Resources for additional support during lockdown 2.0
We hope you are having a good weekend and have managed to enjoy some of this lovely Autumnal weather! Indeed, we are living in some very unusual times. However, it has been glorious to have some sun at the beginning of this strange and challenging second lockdown (even if it is raining this afternoon!).
We understand that this is a particularly concerning time for people with axial spondyloarthritis (axSpA) and other chronic conditions whose care has inevitably been negatively impacted during the time of the COVID-19 outbreak. Despite the best efforts from those delivering clinical services, who always strive to provide the best care possible. We hope that the following post can provide some useful resources to help during this time. Organisations such as the National Axial Spondyloarthritis Society (NASS) and AStretch have done incredible work putting together useful information to help support individuals with axSpA throughout the pandemic. Yesterday we even saw the exciting Physio in Focus axSpA event; with a half-day full of talks, on topics such as managing sleep, coping with fatigue, and how to keep motivated to keep moving. Please see the links at the end of this blog post for further information.
We also thought we would provide a brief overview of some of the ongoing work of the All-Party Parliamentary Group (APPG) for axSpA, and lessons learned from the current pandemic. To hopefully provide some positive news, in a somewhat challenging time!
All-Party Parliamentary Group on Axial Spondyloarthritis
On Wednesday 4th November, we witnessed the 5th All-Party Parliamentary Group (APPG) meeting for axSpA: with a focus on hydrotherapy provision and improving access. For more information on the APPG, please visit the NASS website: https://nass.co.uk/get-involved/campaign-with-us/appg/. The full recording for the 5th meeting can be viewed here on YouTube also: https://www.youtube.com/watch?v=eOTiCowgMaQ. The meeting included expert presentations from 4 speakers within the axSpA community, providing key perspectives regarding hydrotherapy care. In addition to a discussion regarding the impact of COVID-19 on access to hydrotherapy, and a final Q&A session.
The APPG meet within parliament regularly and aim to raise awareness of axSpA and to ensure implementation of the best care possible. In the recent months, we have seen the APPG strive for steps to be taken to address the worrying gaps in care that exist for axSpA – gaps that have been only further widened by the current pandemic. There is a crucial need for an appropriate balance between COVID-19 and ‘ordinary’ health and care demand. More on this here: https://committees.parliament.uk/writtenevidence/8131/pdf/
Rheumatology care: lessons learned from the COVID-19 crisis
In June, as part of the APPG, a “Lessons from coronavirus” consultation was published via the parliament website (see link above). It was highlighted that across the country, there are numerous examples of innovative and rapid service redesign to facilitate maximum access and provision of care. For example, implementation of the virtual rehabilitation course at the RNHRD (https://www.projectnightingale.org/rehabilitation/). Or the use of virtual appointments and embedding of new methods of patient contact.
Although we acknowledge the limitations of virtual consultations, in some cases, this has even helped to increase appointment attendance. For example, for individuals in their 20s to 30s who work full time. Importantly, it has been highlighted that there is a crucial need to invest in appropriate IT infrastructure to facilitate innovation and patient care. In addition to a need to implement effective triage protocols to ensure rapid access to care for those most in need. For example, individuals experiencing a flare-up of their condition.
Not only in Rheumatology, but throughout the entire healthcare sector, we have seen a surge of publications regarding how the COVID-19 crisis has resulted in an unpredicted seismic shift in service delivery. And importantly, despite the challenges, opportunities have arisen in terms of rapid implementation of novel, more efficient, patient-centred, alternative ways to deliver patient care. As we progress through second lockdown, and throughout the eventual post-COVID-19 era, it will be critical for us to harness the lessons learned throughout the pandemic, in order to build a truly resilient healthcare sector, and safeguard provision of care in the case of any future outbreaks.
We look forward to seeing what the post-COVID era will bring in terms of healthcare innovations, service efficiency, and improving patient care.
Thank you for reading. Take care and stay safe.
All the best,
The Project Nightingale Team
NASS advice and guidance on COVID-19 for people living with axSpA https://nass.co.uk/news/covid19-coronavirus/
NASS Community Engagement Events https://nass.co.uk/get-involved/nass-voices-community-engagement-events/
NASS YouTube channel with a wealth of videos, uploaded regularly: https://www.youtube.com/user/NASSCentral/videos. Including a selection highlighted below:
1. Emily Clare: Motivation to exercise Facebook live https://www.youtube.com/watch?v=ds4xa2-CpM8
2. Zoe Clarke: Promoting emotional wellbeing https://www.youtube.com/watch?v=et0UPmYrlw8
3. Jamie Bolder and Geoff Lindsay: Gentle yoga for axSpA https://www.youtube.com/watch?v=kZoCl60uojM
4. Will Gregory: Making the most of your virtual consultation https://www.youtube.com/watch?v=N5bl9-XoSmI
5. Diane Aronson: An introduction to Acceptance and Commitment Therapy https://www.youtube.com/watch?v=YlIjc5MLuhM
AStretch Monthly Blog: https://www.astretch.co.uk/communications
Articles about telehealth, and how it can empower you to stay connected with your care outside of hospital: https://www.csp.org.uk/professional-clinical/digital-physiotherapy/telehealth ; https://creakyjoints.org/living-with-arthritis/coronavirus/daily-living/telehealth-helps-rheumatology-patients-keep-appointments/
Creakyjoints.org: Living with arthritis during coronavirus https://creakyjoints.org/category/living-with-arthritis/coronavirus/
Want Better Virtual Care with Your Rheumatologist?
For personalised advice on getting the most out of your rheumatology telehealth visits, check out https://www.erheum.org/.
And again, the following video by Will Gregory may also be useful: Making the most of your virtual consultation https://www.youtube.com/watch?v=N5bl9-XoSmI