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Let's beat cancer sooner

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.

ACE1

How the current referral system works – confusing, right?

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.”

ACE2

How a diagnosis might work in the new centres

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

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Jennifer McKenzie March 16, 2016

I think this approach makes sense and might also remove some of the feeling of being “a time waster” that I’ve heard from a few people that they got when they had either false but very worrying symptoms of cancer or even worse when the cancer just hadn’t been found by initial tests. It could also be applied to cancer treatment as A&E is not a great place for someone with cancer to lie or sit around in when seriously ill and I’d think many cancers and their treatments cause similar issues (unable to eat, pain, nausea etc). My mum spent several miserable days waiting on hard seats for treatment which generally did very little good and I’m pretty sure wasn’t actually as much as could have been done when dying of stomach cancer just because there was nowhere else to go to get any treatment at all. Cancer centers only seem to do the actual cancer treatment but can’t treat the side affects or resultant health problems.

Kate March 10, 2016

I think this approach to early cancer diagnosis is long overdue and I wish more innovation and an unrelenting drive to improve outcomes didn’t take so long to materialise in the NHS. Nevertheless it’s totally refreshing and uplifting to read this article. It took five long months to diagnose my cancer and the psychological trauma took its toll on me. Thankfully I”m in remission. However, another real challenge the NHS needs to tackle, is cancer recurrence. My close friend had several visits to her GP surgery complaining of intense headaches. Eventually she was admitted to A+E after suffering a seizure at home. Metastatic breast cancer that had spread to her brain was diagnosed and within twelve days, she tragically lost her life. Similarly, my sister’s breast cancer recurred in her liver and this too was missed by two doctor’s. Within a week she was admitted to hospital critically ill. Some fantastic care saved her from the clutches of death and her cancer is being successfully managed. These centres really could rmake a vital difference to patients with primary and secondary cancers, I just hope that there is an even spread of these centres, so that all NHS patients have equality of access.

Ali March 6, 2016

This sounds like a fantastic diognistic way of working for the NHS I know how frustrated I felt before I was diogosed with oesophageal cancer in 2012? I would suggest the projects be based across the UK as I note the article only refers to England.

Dawn March 5, 2016

This needs to happen now!!! My mum had a fantastic GP who referred her immediately for tests after her first visit with tiredness, back ache and stomach ache, nothing too serious but just a niggle!!! Whilst the test results came back with the devastating news of bowel cancer that had spread to her liver and lungs, the time it took between different scans, blood test and camera investigation took 2 months. That was 2 months of hell for her!! Whilst this new system will save time, in conjunction with this we need to be clearer on the symptoms as my mum put her back ache and tiredness down to her job, and hadn’t once considered it to be cancer, (she thought it was the side effects from blood pressure medication she was taking). Being aware of the symptoms of cancer will lead to earlier diagnosis, along with that important timely referral from the GP. We sadly lost our mum in January, 3 months after being diagnosed.

Susan March 3, 2016

I note this article is about England. Are there similar plans for Scotland?

Catherine Nelsey March 3, 2016

I am one of said patients who went to A&E on Saturday night with a severe pain in my side. I was scanned on Sunday to find I had tumours on my liver! I have since been diagnosed with Secondary breast cancer that has spread to my liver, tumour on my spine and in my lymph glands below my collarbone. My cancer is incurable but can be treated. I had been diagnosed with severe depression and anxiety back in May last year and was prescribed mirtazapine and lorazepam to deal with the depression etc. I gained 2st 7lbs in 2 months and put this down to the new meds as they do have a reputation to gain weight. I had spoken to my GP and Psychiatrist about this but no one seemed concerned!

Mrs Virginia Jean Bayliss March 3, 2016

As a very fortunate survivor – thanks to being part of a trial – I am passionate about other cancer sufferers being diagnosed and treated in time. In my case I was doubly fortunate; firstly because I stood my ground on what I believed was a mis-diagnosis and secondly I was so incredibly lucky to have been placed under the care of the wonderful Oncologist and Chief Clinician Professor Peter Johnson. I have also commented in the past that more needs to be put out to public awareness of general cancer symptoms similar to the well documented breast cancer symptoms. Cancer is a really really scary word to hear and unfortunately there are people who ignore their symptoms in the misguided hope that they do not have this dreadful disease – partly because they are not sure if their feelings are actual cancer symptoms. To have a definitive “place to go” is simply wonderful for patients and medical professionals.

Ann Martinali March 3, 2016

The sooner this type of system exists the better. In 2003 I visited the GP four times knowing I was ill, as I’d always been very fit. After being told it could be a pulled muscle causing pain, and no further help. I asked to be referred to the hospital. They sent me for an appointment at General medical, who then sent me for an Ultra sound. I went privately for this as I was fed up of being messed around! I was then taken into an NHS CT scan which confirmed kidney cancer! So I had spent five months wasting time before being operated on and losing my kidney. There must be a better way !!!

Nick Chandler March 3, 2016

It looks to me like a very positive step, especially if the interaction within such an MDC is pro-active (which I expect is the intention). I hope it gets the go-ahead from / within the NHS. Hopefully it would also include creating informative, structured advice for potential patients, both before / at referral and during investigation & treatment.

Kate StewRt March 3, 2016

The trouble with a new drug for a cancer – seems the only people who really benefit are the rich
The rest have to fight to get a drug which may be a lifesaver, why is so much time and money
spent on break-through drugs if we cannot have them???

Janice Fitzpatrick March 3, 2016

Half the time you can’t get to see a GP these days. At my surgery you have to ring up to get a telephone call back from a GP who then decides if they will see you in surgery. Telling them you’re tired over the phone is hardly likely to get you a response to come in for tests!
I had a health check recently (I was 60) I didn’t get to see the doctor, it was done by a nurse and all I had was a blood test, my height and weight checked and a generally discussion about my lifestyle and what I ate.
From discussions with colleagues/friends, there are a lot of people who won’t go to see a doctor with minor symptoms that could actually cover something that may be serious. We don’t have time, we don’t want to be off work, we don’t want to be ill because we might lose our jobs and that might lead to us losing our homes! From information I am aware of dealing with cancer treatment can be a lonely business and employers and the benefits systems are not built to deal with the long term repercussions of someone having the illness.
There are also a lot of people that don’t actually want to think they might have cancer so they won’t even consider going to see a GP, it’s still too scary and too wide ranging and life changing for people to deal with unless they are forced into it, at which point it’s probably too late!

Kristina March 3, 2016

This is a real issue-there is no time to waste in regards diagnostics

wendy March 3, 2016

brilliant idea much needed

Gudrun O March 3, 2016

What about NHS Wales? What is their policy in the way of improving early diagnostic statistics and improving 5 year survival rates?

Susan Price March 3, 2016

My husband died of pancreatic cancer. He did not know he had it until three days before he died. He had been investigated for many months and had had several operations. This system would, I believe, have helped.

Tony T March 2, 2016

This is a most useful and comprehensive article highlighting some problems associated with diagnosis. For how many years have the NHS have been reminding us that there is a link between reporting early symptoms/being seen by a consultant and outcomes. Regardless the problem of A&E discovering cancer remains; WHY??

Hannah March 2, 2016

What a fantastic idea. I hope this comes to fruition. My dad was diagnosed with end stage advanced stomach and liver cancer last week. He was ill but all of his symptoms were non specific and he had no obvious signs of cancer until his liver failed and he was rushed into A&E. There he got the right tests at the right time and we found out. It wouldn’t have changed his diagnosis but he wouldn’t have been in pain for so long.

John Lancaster February 4, 2016

Pancreatic cancer is a prime example whre the new diagnostic centres could bring some improvement in earlier diagnosis. This cancer has the worst survival rate, and this is mainly due to late diagnosis leading to a low surgery rate