Driving ILD service improvement through collaboration

The NHS is facing unprecedented challenges exacerbated by the pandemic, where demand for services far exceeds capacity to deliver care. Interstitial lung disease is no exception to these wider system pressures.

ILD presents a significant burden to patients and health systems with one of the most common diseases, idiopathic pulmonary fibrosis, often having outcomes worse than several major cancers.[i] Data from the national ILD service evaluation, an initiative led by the ILD interdisciplinary network, shows 10,358 new patients were referred to ILD specialist centres in England in 2022.[ii] Thus service demand remains high and significantly above the 2,000-4,000 outlined in the service specification.[iii] Although services usually have dedicated interdisciplinary support, variation in the workforce across England means ILD care provision is under-resourced.[iv]

To address these challenges, and after gathering insights from national ILD experts in March 2023, Boehringer Ingelheim is calling for policy changes to drive service improvement, outlined in the co-developed report, Interstitial lung disease: Driving towards service optimisation in the new NHS.[iv]

In conjunction with the ILD community, Boehringer Ingelheim want a clear national ILD pathway to be established, with an updated service specification. This will support the additional challenge to ensure more consistent data collection across the pathway, as clear visibility on performance data is central to improving standards and reducing variation. The other challenge is ensuring increased funding to improve the resilience of the ILD workforce.

While the ILD community recognises the need for change, much more needs to be done to put this agenda on the radar of commissioners, decision-makers, and policymakers. This includes the Boehringer Ingelheim and Action for Pulmonary Fibrosis co-organised event, Enhancing patient outcomes: collaboration for the improvement of ILD services across the UK, held in November 2023.

There is an urgent need to address the challenges in the ILD pathway, data and funding to address varying outcomes and health inequalities

This event brought together key stakeholders including patients, healthcare professionals, and politicians to discuss critical issues in ILD and help identify solutions to improve ILD service provision for people living with the disease. There was consensus that there is a real opportunity to improve earlier diagnosis, referral and management of ILD patients, but there was recognition that this relies on building a more sustainable, better-trained workforce and improved data collection.

Marium Naqvi, co-chair, ILD-IN: “The results of the national ILD service evaluation demonstrate the demand for ILD services continues to rise but services are not adequately resourced to manage. This can impact timely diagnosis and appropriate care for people with ILD.”

Louise Wright, CEO, APF: “People living with pulmonary fibrosis take too long to get diagnosed and face a postcode lottery for care. They often tell us they would have better support if they had cancer. This is unacceptable. Through collaboration and alignment, OneVoiceILD’s new national integrated care pathway draws on expertise from across the whole patient journey and the needs of people living with pulmonary fibrosis to improve access to diagnosis and appropriate care across the UK.”

Doug Clark, ILD Franchise Director, Boehringer Ingelheim: “There is an urgent need to address the challenges in the ILD pathway, data and funding to address varying outcomes and health inequalities. Working with APF, Boehringer Ingelheim is proud to bring together policymakers, researchers, clinicians and patients at this year’s BTS meeting to help improve the lives of people living with ILD.”

Boehringer Ingelheim’s co-developed report calls for policymakers to establish a clear national ILD pathway with an appropriately funded workforce and data collection. Click here to request a copy.

[i] National Health Service. Getting It Right First Time. Respiratory Medicine. GIRFT Programme National Specialty Report. 2021. Available here. (Accessed December 2023).

[ii] Interstitial Lung Disease Interdisciplinary Network. Interstitial Lung Disease Service Evaluation: A snapshot of specialist interstitial lung disease (ILD) services in the United Kingdom and recommendations for improvement. December 2023. Available here. (Accessed December 2023).

[iii] NHS England. Interstitial Lung Disease (Adults) Service Specification. Last updated July 2019. Available here. (Accessed December 2023).

[iv] Quint J., et al. Interstitial Lung disease: Driving towards service optimisation in the new NHS. November 2022.