First blog post of 2021!
And we're back...
After a very long break. We hope that you all had a restful Christmas & New Year – although it feels like so long ago now. And that you are keeping safe and doing okay during this ongoing crazy time.
As part of our first blog post this year, we thought that we would give you a quick update of some our upcoming plans for Project Nightingale. In addition to providing an overview of some of the upcoming events put on by the brilliant NASS and self-management officer & qualified Osteopath Zoë Clark.
Firstly, rather excitingly, we were recently awarded a grant by the Sir Halley Stewart Trust. This has allowed us to hire a dedicated team to work on Project Nightingale. As such, we now have an advertisement out for a new research assistant to join the project: https://www.bath.ac.uk/jobs/Vacancy.aspx?ref=CC8052. Please do share the vacancy far and wide! We hope that this work will greatly help the wider community of people with axial SpA and help us to better understand the condition. The role is really an exciting opportunity to contribute to this novel, important project.
Our prior research assistant, Rosie, who some of you will be familiar with, will remain working on the project, but as part of her PhD! The PhD itself will involve exploring the potential of digital interventions to support the management of axial SpA. Including potentially trying to uncover what the ideal app for the self-management of axial SpA would look like. Of course, this will be impossible to determine without the help of yourselves and your healthcare professionals! We want your opinions and needs to truly drive this work. Therefore, we hope that there will be lots of opportunities to have your say in our research over the coming years. We will of course advertise these opportunities via the blog. As well as via Rosie’s twitter page @RosieBarnett95.
Going forward, we will be posting on the blog at least once a month, but likely every 2 weeks, until we hire our new Research Assistant, who we look forward to introducing to you soon hopefully.
In terms of engagement, we will also be doing a Facebook Live with NASS on 25th February at 1pm to talk about some of our latest Project Nightingale results. We look forward to seeing you then! We have included some links below to some of the recently recorded NASS Lives, so that you can catch-up if you missed them! In addition to events coming up in the next few weeks. Please see our events page for a full itinerary of upcoming Facebook Lives organised by NASS.
As always, please do feel free to get in touch by emailing our Project Nightingale researcher Rosie at email@example.com. If you are on twitter, you can also follow **https://twitter.com/RosieBarnett95 ** for regular research and Project Nightingale updates. Including notifications for new blog posts!
If you are interested in writing a blog post for us, we would also love to hear from you. Not only regarding your potential experiences with Project Nightingale, but also regarding your general experiences with axSpA. These can be posted anonymously, or with your name – whichever you prefer. Again, please email Rosie above, or get in touch using firstname.lastname@example.org. Here is a fantastic blog post published by John Wilkinson earlier this year, after receiving the challenge from his consultant: https://www.projectnightingale.org/blogs/john-wilkinson-no-holding-us-back/. Thank you so much for sharing your experiences John!
Thank you for reading and we hope that you have a safe, restful Sunday - perhaps enjoying the snow!
The Project Nightingale Team
Since we last posted, it has been a busy time for NASS. Before Christmas, Zoë Clark covered some simple self-care tips for axial SpA, and there was even a Live Amaretti Christmas bake-along with James Hillery from Bake Off! Earlier this week, Zoë spoke with Colin Beevor, Matron and Senior Clinical Nurse Specialist at Portsmouth Hospital. Colin shared his pain management toolkit, with techniques specifically for people with axial SpA, including ankylosing spondylitis (AS). The self-care tips and pain management toolkit recordings are embedded below if you wish to catch-up. And as always, are available on the NASS YouTube channel: https://www.youtube.com/user/NASSCentral/videos.
Last week, the inspirational singer-songwriter Talia Dean was on BBC5 live to talk about her AS journey. In case you missed it, you can still read her article on BBC online here: https://www.bbc.co.uk/news/stories-55567981. Talia also spoke with Dasha and Gillian to talk about living with axial SpA on the NASS YouTube channel: see linked below if you missed it.
Upcoming NASS events
Below are a few dates for NASS Facebook Lives coming up in the next couple of weeks. For the full itinerary, please check out our Events page.
27 Jan 1200: Therapeutic tai chi session with Rheumatology Specialist Physiotherapist Susi Gaikwad
3 Feb 1300: NASS Self Management Programme Officer, Zoë Clark, will be demonstrating how to make a 'flare toolkit' to help people manage their axial SpA flares
11 Feb 1800: Life coach, Julie Vallortigara, will be discussing how people with long-term conditions can use life coaching to improve their health and clarify their goals