The West Midlands ILN-INN April 2016
The West Midlands ILN-INN met in the bright and uplifting surroundings of St Giles Hospice Sutton Coldfield on 29th April for an educational day kindly sponsored by a grant for Roche. This was the second meeting and the programme was populated by the suggestions made from the previous meeting.
A capacity attendance of 38 nurses, physiotherapist and medics ensured that there was a fully-engaged audience participating in every subject with thought-provoking questions and stimulating points of view on all topics. The day started with an overview from the charity Action for Pulmonary fibrosis, Karen Hughes chair in waiting shared their vision ‘a world in which everyone living with pulmonary fibrosis has a better future.’ Karen also shared Actions commitment to extending their patient support group network across the country. The ILD Nurse Emma Briggs from Good hope Hospital who runs the support group at St Giles hospice invited one of her patients to share her story. Wendy described her moving, personal IPF journey through each stage, setting the scene and highlighting the need for education.
Prof Burge retired ILD lead at HEFT gave an update on current treatment pathways in ILD with a focus on IPF, there was much energetic discussion around management of side effects of the NICE approved antifibrotics. Clare Byrne ILD physiotherapist from HEFT gave a very enlightening lecture on cough, many patients find this to be the most troublesome symptom and we all took home some valuable new techniques. Sarah Hudson, the palliative care lead at Solihull Hospice, delivered an innovative and inspiring workshop on difficult conversations, introducing her new ‘FINK cards ‘which are soon to be launched. These cards promote difficult conversations and the audience found this exercise to be challenging and extremely useful. Charlotte Beddows, oxygen lead for Coventry, discussed the challenges of oxygen in patients with ILD, and her colleague Sue Townsend lead ILD CNS covered the complex issues surrounding CTD-ILD.
Edward Parkes ILD Physiologist at HEFT reminded the group of the importance of physiology measurements in ILD and how longitudinal data is useful in understanding disease trajectory.
Jaqui Piggott lead ILD CNS at Stoke described their pioneering work in developing the first Smartphone App for ILD patients and she explained its technology applications and value in patient care.
The ILD specialists reported to have had a stimulating day – everyone valued the time away from work to learn, reflect and collaborate. The team spirit in West midlands is real and palpable. We plan to meet twice a year with a new team hosting and delivering each ILD study day.
Geraldine Burge Chair ILD-INN