Something's Not Right - Campaign Activities

It’s time for change

Mission Remission is a grassroots charity of cancer survivors campaigning for change that will help to ensure faster diagnosis.

We hope you’ll add your voice to our call: Something’s Not Right!

What’s the issue?

Thousands of people die due to cancer diagnosis delays in the UK every year (CRUK). Children and parents, friends and family… cancer delays devastate each and every one of us indiscriminately.

But if other developed countries can treat people quickly (The Lancet), why can’t we?

Even before the pandemic, over 50% of cancer patients are not referred along the cancer pathway and are not flagged by GPs as ‘urgent’ (Public Health England research).

Cancer Research UK figures from last year showed almost a quarter (22%) of new cancers are diagnosed in A&E, often at a late stage. Every month that treatment is delayed raises the risk of death by 10% (BMJ).

The current strategy is to tell people to look out for cancer signs and see their GP straightaway to get diagnosed with cancer - this is not enough.

Part of this problem is the significant information gap around patients’ own role along the path to diagnosis.  In our November 2021 survey & workshops of 350 cancer survivors we found:

Mission Remission’s Five Priorities For Change:

(Our full manifesto can be downloaded at the bottom of the page.)

1.Strategic Change: Make improving the ‘patient journey’ to diagnosis (and dismantling barriers) a strategic priority, with a focus on communication and navigation.

2.‘Dismantling Barriers’ Workstream: In co-production with patients, identify barriers to diagnosis nationally and locally – and dismantle them. 

3.Communication & Navigational Tools: Create patient empowerment tools and embed these in local communities.

4.Address Inequalities & Care for ALL patients in Performance Data: Reduce the time to diagnosis for ALL patients, not just urgent referrals.

5.Practical Steps: ‘Next Step’ discussions must be an explicit part of every GP interaction, e.g. when do we return if symptoms don’t clear up?

What we’ve done about it

We were delighted that the Guardian shared Laura's story, why she founded Mission Remission, and details of our wider early diagnosis campaign.

But we've been busy far beyond this and we wanted to share our campaigning work and big wins: 

Campaign Development

• Call for Support – In early 2020, we developed a call for support for our ‘Something’s Not Right’ campaign, a collaboration between patients, clinicians, and policy makers which developed our theory of change to speed up cancer diagnosis
• Surveys & Workshops – In 2021, we launched our Path to Diagnosis survey & ran patient workshops on how the path to diagnosis could be improved.
• Campaigning Training – Laura attended a five-day campaigning course run by the Sheila McKechnie Foundation where she met other inspirational campaigners and learnt the many ways of impacting change. (It was only a few days after her latest cancer surgery and they helpfully adapted things around it. If you’re interested in campaigning, definitely check them out!)
• Community Building – We have grown our volunteer team, so that over 45 people meet monthly and a larger group of 126 get involved with our work. Our wider community now stands at over 15,000.  
• Funding – Laura won £3,500 funding from Sheila McKechnie. Mission Remission was given a kind donation of £2,500 following Telegraph publicity.

Changing Policy

• NHS England National Leads – We met with the Early Diagnosis Lead spearheading earlier diagnosis strategy and the Engagement Lead, spearheading national public messaging on cancer signs. We are continuing to collaborate with them to move forward with our calls for change.
• Parliamentary Coaching – We received support from a parliamentary outreach officer on how to influence policy change through political routes
• Politicians – We’ve contacted Boris Johnson, Keir Starmer, Sajid Javid, and Jeremy Hunt to share our survey results and call for change. So far, only Jeremy Hunt has responded, with assurance that he would consider it in their diagnosis review and Sajid has invited us to meet. 
• NHSE's Cancer Patient Forum - We met with Ceinwen Giles, Chair of the Patient Forum to discuss our calls to change. She is exploring ways to support through the forum and we are meeting their Engagement Manager. 
• Submitted a response to Department of Health & Social Care's 10 Year Call for Evidence - We submitted our recommendations for change - for early diagnosis, improving the experience of cancer, and support to move forward. 

Projects

• Symptom Diary – 66% of people felt that keeping a diary of symptom changes would help them to feel more confident sharing symptoms with their doctor - yet only 20% of people keep a diary. To support people to diagnosis, we developed our symptom diary tool: https://www.mission-remission.com/symptom-diary 
• Craftivism – Using the art of craft and gift giving, we are exploring new ways of improving relationships with people and their clinicians. We approached a local council to fund a pilot project.
• Dorset – We were thrilled to be awarded funding to run a social media outreach project to help Dorset people to diagnosis: https://www.mission-remission.com/dorset-something-not-right
• Hackney – We ran a large patient experience project in Hackney, asking people what they wanted to see change about cancer services. We co-produced 16 recommendations for the local area, including a call for more control & support around diagnosis. The NHS found our project to be 'detailed, meaningful, and powerful... the most comprehensive patient experience project they've ever been involved with.' The recommendations for diagnosis were:  

1. ▪ Awareness Campaign: People need to feel trusted and perceived as the expert in their own body. People would benefit from an awareness campaign encouraging them to say, ‘Something’s Not Right’. This would build public confidence that doctors will take concerns seriously.
2. • Patient-focused Guide: People would benefit from a clear guide to cancer diagnosis within the GP setting. This guide would include information such as: how to book an appointment; what to say to receptionists; when to return if symptoms don’t clear up; how to seek a second opinion; how to log symptoms; the difference between cancer symptoms & bodily changes as a consequences of foreign travel; which changes warrant a cancer referral; what steps are involved for diagnosis; and how long they’ll wait for each step along the pathway.
3. ▪ Supportive Relationships: Some people in the area have supportive, trusting GP relationships. Work needs to be undertaken to explore what these relationships look like so that everyone can feel the security of this type of relationship. It would give people to confidence to seek help sooner.
4. Patient Mentoring: GPs would benefit from patient mentoring to help develop in this way – perhaps by working with PRGs.

Press & Publicity

• Guardian - Laura was interviewed about the founding of Mission Remission and our campaign: https://www.theguardian.com/society/2022/apr/27/cancer-survivor-laura-fulcher-campaign-better-care
• Daily Mail Symptom Diary piece – Our symptom diary reached over 300,000 people following our Daily Mail collaboration: https://www.dailymail.co.uk/health/article-10179213/How-keeping-diary-symptoms-save-life.html
• HSJ piece – We were delighted that the HSJ featured our campaign: https://www.hsj.co.uk/quality-and-performance/patients-are-being-excluded-from-shaping-the-cancer-recovery/7031919.article
• Press Relationships –The Telegraph commissioned three comment pieces through the pandemic to champion patient issues and we are working on building relationships at the Guardian.

Collaborations

• Cancer Alliances – In a bid to work with the NHS to speed up diagnosis, we contacted every Cancer Alliance across the country. Alas, we did not hear much back, but approaches to Alliances continues and we are thrilled to be working in Dorset & Hackney.
• Macmillan – We met with Macmillan’s national Policy Advisor. While traditionally, speeding up diagnosis has not been one of Macmillan’s strategic priorities, Clare was really supportive and has offered introductions to regional Macmillan colleagues.
• Other Grassroot charities – We are reaching out to other grassroots charities and would love to hear of others keen to collaborate.

Next Steps

• Guide to Diagnosis – We developed a Guide to Diagnosis that explains each step along the journey, with ideas on how to navigate barriers. We would like to finish the design work for the guide and launch nationally.
• Advocacy Support - We hope to run drop-in sessions and one to one support for those struggling to navigate to a diagnosis and feeling 'lost in the system'.
• CRUK – We’ve been trying to identify the best person to collaborate with at CRUK. We’d be grateful for any introductions.
• Brest Cancer Now – Over many decades, fantastic breast cancer campaigners have done such a great job that those with breast cancer symptoms have their own dedicated (speedier) pathway. We’d love to find out how this came about and what could be learnt from their campaigning.
• Early Diagnosis Outreach work – Building on the work in Dorset, we are planning on seeking further collaborations with Community Foundations in the areas that we work.
• Political Campaigning – Jeremy Hunt is the MP for the constituency of one of our trustees. We will seek a meeting to discuss our calls for change.
• National Press Release – Working with a PR specialist, we will launch a national press release of our survey results, so that tools to diagnosis are shared across the country.
• Investigative Collabs - Explore interests of investigative journalists around delayed diagnosis & whether we could work together e.g. BBC
• Build a Clinical Team – Widen our clinical involvement and build a clinical supporter team for our work, so that outreach work is delivered to health providers - applying for funding for a facilitator to organise this group. 
• Develop further grassroots collaborations - Reach out to other grassroot movements and charities - lifting others up and hoping they lift us too
• Develop community – To help us further develop our grassroots community, we plan to apply to national lottery for a Chief Organiser in 2022.
• Our basic Mission Remission funding runs out in November, so we are exploring ways to continue campaigning for earlier diagnosis.