Reflections on Leading a Network at the QNI and Long Covid

New into the role, I was advised that my main area of work would be the Long Covid network – a well-established network – and I would be supported by my line manager Sharon Aldridge-Bent. Project management at a national level was a new challenge for me, but one I was ready for and excited about. Reflecting, I wondered if I would be up for the challenge – but hard work and knee-deep in reading, I was ready to learn and keep up with the fast-paced growth in knowledge around Long Covid.

At the beginning of my journey, Long Covid was being referred to as a ‘new and emerging’ condition – sometimes this phrase is still used today (having heard it in a conference just last week!). However, many people have been living with Long Covid for over two years now. It is their lived experience we need to hear and learn from.

The Long Covid network had a terms of reference (ToR) and a brief. I reviewed and got to grips with these documents – I know the direction of travel and can review and reflect on this as I go, keeping in mind what we want to achieve and how we are going to do this. I revisited the terms of reference, consulting with the network members throughout, spending time to listen in – to the Nurses, patients, and policymakers through various channels. I managed any queries, and expectations that came in about the network, its work, aims and objectives and the many agendas that come to the table from time to time. I remained focused on always keeping our goal at the core – excellence in patient care for those being served in the community. For me, this was simple – I am a Nurse and most of my career to date has been at an operational level, Nurse. Patient care is and always has been my reason for Nursing.

NHS England commissioned the network, and our aim was to have a strategic overview of Long Covid. Meeting with NHSE and negotiating the specific deliverables was great. I knew the deliverables that our network needed to achieve and the deadlines. My previous experience would come in handy, working flexibly and adapting to change at a minute’s notice.

As the network developed and the Long Covid agenda moved on I kept the outcomes, terms of reference and network voice close to mind. I needed to be able to communicate the strategic aims and key deliverables of the network to a wide audience of Nurses who were busy but wanted to learn about Long Covid. With this in mind, I started to translate government policy and documents into key messages. Nurses want to know what’s going on, how to support their staff and patients – upholding excellent care. So, let’s go, I thought – I wanted to ensure that the Long Covid work and policy/influence we could have as a group would capture all disciplines of community nursing and all elements of care.

Community nurses are so busy, workload pressures are increasing – new variants of Covid were thrust upon other winter pressures, and summer brought new challenges to services too – there appeared to be no reprieve in sight. But still, the Nurses who attended the network meetings brought commitment, enthusiasm, and excellence in attitude. How could I support and provide information that people want and need, in a mindful way, considering the workload pressures?

I focused in on our meetings, listening to what people wanted – Mentimeter (a confidential online platform) gave insightful feedback and helped to shape what Nurses wanted on the agenda. I worked hard on our webpages to ensure that the information was easy to access and accessible to a wide audience. Long Covid really demonstrates the workings of system leadership. The multi-system approach and leadership within this fascinated me. Again, I heard and saw nurses leading on this and providing excellence in care for patients with Long Covid – I am determined to get their voice heard! Let’s create positive change, feeling motivated: feeding back the views of the network to policymakers.

I met with many expert speakers, and we spoke about what sessions would be good to have within the meetings. I started to craft the work and thought that it would be good to ‘theme’ meeting agendas following feedback. We looked at disciplines, children, and young people, homeless health for example and this allowed nurses to attend the meetings they felt were most relevant to their practice. This gave people more time, as they could choose which meetings to attend.

However, the interrelationship between disciplines, and the cascading effects of their interaction was lost a little by specialising too closely on specific areas. Our brief from NHSE was to have a broad and strategic view of Long Covid – with specialist and expert knowledge being shared within that holistic context. A timely reminder from the learning I was completing around Long Covid was that by this time, over 300 symptoms of Long Covid were now listed; this gave me inspiration to focus further meetings on symptoms and drill down into the detail of how community nurses can identify and support people living with these symptoms.

The most important and emotive part of the Long Covid work I have completed is meeting, interviewing and being trusted with people’s personal journeys. I have been on calls listening to nurses who have contracted Covid and become unwell who are still on that journey now. I’ve cried with them and felt their frustration. This to me is so important – that their voice is heard, at all levels, and the messages and learning that come from this is something that is embedded into all aspects of nursing care. I had a personal conflict at times with recording people’s personal journeys, as I heard the pain it caused and to relive it was often painful. I approached this with compassion and empathy and was always guided by the person sharing their journey. I felt very protective of anyone brave enough to share their personal journey and worked closely with our communications team to ensure that their journey was captured in the best way possible.

I had great support in developing our well-resourced webpages from the QNI team. I met regularly with the Digital Engagement Officer, Hanna Mountford, and we planned out the ‘look’ and way in which the webpage would be utilized. I shared multiple documents and research pieces; we wanted an up-to-date library of resources for people to access, so I regularly review and keep on top of this. Hanna and I ensured that the information was as accessible as possible: I was keen to create video blogs, as not everyone wants to read. Making our information accessible for all is something that my paediatric background has instilled in me, so I try hard to encompass that in my work.

Along with the webpages, I updated and authored the Living with Long Covid resource – which was a great but also huge piece of work to complete! I kept working on it as so many updates and new information were being released it was hard to know when to stop! I am pleased with the document that has now been published – a resource for community Nurses to use to support them in their roles. I am grateful to have had great support from Nurses reviewing and helping to build the document; it is so important to have different perspectives.

My hopes for the network moving forward? I would like to see it grow and develop further and for community Nurses to access the materials, information and signposts as a point of excellence in practice and care. I hope Nurses network with each other, gain information, support each other, and champion the role and the learning. I think that the pandemic has had some positives, and the unity that Nurses developed was humbling to see and be part of – I would love to see Nurses’ support and care for each other sustained and grown as we move forward together.

Eve Thrupp, Queen’s Nurse

Follow Eve on Twitter: @EveThrupp

You might also be interested in…

• Find out more about Long Covid Nurses Network.
• Explore Long Covid information resources
• Read stories about living with Long Covid
• Attend Long Covid events for nurses.