Susi and Julia

Hospital/ Department visited: Glasgow Children’s Hospital, Respiratory Department

Experiences:  
We have had two video consultations with the Respiratory Paediatric Department at GCH – one in May and one in September. Both went really well – we were able to see the consultant and the respiratory nurse and could update them on Julia’s condition and any problems and concerns we had. The technology worked all in all well, for the second call the sound was not working initially, but that could be fixed, maybe it was an added technical problem because the consultant was self-isolating and joining from her home.

An essential part of Julia’s examinations is listening to her chest and this was not possible during the video call, although I have learned from a respiratory nurse in a Rare Disease/ Genetic Alliance Zoom meeting that that can meanwhile also be done remotely. Prior or as part of our check-ups there is also a lung function test for Julia – we were sent the Spirometre after the consultation, also a set of measuring scales (height) in addition to the ones for weight that we have at home already. It took a little longer to set up the appointment for the lung function and we had to download an app onto my phone for that and then follow the instructions for the lung function over the computer/ video call, while doing the lung function on the app, which worked surprisingly well. However, when the results were send to us, I realised that a mistake had been made in regards to Julia’s height (I had e-mailed Julia’s height and added in an aside the height of my older daughter, who was delighted to have surpassed the height of her grandmother…that was a mistake because they didn’t check the numbers and based the calculation on Julia’s taller, older sister) – I still haven’t seen the corrected outcome.

At the second check-up, a lung function had been agreed, but so far we have not been contacted by the department and I had forgotten to chase it up (filling in this form has reminded me and I will do so now, also check for the results from May).   Another experience should have happened today – phone consultation with an ENT-consultant, but unfortunately, something must have gone wrong with it. We were supposed to attend in person, but considering that we are only a day away from moving into the highest level (4), I decided to phone and change the appointment to a virtual one. This time, video call was not an option, but phone call and I was contacted on Monday to confirm the phone number and time. We were sitting next to the phone for one hour, phoned the department from my mobile after 30 minutes and left a message on the answer phone, but still have not heard back, another thing to investigate.  

Conclusion: Generally, I would appreciate video consultation in non-urgent/ routine check-ups – it saves travelling one hour either way and seems to lead to satisfying results. In more urgent/ problematic cases and when the risk of Corona-infections is less prevalent than it currently is, I would prefer to have a personal check-up, but I think that maybe a way forward could be by including GP-practices: if they were to physically examine the patient, then feed back the data to the specialist, who would then evaluate both data and personal talk with the patient to come to conclusions about the treatment/ care for the patient.