Raising Your Voice toolkit

Everyone should get the very best cancer care and treatment, no matter what. If you’re worried about the care you’re receiving, or feel you’re being treated unfairly, we can help.

What is the Raising Your Voice toolkit?

The Raising Your Voice toolkit is here to help everyone get equal cancer care as an NHS patient.

This toolkit was designed in London using the English healthcare system.

About the toolkit

This toolkit was formed from a partnership project between Well Versed Ink (CIC) and Macmillan Cancer Support’s London Engagement Team. It is a development from Macmillan’s ‘Mind the Gap: Cancer inequalities in London’ report and conference in December 2019 at London City Hall, as well as the ethnography stories gathered from seldom-heard groups living with cancer. Over the course of ten weeks, the two organisations hosted poetry, storytelling and campaigning sessions with a group of people affected by cancer based in London.

The first half of the sessions were focused on using poetry as a form of self-expression to create a safe space to share experiences and the second half of the sessions were focused on using those shared experiences to co-produce this toolkit.

The participants were mainly from a BAME background and therefore this toolkit has been designed to ensure BAME communities and other seldom-heard groups are able to create a change in their treatment or care without facing discrimination or inequality. While this toolkit was co-produced by a group of mainly Black, Asian and minority ethnic people experiencing issues accessing healthcare, it will be useful for anyone going through similar challenges.

If you have experienced changes, delays or cancellations to your cancer treatment or you are not receiving the care that you are entitled to, this toolkit is for you. If you need assistance using this toolkit or have any feedback for us, we’d love to hear from you at campaigns@macmillan.org.uk.

Understanding your cancer care rights

Do you have questions about your rights as a patient, accessing the treatment you want, or the standard of care you receive?

Read our guide to understanding your rights as an NHS patient.

Challenging conversations about your cancer care

Talking to healthcare professionals about cancer can be difficult. We have tips on getting the most out of consultations, writing letters to professionals, and preparing for a difficult conversation.

Read our information about challenging conversations.

Cancer support groups

There are many support groups across the UK and online to help you if you have concerns about your care or how you’re being treated.

Find out your cancer support group options and how to get in touch.

Contacting your MP about your cancer care

If you continue to have difficulties with your cancer care, you may wish to contact your local MP. Your MP could help in a range of different ways and it can also be a powerful way to share your story and experiences.

Follow our step-by-step guide to talking to your MP.

Empowering ways to drive change in your cancer care

At Macmillan Cancer Support, we work with Government and politicians across the UK to improve care and support at every stage of the cancer journey.

We encourage people living with cancer to share their experiences to help drive that change. Here are some of the ways you may be able to resolve issues you are facing in your cancer care or treatment or help others in the future.

Engage with your local politicians

The relevant decision makers will be different depending on which area you live in.

For example, in London, the Greater London Authority is made up of the Mayor of London, the London Assembly and City Hall. The Assembly investigates issues of importance to Londoners such as health, publishes its findings and recommendations, and makes proposals to the Mayor.

You could write to an Assembly Member to tell them about the issues you are facing in your cancer care and treatment and to ask them for help or to investigate your issues.

Some Assembly Members represent all of London, while others represent specific areas.

Use social media

Social media accounts have the potential to reach a wide audience.

You can use Instagram to connect with people through photos, videos and captions to share your story and raise awareness of the issues you are facing.

Twitter allows you to connect with key people such as MPs and hospital board members. You can use the platform to share text, photos and videos.

Write a blog

Free blogging sites like WordPress are great tools for you to share your cancer journey with other people. Sharing your story through blogs can help raise awareness of the issues you are facing and help you escalate the situation further.  

Kris Chadwick, one of the co-creators of this toolkit and founder of Chadders' Cancer Club, shares some advice about blogging and how it empowers her when facing challenges in her cancer care and as a carer.

"Traditional blogs are relatively low in reach & people have to Google keywords or have the link to come across your blog. But as my blog reached more people, opportunities arose to get my message to people with whom it could resonate." - Kris Chadwick

Kris's top tips for writing blogs

'In 2020, I was approached to speak at a palliative care conference as a result of someone reading my blog. Through this, I was able to share a patient and carer's perspective of uncertainty in cancer directly to the doctors who are on the frontline of providing cancer care.' — Kris Chadwick
  • Blogger and WordPress are both free blogging sites. WordPress has more functionality than Blogger.
  • Blog regularly. Set a routine to post on the same day at the same time.
  • A good length for a blog post is around 750 words.
  • Blog posts should include an image and links to previous posts from your blog as well as external links.
  • If you have a story or experience to share but you’re not sure about starting your own blog, then you could write a guest blog for an existing charity or cancer support group.
  • Quote reputable sites, those based on science and research like Macmillan or Cancer Research UK.

You can watch Kris's video Uncertainty, Another Symptom of Cancer on YouTube.

 

Contact local newspapers

MPs and local decision-makers such as NHS leaders will often read local newspapers to see what is happening in the local area. Sharing your story with a local paper might help you escalate your situation and resolve your issue.

If you are a blogger you could repurpose a popular blog post about your cancer journey to include the issue you are facing and send this to a local newspaper. If you do not want to write an article or press release yourself, you can contact Macmillan to possibly share your experience with the media team.

Find support in your community

Support networks within your local community can be used to help you resolve issues you are facing in your cancer care or treatment.

If you are involved with any local groups or communities, such as a religious group or sports team, you can ask to speak at one of their meetings about your cancer journey and the issues you are facing to raise awareness with the public.

You can include some information about the issues you are facing in any messaging that goes out to the group, for example in a newsletter.

If people wish to support you, you can ask them to write to their MP to ask them to support your requests, such as writing letters to your hospital about your treatment.

If you find other people in your local community who are experiencing similar issues in their cancer treatment or care to yourself, then you could unite to start community organising. The more voices that speak about an issue, the more likely it is to change.

Get involved with craftivism

Craftivism is a type of activism that uses different forms of craft, such as knitting or crochet, to influence decision-makers. The crafts encourage people to engage thoughtfully with issues to reflect on the key problem statements and to converse with other campaigners.

The crafts can then be put up in people’s home windows and shop fronts, or even sent to decision-makers directly. Using social media and the a hashtag will help you to promote your craftivism more widely.

If your craftivism is popular in your local community, your local radio station or newspaper might want to do a piece on you.

Campaigning with Macmillan

Macmillan Cancer Support campaigns to help people living with cancer live life as fully as they can. Find out more about how our work makes a difference.

  • Sign up to become a Macmillan Campaigner

    As a campaigner, you will be joining a network of people across the UK campaigning for people living with cancer. By signing up we'll keep you up to date with opportunities to take action and the latest news from our campaigns.

    Sign up as a campaigner

  • Share your story on Macmillan’s Storybook

    Macmillan's Storybook is a place for people living with cancer and affected by cancer to share their stories as part of The Forgotten 'C' campaign. If you feel empowered by this toolkit and want to share your story, you can add your story to our Storybook.

    Share your story

  • Macmillan Digital Storytelling Project

    This is a series of online workshops supporting people affected by cancer to share their stories online. These stories are then turned into a video format, to create a powerful visual representation of people’s stories.

    Find out more

  • Contact the Campaigns team

    Contact the Campaigns team to share your experiences, issues or concerns regarding the toolkit.

    Email us