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We need to hear ALL voices on cancer care

Today marks the start of a two-month promotion to encourage more people to give feedback about their cancer care and treatment. NHS England’s Head of Insight and Feedback tells us why it is important to hear from a diverse range of patients in surveys and feedback:

In the weeks ahead, invitations to participate in the country’s biggest cancer care survey – the National Cancer Patient Experience Survey – will start dropping through letterboxes across England.

These go out to a representative sample of people aged 16 and over who had a confirmed primary diagnosis of cancer, and who were discharged after treatment as an inpatient or day case patient between April and June this year.

We write to these people – in the region of 110,000 of them each year – and invite them to give feedback about their experience of treatment, either by completing a paper questionnaire or an online form.

About two-thirds of people reply overall. But we’d like to hear from more because it provides a richer picture of what’s working well and what can be improved.  The more voices we hear, the more our cancer services can understand what’s important to everyone and – just as crucially – what is distinct for people from different backgrounds that could be defined by their race, religion or culture.

Typically, around 7,500 people from BME communities who identify as other than white British respond to the survey each year and we would like more of those who are invited to take part.

There are two reasons why this is important:

  • We hear from fewer people from BME communities to the survey than is the case for white British people, although this varies by BME groups. Although going on for two-thirds of white British people respond, responses are significantly lower for others and particularly from people who identify as Pakistani, Bangladeshi, Caribbean and African.
  • Those who do respond generally describe having had a worse experience than white British people. This is the case for those people who describe themselves as Asian, Black, Mixed, Other White and Other. They report being less likely to have been involved in decisions about their care and less likely to have received an explanation of treatment that they understand. By getting more feedback, providers would have a fuller picture of the range of experience. They would better understand the issues and be better informed to take action to improve things.

There is a lot of work going on to address this but, in the meantime, it’s important just to raise awareness of how people can give feedback and the emphasise that it’s harder to fully  understand and act on inequalities if the picture we get is not as clear as it could be.

From today until mid-December, we’re asking healthcare providers, charities and community organisations to help raise awareness about giving feedback on cancer by displaying posters and using social media and newsletters to guide people to a web page about the various ways to give feedback.  Of course, not everyone who has cancer treatment is asked to take part in the annual survey but there is a range of other ways to share their experiences and the page explains how.

If you can help spread the word, please do. Email with the title ‘CancerBME’ to england.insight-queries@nhs.net for details of how to order or download posters and access social media resources, or join the conversation on the Twitter hashtag #DiverseNHS.

Cancer doesn’t care who you are as an individual; it doesn’t see the individual needs and circumstances of every person.  But the NHS does and we can get better at providing services that take account of those if we hear everyone’s voice.

Clare Enston

Clare Enston is NHS England’s Head of Insight and Feedback. Working alongside NHS Improvement, the Care Quality Commission and the Department of Health and Social Care, she leads on ensuring the views and experiences of patients and staff England are captured in order to drive improvements in patient experience and outcomes.

Clare’s team also explore new areas of insight not supported by the current national survey programme, along with developing thinking on insight and feedback approaches in the healthcare system.

Prior to joining NHS England in 2013, Clare worked in both the customer service and civil service sectors before moving into the work of NHS service improvement – latterly at Yorkshire & Humber Strategic Health Authority, where she had a regional role in health informatics.

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