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
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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:
• People with idiopathic PAH
• People with heritable PAH
• Relatives of people with either of these conditions
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.
👉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.
*Help to prepare for benefits assessments*
This new FREE publication gives you the tools, information and understanding to be totally prepared for your benefits assessment.
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✔️Unpicking the assessment process – who, what, why and when
✔️Evidence, key phrases and what you should draw attention to
✔️The role of carers / loved ones in the process
✔️Checklists and prep forms
✔️Space to record your own notes, prompts and reminder
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Order for free here: bit.ly/3aX8ROJ
Timeline PhotosWhat equipment do you use to monitor your health at home? If you have PH we'd really appreciate 10-15 minutes of your time to complete our online survey bit.ly/3bjg76j 🙏
If you're reading this but you're not a member, we'd love you to join us! Becoming a member of the PHA UK is totally free and we welcome anyone with an interest in pulmonary hypertension.
Join here: bit.ly/3oXlKMK
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Members receive our award-winning Emphasis magazine through the door every quarter and benefit from being part of a unique network of support and inspiration.
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Not sure whether you're already a member? Send us a PM and we'll check 👍
The SPVU nurse team hours are changing short term. As of this week the nurses can be contacted between 8am and 4pm Monday to Friday.
Following this morning’s announcement that the Pfizer/BioNTech COVID-19 vaccine has been approved for use in the UK, the Joint Committee on Vaccination and Immunisation (JCVI) has now published its advice on priority groups for vaccines.
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The final list of priority groups are now prioritised as follows:
1. Residents in a care home for older adults and their carers
2. All those 80 years of age and over. Frontline health and social care workers
3. All those 75 years of age and over
4. All those 70 years of age and over. Clinically extremely vulnerable individuals
5. All those 65 years of age and over
6. All individuals aged 16 years to 64 years with underlying health conditions which put them at higher risk of serious disease and mortality
7. All those 60 years of age and over
8. All those 55 years of age and over
9. All those 50 years of age and over
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You can read the full advice document here: bit.ly/3g11Q01
Incase you missed it yesterday. Here is Dr Toshner chatting to Iain about the Covid-19 vaccine. Definitely worth a watch**COVID-19 VACCINES & PH: THE FACTS**
Our interview with Dr Mark Toshner, PH consultant and researcher behind the Oxford vaccine study, is now available here: bit.ly/2IVmYsP
Watch the video, listen to the audio, or read the report of the conversation.
We'd love to know what you think. Do let us know in the comments, and thank you to everyone who submitted questions.
Should be an interesting listen. Make sure you tune inDo you have a question about the COVID-19 vaccines that are currently in the news?
On Monday we are interviewing expert Dr Mark Toshner for a special infocast, and we want to find out the answers that are important to you.
Please send your vaccine question via email only to media@phauk.org, before 9am on Monday, and we will choose as many as we can. Please include 'vaccine question' in the subject line.
Research
The Scottish Pulmonary Vascular Unit runs programmes in clinical and basic science research
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Our first official episode of EmPHAsis on Air is now available 🎧
Episode one is all about putting the spotlight on #PH - and we've exciting news about our new clothing range too!
Listen here:
https://player.captivate.fm/.../64406325-ef4d-4ecf-a39f.../
Also on Spotify, Apple Podcasts, Amazon Music, Audible & more
Not all disabilities are visible! Listen to @maritess_mt talk about the challenges of having a hidden illness in her new podcast episode 👇
Invisibility of PH - S1: Episode 6 is now available to download & listen. Pls join in the show by emailing phightertesspodcast@gmail.com. Available on many platforms, so please subscribe! 🎙️💜http://phightertesspodcast.buzzsprout.com #podcast #pulmonaryhypertension #phighter
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