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Organisations have legal and statutory duties to ensure that children, young people and adults have equal access to services. This means providing specific support to people and families to ensure they are not disadvantaged by issues relating to disability. These simple principles can help organisations and practitioners meet their duties and improve how they deal with feedback, concerns and complaints in health care, social care and education for autistic people, people with a learning disability and families:
- The organisation asks people about their experiences and makes it easy for people to do this.
- The organisation makes sure that the person, their family or advocate know how to give feedback, raise a concern and make a complaint.
- People feel able to speak up when they have feedback, a concern or complaint.
- Everyone knows when a concern or complaint is a safeguarding or a criminal issue, and what must happen.
- The organisation really listens to what has been said and is not defensive.
- The organisation and staff have the skills to listen and understand what it feels like for the person.
- The organisation does something positive about it in good time and tells the person what they are doing to put it right.
- The organisation learns from the feedback, concern or complaint and changes things so the service can improve.
- The organisation improves its services by working with the people that use them, listening to and learning from people’s experiences.
There is a range of Ask Listen Do resources for anyone who handles feedback, concerns and complaints. These resources help providers understand the issues that autistic people, people with a learning disability and families face. They also offer practical advice which can be used in staff training, for example, to understand more about reasonable adjustments and the difference they can make.
- NHS England has worked with Speakup self-advocates on a range of information for use by autistic people and people with a learning disability. This includes ‘top tips’ booklets and two ‘universal’ feedback, concerns and complaints form which organisations can adapt for their own use. One is an easy read form designed with people with a learning disability, the other has been designed by and for autistic people.
- We have also worked with our partners to produce an information and training booklet that can be used by health, social care and education organisations. This booklet covers legal obligations and good practice across health, social care and education. As well as practical information and advice about how best to support people and families, the booklet outlines how organisations can drive cultural change in this area.
- Families and paid carers have worked with NHS England to produce a booklet offering advice and information for carers.
- The Ask Listen Do training film for health, social care and education organisations and practitioners is a short and enjoyable introduction to the topic. It provides an insight into the issues faced and how for example reasonable adjustments can help. Essential viewing for anyone who handles feedback, concerns and complaints.
Ask Listen Do film for health, social care and education organisations and practitioners
We have produced an awareness raising film for health, social care and education organisations and practitioners which will make giving feedback, concerns and complaints easier for people with a learning disability, autistic people, their families and carers.
There is also an easy read leaflet about the Ask, Listen, Do project and its aims.
How can you get involved?
Organisations are asked to support the principles of Ask Listen Do in the following ways:
1. Use the resources
- Visit www.england.nhs.uk/asklistendo for links to booklets for people, families and organisations. There are also links to a film for people and families, and a staff training film for organisations. You can use them and this leaflet in your meetings.
2. Ask a leader in your organisation to be a champion for Ask Listen Do
- This is to make sure your organisation is committed to making a difference.
3. Set up Ask Listen Do meetings
- Meetings should be with people who use your service, families and other carers or support staff. Find out what reasonable adjustments people would like. For example, easy read or a quiet room, or timing meetings around caring responsibilities.
- Ask people about their experiences. Decide together what will make things better, and how people can be involved. Doing this together, from start to finish, is true co-production. Co-production is better than consultation.
4. At your meetings
- You may need more than one meeting, as different groups of people may have different needs.
- At your meetings, you can ask people:
- What’s working about our service for you?
- What’s not working?
- Have you raised this with us before?
- What could have made it easier?
- How can we make sure your voice is heard?
- How can we plan and improve things together?
5. Keep people involved throughout
- How can you involve people in making the changes you need? How can people help to train your staff about learning disability, autism or how to make reasonable adjustments? Could you set up an expert advisory group?
6. Tell people what you have done and what difference it will make
- For example, hold an event, do a newsletter, a display in your reception area, or ask your group to tell a friend. Ask your group to design your publicity. Share on social media or in your emails
- You can use the Ask Listen Do logo, create weblinks or download the resources to your websites, and add them to your communications. See an example on the Barts Health NHS Trust website.
7. Keep it up
- Keep checking you are still getting it right with people.
- Use the checklist on pages 17/18 in the Ask Listen Do booklet for organisations, to help you with this.
Here are some blogs written by people with first-hand experiences of the challenges faced giving feedback, raising concerns and making complaints across education, health and social care and also some solutions about how to make conversations count between people and professionals.
- 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
The Ask Listen Do project is supported by:
- NHS England and NHS Improvement
- Local Government Association
- Local Government and Social Care Ombudsman
- Association of Directors of Adult Social Services
- Parliamentary and Health Service Ombudsman
- Department for Education
- Department of Health and Social Care
- Care Quality Commission
- Health Education England
- Nursing Midwifery Council
Embedding Ask Listen Do within NHS England and NHS Improvement
The principles of Ask Listen Do are included in:
- The NHS Improvement Learning Disability Improvement Standards
- The NHS England Learning Disability Mortality Review Action from Learning report
- The NHS Long Term Plan Implementation Framework
Ask Listen Do complements the cross-system Quality Matters initiative aimed at improving the quality of adult social care, in particular through its work to improve feedback, concerns and compliments processes.
The following organisations have agreed to pilot the principles of Ask Listen Do in the following ways:
NHS England Customer Contact Centre
The Customer Contact Centre is actively involved in shaping the Ask Listen Do project and has applied the principles to its own work by adapting its webpages to make them more accessible and by creating an easy read leaflet explaining how to give feedback or make a complaint about healthcare. Staff have also advised on and taken part in two awareness raising films. One is for complaints handlers across education, health and social care and the other is for people with a learning disability, autistic people, families and carers.
Watch the film for people with a learning disability, autistic people, families and carers:
Watch the film for health, social care and education organisations and practitioners:
Barts Health NHS Trust
This project is about working with families of children and young people with a learning disability and autistic people to address their priority areas for improving access to and experiences of health services in local acute hospitals.They went to families in local Parent Carer Forums and asked them what they wanted. They wanted:
- A dedicated blood test clinic where longer timed appointments can be booked, blood is taken in a private room and multiple appointments are given when needed. This has been achieved.
- A leaflet has been coproduced with family carers on what they would find useful to know when they attended hospital and this and other materials have been added to the website.
- Walkabouts involving people with learning disabilities and family members to assess and improve environments. These have begun.
This has led to wider work with families to ensure their voices are heard in other service developments and to wider work with many other services within the hospital.
Whole School SEND
The Whole School SEND project is about enabling conversations between families and schools, with sampled questions for families to use to support this, to improve learning and life outcomes for children and young people with a learning disability and autistic people and wider SEND. This work was coproduced with families from Bringing US Together, the National Network of Parent Carer Forums. Contact and other groups and funded by Department for Education.
Hertfordshire County Council
Hertfordshire have identified that Ask Listen Do can be used to support a more listening and learning culture with families. They have identified Ask Listen Do champions in SEND services to help lead and bring about a change in culture so that they speak to, listen to, learn from and act on what families say.
Hertfordshire Parent/Carer Involvement (HPCI) parent representatives are already involved in various committees (Local Offer) and worked as partners on this from the beginning. Services listened to the feedback from families and recognise the need to change. There is a need to undertaking more personal interactions to avoid misunderstandings. Links with health services are also being developed.
The pilot within the SEN team has had strong leadership and been known as “Pick up the phone – make conversations count”. Communication champtions have also been nominated in the staff team. They are all working to improving communication, to motivate staff and increase the confidence of parent/carers in process.
Dimensions is a voluntary sector provider of personalised social care services for people with learning disabilities and autism, including challenging behaviour and complex needs. The Ask Listen Do principles are now part of their Concerns, complaints & compliments policy and Employee induction and management training.Reports are sent under the headings, explaining how the principles were supported, and what change happened as a result. They want everyone to use the same language – Ask Listen Do – so everyone knows what to expect and what they need to do.
KeyRing is a small national charity supporting over 1000 vulnerable adults from all sectors of society to be as independent as they possibly can be. The KeyRing project, is to help people understand how they can raise issues and have a dialogue to make their feelings known about their service.
Keyring is working in co-production to help people they support know more about feedback, concerns and complaints. They are asking and listening to what people say in order to improve their support. Ask Listen Do feedback, concerns and complaints forms for autistic people and people with a learning disability are being adopted and rolled out to replace existing paperwork. Staff are also being better empowered to support members throughout.
PBS4 is a not-for-profit social enterprise committed to providing bespoke personalised support for people with learning disabilities who may be described as challenging. We support people to live in their own tenancies, avoid breakdown of their support and prevent hospital admissions.
PBS4 have reviewed their feedback and complaints policy so it reflects the principles of Ask Listen Do. They have a range of feedback methods available to remove barriers, and have produced easier read versions of “how to give feedback or make a complaint” leaflets and have created a guide for families. PBS4 have developed an engagement plan with the people they support and their families that outlines how they will check with them they are happy with the service they provide and how they will ensure they are seeking, receiving, and responding to concerns and complaints.
PBS4 have also registered as a Third Party Hate Crime Reporting Centre so they can enable people to identify hate crimes and take action to stop this, including supporting them to report it to the police.
The Voluntary Organisations Disability Group (VODG)
VODG is a membership body representing organisations within the voluntary sector who work alongside disabled people. VODG hosted a roundtable which explored the issues that providers face and the steps they can take to improve people’s experience of raising a concern about the service they, or someone they care about, receives.