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– Who to refer
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– How to refer
– Who to screen
– Assessment and follow up at SPVU


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Do you need help to manage anxiety, panic or worry?
We’ve partnered with psychology researchers to trial a new self-help programme and we're looking for people with PH to take part.
It can all be done from the comfort of your own home - there is no need to travel anywhere and you can work through the programme at your own pace. More details: bit.ly/3kcZixz
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Thank you, Shelly, for sharing your journey*Tonight at 9pm!*
Tune into BBC2 tonight (6th Oct) to see PHA UK member Shelly undergo a pulmonary endarterectomy in an attempt to cure her Chronic Thromboembolic Pulmonary Hypertension (CTEPH).
Shelly's op, which took place at Royal Papworth Hospital is being shown on 'Surgeons: At the edge of life'. We'll be watching!
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(📸: Royal Papworth)
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Get in touch with the programme if this is you, or just remember to watch.The channel 4 show Steph's Packed Lunch is looking for someone who has undergone a pulmonary endarterectomy to talk about it on the show next week.
Ideally they would like to someone to come into the studio in Leeds (all expenses paid, including hotel stay if required) - and to be interviewed with their partner or carer.
If you would be interested in raising awareness of CTEPH in this way, please send us a private message.
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www.facebook.com/331773100361224/posts/1572684059603449/*NEW INFOCAST: CORONAVIRUS & PH* 🎙️
Watch Dr Martin Johnson of the Scottish Pulmonary Vascular Unit and Dr John Wort of the Royal Brompton Hospital talk to the PHA UK's Dr Iain Armstrong about the current risk levels for people with #PulmonaryHypertension: youtu.be/Inwfk-SA3AY
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ScotGov have published some advice for those leaving shielding today. If anyone has any worries or concerns about the pausing of shielding please give us a call on 0151 951 5771/5623/5621 and we can have a chat. ... See MoreSee Less

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The Scottish Government shielding route map. Hopefully you’ll be able to enlarge this photo enough to read it. If not you can view it here
www.gov.scot/binaries/content/documents/govscot/publications/advice-and-guidance/2020/03/covid-sh...
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Timeline PhotosOur quick guides to understanding key aspects of the benefits application process are available to download now: bit.ly/3f5Gldi
Choose from:
✔️ What benefits are available
✔️ Important definitions
✔️ The WHO Functional Class
✔️ The appeals process
We know the process can be daunting, so we hope these free resources help 💙
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*Downloadable mask exemption notice*
Get yours here 👉 bit.ly/2VOaDd5
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If you have pulmonary hypertension, you do not have to wear a mask if it affects your breathing or makes your symptoms worse. You are exempt even in places where wearing a mask is required, for example on public transport in England and Scotland.
We understand that PH is an ‘invisible illness’ and therefore those around you may not understand why you are not wearing a mask. That’s why we have designed a printable notice that you can carry with you, and display if you are challenged. You can also show it on your phone.
If you don't have a printer, please email office@phauk.org and we will happily post you one out.
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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 💙
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Some appreciation for all those carers 👏👏👏

www.facebook.com/184792054937541/posts/2968198633263522/
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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.
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Research

The Scottish Pulmonary Vascular Unit runs programmes in clinical and basic science research

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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
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"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
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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
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Iain Armstrong, co-founder and chair of the PHA UK, on being named Respiratory Nurse of the Year by the British Journal of Nursing 👇 ... See MoreSee Less

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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 🌈
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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
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"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
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💜💙 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 💜💙 ... See MoreSee Less

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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/
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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.
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💜 Save the date 💜
#RareButThere #phweek20
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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.
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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 💙
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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
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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! 🐶 ... See MoreSee Less

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"A life in all its fullness"
After a difficult few months, little PHighter Abbie is now able to join her brothers at school - something she has always dreamed of. Her mum Andrea celebrates in this special blog: https://bit.ly/3jj1F0f 💙

Little Archie Creech will be walking 20 miles over 7 days for his PHighter20 challenge 🤩
It's not too late to choose your own challenge for PH Week - you'll find all the details here: https://bit.ly/34f58IU
#PHWeek20 #RareButThere #PHighter20Challenge

When you've contacted 10 different media companies - newspapers and radio - to try and get your PH story out there for PH Awareness Week (2-8 November 2020). Fingers crossed I hear positively from someone!💜@PHA_UK #pulmonaryhypertension #NoCureAlwaysHope #RareButThere #PHWeek20

A couple of the most recent 'one word' pics we've had through 💜
To be included in our special video for #PHWeek20, write down one word which sums up #pulmonaryhypertension for you, snap a photo and send by private message or to media@phauk.org by Wednesday (21st October)

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Starting online Christmas shopping already?🛒
If you 'start at smile' with Amazon a percentage of your eligible purchases will come straight to our charity - at no extra cost to you.
Just go to http://smile.amazon.co.uk and choose us from the list 🧡

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