Improving support for people affected by breast cancer

What’s the title of the study?

The CASCARA study (Costs and Supportive Care in Breast Cancer)

What’s the study about?

Over the past couple of years, researchers across the UK have been conducting the CASCARA study (Costs and Supportive Care in Breast Cancer). This study looked at what help people with experience of breast cancer and their families need but don’t always get. 

The researchers found that many people had problems such as

• Expensive or limited insurance
• Not enough sick pay or time off work
• Finding it hard to book appointments with their GP or breast cancer team
• Struggling with childcare and care for elderly family members
• Lack of mental health support for themselves and their families. 

The researchers are now holding workshops to bring people together to come up with ideas for how the NHS and government can better support people with breast cancer and their loved ones.

Who’s organising it?

Name of project lead: Patrick Kierkegaard

Job title: Research Fellow

Organisation: Institute of Cancer Research & Cancer Research UK Convergence Science Centre

Email address: p.kierkegaard@imperial.ac.uk

Who can take part?

You can take part if you you’ve had a diagnosis of breast cancer, including 

• DCIS 
• Stage 2 or 3 primary breast cancer 
• A local or regional recurrence of primary breast cancer 
• Secondary breast cancer 

Or, if you’re a family member or friend who’s cared for someone with breast cancer. This includes mental health support and caregiving responsibilities. 

Why do you want me to be involved? 

By sharing your story and experiences, you can help the researchers understand current gaps in the healthcare systems and what practical improvements could have supported you.

The researchers hope to identify important policy-level improvements the NHS and government can make to improve quality of life for people affected by breast cancer.

What will you ask me to do?

You’ll be invited to take part in 2 online focus group (1.5 to 2 hours long) and complete 2 voluntary short surveys (5 to 10 minutes) after each focus group session.

There is a 3-week break between each focus groups. The focus groups will be hosted in late April to May. You’ll be asked for your availability and the researchers will do their best to find a time that works for everyone.

In the focus group, the researchers will share what they’ve learned so far and ask you if it matches your own experiences. They want to hear your ideas on how the NHS and government can do better.

To thank you for your time, you’ll be offered £50 compensation for each of the focus groups (£100 in total). 

Please be aware that any payments or vouchers may be considered as earnings by the Inland Revenue, and there may be associated tax implications. If you are receiving benefits you may need to notify the Jobcentre about this activity. 

If there are any tax or benefit implications for you, you can let the researchers know. You’ll have the option of asking for payment at a lower amount or declining any payment and offering to volunteer instead.

How do I get involved?

To take part, please fill in the online expression of interest form. The participant information sheet and consent form are at the beginning of the form. 

When’s the deadline?

29 April 2025