Update: Shaping the future of our services

We also wanted to find out what was worked well about the support they used, from Breast Cancer Now and other places, and what support they wanted but couldn’t get.

Along with Voices we asked our service users and anyone with a primary or secondary breast cancer diagnosis since 2019 to tell us about their experiences. Over 500 people completed the survey across the UK.

What we found out 

The survey results supported some of our existing knowledge and told us new things, including:

• The most common issues people faced were anxiety, low energy, sleep problems, low self-confidence and body image
• People often felt clueless. They didn’t know what questions to ask or were left not knowing what to expect
• 1 in 5 people didn’t have any friends or family available to support them

• 1 in 3 people didn’t have needs assessed during diagnosis or treatment
• Older people (over 70) were significantly more likely to say that none of their needs were assessed compared to people under 45.
• People want information about the support available to them at all points in the diagnosis and treatment stages
• 1 in 5 said they lacked confidence to access more information. For people under 45, this rose to 1 in 3
• Many people felt they weren’t able to talk to someone who properly understood their situation

Differences in experiences

The survey findings also told us about the very different needs and experiences people have. For example:

• People from ethnic minority groups and people living with secondary breast cancer were less likely to be told about support services.
• People with primary breast cancer were more likely to find it easy to find information about support services than those with secondary breast cancer
• Asian and Black people were significantly less likely to say that it is easy to find out information on support services.
• Younger people (under 45) were significantly more likely to look at information online compared to older people (70 and over)

 The support people want

Finally we explored the kinds of support services people wanted to use and how they wanted to use them

• Most people wanted face-to-face to support and many thought that one-to-one support would be helpful
• Local support was seen as very important and people would travel up to 30 minutes to get to that support
• Older people were significantly less likely to seek emotional support than younger people
• 8 out of 10 people hadn’t had support would’ve liked to get information or emotional support from an organisation. Many people wanted this kind of support at diagnosis

Next steps

We’ll use these findings to help us understand what people need in terms of information and support. This will help us develop and expand our existing services. We’ll also look at how we get the word out about those services and how we help healthcare professionals better meet the needs of their patients.

We’ll be finding out more about the experiences of four groups specifically:

• people living with secondary breast cancer
• people from Black communities
• people from Asian communities
• people aged 70 and over

We’ll be sharing opportunities for Voices to get involved in this work. So keep your eye out for opportunities to help us make our services and information better for people diagnosed with breast cancer.