism, or both, and their families and carers, to provide feedback on services and to raise a concern or complaint.
Ask Listen Do resources for people and families
- Resources for autistic people and people with a learning disability
- Top tips for family carers
- Resources for families to use with schools
- Ask Listen Do film for people and families
Ask Listen Do resources for organisations
- Information booklet and checklist for organisations
- Co-production guide using an Ask Listen Do approach
- A training film for organisations
- Oliver McGowan Mandatory Training refers to Ask Listen Do. It is for all registered service providers and NHS healthcare staff can also access it through ESR (Electronic Staff Record)
To raise a concern or complain:
Always raise any concerns first with the people providing the care, such as the manager of the service, and/or the Patient Advice and Liaison Service (PALS) for hospital care. Services want to improve and should make everyone feel it’s OK to raise a concern. Do say if you think somebody is not safe.
Or you can speak to the commissioner or case manager who organised the NHS care being provided. NHS England or your local integrated care board (ICB) (see below) should be able to help if you are unsure who the commissioner is. If you or someone you know is unhappy with the way your concern is handled, you can complain.
Integrated care boards commission primary care services including GPs, dentists, opticians or pharmacists.
NHS England commission prison, military and some other specialised health services.
Find out about concerns and complaints to NHS England or contact your ICB for concerns or complaints about primary care, secondary care, such as hospital care, mental health services, out-of-hours services, NHS 111 and community services like district nursing. Every ICB will have its own complaints procedure, which is often displayed on its website.
The NHS website has more advice about how to complain and who to contact. The Ask Listen Do booklets also help with each stage from feedback, to concern or complaint.
Finding an advocate
If someone needs help to complain, they can ask for an advocate. An NHS complaints advocate is independent of the NHS and may help with writing a letter, going to a meeting, or explaining what options are available. This service is free to anyone making a complaint about their NHS treatment or care. It should also cover NHS funded care in independent hospitals or services (you may already have an advocate in a mental health hospital).
Local Healthwatch can help you find independent NHS complaints advocacy services in your area. Or contact social services at your local council and ask about advocacy services.
If you have a concern about the care of a person with a learning disability or autism that no one else can answer, please email: firstname.lastname@example.org
Ask Listen Do principles
|The organisation asks people about their experiences and makes it easy for people to do this by making the reasonable adjustments needed.||The organisation really listens to what has been said and is not defensive.
|The organisation does something positive about it in good time and tells the person what they are doing to put it right, in a clear way that is right for the person.|
|The organisation makes sure that the person, their family and advocate know how to give feedback, raise a concern and make a complaint.||The organisation and staff have the skills to listen and understand what it feels like for the person.
|The organisation learns from the feedback, concern or complaint and changes things so the service can improve.|
|And that people feel able to speak up when they have feedback, a concern or complaint.||The organisation improves its services by working with the people that use them, listening to and learning from people’s experiences.|
|Everyone knows when a concern or complaint is a safeguarding or a criminal issue, and what must happen.|
Related information and resources
- The Care Quality Commission cannot help with individual concerns or complaints, but they welcome people’s feedback to help them see how well a service is doing. Visit Declare Your Care to leave good or bad feedback about a service.
- If someone’s care is unsafe, it might be a safeguarding concern. The NHS Safeguarding app is a resource for healthcare professionals, carers and citizens. It provides information, guidance and help with reporting a safeguarding concern. It can be accessed via Apple iOS, Google Playor by visiting your device’s appropriate app store and searching for ‘NHS Safeguarding’.
- NHS England has published a co-production resource toolkit to support involving people and families in service design.
- Disability Matters is a free e-learning resource for the UK workforce.
- Keeping in Touch with Home is a resource about keeping children with a learning disability in residential settings and their families in touch.
- The NHS Patient Safety Strategy sets out how the NHS will support staff and providers to share safety insight and empower patients and staff to be part of improving safety.
- NHS England has published guidance for NHS workers on freedom to speak up to build a more open culture, learning and improvement, safer care and treatment and improved patient experience.
- See the NHS Long Term Plan for wider NHS work to address health inequalities.
- Paula McGowan: Ask Listen Do: Oliver’s Story
- Simon Knight: Working together to help children
- Ted Goodman: Putting together two views to get the whole picture
- Mary Busk: Staying healthy and connected when caring for someone with learning disability and autism
- Ofsted blog: Ask Listen Do
- Mary Busk and Ted Goodman: Acting on honest conversations
- Parliamentary and Health Service Ombudsman (PHSO) – Ask Listen Do: Putting our commitment into action