Kay Boycott is chief executive of Asthma UK. She began her career in commercial roles for Nestlé and Johnson & Johnson, followed by 10 years in strategy consultancy. She was also a Non-Executive Director and Audit Chair of NHS Hammersmith & Fulham Primary Care Trust for five years and a Trustee of Gingerbread.
Kay moved to the charity sector in 2009 as Director of Campaigns, Policy and Communications at the housing and homelessness charity Shelter and became Chief Executive of Asthma UK in October 2013. Kay is a member of the Kings Fund General Advisory Council and was shortlisted as Digital Leader of the Year in 2017
Charity trustees inevitably pin their hopes and dreams on a new Chief Executive. They’ll reach more people, grow income and reduce support costs, drive productivity, strengthen infrastructure and innovate. Above all, they’ll convince the government to prioritise and significantly invest in their cause. Certainly, I felt these expectations when I became Chief Executive of Asthma UK in 2013.
Asthma was a debilitating condition affecting 5.4 million people in the UK, that simply wasn’t being taken seriously. Asthma research was underfunded and the innovation pipeline seemed fairly empty. There wasn’t a scalable, effective, test to diagnose asthma, and the only medication for the 250,000 people with severe asthma left them prone to toxic side effects. The basic elements of care were not being delivered for the majority of people. It was totally understandable why demanding NHS action would be high on the list of objectives.
It was hoped the 2014 National Review of Asthma Deaths would catalyse action. Shockingly, it found two out of three asthma deaths could be prevented with better routine care. It even prompted the Royal College of Physicians to declare we must ‘end complacency’ about asthma. Asthma UK worked hard to raise awareness of the findings and secured meetings with the right senior level NHS staff. We really thought we could convince the NHS to prioritise asthma at a national level.
But the NHS is cash-strapped. Another study estimated the cost of NHS asthma services (excluding medication) at ‘only’ £293 million per year. Of course, the true cost of ill-health is not represented in NHS accounts. Like many conditions, asthma blights people’s quality of life, affecting their relationships and their ability to work. However, it is entirely rational for a financially-constrained NHS not to prioritise a single condition when improvements were unlikely to reduce costs, and might even increase them.
So what then? How do you manage a shift from seeing NHS influencing as the primary avenue for change and create opportunities to improve the lives of people with asthma from a blank sheet? This felt daunting for a 90-person charity with just £1 per year to spend on each person with asthma. In the end self-belief came from the anthropologist Margaret Mead, ‘Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.’
Also critical to our self-belief were two other changes. Firstly, we are in a period of unprecedented innovation in healthcare data and technology with the potential to deliver care in completely new ways. Secondly, a growing recognition that real change is only delivered with multi-disciplinary, multi-sector partnerships.
We haven’t abandoned ‘traditional’ advocacy when the system allows – we’ve successfully challenged access for new treatments and contributed to new guidelines. We’ve also worked more in policy partnership. For example, with other coalitions calling for cleaner air and anti-smoking measures to prevent asthma attacks, and as part of the Richmond Group of charities on broader policy issues.
But for most things we assume we will need charities, industry, academia, NHS policymakers, clinicians and patients working together to solve big healthcare problems. We also believe Asthma UK needs to be prepared to initiate and drive such partnerships.
We’ve done this in various ways – with ‘cat herding’ almost becoming a new core competency here. We’ve partnered with industry and other research funders to co-fund innovation competitions, to drive near term patient benefit through new technology. We’re encouraging UK and US clinical academics to join forces to create a transatlantic collaboration in severe asthma. At a smaller scale our ‘Asthma Lab’ service offers advice and services to digital health innovators. Most ambitiously we are currently working to galvanise a global public-private partnership to define the potential for smart inhaler enabled pathways in the NHS. Smart inhalers are devices which record how someone is using their inhaler in real-time. The resulting data can be used to identify patients most at risk of an asthma attack and personalise care. This data combined with other data sets will also be used to identify new types of asthma, hopefully underpinning discovery of new treatments.
Some of this is long term, and so we’ve transformed our own asthma advice and support services, rather than waiting for the NHS to deliver. We jump on digital channels to get critical health messages to people with asthma at time of peak asthma triggers. We’re delivering new digital services—online risk tests, personalised asthma reports, a nurse-led WhatsApp service, and an health behaviour change support service. This has helped us to double our reach amongst people with asthma in the last three years, and ensured nearly 1 million more of them now have the all-important asthma action plan.
So, what are the learnings for other charities wanting to influence the NHS at this time of constant change and budget cuts? We need to look beyond the traditional model and take a fresh look at the unique assets each organisation has. We need to be open to working with anyone who shares our mission and not be judgemental about their sector. And we need to collaborate, learn to work out what others need and accept when we need to compromise. Sometimes we just need to roll up our sleeves and do the job ourselves. Overall we need to continue evolving so we can make a real difference to the people we represent.
This blog is part of a series, in the month of the 70th anniversary of the founding of the NHS, exploring the relationship between the health service and the voluntary sector. See the previous instalment by Alex Fox, CEO of Shared Lives Plus, here.