Dr Lesley Kay is a Rheumatologist at the Freeman Hospital in Newcastle upon Tyne. Here’s her message for people living with axial SpA (AS) during the COVID19 pandemic. [Published 9 April 2020]
You’ve probably heard recently that your outpatient appointment is cancelled with no firm date for a replacement. You may have had a call from the monitoring team telling you that actually, you don’t need to come yet for that blood test they normally make so much fuss about. You might have been told that your usual infusion is being swapped for an injection you need to learn how to give yourself at home. That new patient appointment you’ve been waiting so long for has suddenly been cancelled, and you don’t know when you’re going to be able to tell someone about what has been happening to you, get a diagnosis and understand what treatment choices might be available for you.
So much has changed so quickly. Only a few weeks ago we were doing our normal outpatient clinics, ordering tests and writing hundreds of prescriptions every day. I took two weeks’ annual leave in the second half of March and came back to a totally changed department. Five of our nursing and administration team are off sick with coronavirus infection. Our professors have left the university behind and joined the clinical team full-time. Two of our consultants and all of our doctors in training have gone over to the medical wards to work with the coronavirus patients, our specialist physiotherapist is organising services so patients who can possibly manage out of hospital get home quickly, and some of our nurses, secretaries and consultants have health conditions themselves that mean they need to work from home. That phone call you had from the nurse specialist about your next prescription? Probably from the kitchen table with small children rampaging in the room next door.
We have been thinking hard about each of you individually. A group of us – led by the President of the British Society for Rheumatology – had only a couple of days to work out who had to live with the most severe restrictions, ‘shielding’, because of their risk from this unknown virus. We have had to review every patient who should have been having treatment from our day case unit. If you’re on infliximab, can we stretch out the gaps between your infusions to cut down your risk of coming into hospital so often? Could you be on an injectable drug instead so you don’t have to come in? Should we really start your treatment now, if it might make you more susceptible to infection? I spent today going through the huge list of people waiting for scans and tests, because our x-ray departments don’t want to expose you to the risk of coming into the hospital, are short of staff and scanners are being used for the patients with coronavirus. It’s really hard, working out who needs to come urgently despite the risk, knowing that the other people will all have to wait. We don’t know how long the wait will be and we do know how awful it is to wait, often in pain, to find out what the cause is and what we might be able to offer you. Similarly, we just don’t know when we can start to run normal clinics again, when we can see you, answer your questions, troubleshoot with you. We feel it and we’re sorry.
There will be good things to come out of this. The whole NHS has suddenly had to come to terms with telephone consultations and video conferencing, just like you have with Zoom and Houseparty calls with your family. How should this work when we settle into the new normal? Can we be more creative with the ways we run our services, can we work more in teams, can we relax about some of the processes and safety concerns that we have always held to? Things won’t be the same again and your rheumatology team would like to hear from you how we should change.
We’re looking forward to welcoming you back.
We’d like to thank Dr Kay for this moving insight into how our healthcare system has changed so significantly and so rapidly in recent weeks. We are sure it is reassuring for patients to know that they haven’t been forgotten amongst COVID19 and that their wellbeing is still a priority, even if it is happening in a different way to what we are all used to. We are proud to have such amazing health professionals as Lesley working alongside us, advising us on medical issues but also working together on programmes like Aspiring to Excellence, of which Lesley and her team at the Freeman Hospital in Newcastle upon Tyne are members. Thank you to all of our colleagues in the NHS – you are amazing.
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