Why feedback about cancer care is important
Feedback from people who have experienced cancer care and treatment is a vital part of improving services. It helps to identify what’s working well and what needs to be improved. That makes things better for everyone.
Reducing health inequalities in cancer care
People have individual needs and expectations when they have cancer treatment. Sometimes the things that help make them who they are – their religion, race, culture, language, gender, age, health conditions or other factors – can mean they have particular needs.
Services want to understand how these individual factors are affecting people’s treatment experience. Getting your feedback is an important way to do that.
Across the board, people from black and minority ethnic (BME) backgrounds are under-represented in responses to national surveys about cancer. Where they do respond, the data suggests they have a worse experience than other people.
The NHS is keen that more people from these backgrounds take part in giving feedback so that health services can understand where things need to improve.
How you can give feedback
There are a number of ways people can give feedback and all of them are important to the NHS in understanding people’s experiences of cancer treatment.
National Cancer Patient Experience Survey -
Every year, NHS England runs a large survey, inviting a sample of about 120,000 people who recently had cancer treatment in hospital to take part. It is called the National Cancer Patient Experience Survey. This year the survey will invite a sample of people who have had treatment in April, May and June 2018 to give feedback. Questionnaires are posted out from late autumn onwards and the findings of the research are published in summer 2019.
About two-thirds of people reply overall, but responses are lower from people from BME backgrounds compared to white British people. To encourage more people from BME backgrounds to take part, the invitation pack includes information about completing the questionnaire online or over the telephone via a free helpline. A translator can be provided for people who prefer one. People can also ask a friend or family member to help them complete the form as long as the responses are about the patient’s care.
Questions include those about how and when people’s cancer was diagnosed, how involved they felt in decisions about their care and treatment, how much information they were given, whether they were treated with dignity and respect, and experiences of the level of support given by various NHS services and by social services.
The findings for each area allow healthcare providers and commissioners to see how they are doing and where they need to improve. National data help track how much progress is being made on objectives set out in the national Cancer Strategy Implementation Plan.
Not all people who have had cancer treatment will be invited to take part in this major national survey, but there are other ways you can give feedback on your experience of care.
As in all NHS national surveys, your personal information is handled securely. No information is published that can identify you.
GP Patient Survey -
More than two million people who are registered with a GP practice in England are invited to take part in this survey every year.
It covers topics like how easy it is to make an appointment, convenience of opening hours, quality of the consultation, and the extent to which people with long-term conditions feel supported in their care. The survey asks whether the patient has had cancer in the last five years, so that the experiences of these patients can be compared with the experiences of others, and this information is used to identify any areas that need to be improved.
The survey helps to identify any differences in the experience of individuals that might be linked to their individual characteristics - such as their race, religion, gender and so on – so it is important that we hear from people from all backgrounds. We help people to take part by offering a range of ways to complete the questionnaire, such as large print, braille and completion in 14 other languages.
Other national surveys –
The Care Quality Commission conducts other surveys through the year that might include people who have had cancer treatment. These include the Adult Inpatient Survey and the Emergency Department Survey. If you are invited to take part, please take the opportunity to have your say.
Friends and Family Test -
The Friends and Family Test is a quick and easy way to rate and make comments about your experience of any part of the NHS, including cancer services, at any time. You don’t have to give any personal information. Services use the feedback to drive ongoing improvements in what they do.
You can find out all about the Friends and Family Test and see a video about how it works.
Local research -
Most healthcare organisations undertake their own research about their services to fill in any gaps in the information available from national surveys and feedback, or to probe particular issues more deeply.
You could be invited to take part by completing a questionnaire or talking about your views in a focus group.
If you want to talk to someone about how you can get involved, you should contact the Patient Advice and Liaison Service (PALS) at the hospital where you have been treated.
If something has gone wrong in the way you have been treated, you can consider whether you want to make a formal complaint about it.
There is a standard way to make a complaint about an NHS experience.