Welcome to Respiratory Futures. Could you tell us how the idea of creating a network to decentralise ILD care came along?
The Manchester ILD service covers a large geographical area with some patients having to travel up to 100 miles each way to attend their clinics, and distance was often reported as a barrier to accepting treatment for some patients with IPF, who in the area have an average age of 74 years.
We know that for some patients, long-distance travel was not feasible nor accessible. We thought that if we could identify key areas of care and develop clinics that were easy for people to access to address them, it would encourage patients to consider treatment and ensure compliance and side effect management.
How did you choose your members; did they need to be specialists?
The North West ILD network meetings were crucial to us developing our own nurse-led network. We were able to identify specialist teams from key referral areas who had a special interest in ILD and were keen to develop a more joined up approach to managing IPF patients.
How do you keep in touch within the network?
We communicate using secure email but have recently started regular MS Teams meetings with some of the newer members of the network to support the development of their services. This is an approach we hope to bring to the whole of the network to ensure safety, enhance patient care, encourage learning and keep everybody updated.
What kind of support and services are the members of the network providing?
The network teams have established either face to face or telephone clinics to monitor and support the patients. They provide local joined up care with other services such as oxygen services, palliative care, and hospices. They follow a structured medication-specific pathway to ensure continuity of the care developed by the Manchester ILD nursing service. Many of the teams lead local pulmonary fibrosis support groups.
And what is your role, as the lead centre?
We see the new patients in our day case unit for a full assessment and the investigations needed. We discuss the disease, prognosis and treatment with the patients, including drug counselling and we discuss the recruitment to relevant clinical trials.
We then centrally coordinate patients care across the network, and provide the members of the network with specialist advice, support, teaching and manage the most complex cases. We are also the direct link to the prescribing centre for any complex query or difficult to manage side effect to treatment, and we prescribe the antifibrotic treatments.
What has been the network’s impact on patient care?
The network meets a lot of the challenges that we experience in IPF care by ensuring equitable access to treatment and services, side effect and symptom management. It brings specialist support closer to home with access to local specialist services such as pulmonary rehabilitation, oxygen, and palliative services. It helps maintaining a good quality of life for our patients.
How did the COVID-19 pandemic affect the work of the network?
The North West ILD network used to meet around four times per year to share knowledge and plan ahead, and unfortunately these meeting have not taken place due to COVID -19. However, we have been able to continue monitoring our patients remotely throughout the pandemic and we have been able to support the teams if the workload necessitated.
Before the pandemic, we helped to run a face-to-face patient support group at the hospital. When the outpatient’s clinic closed due to the pandemic in March 2020, we started to receive a lot of calls from patients and carers. They needed advice on managing their conditions and were confused by the government advice. ILD wasn’t added to the shielding list until later in April, so there was a lot of confusion as to what they should do.
Phone calls were not really the most efficient way to deal with the large number of enquiries, and many of the concerns were shared by most patients. We felt that patients and carers needed some support and reassurance so we decided to organise a virtual support group on Zoom to answer all questions at once. The group is still going today.
How does this support group work?
It started as a Q&A session, and it grew into a more structured event. For the initial meeting, we contacted local support group leaders by email to spread the word, and later created a mailing list so we could invite more people directly. Today we have around 160 people on our mailing list, many attend the video calls regularly. At the last we had around 50-60 people. We also write summaries of each meeting and send it to those that can’t attend and publish these notes on our website.
We have tried to evolve the sessions as we identify issues that are common among our patients. For example, we realised that some patients were becoming more breathless since they couldn’t leave the house as freely as before and attend exercise sessions, so we arranged a session with a physiotherapist, who offered advice on how to exercise at home. We have had our ILD specialist pharmacist answering questions about the covid vaccines and a specialist talking about cough. The choice of topic is guided by the patients.
It has been very well received so far; patients really appreciate being able to ask questions directly to the specialist team- including consultants, nurses and pharmacists- without having to wait for their routine appointment. It clears a lot of anxiety.
We try to hold these meeting monthly, but it often slips to every 6 weeks. It’s just the two of us organising them and sometimes it’s difficult to keep up with the meetings as well as with the regular work at the centre.
We intend to continue providing this virtual support group post-pandemic as it is more accessible to people who attend the ILD service from further afield. We are currently working on a project to evaluate the group to help us develop it in future months.