Hearts and minds

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People who’ve been touched by heart disease, cancer or multiple sclerosis (MS) are often inspired to run a marathon to raise funds for a relevant charity; Simon Gillespie was inspired to run the charity itself. Chief executive of the British Heart Foundation (BHF) since 2013 – and, before that, head of the MS Society for seven years – he believes ‘affinity with the cause’ is important. 

“My aunt had MS when I was growing up, and I saw the impact it had on her and my cousins as she deteriorated,” he says. “That spoke to me. I didn’t set out to be the chief executive of the MS Society, but when the job came up, it was too good an opportunity to miss.” 

Similarly, during Gillespie’s first year at university, his father died from a heart attack the day before his 58th birthday. “That gives me a very personal link into the sudden devastation that heart disease can wreak. I would have found it difficult to do this job at a charity with which I don’t have a connection – and where I don’t feel that I can make such a big difference.” He’s careful not to ‘universalise’ his own experience, “but it gives me a bridge – people understand why I’m around; I’ve been touched by a similar condition to what they, or their children, are going through.”

However, it’s not so much his personal connection with the BHF that has informed Gillespie’s approach since he joined, but his broad and deep knowledge of the sector. He was director of operations at the Charity Commission, head of operations at the Healthcare Commission, and – as a non-executive director and trustee – has extensive national and international experience of charity and non-profit governance. 

Steeped in the sector as he is, though, Gillespie was shocked by “the size, scale, extent, breadth and impact” of the research funded by the BHF. “We are the biggest funder of cardiovascular research in the UK,” he says. “We finance 55% of it; government funders such as the Medical Research Council and the National Institute for Health Research put in about 35%, and the remaining 10% is made up by the other charities – the Stroke Association and Diabetes UK. That gives us a very strong and impressive position.”

However, the public was as unaware as he was of “the biggest secret of the BHF,” so much of Gillespie’s focus over the past four years has been on communicating the amount of world-class research that the BHF does – and, crucially, how that translates into benefits for hundreds of millions of people around the world.

De-risking research

The charity is making research even more central to what it does. “We have committed to spend at least £100m a year on it over the next five years; within that, there are some key shifts of emphasis – notably the introduction of a ‘translational’ research funding stream,” Gillespie says. 

“There’s no point having a piece of research that generates 10 scientific papers that no-one acts on. If there are good ideas out there that haven’t been picked up – but that look as though they would benefit patients – we will try to push that process forward. We are introducing a grant funding scheme designed to ‘de-risk’ certain things and make them more attractive for pharmaceutical, biotech or venture-capital companies to take on. We don’t have the resources to take a drug through to development and into clinical use, but we can catalyse others to do it.”

Another thing Gillespie has sought to address is the misconception among large swathes of the public that heart disease, unlike cancer, is almost ‘a lifestyle choice’ – the preserve of overweight, middle-aged men who smoke, drink, have a poor diet and take no exercise.

'Sudden devastation’ campaign

“Twelve babies are born in the UK every day with a congenital heart defect, and more than 600,000 people have some sort of inherited heart condition,” says Gillespie. “Sir Magdi Yacoub, who was BHF professor of cardiothoracic surgery for 20 years, pioneered a lot of the surgical techniques that are still used today. As a result, we have seen infant mortality from congenital heart disease drop from eight out of 10 before their second birthday to eight out of 10 surviving into adulthood.”

The fact that heart disease can affect anyone is the central message of BHF’s ‘sudden devastation’ advertising campaign. One execution, with the endline ‘Heart disease is heartless’, features a man saying goodbye to his son in a classroom. Only at the end do you realise the man has died. Another features a bridesmaid who collapses at her sister’s wedding, with the endline ‘When you least expect it’. 

These ads are shocking – but in a more emotionally engaging way than some of the BHF’s traditional advertising – like the one in 2004 that showed fat oozing from cigarettes and being squeezed out of a clogged-up artery. Such ads helped to pave the way for the ban on smoking in public places that was introduced three years later, and the more recent ban on smoking in cars when children are present.

But Gillespie believed that a more positive approach would serve the charity better than the “finger-wagging” of old, and he has tried to foster more of a dialogue with stakeholders to build engagement. What’s more, the strategic review he undertook when he joined showed that while BHF had been the voice that had catalysed anti-smoking initiatives, “we were now one of a number of voices, many of them better resourced than us, and we decided to de-emphasise our public health messaging.” The BHF hasn’t turned its back on the prevention agenda, but it’s concentrating on two key areas where it has, he says, “a distinctive voice” – smoking and air pollution.

Coincidentally, the BHF’s headquarters are in Greater London House, formerly the Carreras Tobacco factory, which made Black Cat cigarettes. An old advert featuring a small black cat sits on his desk as a reminder of how much there is still to do. 

“Tobacco use still causes between 20,000 and 24,000 deaths from cardiovascular disease (heart disease and stroke) every year in the UK,” says Gillespie. More surprising, perhaps, is that poor air quality is responsible for a further 40,000 deaths, 80% of them the result of cardiovascular disease, according to the World Health Organization. BHF-funded research at the University of Edinburgh has demonstrated not only the links between pollution and cardiovascular disease, but also the mechanisms whereby nano-particles in diesel emissions pass from the lungs into the bloodstream and mass around coronary arteries and blood vessels in the brain. “This is a big issue for us,” he says.

Glacial progress

Gillespie is very keen on collaboration and supporting and encouraging other organisations to do things. One of his aims for BHF when he joined was to have more influence on government, but while “the direction of travel is positive”, he is clearly frustrated with what can be glacial progress and the government’s apparently contradictory stance on charities.

“We have more direct access to, opportunity to discuss with and, therefore, hopefully influence in, the devolved nations – Scotland, Northern Ireland and Wales – than we do in Whitehall and Westminster,” he says. “The ban on smoking in public places and on smoking in cars when there are children present came in first in Scotland, and Wales was the first to do the ‘soft opt-out’ for organ donations – that is, agreed consent is presumed. So there are areas where we do some good work and effective lobbying with those assemblies, which ends up putting pressure on England to act too.”

He is less sanguine about the government’s “multifaceted” attitude to charities. “In one sense we are the best thing since sliced bread because we step into areas and pick up things that government funding should be reaching and isn’t. We are also ‘a great British export’: in the medical research sector alone, there are at least three world-leading research funding organisations that are UK charities – the Wellcome Trust, Cancer Research UK and the BHF – and the government loves that, but we get unjustified beatings in the media and in the form of new regulation.”

He admits that the sector does have things to address – not least fundraising practices – but he thinks that while charities are getting their house in order, the government should be encouraging them rather than punishing them. As he points out, this is counter-productive as it involves fines, which consume public donations, and creates negative publicity, which turns donors off. The BHF was fined last December by the Information Commissioner’s Office (ICO) for allegedly breaching data protection rules – although it stopped the practices concerned months, and even years, earlier. Despite “a number of strongly held concerns about the process the ICO went through”, Gillespie and the trustees decided not to appeal against the fine because the unrecoverable costs of even a successful appeal would have been greater than the fine itself. 

BHF monitors sentiment on a weekly basis, and although trust and confidence took a significant dip in December when the ICO fine was announced, it rebounded quite quickly. YouGov’s CharityIndex tracker recorded trust in the BHF in October/November at 51%, making it the fourth most trusted UK charity (after Macmillan, CRUK and RNLI). In December/January, after the ICO fine, it fell by just one percentage point, to 50%, and in mid-July was up to 55%.

But such contradictions are inevitably reflected in public attitudes too. Research by Populus for the Charity Commission, published in July, revealed that the number of people who think charities are regulated effectively has fallen over the past two years. However, there was a ‘significant increase’ in the proportion of people who said they or their close family or friends had benefited from a charity.

Focus on stakeholders

Gillespie acknowledges that there is also a perception that big charities are faceless, uncaring and spend too much on overheads, and the BHF is trying to challenge that with an engagement strategy that focuses on stakeholders at a local level. But he says that, despite their ‘human face’, many small local charities are not effective. He pays testimony to the amazing motivation of people who feel inspired to set up a charity after, perhaps, a personal tragedy, and acknowledges their very natural desire to do something to stop the same thing happening to others. 

“The difficulty is that quite a lot of these charities start small, stay small and hang on small because they have underestimated the sheer amount of admin required to ensure their systems and infrastructure are up to scratch.” 

While it’s important not to stifle “the remarkable generosity of the British public”, Gillespie believes there are too many charities, mainly because there are so few barriers to entry. “New or smaller charities are often dealing with issues that well-established charities are already dealing with – and probably a lot more effectively because they have more experience and considerable economies of scale,” he says. There are other ways to channel this philanthropic urge, adds Gillespie, citing the Miles Frost Fund as an example. 

The eldest son of the late broadcaster Sir David Frost died suddenly of an undiagnosed heart condition in 2015, aged just 31. The family believes he inherited hypertrophic cardiomyopathy (HCM) from his father, and in January 2016 they launched a charitable fund, in partnership with the BHF, to create a nationwide genetic testing service to try to prevent others dying of the condition. 

“The Frost family could have set up a charity in Miles’s name, but chose instead to look at what organisations were already operating in this area that could do what they wanted to do, as effectively possible,” says Gillespie. “The fund is a restricted fund of the BHF, and it allows the family to have personal involvement – they committed to raise £1.5m – without having to worry about accounting for the money raised, applying for permission and so on, because we do all that for them. It means that all the money raised by the Frost family, their friends and contacts, is actually used to best effect.”

Gillespie thinks the Charity Commission could be clearer about recommending other organisations people could approach rather than setting up their own charity. “It could even insist that people set up a restricted fund within an existing charity as a first step, with the right, a year or two in, to establish a full charity, if they meet specified criteria.”

Reducing the number of charities would help ensure the donor pound is used better. But have charities become a victim of their own success? Is there a danger of donor fatigue?

“One of the great things about the charity sector is the ability for citizen participation,” he says. “I don’t think the charity model is broken, but it is pressurised and will continue to be.” 

Trust, transparency, dialogue and engagement are all critical to charities’ continued success, but government interventions aimed at ‘protecting’ the public can be counterproductive. 

Gillespie describes the new Fundraising Preference Service (FPS) as “a blunt instrument,” for example. Designed to allow donors to opt out of being contacted by a charity, the complexity involved – different regulations apply to different forms of communication – seems out of all proportion to any donor benefits gained, and could affect beneficiaries. Of the 10 million supporters on the BHF database, just 73 people have signed up with the FPS.

“I think if most donors knew how much charities are paying at the moment to comply with legislation – let alone how much more we are going to have to pay to comply with the General Data Protection Regulations that take effect next year – they would be shocked,” says Gillespie. 

Another big concern is Brexit, he says: “The UK research base has been a net beneficiary of European funding for many years. If that funding dries up, the money BHF gives to universities for research will be spread more thinly. There’s also a danger that some institutions’ specialisms may become unsustainable.” 

In addition, losing the European Medicines Agency to the EU will mean not only a loss of highly skilled jobs and valuable research capacity, but is also likely to result in patients getting medicines later than they need to – at least during the hiatus until European medicines regulations are adopted. Then there’s the people side. 

“About 20% of our funded researchers are non-UK EU nationals, so we could lose and/or fail to attract some really significant talent during the period of uncertainty over what constitutes ‘settled status’. We will also lose the valuable interchange of ideas that comes from people moving between labs in the UK and Europe.”