Today’s blog is written by Lesley Harrison, the Head of Patient Support & Welfare at the AKU Society.

The past fifteen months have been tough for everyone, and the AKU community is no exception. When we held our clinics at the NAC in March 2020, we had no idea how all our lives would change in the months ahead.

An unknown virus began to spread across China in December 2019. By January 2020, we had a name for this virus, Covid-19 and who would have thought how this name would be etched in our lives for months to come.

As the month progressed, we sadly heard of the first deaths in the UK from Covid-19, and we saw a steady increase in the number of cases and admissions to hospitals. The first two cases were seen in England at the end of January 2020, and the number of people with the virus slowly began to rise through February. By the time we held the NAC clinic in March, we were advised not to shake hands, and there was an emphasis on hand hygiene. On 23rd March 2020, when we were all told to stay at home, we had no option but to cancel all NAC clinics.

As we entered the Summer of 2020 and sensed a glimmer of hope that the worst could be over, lockdown restrictions started to be eased. The hospital trust gave the NAC the go-ahead to restart face to face clinics and in September, we managed to see ten patients. We weren’t accommodated as usual on the Clinical Research Unit (CRU) as this was taken over for Covid research. Instead, we were based on the ground floor of the hospital in K-Clinic. Not ideal, and the patient experience wasn’t quite the same, but at least we could see patients again. Unfortunately, our hope and optimism was short-lived. As Covid cases started to rise again, we entered the second wave and the NAC was again cancelled for the foreseeable future.

With the temporary closure of the NAC, we had to rethink and adapt how we supported our patient group. The need for telephone support significantly increased, and plans were put in place to implement virtual consultations as an alternative to the annual face-to-face reviews. Lesley and Shirley held weekly zoom meetings to review the remote monitoring of the patients. Issues arising were discussed at length and plans put in place for going forward.

With access to comprehensive care on hold and local healthcare limited to remote consultations, we have seen a noticeable impact on the mental wellbeing of some of our patient group. Through funding from the National Lottery Covid-19 Fund, we have been able to provide additional support around mental wellbeing, including access to remote counselling and an 8-week remote mindfulness course.

This has been a tough and challenging time for us all. And whilst it looks as though we are coming out the other side and can see a glimmer of light at the end of the tunnel, we don’t yet have confirmation of when the NAC will restart. We are still in a world with a degree of uncertainty, and things may never be quite the same again. However, the AKU Society and NAC team have learnt a lot from the past fifteen months about how we need to change and adapt the service to meet the changing needs of our patient group.

If you need any more information about the NAC and Covid-19. Please email