St George's ILD Support Group

Frontiers | The role of digital health in respiratory diseases management: a narrative review of recent literature

This review offers a detailed overview of how digital health can be utilized in the management of #ILD & #COPD A must read for all clinicians implementing supported self-management programmes @ucl.ac.uk @stg-ildsupportgr.bsky.social @ats-clinicalprobs.bsky.social doi.org/10.3389/fmed.2025.1361667

We look forward to connect with the Interstitial Lung Disease (ILD) and Respiratory communities and continue to build our knowledge, support each other and share our lived experience.

We've brought over most of our posts from twitter, thanks to @en.blueark.app for their help. Great service!

Denise & Jo’s cycle ride for Action For Pulmonary Fibrosis Help Denise Bray raise money to support Action For Pulmon...

https://www.justgiving.com/page/denise-bray-1715526596513?utm_source=twitter&utm_medium=socpledgemobile&utm_content=denise-bray-1715526596513&utm_campaign=post-pledge-mobile&utm_term=6NdReJz9V

We have #justsponsored Denise Bray, who's fundraising for Action For Pulmonary Fibrosis on @JustGiving. Donate now...

register
https://www.rbht.nhs.uk/about-us/become-a-member/member-events

Post-transplant life and the 'big C'
Date: Monday 12 February
Time: 1pm to 2pm.

Join us for the next in the series of webinars for heart and lung transplant patients, their families and carers.

Select the link below to...

https://www.actionpf.org/news/thousands-of-patients-with-terminal-lung-scarring-given-access-to-drugs-that-could-prolong-their-lives

At last a milestone reached in accessing medication for those living with #IPF . NICE has abandoned the 80%-50% FVC restriction to access Nintedanib treatment....

It’s so important for healthcare professionals to provide a space for patients to be heard at their conferences - it’s an effective way to spread learnings from patients' experiences. 
Well done and thanks to @ild_inn
#ILDIN22

John emphasises important role of allied health professionals in different areas of a patient's life and illness.
#ILDIN22

"Support from peers is so important to help stay physically and mentally healthy."
#ILDIN22

The tailored and thoughtful approach of a particular specialist nurse helped John's decision making when deciding whether to go on oxygen. #ILDIN22

John from our group is speaking to specialist health professionals at the #ILDIN22 conference today, telling his story from IPF to life-saving lung transplant.

What can ILD health staff learn from his experience?

Giving hope to people living with fibrosing lung disease #IPF - launch of the Margaret Turner Warwick Centre https://nhliblog.wordpress.com/2022/02/10/launch-of-the-margaret-turner-warwick-centre/

Covid: Self-isolation law could be scrapped in England th... The rules are due to end in March - but that could be bro...

It is clear from the PM's announcement that those living with chronic and long-term health conditions and respiratory conditions in particular, but not exclusively, are no longer a consideration for this PM and government.
https://www.bbc.co.uk/news/uk-60319947

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http://www.blf.org.uk/taskforce/become-a-taskforce-for-lung-health-patient-or-carer-representative

Do you know people with a passion for lung health who could join the team @lungtaskforce as patient and carer voice representatives? It’s a great way to share your experiences and help influence vital work. Apply before 31 January 2022....

Very sad to hear of the death of Rosemary Bechler, having struggled with #IPF for 5 years. We have lost an amazing and inspirational leader and campaigner for democracy and equality. #PF #curepf
https://www.opendemocracy.net/en/rosemary-bechler-obituary/?s=08

link:
https://covid.joinzoe.com/webinar/vaccines-and-immunosuppressed

How are COVID vaccines working in the immunocompromised? October 28, 2021, 3pm BST.

Join this webinar to hear from an expert panel discussing how vaccines are working in those with a compromised immune system.

Webinar registration...

This is #IPFWeek and #OrganDonationWeek. A lung transplant is a life-saver for those with IPF, if they are lucky enough to qualify for a transplant. 
Please have a conversation with your loved ones about #OrganDonation that could one day save lives. #LeaveThemCertain

So why do we expect a different approach for our precious NHS. Despite a lack of investment, over success governments, it has punched above its weight - enough is enough! If you want a top class service then be serious and invest in it and its talented, dedicated people... 3/3

Talent, effort, dedication, excellence coaching, ... for sure, all of this is true, but the primary reason is.... the lottery fund, investment and taking the endeavour seriously to achieve a step change in outcomes... 2/3

I've been very inspired by the Tokyo Olympics and I'm particularly delighted on how well *Team GB* have done - 4th over! And it got me thinking, why have we done so well?... 1/3

194,547 people signed and won this petition Keep legal requirement to wear face coverings in shops an...

UK Government: Keep legal requirement to wear a face covering in shops, supermarkets, etc after July 19th - Please think of those who are clinically extremely vulnerable and have been shielding for over 16 months - Please sign this Petition! http://chng.it/DjDZXNbc via @UKChange

We are fortunate to be able to include a pulmonary rehab session at the start of our support group meetings over Zoom. This has really helped us to maintain our health over the last year. #PulmonaryRehabWeekUK21

Thank you Maxine and Dee for sharing your Personal experiences of caring for loved ones with #PF’. So informative, positive and hopeful. #CarersWeek2021

Thank you Ron and Maxine for telling your lived experience with IPF. So insightful and moving. #CurePF

Vaccination part one! John from our support group, who is clinically extremely vulnerable, rolls up his sleeve for the first of his covid vaccine jabs. Very well organised at GP surgery. Please make sure you get yours as soon as you are invited.