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
#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.
Better late than never. Introducing our new SPVU registrar Dr Harrison Stubbs. Dr Stubbs is a great addition to SPVU and we look forward to working with him over the next 3 years.
Research
The Scottish Pulmonary Vascular Unit runs programmes in clinical and basic science research
PHA UK FACEBOOK FEED
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As #OrganDonationWeek continues we'd like to give a shout-out to PHA UK member Michelle Hemmings (pictured in the middle) who has organised a range of events to raise awareness of transplant and organ donation.
Michelle received a double lung transplant in 2018 after living with #pulmonaryhypertension
"We need to have more conversations about organ donation"
Today marks the start of #OrganDonationWeek and in this special article, PHA UK member Paula Massie tells her #pulmonaryhypertension transplant story. Please share and let's get people talking: bit.ly/3bySNBj
If you're aged 11-18, the BBC Young Reporter competition could be a great opportunity to share your PH story. Maybe you have pulmonary hypertension yourself, or you live with someone who does? The competition is designed for young people to tell their unique stories on TV, radio, online or on social media with the help of BBC journalists, producers and programme-makers.
Find out more here: www.bbc.co.uk/teach/young-reporter/competition/zghcydm
Iain Armstrong, co-founder and chair of the PHA UK, on being named Respiratory Nurse of the Year by the British Journal of Nursing 👇
We loved receiving this beautiful card at the office yesterday. Clinical nurse specialist Sian Richardson sent it to say thank you for the support from the PHA UK during the pandemic, and the collage was made by her godchildren Thomas and Phoebe.
Zoom in and you'll see photos of wildlife making up the layers of the rainbow 🌈
The autumn issue of Emphasis has gone to print and will be dropping through letterboxes towards the end of the month 📮
The magazine is free for members of the PHA UK - join now (also for free!) at www.phauk.org or send us a private message
"My motivation for my work has always been the patients, who are at the centre of everything"
Last week, our chair and co-founder Iain Armstrong was named 'Respiratory Nurse of the Year' at the British Journal of Nursing Awards. Read all about it here: bit.ly/2QWl0si
💜💙 We want to take a moment to say a big thank you to everyone who has been raising money for us over the summer (and throughout the year!) Your fundraising and donations mean we can continue our work to support people affected by PH and we are so grateful 💜💙
The first of many reminders as we head into autumn 😉
This year it's more important than ever to make sure you get your flu vaccine. It's free if you have PH (and also, this year, for those you live with too). Find out more here: www.nhs.uk/conditions/vaccinations/flu-influenza-vaccine/
If you have applied for benefits over the last few months, have you had your assessment via telephone or online?
We're interested to know what your experiences have been - good or bad! - to aid future discussions with the agencies who carry out the assessments and the DWP themselves. Please comment below or send us a private message if you would be willing to share them with us.
We are very proud to announce that our Chair Iain Armstrong has just been named Respiratory Nurse of the Year in the prestigious British Journal of Nursing Awards 👏
This is a national award that recognises the huge impact Iain has had in the field of pulmonary hypertension and the difference he has made to patients. Please join us in congratulating Iain and thanking him for his contribution.
It's free to become a member of the PHA UK and we welcome anyone with a connection to pulmonary hypertension - including carers, loved ones, and healthcare professionals too.
Simply fill in the short online form here: bit.ly/3jnLzmA
Or, you can send us a private message or email.
Joining means you'll receive our award-winning Emphasis magazine through your door 4 times a year 💙
Need help when it comes to applying for benefits? Download our free guides here 👉 bit.ly/3gwbcj9
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Topics include:
💰The types of benefits available
💰Important definitions and phrases
💰The WHO functional class
💰The 3-stage appeals process
We have a little visitor in the PHA UK office today and we think it's safe to say he is happy to be here! 🐶
PHA UK TWITTER FEED
This feature can also be found on our lifestyle website, where it can be translated into 99 different languages to help people of all nationalities to understand ICU delirium: https://phocusonlifestyle.org/understanding-icu-delirium/
"Delirium can affect not only the patient but the family too. It's really important we encourage understanding of it."
Kate is a senior staff nurse in critical care and a 'delirium champion'.
She's been discussing ICU delirium with @PHA_UK: https://issuu.com/phauk/docs/emphasis_summer_2021
@ICUsteps