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
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
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!
------
(📸: Royal Papworth)
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.
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
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.
😷 Wearing a face mask if you have pulmonary hypertension may not make you happy, but, if you can, do wear a mask.
If you find it particularly difficult to wear a mask, you are exempt. The First Minister has made it clear you do not need a certificate to justify this to members of the public.
If you prefer to have something solid to hand to explain your situation, visit
www.phauk.org/coronavirus-pulmonary-hypertension/mask-exemption-notice/
www.phauk.org
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...The British Lung Foundation has some pointers about mask wearing. You could give it a try if you feel up to it.
twitter.com/lunguk/status/1287751048350830607?s=19
British Lung Foundation on Twitter
twitter.com
“*THREAD* If you can, please wear a face covering in enclosed spaces where social distancing may not be possible or when you come into contact with people you don’t normally meet. It’s a good id...UPDATE.
PLEASE READ THE WHOLE POST AND CONTINUE TO KEEP SAFE. REMEMBER TO WASH YOUR HANDS OFTEN WITH SOAP FOR AT LEAST 20 SECONDS OR USE HAND SANITISER.
Shielding is set to pause on 1st August. Wait till 1st August, but we are nearly there 🤜🤛
THE SCOTTISH GOVERNMENT ADVISES FROM 1st AUGUST:
⚠️ You can go to shops, pharmacies, garden centres and indoor markets wearing a face mask
⚠️ You can go to the hairdresser's or a barber wearing a face mask
⚠️ You can go to pubs and restaurants with outdoor spaces
⚠️ You can meet up indoors with up to 8 people from 2 other households, with social distancing
⚠️ You can meet outdoors with up to 15 people from 4 other households, outdoors with social distancing
For the whole list and more, visit www.gov.scot/publications/covid-shielding/
Telephone your clinical specialist nurse if you are unsure and would like some tailored advice.
Coronavirus (COVID-19): shielding advice and support - gov.scot
www.gov.scot
Details of shielding advice to help people make informed decisions and access support services.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...
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 💙
*Downloadable mask exemption notice*
Get yours here 👉 bit.ly/2VOaDd5
------
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.
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 💙
New Scottish Government Advice.
From 19th June, if you are Shielding:
⚠️ Stay at home as much as you can until at least 31st July
⚠️ Avoid going places that are indoors
⚠️ Keep 2 metres away from other people
If you go outdoors:
⚠️ Try to avoid touching objects and surfaces
⚠️ Maintain strict physical distancing of 2 metres or more
⚠️ Try to choose times and areas that are quiet
⚠️ Stay close to home so you do not have to use a toilet that is not your own
⚠️ Wash your hands for at least 20 seconds as soon as you get home
www.mygov.scot/coronavirus-if-you-need-to-stay-at-home/
As ever, get in touch with us at the SPVU if you are looking for further clarification for your particular situation.
Coronavirus - if you need to stay at home - mygov.scot
www.mygov.scot
What support you can get if you need to stay at home because of coronavirus.Some appreciation for all those carers 👏👏👏
www.facebook.com/184792054937541/posts/2968198633263522/
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.
Research
The Scottish Pulmonary Vascular Unit runs programmes in clinical and basic science research
PHA UK FACEBOOK FEED
This message is only visible to admins.
Backup cache in use.
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
------
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
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)