Acting on honest conversations

Two Family Carer Advisers explain how the Ask Listen Do commitment by NHS England is about making it easier for people with a learning disability, autism or both to give feedback about the services they receive:

Ask Listen Do is about organisations committing to learning from people’s experiences and using this to improve their services.

Feedback doesn’t just come from people with a learning disability, autism or both, it also extends to family members, carers or advocates who can supply it on behalf of someone they support.

In October Baroness Sheila Hollins hosted a round table and call to action at the House of Lords with ten organisations from across health, education and social care in England. These organisations listened to the evidence gathered by NHS England, from people with a learning disability, autism, families, carers and advocates about their experiences.

Overwhelmingly, people and families have told us that feedback, concerns and complaints systems and processes does not always work as well as it should.

The ten organisations spoke about all they are doing to address these challenges for people and families, but acknowledged they need to do more. They made specific commitments and signed a call to action. They all have the ability collectively and individually to advocate change and positively influence experiences for people and families.

Some may ask why and if feedback and concerns really matter.

They matter because these are the ways that health, education and social care organisations and their commissioners can learn from the people who use their services. They know if their processes for hearing from people are working and how the services they provide are making a difference to improve people’s lives.

From a safeguarding perspective, this is about organisations taking a proactive approach to preventing harm and supporting people to take control of their own lives.

This is particularly important for those with a learning disability, autism, their families and carers who will often have contact with multiple services – across health, social care and education – over a long period of time as a result of often complex health and other needs arising from their disabilities. We know that people with a learning disability die prematurely for preventable reasons and that there are huge health inequalities that we collectively must address.

Feedback happens every time someone has contact with a practitioner. For example, people might compliment the service received or make suggestions for improvements. For world class organisations which have a culture of listening and learning, these functions should not be seen as separate from day-to-day operations and practice. They are fundamental to quality improvement, personalised care and ultimately, to people’s dignity and human rights.

In addition to the challenges experienced by people having to liaise with multiple organisations and navigate complex processes and systems, people and families tell us that services do not always adapt to meet their needs. Reasonable adjustments are changes that may need to be made to the environment or practice to ensure a person can access the services they need. By law, they have to be considered for those with a learning disability, autism or both and their families when coming in to contact with the NHS, social care and education.

It is not acceptable for a person with a learning disability or autism to be told that they cannot have something, like a blood test, because it is “too difficult”. It is not acceptable that people are not listened to because of a lack of understanding of their or their family member’s disabilities. It is not acceptable for people not get the services they need because of a lack of reasonable adjustments.

Through the Ask Listen Do work, families and people have told us they feel not enough care is shown when they can’t access basic or essential health services or where harm has occurred because they were not listened to and reasonable adjustments were not made.

It is a person’s right to be safeguarded from harm. The Ask Listen Do call to action acknowledges that families and people can sometimes experience being labelled ‘difficult’ or ‘troublesome’ when they try to raise concerns and that organisations can respond defensively and negatively. This must change.

The call to action also includes principles that require the ten signatory organisations and others that sign up to them to, among other things, make sure ‘everyone knows when a concern or complaint is a safeguarding or a criminal issue and what must happen’.

Everyone involved in health, education and social care must take responsibility for asking, listening and doing what children, young people and adults with a learning disability, autism or both and their families need them to do, so that they have good, healthy and fulfilling lives like everyone else.

Mary Busk

Mary Busk is one of two new Family Carer Advisers in the Improving Health and Quality Team, part of the Learning Disability Programme. They are both working on the new #AskListenDo project about concerns and complaints.

Mary is also involved with the children and young people part of the Transforming Care programme. Mary previously co-founded the National Network of Parent Carer Forums and was the Steering Group member for London.

Ted is married and lives with his adult son in Shrewsbury, Shropshire. Ted moved to Shropshire from the West Midlands around 12 years ago.

Ted’s career has been in social work, mainly in mental health and learning disability services in the community and in hospital, though at times also working with young children and their families. Ted moved into the regulation of health and social care where he managed the regulation and inspection of social care services for adults and young children in the local authority and later with Ofsted where he managed one of the regional complaint investigation and enforcement teams. Since then, Ted has worked as an expert by experience with CBF (Challenging Behaviour Foundation) supporting CQC inspections and also with NHS England’s Improving Lives team. Occasional private work includes workplace and family mediation and independent reviews of local authority complaints.

Ted has “a busy home life as you would expect supporting our son who is autistic and has learning disabilities”. He enjoys photography, most things to do with computing and a wide variety of good music of most genres. His family love walking and keeping active and most importantly for them, taking every opportunity to get away on weekends or holiday.

Ask Listen Do is a project to develop a series of resources that will support children, young people and adults with a learning disability, autism or both and their families and carers to feel confident in giving feedback, raising a concern or a complaint about care, education or support so that they feel that their feedback, concerns and complaints are proactively received, listened to and acted on in a timely manner.

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