LOCOMOTION February 2023 Newsletter

LOCOMOTION study recruitment reached 1957 in February 2023!

Long COVID Publications:

• The latest publication in our series of BMJ practice pointers has been published! - Orthostatic tachycardia after covid-19.
• We have published a lay summary of our previous BMJ Practice Pointer ‘Long covid - an update for primary care’
• The UK Qualitative Long COVID Research Network have published a report on 'Understanding and supporting the long-term effects of COVID-19'. Many LOCOMOTION team members are authors of this report.

Study Updates:

• Researchfish submission and NIHR progress report are due in March. The National Institute for Health and Care Research (NIHR) are the funder of the LOCOMOTION study. We provide a detailed update every 6 months to the NIHR (during the study), and yearly (during and after the study) on Researchfish. Researchfish is used by funders to collect impact-related data to advocate research and inform funding strategies. The updates we provide include progress against project milestones, engagement activities conducted, influence created on policy and practice, and scientific publications generated.
• External Advisory Group meeting upcoming in March. This group meets every 6-months. It consists of study team members, independent experts, and external public partners. We meet to provide an update on progress and discuss upcoming priorities, for advice and feedback.
• Locomotion Scientific Conference. A hybrid conference is being planned to take place in a few months time for Locomotion team members. Work package teams will be invited to present their current findings and have sessions for some group work, paper writing plans, etc. As this is our first in-person meeting, it's an opportunity for co-researchers to meet those they have been working with and develop future collaboration plans. It will be a hybrid meeting to accommodate those who cannot travel due to health and other reasons.

Long Covid Webinar:

• Patient perspectives on Covid-19: hospitalisation, Long Covid, & inequality. - Wed 15th March 13:00 – 14:30. - Register for the online launch and discussion of learning from four qualitative studies into experiences of the Covid-19 pandemic.

The LOCOMOTION Team:

• Goodbye & Thank You: Emily Bullock was working as the Clinical Research Fellow at our Salford NHS site. She has now moved on to a new role, the study team are sad to see her leave but thank her for her great contribution to the study.
• Congratulations: Dr Manoj Sivan (Co-CI of the study) has been appointed Editor-in-Chief of SAGE journal ‘Advances in Rehabilitation Science and Practice’.

Team Member Profile – Ruairidh Milne (Patient Advisory Group Co-Lead):

• Background – I had Covid in March 2020, early in the first lockdown, and haven’t recovered since - so far, at least. Because of this, I had to retire from my job working for the NIHR, based at the University of Southampton. Before that, I worked as a public health doctor in a variety of roles, including many years advising NICE.
• My Role – I want people with Long Covid to get better care and better treatment. As co-chair of the Patient Advisory Group (PAG), I have the privilege of working with brilliant people right across Locomotion: above all, my colleagues on the PAG and the Patient Advisory Network, who inspire me every day; also the amazing Manoj, Brendan, Tom and Madeline, and the External Advisory Group; and I work very closely with the dynamic duo of Amy Rebane (Patient and Public Involvement/Engagement Manager) and Clare Rayner (my PAG co-chair). I’m also the PAG member on the publications committee and on the teams for work packages 2.2, 3.1, and 3.2.
• Fun Fact – Until a year ago, I’d spent most of the previous six years living in Shetland,
  nearer to the Arctic circle than to London. An amazing part of the country -
  if you haven’t been, do go! It isn’t usually quite so cold as in the photo.

Work Package (WP) in Focus - WP 1.1 (QIC) and 1.2 (Co-Design):

• The Team – Co-Leads Trish Greenhalgh and Julie Darbyshire, plus welcome helping hands drawn from the site teams.
• Background – WP1.1 and 1.2 focus on the experiences of Long Covid clinics. Nominally 1.1 is about the healthcare environment and those who work in it, and 1.2 is about patients but in reality, the two work packages interact a lot. We use information from patient interviews along with data from other work packages to evaluate how Long Covid clinics work and how changes are implemented.
• Progress – In the first few months of LOCOMOTION we identified some ‘tricky topics’ that were troubling both patients and clinic staff. We held group meetings to discuss how each site was approaching dysautonomia, breathlessness and breathing disorders, cognitive dysfunction, and vocational rehabilitation. The output from these discussions and follow up work has resulted in a series of articles for the BMJ Practice Pointer section that summarise current best practice.
• Next Steps – Now we have a robust evidence base for at least some of the ‘tricky topics’, we plan to evaluate how each clinic uses that information to deliver best practice care to patients. We will do this through interviews and fieldwork with sites, and from new interviews with patients. The first phase of patients recruited to tell us about their experiences of clinic were all ill with covid-19 during 2020, and told a similar story of their illness and access to the Long Covid clinics. We hope to hear different experiences from the next phase of recruitment that will demonstrate how clinics have changed over time.