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
To understand the science behind pulmonary hypertension and promising future treatments, important work continues behind the scenes in Universities. Our thanks to the talented scientists named below, and for the close relationship our unit has with them and Glasgow and Glasgow Caledonia Universities. A shout out to Dr Chris Carlin, one of our former senior Research Fellows who some of you might remember. 👏👏👏👏 twitter.com/YvonneDempsie/status/1214580376808697856?s=19
👏👏👏👏Say hello to the new PAH Patient Charter. Thank you to its creators and contributors.
twitter.com/wginsing/status/1194194373258465280?s=09
Care to weigh in, in the comments below, on how it makes you feel?PH Awareness Week marks 5 years since Liesl Andersson was diagnosed with #pulmonaryhypertension.
In this blog, she calls for people to be more understanding of those with hidden disabilities: bit.ly/2oAPaqv
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#PHWeek19 #TogetherForPH
Worth considering...
#phweek19We're talking a lot about the emotional impact of pulmonary hypertension this week. As a PHA UK member, you can access free support via our partnership with Anxiety UK - so you don't have to struggle alone. Find out more here: bit.ly/2WIMt2F
#PHWeek19 #TogetherForPH
Well done to all who are getting the message out there for #PHAwareness. Best wishes to the young woman featured in the news story. With modern treatments and specialist care she is doing well! Her story may strike a cord with some of our Scottish patients on the same or different treatments.
www.itv.com/news/meridian/2019-11-07/pulmonary-hypertension-the-rare-lung-condition-with-new-cure/
Pulmonary Hypertension - the rare lung condition with no cure
A primary school teacher from Kent, who was diagnosed with a rare lung condition, was first told she may have asthma. Alex Charlesworth from Dartford is now trying to raise awareness of Pulmonary Hype...Another of our clinical research fellows looking at specialist care for people with PH who have to undergo surgical operations
One of our current clinical research fellows shows the results from Alison MacKenzie's exercise study. The results were positive.
Many, many thanks to ALL of our wonderful research participants 🙏, and particularly in this instance to those who took part in the exercise study. 💪
www.phocus2021.org/make-a-pledge/
Make the pledge to increase #PHAwareness
#PHweek19 #PHAwareness
Some of our team at Chelsea Physics Garden, attending the National Pulmonary Hypertension Research Forum.
Hello Karon, Sandy and Nadine 👋
Nice hat, Karon!
PH clinical nurse specialists Karon Carson, from the Golden Jubilee National Hospital, and Carl Harries, from The Royal Brompton, catch up in London where they are attending a PH meeting.
Brand new publication from PHAUK, looking into PH lives. #phweek19 #PHAwareness
PH week is coming soonFurry friends can get involved with PH Week week too!
Why not get them to model our awareness cards, like Archie? ❤️
Download and print yours here: bit.ly/35yOR08
Share them online with the hashtags #TogetherForPH #PHWeek19
*PH Week takes place 4th - 10th November*
Timeline PhotosTune into Paul O'Grady's Little Heroes on ITV tomorrow (Thursday) at 8.30pm to hear young pulmonary hypertension patient Lucy Hunter's story 💜
Scotland is represented by our Director, Dr Martin Johnson, and Clinical Nurse Specialist, Rachel Thomson
Research
The Scottish Pulmonary Vascular Unit runs programmes in clinical and basic science research
PHA UK FACEBOOK FEED
Our sister site is packed with advice, features, real experiences and videos - all designed to help you live a good life with #pulmonaryhypertension.
Check it out now: bit.ly/2Nv97bG
*Living with dementia alongside other health conditions like PH*
In this new article over on www.phocusonlifestyle.org we look at the causes of dementia and the help that's available: bit.ly/3aJ8qFM
It's great to see Christmas fundraising donations still coming in; we're so grateful to everyone who thought of us over the festive season.
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🎄 St. John's C.E School in East Sussex held a collection at their nativity service in support of former pupil Luciana Pettitt, raising £300
🎄 Westpoint Farm Vets in Kent raised £130 from a raffle at their Christmas meal, in memory of former client Joshua Parker
🎄 Bente Jane Thornton and her friends donated £30 instead of doing Secret Santa presents
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Thank you so much to you all!
We received this lovely medal presentation today from the organisers of the British Transplant Games, thanking us for our support of last year's events.
The Games head to Coventry this summer and we'll be bringing you more information soon about how we're getting involved - and how you can too!
We were delighted to receive another donation from these chaps, who raise money via their gigs in memory of Will Acres. Thank you to Rye Milligan and the rest of Luna Bay for being such fabulous supporters 🙌
*Standing up for the PH community*
On Friday we met with a senior representative from Maximus, the company contracted by the Department of Work and Pensions to carry out assessments for Employment and Support Allowance.
We requested the meeting to understand more about the assessment processes, and how we can help improve them for people with pulmonary hypertension. We presented the results of our research into the financial impact of PH, which clearly shows dissatisfaction with the process, and showed recent videos filmed with members to ensure they understand that it’s real people at the heart of it all.
We took them to task on a number of things, and talked about how we can collaborate, for example by updating and improving their training materials on PH.
We have also made contact with Capita (who carry out many of the PIP assessments) but are yet to hear back.
We’ll keep you updated on developments, but please be assured that when you share your voices in our research or take part in our videos, as you can see, it really does make a difference!
Baffled by benefits? Our partnership with Turn2Us gives you access to a handy online tool to help you work out what you may be entitled to. Access it here: bit.ly/35ZNy9A
It's completely FREE to join the PHA UK! Be part of a unique community of people affected by pulmonary hypertension and benefit from:
✔️An award-winning magazine four times a year
✔️Access to exclusive member conferences and events
✔️A welcome pack full of useful resources
✔️The opportunity to take part in important surveys and research
✔️Support from a dedicated charity team
...and much, much more!
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Sign up online: bit.ly/2Rmll7x
Or call us on 01709 761450 ☎️
Subscribe to the PHA UK YouTube channel and you'll be notified every time we upload a new video 👍
Subscribe for free here: shorturl.at/ijnxA
👀 NEW VIDEO: Respiratory consultant Charlie Elliott and Professor Paul Corris discuss the facts about transplant, ahead of the upcoming law change around organ donation in England
We've been recording something a bit different for you this morning (and having plenty of laughs along the way!)
First ever PHA UK podcast coming soon! 🎤🎧
TOP TIP: If you're paying for prescriptions, an NHS pre-payment certificate could save you £££s...
One prescription costs £9, but for a monthly direct debit of £10.40, you can get as many as you need - for no additional cost. So, if you have more than one prescription a month, it's guaranteed to save you money.
Find out more, including how to apply, here: bit.ly/35RizfC
📸: NHS Business Services Authority
🎬New video🎬 In November, researchers in the field of pulmonary hypertension came together for the National PH Research Forum - where academics and scientists share their findings and drive forward new therapies. We caught up with some of the delegates to find out what they are working on...
*Technology to help you feel safer at home*
From smart speakers to telecare, this new article on our lifestyle website looks at what might be worth considering: bit.ly/2tN1BBI
We've just come across this beautiful recording of choral work which explores the experience and isolation of people affected by breathlessness. Take some quiet time to listen to it here: bit.ly/2N8dB7Z
Composed by Toby Young, the piece was specially commissioned for the Feel It Festival in 2016. It was conducted by Stephen Rice and performed by Bristol University Singers with soloists from the internationally acclaimed Brabant Ensemble. Read the story behind the piece here: bit.ly/39TdUNs
