How the Pandemic affected us:
As a team we had to make a lot of changes to the services we provide. We had to put a number of studies on hold for varying reasons. We were approached to work on the Urgent Public Health (UPH) studies covering COVID-19. This included the GenOMICC study which was seeking to recruit from the same population cohort and collecting similar data sets as the Rare Disease study supported by the BioResource. Added to the natural health vulnerabilities of patients with Rare Diseases, the majority of the target cohorts were advised to shield during the pandemic. Obviously we could not justify onsite visits which were not directly related to treating their condition. So, we had to make a number of adaptations to our methods of recruitment and treatment windows in those studies which were open, to create a safe environment for both staff and patients.
The hardest part of the pandemic was rapidly adapting to changes outside of our control. We were guided by not only the Birmingham Women’s and Children’s NHS Foundation and NIHR, but also Public Health England and NHS England. In line with NIHR guidance we had to pause all research which was not the only treatment option and unsafe to discontinue treatment. Having said that, we were able to keep 19 research studies open with a more flexible and collaborative approach. Additionally the Trust had to ‘pull back’ on the number of face-to-face appointments and we had to minimise this effect on our performance, delivery and support to our studies. However, we knew this was essential, in terms of keeping staff and patients as safe as possible from exposure to COVID-19.
It was difficult for the children to adapt especially as they were not able to read facial expressions as we were now wearing masks. Parents found it challenging especially as there is a one parent and no sibling guideline. This impacted their ability to support and maintain childcare commitments. We tried to provide extra support as much as was possible to reduce stress and anxiety. We had to become more proactive and forward thinking about appointments especially when study specific kits / treatment / medication were required. This involved allowing extra lead time for deliveries and dispensing from our support departments.
We coped by supporting each other, by communicating and sharing our worries and concerns. We learnt how to become more resilient individually and as a team. We became more mindful of our colleagues and proactively reached out to them. We felt fortunate that we could come to work and interact with each other as we knew some people were feeling isolated and shielding.
Virtual platforms became a necessary, robust and useful tool for clinic appointments, training and teaching for staff, patients and liaising with people across other Trusts and stakeholders both locally and internationally. For example virtual teaching was undertaken with children and parents in the Bardet-Biedl clinics (which looks after Rare Disease patients with a genetic condition that impacts multiple body systems such as truncal obesity). Through this platform we have continued to deliver our services effectively and in a timely manner.
We have continued with our training so we can still offer the best support and service and grow as a team. Our colleagues have been pulling together, going above and beyond, continually adapting to change this has been amazing and shows what a strong group of caring people we work alongside.
Our nursing team was involved in the COVID-19 vaccination scheme whereby they would travel across sites to deliver the vaccination programme to colleagues. As there was interruption to face to face clinics team members were placed on a joint rota with our Research and Development (R&D) Department covering COVID-19 studies.
Looking to the future:
As the pandemic is beginning to ease, a large amount of thought and analytical work has been done regarding recovery and restoration of our services.
We are re-starting studies which were put on hold and opening new studies as more and more clinics are opening up to face-to-face interaction. As the pandemic restrictions ease further we will hopefully be able to return and offer an interactive and safe environment to drive forward our work on the BioResource studies and help offer children and their families with the best treatment options available.
We are hoping to continue with our flexible hybrid working structure. BioResource team members will be encouraged to return onsite on a rota basis and continue home working where needed. This will allow members of staff to work as part of a team and expand the working portfolio with their unique skills and knowledge.
We would like thank all our colleagues for their professionalism, dedication and going the extra mile for the Trust. The support we have received from our stakeholders has been remarkable throughout this difficult period.
Our children and families have been fantastic and coped with all the various changes and difficulties we have faced. Some children have transitioned to adult services and completed their study treatments in this period and we wish them well and thank them for their enthusiasm and commitment they brought with them to our studies. Lastly we would like to welcome new children and families to our BioResource studies this may be through virtual visits or interactive face to face visits.
With more and more BioResource centres resuming research activities we hope to create and promote stronger networking communications especially as virtual meetings have increased prominence and allow for higher number of attendees. The sharing of knowledge will also allow us drive the BioResource studies forward.