Encouraging everyone to give feedback on care

Understanding lived experience

Gaining feedback and involving service users is vital if we want to improve the care, information and support we provide. But people often find it easier to provide feedback on commercial services like hotels than health and social care.

If we are to improve services, tackle health inequalities and overcome systemic injustices, we need to empower everyone to share their experiences. We need to make sure those with lived experience know their insight is valued and valuable.

So, how do we encourage patients, service users and carers to share feedback?

Encouraging feedback

In recent years we have seen increased awareness of the importance of making information and support materials health and digital literacy friendly. However, invitations to provide feedback can be inaccessible while complaints procedures are often complex and time consuming. This risks further disempowering those most at risk of health inequalities. Trust can also be a barrier, particularly among communities with a history of harm from the healthcare system.

To start building trust and making feedback mechanisms more accessible you can:

• Work with trusted community partners to share feedback options.
• Clearly explain the process in plain language.
• Provide translated or culturally-appropriate materials if needed.
• Thank those who give feedback for their time.
• Make sure you apply learning to service design and outputs.
• Share the impact of feedback with users.

Feedback in NHS settings

Feedback is invaluable at every stage of care provision – from initial service and information design to informing iterative improvements.

The NHS must ensure it gains informed consent from patients before they undergo procedures. The use of the PIF TICK certified EIDO procedure-specific information library is mandated by the Welsh Risk Pool for NHS Wales. Healthcare professionals are encouraged to share patient feedback to improve people’s experience of informed consent and expectations of procedure.

A separate PIF and Patients Association co-production project sought feedback from a panel of local people with experience of waiting for joint replacement and other surgeries. Their insight was used to inform the development of new information resources and the design of a feedback survey which used simple emoji scales.

When feedback is given it must be acknowledged and acted upon. The Maternity Decisions: Being Induced Survey found, when women shared their concerns about induction, their fears were often dismissed. This led to them feeling patronised, and sometimes even coerced, into decision making.

Working with seldom-heard groups

Some groups may need more support than others to share feedback. We are currently creating translated materials as part of a project aiming to tackle maternity health inequalities in Sussex.

Many of the women the project aims to support do not speak English well or at all. They may also be at risk of digital exclusion and have limited knowledge of healthcare systems.

To ensure materials meet the needs of women from diverse backgrounds, we held two workshops in community settings in collaboration with trusted local partners. One session was also attended by an interpreter to ensure women who did not speak English well or at all could share their views. This approach offered us unique insights which we would not have gained from online feedback approaches.

Share for better care

Everyone should be empowered to share their experiences of care, information and support. It is our responsibility as organisations to remove the barriers which prevent this from happening. We also need to ensure feedback themes are identified and acted on or people soon disengage.

The Share for Better Care campaign, launched by the Care Quality Commission and Healthwatch England in collaboration with National Voices and a range of other excellent partners, aims to encourage everyone to give feedback on their experiences of care.

Share your experience of care via the CQC website here.

Biography

Sheena Campbell is communications manager at the Patient Information Forum (PIF) – the membership network for cross-sector health information producers. The PIF TICK is the only independently assessed quality mark for print and digital health information. Sheena delivers training and edits guidance on topics including plain language, health literacy and user involvement.