PsA HQ Podcasts
By Mel
PsA HQ PodcastsApr 25, 2022
JLA PsP: a dual perspective from an HCP who is also a patient
Hello and welcome to another special podcast episode in this series about the ‘The James Lind Alliance Priority Setting Partnership for Psoriatic Arthritis’ - a project funded the British Psoriatic Arthritis Consortium (BritPACT) and was a collaboration with the British Society of Rheumatology (BSR), Psoriasis Association and the Psoriasis and Psoriatic Arthritis Alliance (PAPAA). In this episode I speak with Andy Kelly who is both a patient and someone working in a health care professional role. This dual perspective enabled Andy to see things from both sides - he tells us about his experience of being part of the steering committee and what he gained from doing so.
Here's those links I mentioned in the series:
Top 10 Priorities https://www.jla.nihr.ac.uk/priority-setting-partnerships/psoriatic-arthritis/psoriatic-arthritis-top-10-priorities.htm
James Lind Alliance - https://www.jla.nihr.ac.uk
BritPACT https://www.britpact.org/Impact#PSP
British Society for Rheumatology (BSR) https://www.rheumatology.org.uk
Psoriasis Association https://www.psoriasis-association.org.uk
Psoriasis and Psoriatic Arthritis Alliance (PAPAA) https://www.papaa.org
PsA HQ Linktree https://linktr.ee/PsA_HQ
Please subscribe, rate and bookmark this channel! There are lots of ways to get in touch - here's my link tree or you can send an email to: psazzgroup@gmail.com
Attribution: Music by lemonmusicstudio from Pixabay
JLA PsP: Patient perspective on being part of the project
Hello and welcome to another special podcast episode in this series about the ‘The James Lind Alliance Priority Setting Partnership for Psoriatic Arthritis’ - a project funded by the British Psoriatic Arthritis Consortium (BritPACT) and was a collaboration with the British Society of Rheumatology (BSR), Psoriasis Association and the Psoriasis and Psoriatic Arthritis Alliance (PAPAA). In this episode I speak with Russ Cowper, a patient partner on the steering committee for the PsP project. Russ talks to me about his own experiences with psoriatic arthritis and how and why he gets involved in research engagement.
Here's those links I mentioned in the series:
Top 10 Priorities https://www.jla.nihr.ac.uk/priority-setting-partnerships/psoriatic-arthritis/psoriatic-arthritis-top-10-priorities.htm
James Lind Alliance - https://www.jla.nihr.ac.uk
BritPACT https://www.britpact.org/Impact#PSP
British Society for Rheumatology (BSR) https://www.rheumatology.org.uk
Psoriasis Association https://www.psoriasis-association.org.uk
Psoriasis and Psoriatic Arthritis Alliance (PAPAA) https://www.papaa.org
PsA HQ Linktree https://linktr.ee/PsA_HQ
Please subscribe, rate and bookmark this channel! There are lots of ways to get in touch - here's my link tree or you can send an email to: psazzgroup@gmail.com
Attribution: Music by lemonmusicstudio from Pixabay
JLA PsP: a GPs perspective on being part of the project
Hello and welcome to this special podcast research dissemination series about the ‘The James Lind Alliance Priority Setting Partnership for Psoriatic Arthritis’ - a project funded by the British Psoriatic Arthritis Consortium (BritPACT) and was a collaboration with the British Society of Rheumatology (BSR), Psoriasis Association and the Psoriasis and Psoriatic Arthritis Alliance (PAPAA). In this episode I speak with GP, Dr Espeth Wise to find out how and why she decied to get involved in the project and hear about her experience as a member of the steering committee.
Here's those links I mentioned in the series:
Top 10 Priorities https://www.jla.nihr.ac.uk/priority-setting-partnerships/psoriatic-arthritis/psoriatic-arthritis-top-10-priorities.htm
James Lind Alliance - https://www.jla.nihr.ac.uk
BritPACT https://www.britpact.org/Impact#PSP
British Society for Rheumatology (BSR) https://www.rheumatology.org.uk
Psoriasis Association https://www.psoriasis-association.org.uk
Psoriasis and Psoriatic Arthritis Alliance (PAPAA) https://www.papaa.org
PsA HQ Linktree https://linktr.ee/PsA_HQ
Please subscribe, rate and bookmark this channel! There are lots of ways to get in touch - here's my link tree or you can send an email to: psazzgroup@gmail.com
Attribution: Music by lemonmusicstudio from Pixabay
James Lind Alliance Priority Setting Partnership for Psoriatic Arthritis: Episode 1 - some background on the project!
Welcome to this special season 3 podcast series on the PsA HQ Channel all about ‘The James Lind Alliance Priority Setting Partnership for Psoriatic Arthritis' which was funded by the British Psoriatic Arthritis Consortium (BritPACT) and was a collaboration with the British Society of Rheumatology (BSR), Psoriasis Association and the Psoriasis and Psoriatic Arthritis Alliance (PAPAA). This first episode covers the background of this project that directly relates to and will help to influence the future of Psoriatic Arthritis research.
Join me as I chat with my three guests: Suzannah Kinsella, a James Lind Alliance Adviser, Dr Laura Coates a Consultant Rheumatologist at University of Oxford and Louise Hailey, a Research Assistant in Psoriatic Arthritis, also at University of Oxford
Here's those links I mentioned in the series:
Top 10 Priorities https://www.jla.nihr.ac.uk/priority-setting-partnerships/psoriatic-arthritis/psoriatic-arthritis-top-10-priorities.htm
James Lind Alliance - https://www.jla.nihr.ac.uk
BritPACT https://www.britpact.org/Impact#PSP
British Society for Rheumatology (BSR) https://www.rheumatology.org.uk
Psoriasis Association https://www.psoriasis-association.org.uk
Psoriasis and Psoriatic Arthritis Alliance (PAPAA) https://www.papaa.org
PsA HQ Linktree https://linktr.ee/PsA_HQ
Please subscribe, rate and bookmark this channel! There are lots of ways to get in touch - here's my link tree or you can send an email to: psazzgroup@gmail.com
Attribution: Music by lemonmusicstudio from Pixabay
Season 3 news!
Hello! Here's a little news about season 3 which is coming very soon.. I do hope you will join me and listen in :-)
Please subscribe, rate and bookmark this channel! There are lots of ways to get in touch - here's my link tree or you can send an email to: psazzgroup@gmail.com
Attribution: Music bylemonmusicstudio from Pixabay "> lemonmusicstudio from Pixabay
Group Chat: how we feel about no pandemic restrictions
Hello there - I hope you enjoy listening in on this first 'group chat' on the PsA HQ podcast channel! It's a catch up and check in on how we are all feeling about having no pandemic restrictions in the near future -especially those who have been shielding. Have a listen and see if you feel the same? Thank you so much to Andrew, Debbie, Di and Pat for taking part.
Here's a link tree to all the places you can find PsA HQ : https://linktr.ee/PsA_HQ
Email your suggestions for chat topics to psazzgroup@gmail.com
All PsA HQ podcasts are simply a way of sharing viewpoints and opinions of the guests - they are our own and do not constitute proper professional or medical advice.
Music: Moments by Shane Ivers - https://www.silvermansound.com
This episode is kindly supported by Brit-PACT and you can find out more about their research projects, events, news and patient engagement activities here: www.britpact.org
The importance of being able to work - a chat with Jana J
Hello again! We are back on the theme of work and how it is a really important part in our life/self-management choices! In this episode of the PsA HQ podcast, I talk to Jana who is someone I know chooses and needs to work. The landscape for working from home has changed a lot since the pandemic and we chat about how this might actually be of benefit to people like us too.
Here's a link tree to all the places you can find PsA HQ : https://linktr.ee/PsA_HQ
Email your suggestions for chat topics to psazzgroup@gmail.com
All PsA HQ podcasts are simply a way of sharing viewpoints and opinions of the guests - they are our own and do not constitute proper professional or medical advice.
Music: Moments by Shane Ivers - https://www.silvermansound.com
This episode is kindly supported by Brit-PACT and you can find out more about their research projects, events, news and patient engagement activities here: www.britpact.org
Working, Juggling and Pacing with Tina
Hello again! I hope you will find listening to this podcast with Tina, about her experience working, juggling and pacing life with chronic conditions helpful and reassuring that you are not the only one in this position! As mentioned Tina is on instagram as the one2onediet with Tina Brown trimwithtina and through that you will also be able to see her link tree to all her other places on the internet which is linktr.ee/trimwithtina
Link to the new PsA HQ podcast wordpress site is here: psahqpodcasts.wordpress.com
You can get in touch via psazzgroup@gmail.com All PsA HQ podcasts are simply a way of sharing viewpoints and opinions of the guests - they are our own and do not constitute proper professional or medical advice.
Music: Moments by Shane Ivers - https://www.silvermansound.com
This episode is kindly supported by Brit-PACT and you can find out more about their research projects, events, news and patient engagement activities here: www.britpact.org
Support for when you are a carer - a chat with Carers Support Wiltshire
Hello and welcome back! In this episode I chat with Julian and Kath from Carer Support Wiltshire who are an independent charity that provides free and confidential support to unpaid carers of all ages across Wiltshire. Julian Pugsley is a Community Connector and Kath Brice is PR & Communications Officer.
Links to CSW can be found here: www.carersupportwiltshire.co.uk and there's a special web for young people here: www.YACbook.co.uk
Get in touch with your comments and ideas via psazzgroup@gmail.com or visit the new PsA HQ podcast wordpress site here: psahqpodcasts.wordpress.com (you can find me on Instagram and Facebook too!)
All PsA HQ podcasts are simply a way of sharing viewpoints and opinions of the guests - they are our own and do not constitute proper professional or medical advice.
Series 2 is kindly supported by Brit-PACT and you can find out more about their research projects, events, news and patient engagement activities here: www.britpact.org
Music: Moments by Shane Ivers - https://www.silvermansound.com
Sharing lockdown reflections, un-shielding thoughts and patient research partner motivation with Andrew
Great to have you join me on the podcast again! This episode I chat with Andrew - someone introduced to me through my patient expert partnering links. We reflect on lockdown, coping tactics and what un-shielding might look like. Get in touch and let me know how you feel?
Link to the new PsA HQ podcast wordpress site is here: psahqpodcasts.wordpress.com
You can get in touch via psazzgroup@gmail.com All PsA HQ podcasts are simply a way of sharing viewpoints and opinions of the guests - they are our own and do not constitute proper professional or medical advice.
Music: Moments by Shane Ivers - https://www.silvermansound.com
This episode is kindly supported by Brit-PACT and you can find out more about their research projects, events, news and patient engagement activities here: www.britpact.org
Lockdown, telemedicine and un-shielding with Pat
Hello and Welcome back to Season II at PsA HQ which I'm starting with a catch up with Pat, a member of the support group. During this episode we reflect on lockdown shielding letters and the importance of being able to source and share trustworthy information. We also chat about telemedicine, un-locking and for Pat, her feelings around 'un-shielding'. Please subscribe, rate and bookmark this channel - and the link to the new PsA HQ podcast wordpress site is here: psahqpodcasts.wordpress.com
This episode is kindly supported by Brit-PACT and you can find out more about their research projects, events, news and patient engagement activities here: www.britpact.org
You can get in touch via psazzgroup@gmail.com All PsA HQ podcasts are simply a way of sharing viewpoints and opinions of the guests - they are our own and do not constitute proper professional or medical advice.
Music: Moments by Shane Ivers - https://www.silvermansound.com
Season 2, a hello & a bit of a catch up!
Get in touch via psazzgroup@gmail.com
Music: Moments by Shane Ivers - www.silvermansound.com
A chat with Dianne and the value she gets from being part of four peer support groups!
In this episode I have a chat with Dianne who is someone who belongs to not one... not two... not three... but four different peer support groups! Amazing! We talk about how it all started for her, and why, and what each group means to Dianne. There are also some funny 'disruptive' moments which I have deliberately left in because things like that happen to us all to don't they so it's very true to our lockdown life..
And here's a link to WSUN - The Wiltshire Service Users Network as mentioned in the show.
Please share with people you think might like to listen and on your social media.
You can get in touch via psazzgroup@gmail.com All PsA HQ podcasts are simply a way of sharing viewpoints and opinions of the guests - they are our own and do not constitute proper professional or medical advice.
A medical expert's opinion on peer support value - with Dr Laura Coates
How Pat found our peer support group.... and why she stayed part of it!
Hello again - it's lovely to have you join me. Here's another peer support themed chat for you to listen too - this time with Pat who is another member of our 'Support Rheum' group. It's an interesting story as Pat didn't think she was really looking for peer support or wanting to be part of a group but after she found it, she liked it and she stayed part of it - result! Just goes to show, sometimes trying new things can turn out to be more helpful than you might have thought ;-)
I hope you enjoy listening as much as I enjoyed chatting with Pat. Why not let me know your thoughts & experiences so I can share them here in the pod-osphere.
You can get in touch via psazzgroup@gmail.com All PsA HQ podcasts are simply a way of sharing viewpoints and opinions of the guests - they are our own and do not constitute proper professional or medical advice.
Peer Support chat with Amanda
Hello again - I am so glad you've joined me! In this episode I'm having another chat with one of my peer support friends - Amanda about why she looked for a group and what she feels she gets from being part of one. I think her story about what she has gained and how it has helped her is another demonstration of why it's so important!
I hope you enjoy listening as much as I enjoyed chatting with Amanda. Once again, at the end of the podcast I'll share a way you can get involved with me here in the pod-osphere.
Get in touch via psazzgroup@gmail.com All PsA HQ podcasts are simply a way of sharing viewpoints and opinions of the guests - they are our own and do not constitute proper professional or medical advice.
The value of peer support chat with Debbie