New Report Finds People Struggle To Share Experiences of Health and Social Care

Wed,13 March 2024
News Health & Social Care
People are more likely to feedback about commercial services and products than their experiences of health and social care, according to new research by the Care Quality Commission (CQC) and health and care champion Healthwatch England (HWE).

The research, published today, is part of a new Share for Better Care campaign launched by CQC and HWE in collaboration with the Race Equality Foundation, the National Dignity Council, Royal Association for Deaf people, National Voices, Challenging Behaviour Foundation, the Patients Association, VoiceAbility and Disability Rights UK. The campaign aims to encourage everyone to give feedback on their experiences of care, focusing on people more likely to experience poorer care and inequalities who are less likely to give their feedback.

CQC and Healthwatch surveyed 2,000 people to find out about habits for giving feedback on health and social care services, with nearly half (43%) of participants identifying as being from minority communities or backgrounds, and/ or had one or more protected characteristics.

More than half of people surveyed (54%) said they find it easier to provide feedback about their experiences of commercial products and services such as hotels or meals, compared to providing feedback about health and social care. Despite over two-thirds (72%) of people saying they feel health and social care services are a priority for them, only 2 in 10 (20%) said they had given feedback in the last 2 years.

When asked why they hadn’t fed back about their experiences of care, over a quarter (26%) said they thought their feedback would not be listened to, 1 in 5 (22%) said they worried it would have a negative impact on their care; and a further fifth (21%) said they didn’t want to cause a problem for the people caring for them.

People also said sharing feedback about commercial products and services was less emotionally taxing (18%) and less personal (26%) than sharing on health and social care experiences. They felt feeding back commercially was often quicker and had more available options to do so. The research also found that many opt to confide in their family (15%) or a friend (14%) about a negative experience within health and social care, while only 10% told the service directly.

Chris Dzikiti, director of Mental Health, said: “People have the right to feedback about their experiences of the health and social care services and we want them to feel safe and secure to do so. The care system must get better at encouraging people to feedback and taking positive action as a result. We need people's experiences to understand the quality being provided and develop a clear picture of their care, and challenge the poor care where we find it.

“Over half of people (52%) surveyed said they see giving feedback as a form of generosity, and 62% of people said they would be more likely to give feedback if they knew doing so would help make positive change and support their local community including local public services. Through our new campaign Share for Better Care, we want to encourage people to extend their generosity to giving their valuable feedback where it counts most.’’

Louise Ansari, Chief Executive at Healthwatch England said: "Public feedback on care is vital in helping NHS and social care staff identify and tackle safety and quality issues. But these findings make clear that some people do not feel able to share their experiences. We need to change this.

"Whether your experience of care is positive or negative, I urge you to speak up. Only by hearing your stories can we help shine a light on what is working and what is not and ensure that everyone gets the quality of care they are entitled to.

"All too often, we find some services have overlooked the needs of specific communities because their experiences are either not known about or have been overlooked. The simple act of sharing feedback can help change this and enable services to improve care for you, your family and your community.’’

Michael Paul, head of Engagement at Disability Rights UK, said: ‘’It’s vitally important that Disabled people feel empowered to provide feedback on the care they receive, and how they can do so. Disability Rights UK have a long standing relationship with the Care Quality Commission, and have seen first hand the positive impact on services when feedback from Disabled people is acted upon. We’re delighted to continue this relationship through Share for Better Care, so we can work together to improve Disabled people’s experiences of services.’'

Jabeer Butt Chief Executive of The Race Equality Foundation said: ‘’The research suggests that there are a number of reasons why people do not give feedback, but we would argue that at the core of all these reasons is trust. If people trusted that they would be listened to then they would feedback, similarly if they trusted that they would not be disadvantaged, they would feedback. Importantly, we know trust is something that can be developed through clear communication, being transparent in the decision-making process and putting people at the centre of how we organise and deliver support.

Our experience in working with people from Black, Asian and minoritised ethnic backgrounds is that trust is often the key to improving experiences of services. Hopefully by developing trusting relationships we will also do better in securing feedback from all.’’

Julie Ratcliffe, Royal Association for Deaf people, Chief Operating Officer said: ‘’The Royal Association for Deaf People (RAD) are proud to be working in collaboration with the Care Quality Commission (CQC) and Healthwatch England on the Share for Better Care campaign. Our participation supports our unwavering commitment to advancing accessibility and inclusivity in healthcare for the deaf community.

At RAD, we understand the importance of ensuring that the views of deaf people are understood and valued in healthcare settings. Through this campaign, we are dedicated to supporting the opportunities to feedback by the deaf community, thereby contributing to a healthcare system that prioritises the needs of all individuals.

Together with our esteemed partners, we aim to ensure every individual feels empowered to share their healthcare experiences. By advocating for improved accessibility and understanding, we can collectively drive positive change, ensuring equitable care for all. We are passionate about this campaign and supporting CQC and Healthwatch England as we work towards a healthcare landscape that is truly inclusive and responsive to the diverse needs of every individual. ‘’

Jan Burns, MBE, Chief Executive, the National Dignity Council said: ‘’The National Dignity Council believe that care should be delivered with kindness, respect and compassion. We are delighted to be working collaboratively with CQC and other partners on the Share for Better Care campaign as this is an invaluable opportunity to provide people with a platform to express their personal experiences of the care they have received. Feedback serves as a direct measure of the quality of care provided, offering insights into areas where improvements may be needed to ensure that all individuals receive care that respects their inherent dignity and fulfils their fundamental human right to being afforded kindness, respect and compassion.’’

Jacob Lant, Chief Executive, National Voices said: “We are excited to be working with the Care Quality Commission, Healthwatch England and a range of other brilliant partners on the Share for Better Care campaign.

It is one of our core beliefs that the voices and experiences of people accessing health and social care services are vital for making sure these services work well for everyone. This is especially important for people experiencing health inequalities. The Share for Better Care campaign will encourage people to share their experiences, and be heard when they do, to enable services to better understand and meet the needs of everyone.”

Vic Cooper, Chief Executive of Challenging Behaviour Foundation, said: ‘’Services are in place to meet the needs of individuals and it is essential that their views, needs and experiences shape and influence those services. It is possible to gather the views and experiences of individuals who are not able to complete surveys, be interviewed or attend focus groups and we need to ensure that we work proactively and find ways to ensure those experiences are captured and acted on.’’

Rachel Power, the Chief Executive of the Patients Association said: “We’d encourage patients and carers to share experiences of their care with the CQC whether those experiences have been good, middling or bad. Feedback offers vital intelligence to the CQC and NHS organisations on what services need to do to improve and also what works well. Sharing poor experiences can provide essential warnings about a service where things might be going wrong, which would enable the CQC to take action. Good experiences offer insights into what a good service does.

“The CQC’s research among patients shows several reasons why people don’t want to share their feedback and we understand how difficult it can be for some people to share experiences that have been difficult. At the Patients Association we can support patients and carers to share feedback of health and social care with the CQC and to do that anonymously if that’s their preference. We’re just a free phone call away and our helpline team will support patients through the process of sharing their care.”

Jonathan Senker, Chief Executive of voice and rights charity VoiceAbility, said: "The insights from the Care Quality Commission and Healthwatch England highlight the need for change so health and social care organisations better hear people’s voices to improve delivery and outcomes.

“VoiceAbility is enthusiastically supporting the Share for Better Care campaign, as we know that no public organisation can get things right by the people they’re here for without genuinely listening to people’s experiences. And we understand that people who feel the most marginalised and ignored often have the most valuable perspectives to share.

“Getting and acting on feedback must never be about going through the motions, nor is it only about changing written policies — important though that is. It’s about affirming dignity, ensuring respect and learning how to deliver support differently in the future.

“Sharing experiences and stories is a powerful tool for change, paving the way for better support. That can only happen if health and social care organisations truly value feedback, energetically seek it, and vigorously embrace what it tells them to change.”

Share your experiences of health and adult social care, with lived experience informing changes to social care.