Something’s Not Right
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?
The Bleak Facts
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 reserach).
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 ➡️
Take Action
1. Become a Changemaker
Support our five calls for change with our Changemakers
2. Become a Mission Remission Member
Join the team and become a member:
3. Let’s chat!
Talk to us! If you’d like to chat about how we can work together to get people diagnosed quicker:
Support Our Five Calls for Change
1. Dismantling Barriers workstream
Working with patient groups, identify the barriers to diagnosis nationally and locally (by trusts, ICSs, and Cancer Alliances). Invest in dismantling these barriers, using commissioning arrangements such as CQUINS.
Our community have faced many traumatic experiences of isolation, pain, and life-limiting damage as a consequence of barriers to diagnosis. This is intensified for those who experienced delays in every interaction with clinicians – of which there are many stories, particularly from younger people.
Currently, dismantling these barriers is not a priority for the NHS – it does not feature as a priority in strategic policy and there is no workstream dedicated to this aim. You’ll find more on the types of barriers people face further down the page.
Dismantling Barriers – what helps?
Clinical Relationships
- A trusting relationship with a dedicated GP
- A GP explaining what symptoms to look for
- Not feeling there to be barriers in appointment booking
- An active GP helping to chase tests and scans
- GPs who could pick up symptoms that people couldn’t put into words
- Being introduced to a clinical nurse specialist ASAP
Support during procedure
- Pain relief for diagnostic procedures
- Watching the scan on a screen and having it explained
- ‘Being caught while falling’ – Staff noticing vulnerabilities during/after procedures
- Clinicians talking to patients, not to each other
Providing Empowering Information:
- How to prepare for GP appointments
- Understanding the most important things to share
- Knowing what you can ask for and using NICE guidelines
- Taking pictures of symptoms and tracking changes using a symptom diary
- Understanding the first diagnosis/ treatment isn’t the last
- Knowing when to return if symptoms don’t clear up
- Other ways of communicating with GPs, e.g. writing letters, emails, and messages on the NHS App
- Having the confidence to ask for a second opinion
Fostering Community & Family Support
- Hundreds of people state that they required family supportin order to champion themselves to return to GPs or attend hospital.
2. Patient Empowerment Tools & Fostering Support from Families & Communities
Provide patient empowerment tools, with a focus on the integral role that families & communities play
It’s not always as simple as telling people to go see their GP to be diagnosed with cancer.
Patients have a role to play too and need tools and information to understand how to communicate with and navigate health services. This includes:
Symptom diaries:
Help people keep a cancer diary to communicate with their GP precisely & with confidence. (Mission Remission has a ready-made diary.)
Guide to diagnosis:
Provide a simple guide describing how to communicate with and navigate the NHS, and how to overcome barriers at each stage
Social Media Outreach:
Share patient diagnosis tools, information and peer support to bolster community resilience on pre-established Facebook groups
Advocacy:
Running drop-in advocacy sessions & peer support to stop people feeling ‘lost in the system’ by helping them navigate to the next steps of diagnosis
Relationship development:
Helping people build supportive relationships with their GP and reduce avoidant health behaviours
Transparency & Collaboration:
NHS plans often highlight new funding for patient groups to support people to diagnosis. We have contacted all parts of the NHS and every Cancer Alliance to submit an application for this funding – we are told the funding does not exist, or people are not aware of where it might be held.
3. Make ‘Next Step’ Discussions an explicit feature to every GP appointment
– End every GP appointment with ‘next step’ discussions, i.e. when to return if symptoms don’t clear up and what to do if their condition worsens.
– Record these on a patient’s digital record so they can be viewed on the NHS app.
65% of cancer patients are not clearly instructed to return to their GP if symptoms don’t clear up (Mission Remission 2021 survey).
The ’watch and wait’ policy, the first GP response for many, makes people feel uncertain of how long to wait. Many already wait months before going to see the GP. People feel uncomfortable about pushing for more support when no referral to specialist care is mentioned or offered.
People often accept the first treatment and diagnosis as the final one. If they’ve received a possible (but incorrect) explanation for their symptoms, it can make them reluctant to return.
There is no system of escalation when people do return.
4. Include all patients in performance data and improvement work
– Address inequalities in cancer diagnosis. Improve strategy so that it does not exclusively focus on those privileged to be referred ‘urgently’
– Make Performance Data inclusive with a target that tracks all cancer patients, not just the minority who are referred along the cancer pathway.
Routes to Diagnosis –
GPs can refer patients to hospitals through different routes. One of them is the rapid cancer pathway, which usually means you get to see a specialist within two weeks. Public Health England found that, even before the pandemic, more than 50% of cancer patients were not referred along this pathway or flagged by GPs as ‘urgent’.
Inequalities in Investment –
Most investment in cancer diagnosis is focused on the cancer pathway, which means less than 50% of people are benefiting from these funds.
For example, the Faster Diagnosis Standard works to ensure the people who are referred urgently are treated even faster.
Inequalities in Improvements –
The current performance data also tracks these figures. (e.g. the 62 day wait target and the 28 day wait target).
National learning and local decision-making revolve around these targets. This means that improvement work excludes most people with cancer and does not speed up the diagnosis for those most in need.
5. Strategic Change
Make ‘improvements to the patient journey’ a core priority in NHS strategy documents, explicitly focusing on communication and navigation
Our community tell us that the NHS must improve the patient journey to diagnosis.
Health leaders have been talking for decades about the need to improve communication and the way people navigate the NHS, yet this is not a priority in NHS policy and strategy. Instead, NHS strategy focuses primarily on clinical innovation and improving processes, as follows:
NHSE Earlier Diagnosis strategy:
There are 6 strands to this strategy, yet none of them focus on the person’s own role in communicating and navigating the system.
Faster Diagnosis Standard:
This is exclusively process-focused not person-centred. Again, there is no focus on the role a patient plays, nor of the barriers people face in communication, navigation, and relationship-building.
If you’d like to read the full report, along with our Guide to Diagnosis, just add your email below and we’ll send it over 💪
The Types of Barriers People Face
Barriers When Seeking Support:
Returning from overseas:
People were told that bodily changes were caused by changes to diet and lifestyle
No clear GP treatment pathway:
The ’watch and wait’ policy, the first GP response for many, makes people unsure how long to wait for, particularly as many already wait months before going to see the GP.
‘Imagined’ Women’s Experiences:
People shared the legacy of being treated as ‘hysterical’ over decades, or that clinicians had implied their experiences were imagined. Even if doctors no longer treated them as such, there was a legacy of a lack of faith and trust following these interactions
Childbirth & Periods:
Many women felt discouraged from seeking help because GPs had not acted on issues with periods and post-childbirth in the past
Tracking Changes:
Many felt it was difficult to track abdominal changes, not realising cause for concern
Barriers from GP Resource issues:
NHS Capacity:
People felt that clinicians did not have the capacity to help them, partly caused by communication issues and pandemic messaging.
Bookings:
Booking system challenges and communicating with receptionists caused barriers to booking non-urgent appointments.
Barriers in A&E
Lack of empathy:
People shared feeling isolated and unheard when they went to A&E, made worse by the fact that the majority of people had already sought support from the GP.
No healthcare knowledge:
A&E was confusing for those with little prior experience of healthcare and they were not sure what to expect or ask for.
Barriers When Talking to Clinicians:
‘GPs Know Best’:
People expected GPs to lead th conversation, didn’t volunteer information and expected to be asked about specific symptoms.
Mistaking first-line treatments as final:
People often accepted the first treatment and diagnosis as the final one.
Making a fuss:
People, particularly from minority backgrounds, did not like to ‘make a fuss’ or discuss health issues with others. People feel uncomfortable to seek more support when no referral to specialist care is mentioned.
Feeling a nuisance:
People felt ‘encouraged to believe there was nothing wrong with them’. They were worried they would receive the same response again and so were reluctant to return.
Barriers for Diagnostic Tests
Disability Access:
Scans and procedures are not always accessible to people with disabilities.
Caring Needs & Carers
Caring needs are not always met.
Navigational Barriers:
People feel it is their responsibility to organise diagnostic tests, but do not understand the system to do so.
Overwhelming Diagnostic Procedures:
Lack of support and pain medication discouraged people.
No-one to help:
People spoke of the difficulties in finding the right people to help. Medical secretaries didn’t always having the power or time to pass issues along.
In this world of guidelines and pathways there’s a worrying loss of trust. We don’t give importance to what patients are saying, or how they feel about their own body. We’re losing trust in the clinician’s art or skill too. With the forms and checklists, the words ‘something’s not right’ fall between the cracks. Referrals get downgraded, quite literally, because the computer says no.’
