Simon Stones
@simonrstones.bsky.social
🏳️🌈 he/him • Global Patient Engagement Leader & Medical Communications Specialist • EULAR PARE Committee Chair • ✈️ • 🎭 • 📸
The fabulous @lynnlaidlaw.bsky.social showcasing how patient-led research is possible! The system forces people to choose their silo, which is crazy - time to move towards an expertise and interest-led model I say!
June 27, 2025 at 2:50 PM
The fabulous @lynnlaidlaw.bsky.social showcasing how patient-led research is possible! The system forces people to choose their silo, which is crazy - time to move towards an expertise and interest-led model I say!
Delighted to be at the British Society for Rheumatology ‘Patient Voices in Rheumatology’ conference in London! #rheumatology
June 27, 2025 at 2:47 PM
Delighted to be at the British Society for Rheumatology ‘Patient Voices in Rheumatology’ conference in London! #rheumatology
Best picture of the entire Congress 🤣 #eular2025
June 14, 2025 at 12:11 PM
Best picture of the entire Congress 🤣 #eular2025
Peter and Michael representing PARE in the @eular.org 2025 Highlights Session #eular2025
June 14, 2025 at 11:29 AM
Peter and Michael representing PARE in the @eular.org 2025 Highlights Session #eular2025
Some nice recommendations and useful toolkit to help young people with RMDs to navigate the workplace! Find out more here: arthritispatient.ca/en/arthritis... #eular2025
June 14, 2025 at 10:51 AM
Some nice recommendations and useful toolkit to help young people with RMDs to navigate the workplace! Find out more here: arthritispatient.ca/en/arthritis... #eular2025
Natasha Trehan @capa-aca.bsky.social highlights the worries young people have about getting into employment with an RMD #eular2025
June 14, 2025 at 10:49 AM
Natasha Trehan @capa-aca.bsky.social highlights the worries young people have about getting into employment with an RMD #eular2025
Young people with RMDs find it difficult to access school accommodations - they want the education system to make it easier for them to get the support they need - something @raiiseuk.bsky.social takes seriously #eular2025
June 14, 2025 at 10:47 AM
Young people with RMDs find it difficult to access school accommodations - they want the education system to make it easier for them to get the support they need - something @raiiseuk.bsky.social takes seriously #eular2025
Having an RMD can disrupt financial planning, increase debt risk, and cause uncertainty about retirement #eular2025
June 14, 2025 at 10:35 AM
Having an RMD can disrupt financial planning, increase debt risk, and cause uncertainty about retirement #eular2025
The cost of living with an RMD is often hidden beneath the surface #eular2025
June 14, 2025 at 10:33 AM
The cost of living with an RMD is often hidden beneath the surface #eular2025
Important research from Arthritis Ireland - arthritis costs an average of €3500 per person per year, when thinking about all the additional needs due to an RMD diagnosis #eular2025
June 14, 2025 at 10:28 AM
Important research from Arthritis Ireland - arthritis costs an average of €3500 per person per year, when thinking about all the additional needs due to an RMD diagnosis #eular2025
We need to be thinking of early adopters, early/late majority, and laggards when it comes to digital health technology, AND those who are off bounds and require alternative methods of engagement #eular2025
June 14, 2025 at 8:10 AM
We need to be thinking of early adopters, early/late majority, and laggards when it comes to digital health technology, AND those who are off bounds and require alternative methods of engagement #eular2025
We have a great opportunity here to influence organisational health literacy, leveraging the expertise of patient organisations to inform and guide healthcare systems to make healthcare more accessible #eular2025
June 14, 2025 at 7:54 AM
We have a great opportunity here to influence organisational health literacy, leveraging the expertise of patient organisations to inform and guide healthcare systems to make healthcare more accessible #eular2025
The health literacy dilemma - the disconnect between risk factors and development of disease is evident #eular2025
June 14, 2025 at 7:50 AM
The health literacy dilemma - the disconnect between risk factors and development of disease is evident #eular2025
We really need to get better at proactive strategies to prevent disease / worsening symptoms within this ‘window of opportunity’ #eular2025
June 14, 2025 at 7:47 AM
We really need to get better at proactive strategies to prevent disease / worsening symptoms within this ‘window of opportunity’ #eular2025
Health literacy is a shared responsibility - small steps to improving accessibility can have an enormous impact on health and wellbeing outcomes #eular2025
June 14, 2025 at 7:42 AM
Health literacy is a shared responsibility - small steps to improving accessibility can have an enormous impact on health and wellbeing outcomes #eular2025
Health literacy needs to be improved on both an individual and organisational level - the latter including plain language materials that meet different learning styles and preferences #eular2025
June 14, 2025 at 7:36 AM
Health literacy needs to be improved on both an individual and organisational level - the latter including plain language materials that meet different learning styles and preferences #eular2025
Tailored and graded physically activity may help many people with an RMD but differential diagnosis (such as being guided by post-exertional malaise) may be important to define about the type and intensity of physical activity #eular2025
June 13, 2025 at 2:48 PM
Tailored and graded physically activity may help many people with an RMD but differential diagnosis (such as being guided by post-exertional malaise) may be important to define about the type and intensity of physical activity #eular2025
The message is clear - start asking patients about their fatigue and work together to try and improve it #eular2025
June 13, 2025 at 2:39 PM
The message is clear - start asking patients about their fatigue and work together to try and improve it #eular2025
Despite the @eular.org recommendations saying fatigue should be routinely assessed, the reality tells a different story… what’s the implementation gap? #eular2025
June 13, 2025 at 2:39 PM
Despite the @eular.org recommendations saying fatigue should be routinely assessed, the reality tells a different story… what’s the implementation gap? #eular2025
We need to get better at focusing on fatigue in RMDs and helping to address this particularly burdensome symptom #eular2025
June 13, 2025 at 2:35 PM
We need to get better at focusing on fatigue in RMDs and helping to address this particularly burdensome symptom #eular2025
Some personal coping strategies for managing fatigue from Souzi Makri, incoming @eular.org VP PARE #eular2025
June 13, 2025 at 2:12 PM
Some personal coping strategies for managing fatigue from Souzi Makri, incoming @eular.org VP PARE #eular2025
Fatigue has a considerable impact on the daily lives of people living with RMDs and their families #eular2025
June 13, 2025 at 2:10 PM
Fatigue has a considerable impact on the daily lives of people living with RMDs and their families #eular2025
We need to be thinking about sleep in RMDs, and what we can do to manage sleep disturbances while also improving sleep hygiene #eular2025
June 13, 2025 at 2:05 PM
We need to be thinking about sleep in RMDs, and what we can do to manage sleep disturbances while also improving sleep hygiene #eular2025
Sleep has so many roles in optimal brain function, from memory consolidation to creativity and longevity #eular2025
June 13, 2025 at 1:58 PM
Sleep has so many roles in optimal brain function, from memory consolidation to creativity and longevity #eular2025