LATEST NEWS
Pulmonary Hypertension and the DVLA
Travelling and going on Holiday with Oxygen
Vaccinations
SPVU Patient Day 2018
HEALTH CARE PROFESSIONAL
– Who to refer
– Suggested assessment prior referral
– How to refer
– Who to screen
– Assessment and follow up at SPVU
Our teaM
SPVU FACEBOOK FEED
We know that for some people with PH, wearing a mask or face covering can be difficult. We're working on a downloadable notice that you can print and carry with you should you be challenged, explaining that you have a condition that affects your breathing.
Young children and people with disabilities or breathing problems are exempt from having to wear a mask in areas where it is compulsory (such as on public transport) - but we know that PH is an invisible condition and others don't always understand. Look out for the notice coming soon 💙
New Scottish Government Advice.
From 19th June, if you are Shielding:
⚠️ Stay at home as much as you can until at least 31st July
⚠️ Avoid going places that are indoors
⚠️ Keep 2 metres away from other people
If you go outdoors:
⚠️ Try to avoid touching objects and surfaces
⚠️ Maintain strict physical distancing of 2 metres or more
⚠️ Try to choose times and areas that are quiet
⚠️ Stay close to home so you do not have to use a toilet that is not your own
⚠️ Wash your hands for at least 20 seconds as soon as you get home
www.mygov.scot/coronavirus-if-you-need-to-stay-at-home/
As ever, get in touch with us at the SPVU if you are looking for further clarification for your particular situation.
Coronavirus - if you need to stay at home - mygov.scot
www.mygov.scot
What support you can get if you need to stay at home because of coronavirus.Chief Medical Officer, Scotland has issued new advice. Summary in bullet points: 👇
⚠️ Shielding to continue till 31st July
⚠️ Watch out for an announcement around 18th June allowing exercise out of doors, providing you follow guidance to do this safely
⚠️ The Country acknowledges the personal sacrifice you are making by shielding. It is clearly working by keeping infection rates down 👏
⚠️ Some face to face health care appointments are necessary, although many can be handled by telephone or video-link
If in doubt, give us a call ☎️. We are here to help.
twitter.com/PHA_UK/status/1269716267491082242?s=19
twitter.com
“Our partnership with @turn2us_org gives you free access to a benefits calculator and grants search tool - helping you work out exactly what you could be entitled to. You'll find both online tools h...Shielding advice for Scotland is unchanged, confirms First Minister Nicola Sturgeon.
A big clap for all those shielding at home. We know it's not easy. Keep up the effort. We are proud of you.
Hello! Something new to bring to your attention. 👇
You can enter your Covid Pandemic experience in a survey being carried out by the European Reference Network of Rare Lung Diseases (ERN-LUNG). Please use the link below, or copy it into your browser, if you would like to go ahead. This is a global survey dedicated to PH patients.
Participation is voluntary.
ern-lung.eu/portfolio-items/phcare-covid-survey/
Well done, Warrior Tess
www.facebook.com/331773100361224/posts/1460947847443738/
Timeline PhotosIf you have PAH, please take 2 minutes to answer our short survey: www.surveymonkey.co.uk/r/genetics_PAH_information_needs
Thank you to everyone who has shared their thoughts so far 🙏
This lovely video was sent to us from one of our patients Colin Reid. He was involved in the making of this film, mainly with musical content and storyline. Thank you Colin the effort is much appreciated
SPVU would like to thank all the hard working, wonderful nurses of the world on International Nurses Day.
Minimal change to Lockdown rules in Scotland.
Added to this, shielding advice is still in place. Stay safe xxxxx
twitter.com/PHA_UK/status/1259496426939260928?s=19
twitter.com
“if you're anxious, depressed or stressed you can access FREE therapy sessions via our partnership with @AnxietyUK. Just need a listening ear? They have a dedicated helpline and email service too, e...In celebration of VE Day, let's all recall the iconic words of Dame Vera Lynn, 'We"ll meet again...'
And we are looking forward to it!
twitter.com/PHA_UK/status/1257596402777108482?s=19
twitter.com
“Today marks the annual World PH Day and although the world looks a little different this year, we still need to make our voices heard. #WorldPHDay2020 #TogetherForPH”
Research
The Scottish Pulmonary Vascular Unit runs programmes in clinical and basic science research
PHA UK FACEBOOK FEED
As it's Friday, we hope this poem raises a smile! Member Brian Phillips penned it during an emergency hospital admission when he was eventually diagnosed with CTEPH:
Shove this on your finger,
While I stick this in your ear.
Don’t move off the bed, Sir,
Have I made myself, quite clear?
Here’s a push to call me,
Takes, say, half-an-hour a throw,
So for bottle or a bedpan,
Better plan your need go.
Don’t pull off the wires.
Makes the monitor upset.”
(It’s got two signals, Loud and Quick,
I hear the damn chimes yet!)
It’s got three channels on its screen,
Pulse, Oxygen and Breath.
With space for yet another,
But I guess it isn’t set.
Pulse and Oxygen, I can’t control,
And generally, they’re fine,
But if I’m feeling naughty,
Hold my breath and then ………… Flatline!
You ought to see them run about.
Like anthill overturned,
But when the chaos does subside,
Well! Then my ears get burned.
“I’ve got this needle for your tum,
And this one’s for your arm,
Let’s not forget your thighs and bum,
Won’t do them any harm!
“Sharp scratch coming.” Mercy me,
I just don’t need to know.
I much preferred the older school,
Who came to jab and go!
“Can I listen to your chest?
Mmmm. Sounds, clear as a bell,
Tuned to Radio One, I think,
As near as I can tell.
Silly me, I’ve used me iPod
Not me stethoscope,
All these gadgets look the same.”
(That really bolsters hope!)
They sent me for a CAT Scan,
But the Puss I didn’t suss,
The Operators ran and hid.
(Should I make some sort of fuss?)
But after all the pokes and prods,
The diagnosis comes.
Pulmonary Embolisms.
(Blood clots in the Lungs.)
So now I’m on the Warfarin,
To take the Clots away,
But I’m the biggest Clot of all.
I hope it lets ME stay.
If you have regular blood tests for Ambrisentan, Bosentan or Macitentan, please read this update on behalf of the UK's specialist centres: bit.ly/2VCVP0P
Worried about crowded places as you begin getting out and about? We've come across this handy free app that lets you see in real time how busy shops and other areas are, so you can time when you go: crowdlessapp.co/
If you use it, let us know what you think!
*Physical activity, PH & the pandemic*
Our new infocast discusses the importance of being kind of yourself when it comes to exercise, especially as we move out of lockdown. Listen here: bit.ly/2NSvcAs
We know that for some people with PH, wearing a mask or face covering can be difficult. We're working on a downloadable notice that you can print and carry with you should you be challenged, explaining that you have a condition that affects your breathing.
Young children and people with disabilities or breathing problems are exempt from having to wear a mask in areas where it is compulsory (such as on public transport) - but we know that PH is an invisible condition and others don't always understand. Look out for the notice coming soon 💙
If you can spare £1 a week, playing the PHA UK lottery is a really good way of supporting us with a regular donation - whilst being in with the chance of winning up to £25,000 yourself! 🎉
Find out more or sign up here: www.phauk.org/get-involved-with-the-pha-uk/play-pha-uk-lottery/
How about this for some #mondaymotivation?! Supporter Graham Timbers is planning to cycle from Lands End to John O'Groats in the autumn, to raise money for the PHA UK following his journey with CTEPH.
Graham, who underwent a pulmonary endarterectomy last year, spent lockdown training in his shed and is now back out exploring the roads. We'll keep you posted on his challenge!
Walk with us, wherever you are, on 1st August! 🚶♀️🚶♂️
We're bringing the PH community together by encouraging everyone to walk at the same time at 1pm on Saturday 1st August. It's free, open to anyone, and you can do it anywhere - even in your living room. Scooters and wheelchairs welcome too of course!
Find out more: www.phauk.org/get-involved-with-the-pha-uk/walk-with-us/
#walkwithus #TogetherForPH
Member Nicola McCulloch has been busy making these masks for friends and family, and has asked for donations to the PHA UK in return. What a wonderful idea!
She said: "Keeping busy making masks and knitting has helped me cope through some of the tougher days of lockdown".
Thank you so much to Nicola and her friends and family who have donated 💛
Following Monday's announcement about the upcoming changes, we have shared our thoughts and advice on the easing of shielding restrictions for people with pulmonary hypertension: www.phauk.org/easing-of-shielding-restrictions-our-thoughts-and-advice/
Please share this with anyone you think could benefit, particularly if they are not online.
Our Covid-19 survey is still open and we'd really like to hear your experiences of the pandemic. If you haven't already, please take some time to complete it; your voice is important.
You can take part online here: www.surveymonkey.co.uk/r/Covid-19_PH
Thank you to everyone who has already completed the survey either online or via post.
PHA UK member Maureen Jones has sent us another poem written by her talented daughter Catherine.
Catherine sends a lockdown-themed poem to her mother every Sunday, to give her comfort whilst she is shielding. Please take a minute to read the latest one below.
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Moonlight silk blankets cover the pewter shadowy ground,
Slumber protects bright pink poppies without any sound.
Restful peace so morning brings strength for early bright bloom,
Thoughts of a day processing and progressing positively soon.
So very gently and cautiously from hibernation some now emerge,
Looking around at what is now a changed and unfamiliar world.
Smiles through glass, masks and shields followed by virtual hugs,
Every moment in time a blessing but at heart strings tugs.
Brilliance in strength and support we all need it sometime,
Just a kind word or gesture shows things will be just fine.
You really are amazing and so courageous and that you must never ever forget,
For in these unusual times you really can show you are the best you have been yet.
It has been announced tonight that people who have been self-isolating in England during the pandemic will no longer need to shield from 1st August.
From 6th July, they will be able to meet up to 6 people outdoors and form 'support bubbles' with other households
Government support packages will remain until the end of July to help people transition.
We have heard about this update during tonight's public government briefing - at the same time as everyone else - and we will bring you more on what this means for the PH community in the next couple of days.
We're looking for someone affected by PH, and who has experience of fostering a child, to share their experiences anonymously for a publication we are producing. If you would be happy to answer a few questions via email or telephone, please send us a private message 💛
PHA UK TWITTER FEED
We know that for some people with #pulmonaryhypertension wearing a mask or face covering can be difficult. We're working on a downloadable notice that you can print and carry with you should you be challenged, explaining that you have a condition that affects your breathing.