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Pulmonary Hypertension and the DLVA
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– Who to refer
– Suggested assessment prior referral
– How to refer
– Who to screen
– Assessment and follow up at SPVU
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SAVE THE DATE!!!!!!![]()
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The infamous SPVU Patient Day is on the horizon 🎉. After over two years of Covid delays the patient day will be held on Saturday 22nd October at the Golden Jubilee Conference Hotel. ![]()
We have some very interesting talks and workshops this year including medications, anticipatory care planning and research participation. We are delighted that Dr Sucharob, our psychologist, will be giving a talk. It will be great for everyone to meet her along with Emma, our pharmacist who took over the role from Nadine. We will be sending out invites in the coming weeks but if you are interested in attending please give Karon or Rachel a call on 0141 951 5771 to ensure an invite reaches you. Unfortunately due to funding constraints we cannot offer paid hotel accommodation to folks in the following health boards- Glasgow, Lanarkshire and Ayrshire. Some exceptions apply to Glasgow such as Arran, Bute, etc but please call to discuss all options.
The new booklet from PHAUK has landed which incorporates the SPVU’s Anticipatory Care Plan. Have a look and let us know what you think. The SPVU still have plenty A4 size care plans to give out too. Remember palliative care is nothing to be concerned about and is just good holistic care. If you want to know more about palliative or supportive care you can call Karon or Rachel at SPVU on 0141 951 5771. We will also be running a workshop on anticipatory care planning at our up and coming Patient DayOur new guide to palliative care & PH is now available to order for free: bit.ly/3sFpqr1![]()
With advice from experts and real experiences, this resource aims to challenge misconceptions and help you understand more about this type of supportive care. We hope it will educate, inform, and spark important conversations.![]()
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The guide also includes a separate Anticipatory Care Plan booklet, tucked inside the back cover, to help you plan for the future.![]()
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Thank you to everyone involved in producing this important publication, which we are proud to be making available for our PH community. ![]()
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Order your copy for free here: bit.ly/3sFpqr1
We are pleased to be able to tell you that the SPVU Emergency Paging service is now working normally. Apologies for any inconvenience. Thank you for your patience.
Good morning. We are experiencing some technical difficulties with the SPVU Emergency paging system. ![]()
If your situation is urgent please dial the number as usual but make sure you speak to the operator leaving your name and contact details. Your message will be passed to a member of the SPVU medical team who will call you back.![]()
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We hope to resume normal service very soon.
If you use CADD Solis Flowstop cassettes for your intravenous epoprostenol, please read our important update: www.phauk.org/supply-status/![]()
We will continue to update our website and will do our best to bring you the latest information as soon as we can.
"I'm learning new ways of coping"![]()
Today, we're sharing another member blog, this time by 31-year-old Daniel Redmond. Read it here: bit.ly/3sR94Lg![]()
If you'd like to write a blog for publication on our website, send us a private message or email media@phauk.org 👩💻
If you are visiting SPVU in the next 4 weeks you will need to give yourself extra journey time due to COP26. There will be numerous road closure in Glasgow and the traffics will be greatly increased. If you are worried or wish further advice please feel free to give us a call
SPVU had a lovely visit from Morag and Phyllis. Thank you ladies. It was lovely to see you.Sisters Morag and Phyllis visited us today with a generous donation on behalf of their late mother who was a patient in our SPVU unit last year. ![]()
They expressed their thanks to the staff and shared some fond memories saying: "Even during these difficult times they were brilliant, keeping us updated and providing excellent care. It was lovely that the doctors were able to have a laugh with mum." ![]()
Thank you Morag and Phyllis, from everyone here at #TeamJubilee💙
#StaffSpotlightSunday Jim Mearns took up post with the Scottish Adult Congenital Cardiac Service in 2009. At that time he was the only Specialist Nurse in that role working with 2 Consultant Cardiologists. Jim has shared his experience and is looking forward to his new role!
*National Cohort Study of Idiopathic and Heritable Pulmonary Arterial Hypertension*![]()
Researchers investigating genetic causes of PAH are looking for more people to take part in this major study. They need:![]()
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• People with idiopathic PAH![]()
• People with heritable PAH![]()
• Relatives of people with either of these conditions![]()
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Patients will be followed up either at their routine clinic appointment or remotely by telephone.![]()
Relatives will been seen at their local PAH centre (this does not have to be where their PAH family member is seen) or remotely by telephone/video call.![]()
If you are interested please visit www.ipahcohort.com or contact your specialist centre.![]()
You can also watch and listen to the researchers talking to PHA UK Chair Iain Armstrong about the study here: www.youtube.com/watch?v=SBlfGRj6OC0
Red4Research Day on Friday 18th June shows appreciation for all those participating in, undertaking and supporting COVID-19 research. It's always been a collaborative effort. A very few of the multidisciplinary team from one research site are pictured here.
*NEW RESEARCH OPPORTUNITY*![]()
We need to understand how the pandemic has affected our UK PH community and we'd really appreciate your time to help. ![]()
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👉If you have PH, please complete these questions: bit.ly/3csvZVQ ![]()
👉If you are a parent / guardian of a child with PH, please complete these questions: bit.ly/3w8z6d5 ![]()
👉If you live with someone with PH (eg. a partner / family member) please complete these questions: bit.ly/2SdJyS8![]()
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We’ve all navigated the COVID-19 storm in different boats, and as a society we need to understand the impact of the last 18 months so that lessons can be learned.![]()
It’s essential that we capture the experiences of the PH community during this unprecedented time, and we really need your help to do this.![]()
Last year, three months into the pandemic, we conducted important research to help us understand your experiences of shielding – providing vital insight into the effects of the early stages of COVID-19.![]()
A year later, and 18 months since the virus reached our shores, it’s important to understand the wider picture.![]()
We want to hear from all parts of our PH community – patients, parents, loved ones, and carers too.![]()
Thank you for helping us to make the voices of our PH community heard.
It's International Nurses Day! Thank you to all nurses who have helped every one of us in some way over the years. We think especially of the nurses who contributed so much to the Covid response, and of the sacrifices made by nurses, doctors, carers, families and patients during this trying time. Our own nurses are among those who changed roles during the pandemic to help out. ![]()
A big shout out to our SPVU Clinical Nurse Specialists, and a big virtual hug to them 💕💕. Thank you, nurses.
c.tenor.com
Research
The Scottish Pulmonary Vascular Unit runs programmes in clinical and basic science research
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🇦🇺 Erin lives with #PulmonaryHypertension in Australia & she'll be sharing her story in our special 'going global' feature in the next issue of Emphasis.
Our award-winning magazine is free to members (& it's free to join too!) Sign up: https://www.phauk.org/get-involved-with-the-pha-uk/become-a-member/
Delighted to have been involved with the @TheBHF report - Impact of Pulmonary Hypertension Research over the past 60 years https://www.bhf.org.uk/impactofph - Long may their support continue! @ShefUni_IICD @ImperialNHLI @PVRI @3CPRCouncil @ATS_PC @PHA_UK. Many thanks to all that helped.