Focus on stroke: Making a campaign out of a crisis

The Act FAST campaign, designed to boost awareness of stroke as a medical emergency, has generated some provocative imagery, not least the ‘burning brain’ seen in a series of TV and printed adverts. Chrissie Giles found out more about this campaign and others to educate people, both in and beyond the health service, about how to recognise and respond to stroke.

One of the Department of Health’s Act FAST posters

When his father-in-law had a stroke, Gary Ford recognised the symptoms and called 999 straight away. However, despite being a consultant stroke physician with the Newcastle Hospitals Trust, Professor of Clinical Pharmacology at Newcastle University and Director of the NIHR (National Institute for Health Research) Stroke Research Network, Ford still recollects a moment of hesitation before picking up the phone. “Despite all my experience in stroke, there was this concern about not wanting to call the emergency services and get it wrong,” he says.

This reluctance to ‘bother’ a doctor or other medical staff when illness strikes is also familiar to Caroline Watkins, Professor of Stroke and Older People’s Care and School Director of Research, School of Health at the University of Central Lancashire. Her work includes studies to improve the recognition of strokes by the dispatchers who answer 999 calls.

“There are still, despite the campaigns, significant delays in people picking up the phone,” says Watkins. “We’ve talked to a lot of people and often, even if they know something is happening, rather than call for themselves, they wait to speak to somebody else, to check.”

Delaying phoning for an ambulance to double-check with a daughter, son or neighbour that you do, indeed, seem to have something wrong, may not sound catastrophic, yet when it comes to stroke, time is brain. The Act FAST campaign, as its acronym implies, set out to educate people to call for help sooner when they suspect a stroke in themselves or others.

How did the campaign and its hard-to-ignore flaming brain advertisements come to be? What other work is underway to improve the recognition of stroke and action on it both within and beyond the health service?

Training paramedics

As covered in another article in our stroke series, the UK’s first dedicated stroke units opened in the 1990s. Gary Ford was involved with one of the first, at the Freeman Hospital, Newcastle. “Because we didn’t have an A&E department in our hospital we looked at whether it was feasible for ambulance paramedics to identify stroke and transfer patients directly to us, where the stroke unit was.”

He and colleagues developed a ‘rapid ambulance protocol’, allowing paramedics to bring those suspected of having a stroke straight to the stroke unit rather than to A&E. To help support paramedics in their decision to take a patient to the unit, Ford developed an assessment scheme for paramedics.

“We reviewed what had been done in the area and there were a couple of paramedic stroke instruments that had been developed in the US. We modified slightly the Cincinnati pre-hospital stroke scale.” In its original form, this text included asking patients to repeat the sentence “the sky is blue in Cincinnati”. “This obviously wouldn’t go down too well in Newcastle,” laughs Ford.

They broadened this part to encompass recognition of a more general speech disturbance and included that if the patient was in a coma, they should be taken to A&E. What resulted was the Face Arm Speech Test (FAST), to assess three signs of stroke: facial weakness, arm weakness and speech disturbance.

Professor Gary Ford

Discounting minor strokes, most cases of stroke come into hospital via ambulance. Ford recalls scepticism about the plans to train paramedics, including fears that ambulance staff would overload the system with people who hadn’t actually had a stroke. These fears were not borne out. Paramedics were trained and tested, and it was found that their ability to recognise stroke compared well with that of GPs and staff in A&E departments.

The prompt arrival of patients in the stroke unit was important too for another development in stroke treatment that was blossoming in the UK – thrombolysis. This use of clot-busting drugs can be very beneficial, but only if they are given as soon as possible and no later than 4.5 hours after the stroke. “There was a lot of enthusiasm for training among paramedics, particularly when we explained thrombolysis was available,” says Ford. “They could understand the potential value of such a treatment from their experience of using them in patients with heart attacks.”

How well did the paramedics recognise stroke? “Our auditing showed that 85 per cent of the patients who came with suspected stroke were later confirmed to have stroke, which was very good really.

“But we thought initially the paramedics may have been being quite selective in only bringing in patients they were certain had had a stroke, so we sent a letter out encouraging them to bring in patients they weren’t completely certain about, as they’d still be in the right place in terms of in an acute hospital that could offer all the necessary treatment.  And that increased the numbers, which slowly went up – we now have about 30 patients a month.”

The impact has been wider than just in the area around Newcastle. According to Ford, having paramedics who could identify and triage patients to stroke centres was a critical component of the reorganisation of stroke services, for example, in London and Manchester.

“I think if we hadn’t done that work showing it was feasible, it would have been very difficult to argue to reduce stroke care in London to just eight centres, because there would have been concerns that the paramedics would still end up taking patients to the 30-odd A&E departments there.”

FAST change

Now, thanks to public campaigns, the knowledge of FAST has spread, but in a modified way. The Stroke Association in the UK and the American Stroke Association both have campaigns around FAST, but the T now stands for ‘Time to call 999/911’. The urgency is summed up at the end of the UK television ads: “The faster you act, the more of the person you save.”

“We never designed FAST as a public awareness instrument, and its use for this was never discussed with me,” says Ford. “But it seems to make sense to align the public awareness instrument with what the paramedics were using, otherwise it starts to get a bit messy.”

Dr Damian Jenkinson

“The Act FAST campaign was very important in rise of public awareness, it has been mimicked globally,” says Dr Damian Jenkinson, Interim National Clinical Director for Stroke at the Department of Health, who worked with Ford on the testing of FAST. He explains how it was developed from work that had been shelved for almost a decade, until the National Stroke Strategy for England was launched in 2007.

In the late 1990s, a pharmaceutical company was researching a drug to treat stroke. If successful, this would have required the development and validation of a test to help the general public recognise the signs of stroke – something Ford, Jenkinson and others were going to do. However, trials of the drug were disappointing and the funding was withdrawn.

Says Jenkinson: “We’d produced manuals, videos for paramedics. Those files sat gathering dust underneath my desk for the best part of a decade, and then suddenly they became the best thing since sliced bread, which, ultimately, has been hugely gratifying.”

The initial Act FAST public awareness campaign cost £105 million over three years and was undertaken by communications agency Luther Pendragon. To try to leave in people’s minds the message that stroke is an emergency that can be treated, the agency settled on a burning flame that consumes more and more of the brain as the advert progresses.

“It’s what the ad men call sticky,” Jenkinson says. “Some people were actually offended and found it quite disturbing, but a month or a year later if you see someone with a weak face or a speech problem it makes you think, I’ve seen this before. It’s been really powerful.”

On a superficial look, the campaign seems to have made a difference. In December 2010, the Health Minister Simon Burns said that the campaign achieved a payback of £3.16 for every £1 spent. In the two months after the 2011 series of adverts finished running, the NHS in England saw a 24 per cent rise in stroke-related 999 calls. There was a 16 per cent rise in people with stroke being seen faster.

The campaign was hailed by Sir Roger Boyle, former National Clinical Director for Heart Disease and Stroke in the NHS, as “one of the most successful Government public awareness campaigns ever”.

However, not everyone is as certain of the campaign’s success, and aspects of the evaluation have prompted criticism from some areas. Gary Ford was chair of the emergency response group while the stroke strategy was being developed. “My research group did try to get built in at the beginning a formal evaluation of the effect of the campaign, but unfortunately we were unable to.”

It was not only changes in people’s awareness of stroke that Ford was interested in, but whether it could change their behaviour too. “We’d done some qualitative work within our programme grant and it’s not just awareness: people feel inhibited to contact emergency services for a number of reasons.”

Speaking the same language

The power of the FAST campaign undoubtedly owes a lot to the simplicity of the acronym. For the general public, the simple ‘Face-Arm-Speech-Time to call 999’ process sums up three simple signs of stroke. But when someone calls the emergency services about a suspected stroke, how do the ambulance dispatchers recognise and translate these signs into an appropriate message for paramedics? Professor Caroline Watkins (a nurse by training) and her team have been exploring this in collaboration with Ford.

“Although people had concentrated on paramedics and what happens in accident and emergency departments, nobody had really looked properly at what was going on when people actually phoned up,” says Watkins. Given that acute strokes that have occurred within three hours of the call are awarded ‘category A’ status (for which an ambulance should arrive within 9 minutes), misunderstandings can lead to a less urgent ambulance response, costing the patient time.

“It’s one thing if you can see somebody but trying to ascertain whether they’ve had a stroke or not over the phone in an emergency situation is a very different thing. So we looked at how well dispatchers in the emergency services were identifying stroke patients in the very limited amount of time they had in which to do it.”

Perhaps unsurprisingly, the dispatchers’ decisions are based on what people are saying to them and the questions that they’re asking.

The researchers listened to 650 calls made to the emergency services in the north-west of England relating to people who had been diagnosed with suspected stroke either before the ambulance was dispatched, in the ambulance itself or once they’d been admitted to hospital.

“In those calls, the diagnosis was made or suspected less than 50% of the time, which was in keeping with some small studies that had been done and published in the literature before,” says Watkins.

“We were looking for things that could give us a clue as to how we might improve that pick-up rate. So we looked at what was said, the language that was used, and we talked to people who had been through the system about what had gone on, what had made them call.” The majority of calls were made by somebody other than the patient. Of these callers, around two-thirds were women and half were relatives.

Among the team’s findings was that when people do have a final diagnosis of stroke, there had often been some mention of it in the discussion between the caller and the ambulance dispatcher, it’s just that it wasn’t always picked up on. Dispatchers are asked to get the caller’s name and location as a priority, so if stroke is mentioned in the first few seconds of a call, it may be overlooked subsequently.

“So, really it was about the heightening the dispatchers’ awareness that if people do say ‘stroke’ in that sort of ‘first story’ as we’ve called it, then actually they should pay attention to that, because if they do then they’ll get it right,” says Watkins.

In line with the FAST campaign, speech and face problems are the things that people recognise. Phrases used by callers include: “His leg gave way and he collapsed on the floor”, “He’s trying to speak but nothing’s coming out”, “She hasn’t got any feeling in her right-hand side” and “He can’t talk very well”.

Misunderstandings and time-wasting confusion came from the use of certain medical terminology, says Watkins. “We also found that people don’t understand the term ‘consciousness’. A lot of health professionals use the term, so they’d say “Is he conscious?” but the person on the other end doesn’t really know properly what that means and you can hear it when they’re talking. We’d say to the dispatchers, you need to ask ‘Is he awake?’ ‘Is he able to respond to you?’

Watkins’s team developed a training programme that was tested in Merseyside. Collecting data over 18 months – before, during and after the training – the researchers found that when the training began, researchers were correctly identifying stroke in 60% of cases. “A few months after training, the accuracy of spotting stroke was about 80%.”

Delayed dialling

However, while training improves the recognition of stroke both among ambulance dispatchers and the paramedics on board, one of the biggest delays comes in picking up the phone. While this is not unique to stroke, Watkins thinks that some aspects of the condition can increase this delay.

“Unlike a heart attack, where the patient themselves feels the chest or arm pain, when you talk to people it often actually wasn’t them that really noticed the stroke, it was someone else.” Unless you were sitting in a chair that didn’t support you much, or holding something, it’s possible that a stroke wouldn’t be noticed straight away.

“The whole thing with stroke is that it’s the loss of things, and we’re not used to that.”

What does Watkins make of the Act FAST campaign? “Although there’s been some evaluation of it, this hasn’t been particularly rigorous, so we don’t really know if it is making a difference to people turning up to hospital quickly or not.” Her colleague, Steph Jones, has been studying how people understand the pictures. “A lot of people don’t really understand them and one of the things that happens on the advert is that the flame goes out. Some people were saying that they understood this to mean that if you wait long enough then it’ll stop.”

Her team ran a small study to see how people who have had a transient ischemic attack (TIA or mini-stroke, which very often precedes a bigger stroke) respond to different forms of information. They compared usual care to a traditional paper leaflet combined with a more in-depth, face-to-face explanation about what to do if they think they are having a stroke and the need to come to hospital quickly. Of 200 participants, at 3-month follow-up, 10 control and 14 intervention group participants had had a subsequent stroke. Of these, 20% of control and 79% of intervention group participants contacted emergency services when their symptoms started [Jones SP, 2012].

“People often say to you, ‘I knew it was a stroke, but I still didn’t pick up the phone’,” says Watkins. “So there’s something that we have to do differently to get people to actually act.”

• This article is part of the Wellcome Trust’s Focus on stroke, a series of articles, interviews and videos running throughout May 2012, which is the Stroke Association’s Action on Stroke Month.
• For more information on stroke, visit the Stroke Association’s site or call its helpline on 0303 303 3100. If you or someone with you is suspected of having a stroke, call the emergency services immediately.

Selected references

• Jones SP. Acute stroke and the public’s response to symptoms. Ph.D. Thesis. University of Central Lancashire, UK 2012 [in press].
• Lecouturier J et al. Systematic review of mass media interventions designed to improve public recognition of stroke symptoms, emergency response and early treatment. BMC Public Health 2010;10:784.
• Nor AM et al. Agreement between ambulance paramedic- and physician-recorded neurological signs with Face Arm Speech Test (FAST) in acute stroke patients. Stroke 2004;35(6):1355-9.
• Harbison J et al. Diagnostic accuracy of stroke referrals from primary care, emergency room physicians, and ambulance staff using the face arm speech test. Stroke 2003;34(1):71-6.
• Harbison J et al. Rapid ambulance protocol for acute stroke. Lancet 1999;353(9168):1935.
• Gibson JME et al., on behalf of the ESCORTT Group. “Is he awake?”: Dialogues between callers and call handlers about consciousness during emergency calls for suspected acute stroke. Emerg Med J 2012 [In press].
• Jones SP et al., on behalf of the ESCORTT Group. Callers’ experiences of making 999 emergency calls at the onset of acute stroke: a qualitative study. Emerg Med J 2011 [epub ahead of print].
• Jones SP et al., on behalf of the ESCORTT Group. The identification of acute stroke: an analysis of emergency calls. Int J Stroke 2012 [epub ahead of print].