Two NHS trusts pilot innovative ILD pathway: Boehringer Ingelheim partnership

This advertorial is part of a Collaborative Working Partnership between Royal Papworth Hospital NHS Foundation Trust, East Suffolk and North Essex NHS Foundation Trust (Colchester Hospital) and Boehringer Ingelheim Ltd. The article and video are co-developed with the hospital trusts and funded by Boehringer Ingelheim. Boehringer is providing project management and funding; Royal Papworth and Colchester Hospitals are providing funding and resource to carry out the project.

Interstitial lung disease (ILD) specialist nurse Naomi Hosking talks about the disease, and how a new shared clinic is bringing about improvements for patients.

With ILD, the alveoli become damaged, leading to scarring which makes it harder for the oxygen to pass through. This can cause symptoms such as breathlessness on exertion, fatigue, and a continuous dry cough (Action for Pulmonary Fibrosis, 2024a; Wijsenbeek et al, 2022).

The most common form of fibrotic ILD is idiopathic pulmonary fibrosis (IPF), which has a poor prognosis with a median life expectancy from diagnosis of just 3-5 years if untreated (Wijsenbeek et al, 2022).

It is estimated that there are 8000-9000 new cases of IPF per year (using data from 2008-18) (Gupta et al, 2024). With over 200 forms of ILD (Wijsenbeek et al, 2022), diagnosis and management is complex and requires assessment by a multidisciplinary team (NHS England, 2018).

Unmet needs in ILD

Over the past two decades, there have been increases in the incidence and mortality of ILD in the UK and Europe (Gupta et al, 2024; Salciccioli et al, 2022). Patient charity Action for Pulmonary Fibrosis states that with increasing demand, ILD services are not future-proofed to ensure equitable access to care (Action for Pulmonary Fibrosis, 2024b).

In England, ILD service and care pathways are delivered via specialist centre and referring hospital, providing high-quality care for relatively low numbers of people, over a wide geographical area (NHS England, 2018). This can create huge service demand pressure on the specialist centre, especially if the number of hospitals referring into the specialist centre is high.

The challenge is to find a balance between seeing and diagnosing new patients, with continuing the care pathway for diagnosed patients at their follow-up appointments. When you add in the burden this can have for patients and their support person having to travel many miles from home to the specialist centre, it’s clear that a solution to bring care closer to home is required.

Patient-centric solution

Two East of England NHS foundation trusts, Royal Papworth Hospital in Cambridge and Colchester Hospital in East Suffolk and North Essex, have joined forces to increase the support and reduce the travel burden for their ILD patients by creating a hybrid ILD clinic. What this means is follow-up appointments are being held face to face at Colchester Hospital (referring centre) with the consultants from Royal Papworth Hospital (specialist centre) joining virtually.

Bringing care closer to home

The key objectives of this pilot pathway are to bring care closer to home, create a supportive environment for patients and their families, and remove unnecessary travel to Cambridge and back; on average a three-hour round trip. Travel for people with ILD can be exhausting and challenging as they may need to carry oxygen with them. Even if hospital transport is available, the patient’s support care person cannot accompany them and must travel independently. Sometimes the time of the appointment at Royal Papworth Hospital requires an overnight stay, adding to the already burdensome travel costs.

"Dr Fiddler and I have had this idea for a joint ILD clinic for quite some time, but it would not have been possible without the support of Boehringer Ingelheim for our collaborative working project.  We are already seeing an improvement in the standard of care thanks to bringing care closer to home for our ILD patients based in the East Suffolk and North Essex NHS Trust region,” said Dr Badiger, consultant respiratory medicine, Colchester Hospital.

The critical role of the ILD specialist nurse

This collaborative working project started in October 2023 and successfully recruited ILD specialist nurse Naomi Hosking into this new role within the secondary care ILD team at Colchester Hospital to reduce some of the bottlenecks in the treatment pathway, as well as establish a dedicated helpline for patients locally.

“A diagnosis of ILD can be devastating but I am confident that a greater awareness and understanding within the health and social care community will lead to improvements in our patients’ lives,” explained Naomi.

“This is definitely one of the most rewarding nursing roles I’ve had because, together, our two trusts are bringing care closer to home for people who really need their lives made as easy as possible, as they navigate life with ILD,” Naomi added.

Impact on local ILD patients

Within the first four months, the helpline has received more than 80 calls, clearly demonstrating the unmet need that ILD patients are feeling when it comes to having someone local to talk to and provide information and support relevant to their locality.

Mr David Hansom attended his first follow-up appointment at the hybrid clinic at Colchester Hospital in March: “Whilst I really appreciated and valued the treatment at Royal Papworth, it meant a challenging 180-mile round trip which left me feeling anxious. If I had an early morning appointment, my wife (a retired senior nurse) and I had to pay to stay overnight in Cambridge,” explained Mr Hansom.

“The hybrid consultation at my local Colchester Hospital was a great experience. It took less than a quarter of the time to travel there and back, leaving me feeling less anxious and more relaxed.  I had the same level of testing, care and professionalism, with the added bonus of being seen by a lovely ILD nurse and not one but two consultants, thanks to the Royal Papworth Hospital consultant joining virtually. As a 75-year-old living with the burden of ILD, it’s definitely a significant life improvement for me.”

A total of 25 ILD patients have been seen up to and including June 2024, all of whom have completed a comprehensive questionnaire to provide the clinical team with detailed insights into how they are feeling, what their unmet needs are and how the joint clinic can support them, and fellow ILD patients, even more in future.

NHS England devolution of commissioning services

"This joint ILD clinic is very timely in light of the NHS England devolution of commissioning services announced in April 2024. This positive change in the model of care from tertiary to secondary has been a real success and demonstrates the need for bringing care closer to home and putting the patient first. We are early in the journey of transformation and already seeing the benefits to patients, both social and clinically delivered, by providing care closer to home.

“The development of a local service will free capacity at the specialist centre to see new patients and to treat ‘unstable’ existing patients, resulting in the ability to tackle long waiting lists for diagnosis and treatment. Waiting lists will also benefit from better referrals as expertise in identifying patients to be referred to the centre is developed locally”, explained John Hartley, Commissioning and Contract Manager, East Suffolk and North Essex NHS Trust.

Conclusion – equitable access to specialist care

“By increasing the number of ILD patients receiving follow-up care closer to home at Colchester Hospital, we anticipate that our follow-up waiting list at Royal Papworth Hospital will reduce, opening up more appointment and lung function slots for new patients to receive a diagnosis more quickly", concluded Dr Christine Fiddler, consultant respiratory physician, Cambridge University Hospitals NHSFT and Cambridge ILD Service, Royal Papworth Hospital NHSFT.

This model of care is more efficient for the NHS, and for ILD patients. It provides equitable access to care for all patients with ILD, not just those who live close enough to access a specialist centre. The goal is to prove sustainability of this model of care beyond this pilot and encourage other secondary care centres to adopt this strategic model and experience the system-wide benefits and improved care for patients.

References

Action for Pulmonary Fibrosis (2024a) What is idiopathic pulmonary fibrosis? actionpf.org (accessed 7 June 2024).

Action for Pulmonary Fibrosis (2024b) Interstitial Lung Disease Care Pathway. actionpf.org (accessed 7 June 2024).

Gupta R et al (2024) Incidence, prevalence and mortality of idiopathic pulmonary fibrosis in England from 2008 to 2018: a cohort study. Thorax. doi: 10.1136/thorax-2023-220887.

NHS England (2023) Adult breathlessness pathway (pre-diagnosis): diagnostic pathway support tool. england.nhs.uk, 4 May (accessed 7 June 2024).

NHS England (2018) Interstitial Lung Disease Service Adult. NHSE.

Salciccioli J et al (2022) Interstitial lung disease incidence and mortality in the UK and the European Union: an observational study, 2001–2017. ERJ Open Research; 8, 3, 00058-2022.

Schoenheit G et al (2011) Living with idiopathic pulmonary fibrosis: an in-depth qualitative survey of European patients. Chronic Respiratory Disease; 8: 4, 225.

Wijsenbeek M et al (2022) Interstitial lung diseases. The Lancet; 400: 10354, 769-786.

NP-GB-104304 June 2024