Running an ILD service: A Northern Ireland perspective

Tuesday, June 13, 2023

Respiratory Futures recently spoke to some of the Interstitial Lung Disease (ILD) team at Western Health and Social Care Trust (Altnagelvin Hospital) in Northern Ireland.

Ann Box (ILD Specialist Nurse), Nazia Chaudhuri (Senior Clinical Lecturer at University of Ulster and Respiratory Consultant with specialist interest in ILD), Sandra Taylor-Stratford (ILD Specialist Nurse) and Rose Sharkey (Respiratory Consultant and Clinical Lead of Respiratory Services) shared with us a little about the service they run and the impact this has had on improving patient health.

Can you tell us a little bit about your ILD service, including the fibrosis-specific pulmonary rehabilitation service and clinical trials?

In Northern Ireland (NI), all respiratory physicians are able to diagnose, manage and prescribe antifibrotics. Expertise in managing patients with ILD varies according to individual experience and so individual trusts within NI have identified a specific consultant lead for ILD patients who sees and manages the majority of the ILD patients in that region.

The Western Health and Social Care Trust (WHSCT), Londonderry, Northern Ireland consists of two respiratory hospitals geographically located 50 miles apart. The ILD service commenced in the northern sector of the WHSCT with one part-time nurse in 2017. The nurse provides education to patients on disease management, symptom control and counselling for anti-fibrotic management.

In August 2022, we developed the regional ILD network whose principal aims are to:

- Ensure equality of patient access to multi-disciplinary team (MDT) diagnosis.

- Ensure patients have equality of access to treatments for their condition, clinical trials and lung transplantation.

- Improve diagnostic accuracy by providing a specialist MDT review for patients.

- Set up networks of care so that care is equitable throughout Northern Ireland.

- Share and disseminate national ILD guidelines.

- Jointly raise standards of care for ILD patients to improve prognosis and reduce disease and treatment related burden.

- Encourage collaborative research leading to better understanding and treatment of ILD.

This is a group of respiratory and rheumatology consultants, specialist nurses, pharmacists, physiotherapist and trainees with an interest in ILD. We meet three times a month to discuss new developments in ILD and service improvements. With this network we have developed a standards of care document with the aim of ensuring there is equitable care across NI. The network ensures there are close collaborations regarding equitable access to research trials and we now have five centres in NI working together to delivering clinical trial research to our patients.

What impact has the ILD service had on patients in Northern Ireland?

Patients from the southern sector of the WHSCT did not receive equality of access as they did not have access to a specialist nursing care, a key standard of the NICE IPF guideline recommendations. NI has the highest incidence and prevalence of ILD in the UK and thus a part-time nurse in the Northern sector was soon overrun with referrals and increased waiting times. With additional funding we employed a full-time ILD nurse in the southern sector to provide the same service and another part-time nurse for the northern sector. 

The NICE IPF guidelines also recommend access to pulmonary rehabilitation (PR) and due to the impact of the COVID pandemic our wait times for PR have increased to almost 2 years. This is a real unmet need in a patient group with limited survival similar to most cancers. In 2022 we employed a part-time physiotherapist to provide a PR programme specifically for ILD patients. We believe our PR service is one of the very few PR service in the UK which is specifically and solely targeted to the needs of patients with ILD.

What are some of the main successes of your service so far?

WHSCT having a dedicated team of nurses to manage patients with ILD by acting as a point of contact for patients and carers. Having physiotherapy input to develop a tailored pulmonary rehabilitation programme for ILD patients has been instrumental in improving patients and carers knowledge of their disease, improving their fitness levels and promoting self-management skills. We have composed a programme which is specific to the needs of patients with ILD with targeted education on what is fibrosis, how to manage breathlessness and cough, dietary advise, clinical trials in pulmonary fibrosis amongst others.

Our physiotherapist has the knowledge and expertise to ensure exercise programs are tailored not only to the patients’ needs but this is also underpinned by the knowledge of the disease and the respiratory mechanics that cause lung function impairment and breathlessness. We feel as a result our patients receive a more knowledge based and ILD specific PR programme compared to a general PR programme. Where Patients have often commented the general programme more specific to the needs of a patient with chronic obstructive lung disease (COPD) with talks about smoking cessation and inhalers which are often not relevant to patients with ILD.

Our patients now have timely access to the PR programme, specific to their needs. We have utilised assessment tools used to measure shortness of breath, quality of life and mental health of patients participating in our pulmonary rehabilitation program and demonstrated that the majority of patients had improvements in their breathlessness and quality of life. We hope to present this data as an abstract at the BTS Winter Meeting. Feedback questionnaires were very positive with regards to patient satisfaction with the programme.

The ILD network ensures of healthcare professionals are educated about updates in ILD and the development of the standards document aims to raise the quality of care and access to therapies for all ILD patients in NI. Our collaborative approach to research means that all ILD patients in NI have the opportunity to take part in research trials.

Have there been any challenges in putting together your service? How have you overcome these?

The biggest challenge has been seeking funding in NI from the Public Health Agency regarding the added value of ILD services. We are pleased that pulmonary fibrosis is going to part of the respiratory care plan for NI and thus we can enter discussions regarding appropriate funding of ILD services.

Recruitment and retention of staff into posts has also been a big challenge. It is imperative that posts are of educational value and we hope the ILD network will influence this.  

What is some advice you would give to other hospitals who may be working on improving their ILD service delivery?

Getting appropriate funding is vital before you can expand your service.  There is always a strong case for funding to improve patient care however we are competing with all the other services who also require this investment. Engage with patients and other hospitals in your region to ensure a uniform service which benefits the needs of patients, and learn from each other about the submission of successful business cases. Get the support of your clinical directors about the unmet need for our patients and collaboratively submit business cases for expansion of the service. Data is always key to the development of a business case and collecting data on lengthy patient waits for services and comparison against a national standard is always helpful to demonstrate our short fall and the need for investment in the service.