Mark Major, Hull and East Yorkshire Hospital Trust
Monday mornings come around all too quickly. As a specialist nurse in pulmonary fibrosis, my days and weeks are always busy: nurse led clinics, multi-disciplinary team meetings (MDT’s), home visits, emails, phone calls, organising meetings, paper work, etc, etc.
My working week usually starts just before 7am on Monday morning in the office, catching up on the weekends emails, if I haven’t looked over them over the weekend (a habit that doesn’t go down too well whilst sat in bed on a Saturday or Sunday night!).
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. Unfortunately, I don’t have the luxuries of nursing support, in my clinics, so I set up my room with all the equipment I will require for the session: saturation monitor, stethoscope, BP machine, thermometer etc.
Respiratory specialist – Dr Simon Hart
I catch up with Dr Simon Hart, our respiratory consultant, just before 9 am prior to the clinic. We start by discussing 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!
My Monday and Wednesday afternoon clinics were set up mainly for initiating or reviewing patients on either Nintedanib or Pirfenidone. Some patients have been coming for just a few months and others have been coming to see us for 3 or more years! Since the launch of these drugs, we have initiated hundreds of patients on to the therapies. Some have coped well and some not so well. As numbers grow, we are looking to set up further clinics between myself and Mandy (my band 6 specialist nurse).
Tuesdays involve 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 piled up. I list the jobs I have to do and tick them off as they get completed. Mandy and I plan the day ahead. In Hull we offer a specialist humidification service to our patients on high flow oxygen. The machine we use heats and humidifies oxygen and allows us to prescribe flow rates up to 15 litres/min to be delivered via the nasal cannula. The patients love the machine. Within 24 hours of starting, most sores, scabs and bleeding are resolved. We visit these patients every 4 weeks to change the circuit and deliver the water that is needed for the machines to work. Saturations are checked, chests listened to and any concerns or issues dealt with!
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, microbiology and specialist nurses to determine a diagnosis and formulate a management plan when a diagnosis is not always straight forward.
The Hull Interstitial Lung Disease Service has been running a patient support group for the past four years and run every three months. I organise the agenda, speakers and invite patients four weeks prior to each meeting. Our patients are very generous and we receive a large number of raffle prizes and donations for our research fund.
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.