Diagnosing cancer means getting tested. And the tests a person has are usually related to their symptoms.
But cancer symptoms aren’t always clear cut. And people often have symptoms like abdominal pain, weight loss, or fatigue that can be caused by a whole host of things, many of which aren’t cancer.
So when people see their GP with these so-called ‘vague’ symptoms it can be difficult to know which test to send them for.
The way the NHS is organised doesn’t help. If a patient has symptoms clearly linked to a particular type of cancer – say, a persistent cough, linked to lung cancer – there are ways for a GP to refer them for a particular test.
But there’s no equivalent way of referring people with non-specific, vague symptoms. As a result, these patients often get sent back and forth between GP and hospital, test after test, until a diagnosis can be made. This can feel like a long, winding road, delaying their diagnosis and potentially life-saving treatment.
Research from Denmark shows that while just under half of cancer patients (48 per cent) started their journey with clear symptoms of a particular type of cancer, the other 52 per cent had to take a more round-about route.
So clearly we need to straighten the ‘roads’ in our health system, to make sure these patients get the appropriate tests just as quickly.
Launching later this year through the ACE (Accelerate, Coordinate, Evaluate) Programme – an NHS England, Cancer Research UK and Macmillan initiative – a number of projects will test out an innovative new way of doing this.
What’s the problem?
Diagnosing cancers earlier has been a top priority for the NHS for a number of years. But too many people are still diagnosed with cancer via an emergency route, such as in A&E.
As we’ve written about before, these people tend to have poorer survival. So clearly something needs to be done.
Patients with an early stage cancer may present to their GP with vague or unspecific symptoms, so only having referral routes for patients with alarm symptoms isn’t likely to be effective.
There are also various different ways someone could be diagnosed as an emergency, with a third of emergency presentations going via GPs. GPs regularly review cases of patients who ended up having serious conditions, including cancer. And from these ‘Significant Event Audits’, it turns out that there are a number of different reasons why a patient might end up having their cancer diagnosed in A&E.
GPs often feel like they have to send their patients to A&E because there’s nowhere else to send them, and this was actually the safest place for them to get their tests done
– Donna Chung, project manager for London Cancer
One important factor is that, for patients with non-specific but concerning symptoms that are very ill, this is the fastest way of being seen by a specialist.
Donna Chung, project manager for London Cancer, who works to improve services for people with non-specific symptoms of cancer in London, says: “GPs often feel like they have to send their patients to A&E because there’s nowhere else to send them, and this was actually the safest place for them to get their tests done.”
There’s no such thing as a ‘tickbox patient’
In England, there are GP guidelines about which tests are appropriate for different symptoms. But the reality is that people often don’t fit into these neat categories. A person may have several non-specific symptoms, which could be a result of a different types of cancer, or other diseases entirely.
As Helena Rolfe, a GP from Airedale, explains, “if patients have symptoms like coughing up blood from the lung we know that there is a team of respiratory experts that will be able to see them quickly and to work out what’s wrong.
“But if patients have symptoms like weight loss or feeling very tired, and nothing else is really changing that rapidly, we worry because there must be a reason they’re not feeling well – but there isn’t an urgent specialist that deals with these kinds of symptoms.”
One country that’s tried to tackle this issue is Denmark – and it’s to the Danish health system that England is turning to for answers.
The Danish Experience
Denmark has a similar health service to the UK, where GPs make referrals for diagnostic tests. In 2010, research carried out as part of the International Cancer Benchmarking Partnership (ICBP) showed that both Denmark and the UK lagged behind the rest of Europe in terms of cancer survival.
Part of Denmark’s strategy to address this issue was to set up a way of referring patients with non-specific symptoms of cancer, making sure these patients have appropriate tests quickly.
They call it a ‘Multi-Disciplinary Diagnostic Centre’ (MDC).
“In Denmark, an MDC is a place where a GP can refer their patients if they are unsure what type of cancer they might have,” says Peter Vedsted, a Professor of Diagnostics in Denmark. “Where you say ‘This person is ill, I don’t know what it is, but I need this patient to be thoroughly evaluated.’”
What’s special about this kind of centre is that rather than a patient going back and forth to see different specialists, the specialists are all gathered in one place so that various different tests can be done as soon as possible, and discussed in meetings with each specialist present.
As well as the potential to shorten the time patients wait for tests to be booked, it’s likely to be cheaper too – reducing multiple appointments and unnecessary tests leads to a more efficient use of resources.
“In the old system, there were a lot of possible ‘routes’ between the GP and specialists in the hospital,” he says. “What happens now is that GPs can refer to one centre where you can efficiently use these specialities when you need them. All testing is made during one day, if possible.”
He stresses that this system has really been designed for the benefit of the patient, so they have much shorter waiting times before tests are carried out. On top of this, patients with worrying symptoms have a system that responds to their concerns, offering different options and not leaving people to worry.
“We won’t say ‘well it wasn’t my problem’ and you go home and somebody will pick it up. We are not letting you leave until we have a conclusion,” says Vedsted.
An initial evaluation of the Danish MDC centres has shown that around 16 per cent of patients seen were diagnosed with cancer in their first six months of operation. Altogether, patients referred to the centre had over 80 different symptoms, with many patients showing multiple symptoms.
Importantly, patient experience has been consistently high for the diagnostic centres established in Denmark. More research is underway to assess whether the MDC pathway has reduced the time to diagnosis for patients and whether it was able to diagnose patients at an earlier stage.
So… what to do about it?
There’s no doubt that something needs to be done to help people with non-specific symptoms get an earlier diagnosis, or be reassured that their symptoms are something other than cancer. That’s why the Cancer Taskforce strategy for England, published last July, recommended that the NHS should test whether it’s possible to set up centres similar to those in Denmark. And one way this is being tested is through a number of pilot projects to be run as part of the ACE Programme.
The ACE Programme is testing new ways to get more cancers diagnosed early across England. And is in the process of establishing a number of projects to look at how to set up a similar model in the NHS to that used in Denmark.
The projects, which will be based in different areas of the country, are all testing the same concept: offering patients with non-specific symptoms a range of different tests in one centre, and bringing specialists together to discuss the results.
But they are doing this in slightly different ways. For example, some projects are only accepting patients that are referred by their GP, while others are also considering referrals from their local pharmacist or through A&E.
Some are bringing the specialists together in the same building, while others might be based at several centres, and discuss patients using virtual technology.
The projects are aiming to have their centres set up by December 2016, and over the following 3 years, will be monitored to see whether they’re are actually making a difference, both in speeding up the time to diagnosis, but also, crucially, in improving how patients rate their care. And as well as seeing if this works overall, it will be able to see whether there are any differences between projects, for example between centres in cities or in more rural settings.
Bringing the right people together at the right time
When the NHS was set up, specific routes to diagnosis were designed for patients with particular diseases. Bringing together specialists working on different types of cancer in one place to accurately diagnose a patient is a completely new way of working in our health system. It could revolutionise not only the way in which cancer is diagnosed, but also help speed up the diagnosis of other diseases such as diabetes, heart disease and rheumatoid arthritis.
“Cancer is the disease that has led to this innovation in the healthcare system, but it can be applied to all the big diseases with a time-dependent diagnosis,” says Professor Vedsted.
London Cancer’s Donna Chung sees the future of MDCs in the UK as being able to diagnose patients with any type of non-specific symptoms, and suggests that they’ll help “bring together the specialists needed to diagnose patients efficiently.”
“This will improve services both for people that are eventually diagnosed with cancer, but also for those that have other serious concerns which need to be investigated,” she says.
Straightening the road to an accurate diagnosis for certain cancers is no easy task. But if these projects work they could offer a completely new way of working in the NHS, with the potential for huge improvements. And that’s a journey we’re looking forward to taking.
Louise Bartelt is a programme officer at Cancer Research UK
- You can receive updates on the projects by emailing ACEteam@cancer.org.uk