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Why we’re campaigning for faster diagnosis

Find out more about the benefits of faster diagnosis and what you can do to help us create meaningful, lasting change for people affected by a brain tumour.

Steph from our Policy and Campaigns team speaking to MP’s in Westminster, London
Steph from our Policy and Campaigns team speaking to MP’s in Westminster, London

Can you imagine having to wait over six months for the life-changing news that you or a loved one has been diagnosed with a brain tumour? Or even a whole year?

Unfortunately, this isn’t uncommon.

One in six respondents (17%) 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 one in 10 (11%) waiting over a year to be diagnosed.

This has to change! Which is why throughout and beyond Brain Tumour Awareness Month 2023 we’re calling on policy-makers in Government and the NHS to help us drive down diagnosis times.

What we’ll cover in this article:

What do we mean when we say faster diagnosis of brain tumours?

When we talk about faster diagnosis, what we mean is that we want people who display symptoms of a brain tumour to receive a definitive diagnosis as quickly as possible after first visiting a healthcare professional about their symptoms.

Unfortunately, we know there will always be people who go through Accident & Emergency (A&E) to get a diagnosis because there will always be people whose very first symptom is a seizure, paralysis or something major that requires emergency treatment.

But we believe that there are many things that can be done to help drive down diagnosis times for the majority of people who experience symptoms of a brain tumour in the future.

What are the benefits of a faster diagnosis of brain tumours?

Simply put, the main benefit of a faster diagnosis is that treatment, care and support can be provided to people at the earliest opportunity – which could lead to people living better lives after their diagnosis.

Potential health benefits

While we’ve not yet seen a direct correlation between faster diagnosis and survival outcomes (particularly with high grade tumours), there are other health benefits.

In some low grade gliomas, there is evidence to suggest that an earlier surgery could lead to better survival long-term outcomes.

We also know that in some people diagnosed with low grade brain tumours, a faster diagnosis could mean a prevention of irreversible disabilities.

There’s also the possibility that for some people, a faster diagnosis could mean they experience fewer symptoms and are potentially more able to tolerate surgery or other treatments and may experience fewer or less severe side-effects.

Unfortunately, a faster diagnosis won’t have health benefits for everyone who’s diagnosed with a brain tumour, but for some people it could make a huge difference – and there are other benefits too!

Improved experiences

The experience people have on the way to getting a diagnosis can shape their ongoing treatment and care plan.

A poor diagnosis experience where somebody feels dismissed and messed around can lead to distrust in healthcare professionals they meet later on through their treatment and care.

Whereas evidence shows that having a positive experience this early on in the journey can reduce distrust in primary care and reduce dissatisfaction in the whole system.  

Practical and emotional benefits

We spoke to a lot of people in the brain tumour community as we prepared to write our upcoming report on faster diagnosis and something that people told us repeatedly was that having a faster, smoother diagnosis would have provided a litany of practical and emotional benefits.

From more time to process their diagnosis or put personal affairs in order, to having extra time to receive support in the most appropriate way for them or explore alternative options for care and treatment.

One young person told us about the more practical arrangements for school exams and coursework that couldn’t be put in place because her diagnosis came so late.

What it didn’t offer me was the opportunity…to put anything in place, things like contacting my school to let them know I’d had a brain tumour over the holidays…they then didn’t have the time to put any provisions in place, we couldn’t contact the exam boards in ample time.

Participation in research

The ability to participate in research was also something people told us about passionately.

People felt that if they had more time they would have been able to explore the options available for them to participate in research. As well as potentially improving their own condition, people were passionate about being able to contribute to improving treatment and care for others in the future.

However, many clinical trials have very strict criteria about who can take part and these can often exclude people who’ve already received certain treatments – this can also be the case for research projects that use samples of people’s tumours.

How you can help us drive faster diagnosis of brain tumours

We know that for many people the path to being diagnosed with a brain tumour (or having one ruled out) is too long and can be very distressing experience.

Sadly, when we researched our upcoming report on faster diagnosis, we heard far too many stories of people who’d been misdiagnosed with other conditions, sent away from their GP multiple times, experienced multiple delays or passed from one healthcare team to another for different diagnostic tests that didn’t amount to anything.

And all of this can be made even worse when things aren’t communicated clearly to the person going through all of this – somebody who’s often scared about why they’re experiencing these symptoms.

That’s why we’ve been working on our report on faster diagnosis and putting together recommendations to help policy-makers in Government and the NHS drive down diagnosis times. We’ll be sharing more information about this during Brain Tumour Awareness Month – so watch this space!

To help us make sure the right people see our recommendations when we publish them, we’d love for you to join our group of campaigners. If you join, you’ll be sent more information about how you can write to your MP and ask them to take action on improving the diagnosis experience for many people.

So whether you’ve been impacted by this or not, if you want to help us fight for faster diagnosis, sign up today!

Want to help us drive down diagnosis times for 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!