Increase funding for treatment of pulmonary fibrosis & interstitial lung disease

We ask the Government to prioritise funding for PF and interstitial lung disease services. PF is terminal and kills approximately 8,000 people a year. It has a survival rate worse than many cancers. Increasing funding and creating a care pathway equal to cancer care could improve health outcomes.

Imagine trying to breathe through cling film. This is the reality for many of the 70,000 people in the UK living with PF - a group of 200+ diseases that permanently scars lungs.

The UK has one of the highest mortality rates in Europe for ILD and pulmonary fibrosis patients are at risk of poorer health outcomes post COVID-19.

Investment and prioritisation of funding for ILD services is required urgently. An improved PF care pathway could improve outcomes for patients living now, before it’s too late.

NHS England is responsible for the commissioning of services for interstitial lung disease (ILD) and funds the cost of anti-fibrotic treatments to treat this disease. Access to these treatments has recently been expanded to patients with non-idiopathic pulmonary fibrosis following the publication of the National Institute for Health and Care Excellence’s technology appraisal ‘Nintedanib for treating progressive fibrosing interstitial lung diseases’ in November 2021.

NHS England’s service specification outlines the requirements of a quality service and requires the completion of metrics through the ILD Specialised Services Quality Dashboard. The Specialised Respiratory Clinical Reference Group contains clinical members who advise NHS England on ILD services and includes a member of a pulmonary fibrosis charity as a patient and public voice member. It is expected that commissioning responsibility for these services will be delegated by to integrated commissioning boards with effect from April 2023, while NHS England will retain responsibility for setting national standards.

Patients with pulmonary fibrosis are cared for by regional specialist Interstitial Lung Disease services. These are commissioned by NHS England. In order to be referred to a specialist service patients need to be identified in primary and secondary care. Early and accurate diagnosis is a priority for NHS England, and the work to improve this area of clinical care is underway, which should have an impact on reducing delayed diagnosis of pulmonary fibrosis.

This work is as follows: