1 in 7 respondents (15%) to our Improving Brain Tumour Care survey last year had to wait more than six months to get a diagnosis after first seeing a healthcare professional about their symptoms – with 1 in 10 (10%) waiting over a year to be diagnosed.
We know this has to change and that’s why we’ve developed our new Fighting for Faster Diagnosis report. As well as explaining the significant benefits of faster diagnosis, the report lays out eight recommendations for how policy makers in Government and the NHS can help speed up diagnosis times.
What we’ll cover in this article:
- What is Brain Tumours: Fighting for Faster Diagnosis?
- Why are we campaigning for faster diagnosis of brain tumours?
- What are we asking policy makers to do?
- How can you help us fight for faster diagnosis?
What is Brain Tumours: Fighting for Faster Diagnosis?
Brain Tumours: Fighting for Faster Diagnosis is a report we’ve written in partnership with a range of experts in the field of brain tumours – from healthcare professionals, clinicians and researchers to patients and their loved ones.
In the report, we go into great detail about the benefits that faster diagnosis can have for people experiencing symptoms of a brain tumour and identify eight recommendations that policy makers could take that we believe would lead to improvements in the speed of diagnosis for patients.
Why are we campaigning for faster diagnosis of brain tumours?
Simply put, a faster diagnosis means that treatment, care and support can be provided at the earliest opportunity – potentially leading to people living better lives after their diagnosis.
This could provide a whole host of benefits from improved health outcomes and increased emotional well-being to greater opportunities to participate in research and better care experiences.
You can find out more about why we’re campaigning for faster diagnosis of brain tumours by reading our blog post on the subject.
And, if you want to learn more about why we’re campaigning for faster diagnosis rather than earlier diagnosis, you can read our joint blog post with brainstrust.
What are we asking policy makers to do?
After consulting with experts, we’ve put forward eight policy recommendations that policy makers in Government and the NHS could take to create change in public policy. We believe that with these recommendations, people would receive their brain tumour diagnosis faster – hopefully improving their experiences and quality of care.
1. We want brain tumours to be meaningfully included in each devolved nation Government’s ambitions to improve early detection of cancer.
Unfortunately, the UK Government’s ambitious targets for cancer detection are all based on conventional cancer staging. However, some cancers don’t follow conventional cancer staging – for example, brain tumours are graded 1-4 rather than being measured in stages.
This essentially means there are no formal ambitions to improve early diagnosis of brain tumours as there are for other cancers.
We want to see clear targets being set for cancers that don’t follow conventional cancer staging, as well as the development of proxy measures to monitor progress towards these targets, for example, the proportion of emergency diagnoses or average time to diagnosis.
To find out more about this read pages 8-9 of our full Brain Tumours: Fighting for Faster Diagnosis report.
2. We want the NHS must make sure that all general practice clinicians can access readily available training on the signs and symptoms of a brain tumour.
We’d like to include partnering with The Brain Tumour Charity’s Better Safe Than Tumour campaign to share among healthcare professionals.
To find out more about this read pages 27-28 of our full Brain Tumours: Fighting for Faster Diagnosis report.
3. We want the NHS to trial the implementation of a timed safety netting process for people experiencing brain tumour symptoms, and a clinical decision support tool for consultations that flags potential brain tumour symptoms to GPs.
Safety netting can help make sure someone returns to their GP practice if their symptoms worsen or if they start experiencing new symptoms. Safety netting can be as simple as providing clear instructions about when someone should book a follow-up appointment or electronic safety netting tools could be used to automatically invite people back to the clinic to be assessed again.
Clinical decision support tools could also potentially help by flagging to healthcare professionals when the combination of symptoms someone is experiencing could be possible signs of a brain tumour.
To find out more about this read pages 29-30 of our full Brain Tumours: Fighting for Faster Diagnosis report.
4. We want the Government to make sure there is appropriate funding going towards the development of clinical triage tools to detect brain tumours.
Currently, the only way to detect a brain tumour is by using an MRI or CT scan, but there are resourcing and capacity strains across the NHS – including diagnostic staffing for these machines.
Having different tools and tests could greatly benefit GP practice staff, even if it just means they’re better equipped to identify when someone is at a higher risk of having a brain tumour and therefore needs an urgent referral for an MRI or CT scan.
There’s currently some preliminary research being doing on triage tools for brain tumours, for example, the Verbal Fluency Test led by Dr Paul Brennan, and we’d like to see the Government make sure there’s appropriate funding for the development of these tools.
To find out more about this read pages 32-33 of in our full Brain Tumours: Fighting for Faster Diagnosis report.
5. We want the NHS to make sure that universal direct access to MRI and/or CT scans for GP practices across all of the UK is achieved.
Everyone who receives a brain tumour diagnosis will first need an MRI or CT scan, so we greatly welcomed NHS England’s commitment in November 2022 that every GP team would be able to directly order CT scans, ultrasounds or brain MRIs for people experiencing concerning symptoms.
However, we know that for this to be universally available there needs to be sufficient investment in the NHS workforce so there enough radiologists and neurologists to run the scanners and provide the reports – as well as time for GP’s to support people after receiving the results. It’s also vital that sufficient numbers of scanners are available to support this initiative.
GP teams should also be provided with any training they need to be able to interpret radiologists’ reports so they’re able to provide the most appropriate support or referral for people after identifying an abnormality on their scan result.
To find out more about this read pages 38-39 of our full Brain Tumours: Fighting for Faster Diagnosis report.
6. We want the NHS to develop a Best Practice Timed Pathway in England and an Optimal Cancer Diagnostic Pathway in Scotland for brain tumours.
Pathways for people experiencing suspected brain tumour symptoms can be unclear and varied. People can experience multiple different referrals depending on where they live, how well recognised their symptoms are and whether they presented at A&E, a GP practice, an optometrist or elsewhere.
A potential solution to this are the Best Practice Timed Pathways that NHS England are developing. These are being set up by NHS England for all cancers, looking at how best to make sure someone receives a diagnosis as quickly as possible.
In Scotland, they’re developing something similar called National Optimal Cancer Diagnostic Pathways – although these are more tailored to local delivery structures.
We’d greatly welcome specific pathways being developed for brain tumours as soon as possible. We’d also like to see these pathways being developed in partnership with The Brain Tumour Charity, other brain tumour charities, a range of different healthcare professionals as well as patients and their loved ones.
To find out more about this read page 40 of our full Brain Tumours: Fighting for Faster Diagnosis report.
7. We want NHS England and Scotland to widen the list of non-specific symptoms (NSS) that warrant referral to the NSS pathway so that they include more potential brain tumour symptoms.
The non-specific symptom (NSS) referral pathway exists in England so GPs can refer people experiencing vague or non-specific cancer symptoms (such as fatigue, unexplained weight loss or nausea), as well as if the GP has a gut feeling that somebody may have cancer. This can help people visit their GP practice fewer times before being referred for tests.
The NSS pathway has great potential to benefit people experiencing symptoms of a brain tumour, but at present the symptoms simply aren’t wide enough. Unfortunately the vague or non-specific cancer symptoms included in the NSS pathway don’t include many of the vague or non-specific symptoms associated with a brain tumour.
Expanding the referral criteria to include more of the vague or non-specific symptoms associated with a brain tumour will ensure more people experiencing these symptoms will be referred through this pathway.
To find out more about this read pages 40-41 of our full Brain Tumours: Fighting for Faster Diagnosis report.
8. We want NHS bodies across the UK to develop a recommended optometry pathway for people with a suspected brain tumour.
Another way that people are commonly diagnosed with a brain tumour is through their local optometrist. This is because brain tumours can affect someone’s sight, so people often make an appointment with an optometrist first rather than a GP. Also, primary healthcare professions often refer someone experiencing these symptoms to an optometrist.
However, in England there’s currently no formal, dedicated pathway for primary healthcare professionals to refer somebody experiencing brain tumour symptoms to an optometrist.
Healthcare professionals might recommend that somebody makes an appointment with an optometrist for a sight test, but this isn’t always an appropriate method of diagnosing or ruling out a brain tumour.
We believe patients across the UK would greatly benefit from a specific pathway in optometry being developed in collaboration with relevant stakeholders including the NHS, primary care optometry, the Clinical Council for Eye Health Commissioning, The College of Optometrists and The Brain Tumour Charity.
To find out more about this read pages 41-42 of our full Brain Tumours: Fighting for Faster Diagnosis report.
How can you help us fight for faster diganosis?
Want to help us fight for faster diagnosis of brain tumours?
We’re calling on policy makers in Government and the NHS to help us make sure people experiencing symptoms of a brain tumour receive a diagnosis faster.
Join our group of passionate campaigners if you want to be part of our movement and help us create meaningful, lasting change!