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LOCOMOTION May 2023 Newsletter

Date

LOCOMOTION study recruitment reached 2309 in May 2023!

Long COVID Publications:

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Upcoming Webinar - Long Covid: What needs to happen next?

  • Taking place on 5th and 6th July 2023, 10:00- 13:00.
  • This is an online webinar organised by Long Covid Support with North Thames NIHR Clinical Research Network and Long Covid Scotland.
  • It will discuss where we (Long Covid community) are in terms of research and clinical care for Long Covid in the UK, where we need to get to, and how we will get there.
  • Members of the LOCOMOTION team will be involved in the event as speakers and panel members.
  • More information here.

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Recorded Long Covid Webinar - 'Ask the Expert'

  • Professor Nawar Bakerly (Principal Investigator at our Salford NHS site) took part in ‘Ask the Expert’.
  • This was an online event giving the public the opportunity to ask a leading specialist questions about the latest LC research. It was hosted by the National Institute for Health and Care Research (NIHR).
  • A recording of the event is available here.

Work Package (WP) Updates:

  • WP1.1 (Quality Improvement Collaborative) - Our Patient Advisory Group (PAG) previously conducted an audit of what is happening in our Long COVID clinics. A follow up review session from this audit took place in May and the following meetings/working groups were created to further explore topics that were discussed:
    • BMJ Practice Pointer webinar
    • Cognitive testing and treatment options
    • Patient information
    • Emergency procedures for clinics
    • ‘Long Long COVID’ and new/emerging health complaints in those with Long COVID
  • WP1.1 (Quality Improvement Collaborative) - Following on from the publication of our BMJ practice pointer on Orthostatic tachycardia after covid-19, our NHS sites have been testing the prevalence of tachycardia on standing in patients attending the Long COVID clinics. They have been using the NASA Lean Test to do this, and they have so far tested more than 35 patients.
  • WP1.2 (Experience-Based Co-Design) - Phase two of our interviews with Long Covid patients to understand their experiences within clinics are underway. So far, seven patients have been interviewed in phase two, once all the interviews are complete they will analysed and compared to those from phase one to understand any changes in experiences.
  • WP1.3 (Health Inequalities) - A first draft of our best practice guidance on ‘developing inclusive practices in Long COVID clinic design’ has been created. The aim of this guidance is to address inequalities in Long COVID clinic access. It will now be reviewed and further refined by members of the study team in collaboration with the clinics, focussing on making the guidance useful for clinics.
  • WP1.4 (Vocational Rehabilitation) - The fifth publication in our series of BMJ Practice Pointers focusses on vocational rehabilitation for Long Covid. It has now been submitted to the BMJ, we hope it will be accepted in the coming months and published for everyone to access.
  • WP1.4 (Vocational Rehabilitation) - A vocational rehabilitation intervention planning workshop is being scheduled with the PAG, to ensure their the patient perspective is included in the development of the intervention.
  • WP2.1 (Home Monitoring of Long COVID Symptoms) - Recruitment complete! WP2.1 recruited 294 from our NHS sites and 110 from other avenues such as this website and social media. Once the follow-up of all these patients is complete the data will be analysed and findings generated.
  • WP2.2 (Patient Reported Outcome Measures) - We now have 1,834 participants who have registered to C19-YRS app part of our study.
  • WP3.2 (Pathway Cost-effectiveness) - A publication describing the economic consequences of Long Covid in terms of productivity impacts and informal care burden, is in advanced stage of writing.

Inequalities Work

LOCOMOTION Team:

  • Welcome: Ashliegh Lovett has joined as the new Clinical Research Fellow at our clinical site in Salford.
  • Thank You and Goodbye: Thank you to Rachel Lardner for her time as a Clinical Research Fellow at our Oxford clinical site.

Team Member Profile – Ian Tucker-Bell (Patient Advisory Group Member):

  • Background – I was previously a drama teacher, having worked in education for a good number of years. I taught 11 to 18 year olds in a couple of schools in the Kent area, and really enjoyed coaching and developing the students, celebrating their successes and progress. I’ve also been writing, directing, and performing in theatre, some of which has made it to the Edinburgh Fringe.
  • My Role – I’m a PAG member, attached to work packages 1.1, 1.2, 1.4, and 2.1.
    Since contracting Covid, in December 2020, and developing Long Covid, it’s been important to me to use my experiences of the condition, and how the condition impacts the various aspects of my life, to help others. The saying goes “when life gives you lemons, make lemonade” and that has been how I’ve approached this.
  • Fun Fact – As well as taking my own plays to the Edinburgh Fringe (we’ll be there again this August). I also write and record my own songs, and have various things on Spotify, iTunes, and YouTube!

Team Member Profile – Román Rocha Lawrence (Director of Research & Development at ELAROS 24/7 Ltd and Research Fellow at University of Leeds):

  • Background – I have been managing/directing various R&D projects at ELAROS for 4 years now after graduating from The University of Sheffield with an MEng in Bioengineering in 2019.
    When the pandemic struck, I was managing an Innovate UK project on our Digital Bladder Diary (DBD); a remote monitoring solution for diagnosis of lower urinary tract symptoms (LUTS), where, following a meeting with Dr Manoj Sivan in late 2020, we identified a new application for the DBD platform for the remote assessment and management of patients with Long Covid using the C19-YRS following. Seven months of rigorous development later, the digital platform was live in the NHS, serving patients from 16 NHS Trusts, and we were invited to join Locomotion which kicked off soon after.
    In October 2022 I started a part-time role as Research Fellow at the University of Leeds with Manoj’s team to tie in our clinical and industrial work with the academic world and carry out research and produce outputs for our work.
  • My Role – I’ve been managing the implementation of the C19-YRS platform across each of the sites for WP2.2 and later, WP3.2, as well as supporting some of the sites with the clinical rollout of the system. I have really enjoyed meeting the various interdisciplinary clinical and research teams across the UK, learning more about how the NHS ‘ticks’ and sharing learnings across our wider Long Covid network which has fed into national policy development.
  • Fun Fact – I have organised music events in Sheffield and Leeds for 6 years in my spare time for a brand I manage and book artists (live musicians and DJs) that play anything from jazz, Latin, afrobeat, and electronic dance music from around the world.