COVID-19 has inflicted on people across Northern Ireland a brutal insight into what it’s like to cope with breathing difficulties and live with damaged lungs. The pandemic has put acute and critical respiratory care at the top of politicians’ agenda, but lung disease – responsible for over 2,000 deaths a year in Northern Ireland – has never had the profile to match its high prevalence.

Respiratory illnesses are exacerbated in Northern Ireland by both environmental and lifestyle factors, as well as by the chronic underlying condition of the health service here. They cost the NHS an estimated £250 million a year. Having been without a functioning Executive or Assembly to lobby between 2017 and 2020, today campaigners are making up for lost ground so that a post-pandemic Northern Ireland can breathe easier.

One call for a comprehensive lung health strategy to meet this challenge comes from the Asthma UK (AUK) and British Lung Foundation (BLF) Partnership, the outcome of a recent merger between the two charities. Joseph Carter, Head of Devolved Nations for the AUK–BLF Partnership, says that although BLF (as it was then) continued to offer support to people with lung disease and to the healthcare professionals caring for them, the collapse of Stormont in 2017 made this work more difficult. The charity, like many UK organisations, decided to halt public affairs and influencing work in NI.

The AUK–BLF merger enhanced the charity’s capacity to re-engage effectively with the civil service, even without politicians on the hill.

Building relationships with the Executive and Civil Service

When the Executive and the Assembly did start to meet again last year, the global pandemic was already emerging. “We very soon got caught up in that,” says Joseph. The charity has struggled to make direct contacts in the Department of Health since then: “I think one of our biggest frustrations is we still don’t know and have access to knowing who are the key civil servants that we need to be working with.”

There is, however, a different relationship with the Department for Agriculture, the Environment and Rural Affairs (DAERA). There, direct contacts were rapidly established and discussions held about air pollution. Given Joseph’s role, he is well placed to compare and contrast levels of engagement between government and charities. He recognises that much depends on size and capacity, especially when government efforts are primarily focused on dealing with the pandemic.

Whilst AUK–BLF has had “regular dialogue” with Whitehall in London and been “looped in” with meetings in Scotland, Joseph has found “it can take a very long time for us to get responses back from the Department of Health” in Northern Ireland. Charities for other health conditions have had similar experiences, he says. “The civil service we have in NI is obviously much smaller and focused on the job at hand and, not necessarily having the time or the capacity or the headspace to engage with third sector organisations, they just want to get on and…try and deal with these issues.”

Engaging with the Assembly

For Joseph, relationships with the Assembly have been more dynamic, having been established very quickly after MLAs returned to Stormont last year. “Politically we’d always planned on focusing our efforts on the Health Committee, or what would be the Health Committee”, he says.

When AUK–BLF approached its Deputy Chair, DUP MLA Pam Cameron, about the idea of forming an all-party group (APG) on lung health, Joseph says “[Pam Cameron] was very keen and very enthusiastic” about chairing it. In general, he added, “the warmth and support we’ve had from MLAs thus far has been really helpful.” Making the most of the pandemic transition to virtual proceedings, the APG on Lung Health has widened participation to more health professionals and, crucially, people with lung conditions themselves.

Though primarily a political grouping, the APG is also a forum for people with lung disease to have their voices heard. One meeting of the APG, for instance, heard about Long COVID rehabilitation services from physiotherapists, who worried that being required to provide these services without targeted funding could adversely affect the existing pulmonary rehabilitation services that are essential for people with lung conditions. These include COPD, Bronchiectasis and Idiopathic Pulmonary Fibrosis (IPF).

Another recent meeting, focusing on smoking cessation and tobacco strategy, has paved the way for meetings with officials on plans for the next phase of NI’s tobacco control strategy. Another key priority for AUK–BLF is putting the World Health Organisation’s (WHO) air pollution limits into law. “If we could do one thing in air pollution and nothing else then that would be it,” said Joseph, “because it would at least give us the right to breathe.”

Reforming health services, together

AUK–BLF’s other big aspiration for Northern Ireland is no less ambitious or fundamental: a comprehensive respiratory health strategy. With the context of NI’s stretched NHS in mind, Joseph argues that lessons from the pandemic should be built into service reform, “particularly how we adapt and think about what respiratory medicine should look like.” Lessons can also be learned on the potential of engaging with politicians across the party spectrum at Stormont.

Like other UK-based charities, AUK–BLF is alive to the potential sensitivities of name and place that are peculiar to Northern Ireland. Having “UK” and “British” in the title is just one of the “joys of a merger” of the two charities, Joseph says. Regardless of what the charity is called, AUK–BLF is in Northern Ireland to provide “hope, help and a voice to people” with lung conditions. On this ambition, in one of Stormont’s less-told stories, across the Executive and Assembly there is both consensus and common purpose to be found.

Notes:

AUK–BLF provides a range of support and services for people affected by lung conditions in Northern Ireland.

If you are interested in the patient panel or the All-Party Group on Lung Health, you can contact AUK-BLF.As well as its support and campaigning work, AUK–BLF funds research, such as Professor Robin McAnulty’s project to find new treatment for IPF, which is generally more prevalent in Northern Ireland than it is elsewhere in the UK.