Additional resources to help you manage your axial SpA from home
Good morning everyone!
We hope that you are all having a good week – quite exciting with the freezing fog!!
Upon receiving the unfortunate news that the majority of us are remaining in Tier 2 for the next few weeks, we thought it would be useful to signpost some additional resources, following on from our blog post a couple of weeks back: https://www.projectnightingale.org/blogs/resources-for-additional-support-during-lockdown-2.0/.
The past 2 weeks have been rather busy – with the online Rheumatology journal club and the excellent “Physio in Focus” conference, ran by the National Ankylosing Spondyloarthritis Society (NASS) in collaboration with AStretch. We have posted some links to some great websites and videos below – we hope you find these useful.
Enjoy the rest of your weekend!
All the best,
The Project Nightingale Team
Rheumatology journal club
This week the journal Rheumatology ran a brilliant discussion on twitter, discussing remote care in Rheumatology following the pandemic. Although it seems as though remote care is likely to continue in some form post-covid and is preferable for some patients, there are a lot of challenges (technical issues anyone?!). Especially if having to have a consultation with a new doctor, or if your first ever consultation for potential diagnosis is having to be done virtually. Thankfully, clinics are now able to offer and prioritise in-person appointments for those in flare or those newly diagnosed. In future it will be vital to work out what works best for each person at each specific time – virtual or in-person. As with all aspects of healthcare, patient preference and opinions should always be at the heart of any decision-making.
Catch-up with the journal club discussion on twitter at: https://twitter.com/RheumJnl. Or join Mr Motivator (yes, THE Mr Motivator) for his Journal Club workout below to get the British Society for Rheumatology on their feet!
What are your thoughts on virtual consultations? Let us know by emailing rosie.barnett1@nhs.net.
How to make the most of your virtual consultation
We have posted these links previously. However, this really is so important, so we are posting again here!
For personalised advice on getting the most out of your rheumatology telehealth visits, check out https://www.erheum.org/. From the non-profit arthritis community CreakyJoints, eRheum™ provides a FREE personalized guide for better telehealth visits.
And again, the following video by the excellent Will Gregory may also be useful: Making the most of your virtual consultation.
High-intensity exercise for axial SpA
You may remember us discussing the potential benefits of high-intensity exercise in Part Two of our “A year in AxSpA Research” series: https://www.projectnightingale.org/blogs/2020-a-year-in-axspa-research-part-two/. Excitingly, on the 19th November, NASS published their Facebook live session with the brilliant Self Management Programme Officer, Zoë Clark, and physiotherapist Josh Poole, where Josh talks about the benefits of high-intensity interval training (HIIT) for people with axial SpA and leads a HIIT taster session. Check it out below:
Physio in focus conference
If you missed the excellent “Physio in Focus” conference last Saturday, do not worry – the full conference has been published online by NASS (see video below)! Including the following talks:
Keeping motivated to keep moving – Will Gregory, 3:20
The jaw and axial SpA – Philip Bateman, 37:40
Coping with Fatigue – Dr Jane Martindale, 55:11
Checking your movements at home – quick checks and maybe even a BASMI? – Claire Jeffries, 1:15:49
Sleep well with axial SpA – Emily Clarke, 1:31:09
Self care for axial SpA
The fabulous Zoë Clark, Self Management Programme Officer at NASS, is sharing her top tips for simple #selfcare on 2nd December at 1pm. Join live https://zcu.io/OMiC or catch up afterwards https://zcu.io/vOQW What's your number one tip?
Exercise videos from our expert physio team at the RNHRD
Our brilliant, specialist team of physios at the RNHRD, who I am sure many of you will be familiar with, have put together a series of videos and simple exercises that you can watch and complete from home. Check them out below and let us know what you think!
https://www.ruh.nhs.uk/RNHRD/patients/services/rheumatology/AS_service/exercises.asp?menu_id=2
Additional resources
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/
Versus Arthritis: Coronavirus and managing pain at home – your questions answered https://www.versusarthritis.org/news/2020/april/coronavirus-and-managing-pain-at-home-your-questions-answered/