Mark Major, Specialist Nurse from the Hull and East Yorkshire Hospital Trust tells us about what it's been like working as an ILD specialist over the last few years.
The last two years have seen immense challenges and changes for us all. As we recover, it’s heartening that we’re seeing some things beginning to resemble normality. As a specialist nurse in pulmonary fibrosis, my days and weeks remain as busy as ever.
So what’s a week in the life of a specialist nurse like?
My working week kicks-off at 06.30 on Monday morning in the office. I’ll catch up on the weekends emails, phone messages and performing our new routine of self testing for COVID19. LAMP tests are submitted twice a week to ensure our patients and work colleagues remain safe. Although masks are no longer required in shops pubs and restaurants we continue to wear them throughout the day at work.
Preparing for the nurse led clinics that day are next on the agenda, ensuring I have all my nursing notes and drugs for those patients coming to see me and collecting their Pirfenidone or Nintedanib.
I usually amble down to the clinic around 8.30 to get set up, sometimes with a nursing or medical student in tow.
I hope to catch up with Dr Simon Hart, our respiratory consultant, just before 9 am prior to the clinic. We discuss any of the day’s patients that we may need to see as a team.
Invariably, during the course of the clinic, Dr Hart will pop his head around the door at some point asking for either information packs on pulmonary fibrosis or one or both of the anti-fibrotic drugs. Working in the next clinic room to Dr Hart makes life easier for both of us. If I have any concerns or questions, I can pop through to him. Similarly, he can send patients through to me for a chat about medication, support or “nursey” issues!
Our Monday and Wednesday afternoon clinics are usually full for reviewing patients with all types pulmonary fibrosis, not just IPF. As time passed and anti fibrotics (Nintedanib and Pirfenidone) became available our clinic numbers grew. Some patients have been coming for just a few months and others have been coming to see us for 5 or more years. Since the launch of these drugs, we have initiated hundreds of patients on to the therapies.
We were all delighted and thrilled to hear the news that we will soon be able to prescribe Nintedanib for other types of progressive fibrosis. It will not be without its challenges though. We are already planning for more clinic time and staff to deal with the extra work that will bring.
Home visits
Tuesdays see home visits and office work. Letters are signed off from the previous day’s clinics, checking test results and going through the emails that have arrived. We usually receive a list of prescriptions that need renewing for our home delivery patients. I list the jobs I have to do and tick them off as they get completed. Mandy and I plan the day ahead. The Radiology MDT starts at 1pm – all virtual now so usually we incorporate our dinner at the same time!
In Hull we offer a specialist humidification service to our patients on high flow oxygen. The machine we use, my Airvo, heats and humidifies oxygen and allows us to prescribe oxygen flow rates up to 15litres/min to be delivered via the nasal cannula. The patients love the machine. Within 24 hours of starting, most sores, scabs and bleeding are usually resolved. We visit these patients every 8 weeks to change the circuit and deliver the water that is required for the machines to work. During their home visits, oxygen saturations are checked, chests listened to and any concerns or issues dealt with!
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As a referral centre we receive patients from a large geographical area. Complex patients are discussed at the interstitial lung disease (ILD) MDT. Respiratory consultants are joined by consultants from the radiology team, microbiologists and specialist ILD nurses to determine a diagnosis and formulate a management plan. Patients who have been referred for anti fibrotic medications are also reviewed and put forward for therapy if appropriate.
Thursday’s will find us on the respiratory wards reviewing any patients that may have been admitted. Discharge planning starts early to ensure a safe transition back home.
Friday mornings may see me wandering up to Dr Harts office with a pile of notes for an impromptu MDT and case discussion. Images will be reviewed tests ordered and referrals made.
Further home visits on the Friday could take us far and wide, sometimes travelling a hundred miles in a day. Back in the office we start preparing for the following weeks clinic, writing prescriptions, collecting medicines and ensuring everything has been sorted prior to leaving for the weekend.
The Hull Interstitial Lung Disease Service had been running a patient support group for a number of years prior to COVID, but this unfortunately had to cease with the outbreak. We look forward to the day when we can meet face to face again.
Why do I do what I do?
My patients (and their partners, carers, loved ones) are a special group of people who are so grateful for what we do for them.
It’s never a chore, getting up and coming to work in the morning, knowing we are making a difference for these people in their time of need. Working as a team, reviewing cases, solving problems and planning care with my colleagues makes you feel a valued member of that team. We all have one common goal ... to do the best for our patients.