Our COVID-19 survey: what you told us and what we're going to do

As we move into winter we know there's still much uncertainty around COVID-19 and what that means for people affected by bowel cancer. That's why we recently ran a survey to hear from you about how you're feeling and what we can do to support you.

We had an amazing response in just the short space of time that the survey was live, so thank you so much for taking the time to share your thoughts and experiences with us.

We want to share with you some of the key things you told us, what we're currently doing to support you and our plans for the future.

What you told us

On a scale of 1 to 10 for how concerned you were about COVID-19 at the moment, the average score was 6.75. This clearly shows there's still a fairly significant concern amongst those affected by bowel cancer and it's something that continues to worry people. The top three issues that you told us were of most concern were other people not wearing masks, delays/cancellation/changes to treatment and surveillance and getting COVID-19.

We also wanted to know what you would you like to see from us over the coming months and gave you a number of different options to choose from. The number one thing, by a significant margin, was to see us campaign for bowel cancer diagnosis, treatment and care to become a priority for the NHS as it begins to rebuild cancer services after the pandemic.

Finally, we asked you to tell us the one thing we could do to help and support you right now. There were some clear themes in your answers, including campaigning on your behalf, supporting you while you're having fewer face to face appointments or having issues accessing your GP, and providing health information on different topics related to bowel cancer.

What we're going to do

First of all we want to remind you that we're here for you. We're determined to save lives and improve the quality of life of everyone affected by bowel cancer and you're at the heart of everything we do. We're working hard to address your concerns and want to outline just a few of the ways we're supporting you through these uncertain times and beyond.

We provide expert information and support for everyone affected by bowel cancer and we're constantly evolving and developing our services to make sure we best meet the needs of everyone affected by bowel cancer.

Here are just some of the ways we can help:  

• Take a look at our range of information about bowel cancer
• Order or download our free publications
• Join our online forum for everyone affected by bowel cancer to ask questions, read about people's experiences and support each other
• Contact our nurses if you have any questions or concerns
• Join one of our support events
• Read stories of other people affected by the disease
  
  

Since the pandemic started we've had a dedicated coronavirus section on our website which we've kept updated to make sure you, your friends and family have the latest advice and updates on how COVID-19 is affecting people with bowel cancer. We're looking at the specific suggestions you made in the survey and are working on creating new, more specific support for common issues at the moment, such as approaching telephone appointments and accessing your GP. We also have a news section on our website where we publish press releases, responses and comments which you might find useful, and you can always find up to date information on our social media channels.

Another one of our main areas of work is campaigning for early diagnosis and access to best treatment and care. We have a dedicated policy and campaigns team who work across all four nations of the UK to make the voices of people with bowel cancer heard, raise awareness of the issues affecting you and influence change within government and the NHS.

We're meeting regularly with NHS and Government leaders to discuss the current situation with cancer diagnostic and treatment services to ensure that they remain a priority throughout the winter and a key focus for the recovery and restoration of the NHS. We're also responding to consultations to inform their reports and strategies on the impact of the pandemic on bowel cancer and how best to tackle the cancer backlog particularly in diagnostic services.

We're working in coalition with other cancer charities to ask the Government to provide sufficient funding to the NHS to get through the backlog and invest in the cancer workforce and kit to improve earlier diagnosis and cancer outcomes in the future. We're also working closely with other charities to raise the concerns of those who are immunosuppressed to the Government and we're meeting with the Vaccines Minister soon.

In addition, we sit on boards, committees and advisory groups to help inform the implementation of new tests into the NHS and hold the NHS to account on how to optimise the bowel cancer screening programme.

In future, we're going to do more to tell you about our campaigning work and how you can get involved.

We know the pandemic has been an incredibly tough and isolating time for many and there's still much uncertainty and concern. Thank you again to everyone who took part in the survey, your voice has been heard. Together we can drive positive change for everyone affected by bowel cancer.