Pulmonary Hypertension Association UK

☕💬 This year sees the launch of our new informal get-togethers to help people affected by PH meet others in a welcoming and relaxed environment. 'Tea & Talk' gatherings will take place every few months at our office in Sheffield, with bookings now open for the first one on 11th April. More information: www.phauk.org/T&T ------ We'll also be holding structured, formal events in Glasgow and Birmingham, as part of our mission to help our PH community make connections and reduce the isolation that can often come with rare diseases. Watch this space!

We were shocked and dismayed to see comments from the Health Secretary Wes Streeting last week, suggesting that organisations like ours should stop standing up for patients by lobbying government. Today we have sent an open letter to contest his comments and call for patient originations to be recognised as partners rather than a nuisance. You can read it at www.phauk.org/letter We will continue to stand up for our community and be a voice for people affected by PH, regardless of his stance. ------ (Text on image reads: "Constructive collaboration should not mean unquestioning compliance")

Our specialist PH centres here in the UK are the envy of the world, and the latest results from the National Audit of Pulmonary Hypertension confirm their high standards of care. You can read our report into the key findings of the NHS quality measure here: www.phauk.org/NAPH ------ The PHA UK plays a key role in the audit. We funded its first year in 2009, and every year we bring our community the key findings in a clear and accessible way. We continue to provide input into the development of the audit, influencing it to be of maximum benefit to patients. Over the next few months, in collaboration with NHS England and the clinical services, we will be engaging in significant work to explore any untapped potential within the audit, and how it may be enhanced or made even more meaningful. This work will include consulting with PHA UK members as key stakeholders.

𝐂𝐎𝐌𝐌𝐄𝐍𝐓: "𝐍𝐮𝐫𝐬𝐞 𝐭𝐫𝐚𝐢𝐧𝐢𝐧𝐠 𝐬𝐜𝐡𝐨𝐨𝐥 𝐜𝐥𝐨𝐬𝐮𝐫𝐞 𝐢𝐬 𝐚 𝐝𝐞𝐯𝐚𝐬𝐭𝐚𝐭𝐢𝐧𝐠 𝐚𝐧𝐝 𝐝𝐞𝐞𝐩𝐥𝐲 𝐝𝐢𝐬𝐚𝐩𝐩𝐨𝐢𝐧𝐭𝐢𝐧𝐠 𝐝𝐞𝐜𝐢𝐬𝐢𝐨𝐧 𝐭𝐡𝐚𝐭 𝐬𝐡𝐨𝐮𝐥𝐝 𝐛𝐞 𝐜𝐡𝐚𝐥𝐥𝐞𝐧𝐠𝐞𝐝" Last week, Cardiff University announced it will close its School of Nursing due to a funding shortfall. This is a message from Dr Iain Armstrong, a Consultant Nurse in PH and Chair of the PHA UK: “I was shocked and deeply disappointed to learn that a high-performing nursing school with over 1000 students will shut – at a time when we are desperate for more nurses right across the UK. With 2,000 current nursing vacancies across Wales this feels like a crazy decision that will damage an already fragile and depleted workforce, and it simply must not set a precedent for other universities to do the same. I have been a nurse for 40 years, with 30 of them spent in pulmonary hypertension, and this profession is the backbone of the NHS. It is absolutely vital that we invest in training and recruiting more people into what is a hugely rewarding career, yet instead, we see the imminent closure of a training facility with a long and successful record. I have signed the petition to urge Cardiff University to reconsider its devastating decision and I implore everyone in our PH community who has been touched by nursing care to do the same.” ·      You can sign the petition at https://lnkd.in/exDdmFmi

Offering support in different ways to suit different people is important. That's why we launched our e-support service last year, formalising the help and advice we can provide via email, for those who don't feel comfortable discussing things on the phone. We’re here to help whether it’s a one-off enquiry, if someone needs to get something off their chest (at any time of day or night!), or if ongoing e-mails to support through a difficult time is required. 👉support@phauk.org

🎬 The next steps for sotatercept... We're committed to keeping our patient community informed about drug development and commissioning, and what to expect from the processes involved. Following the MHRA approval of sotatercept at the end of December, PHA UK Chair Dr Iain Armstrong explains in this video what happens now - and why we need to be prepared for challenges when it comes to the drug being made available 👇 https://lnkd.in/eYrMdBiP

Great to see this letter published in the ERJ Open - an update on our collaborative self-help programme for people living with anxiety and #pulmonaryhypertension:

Our free supportive call service makes a big difference to people struggling with PH and their emotional wellbeing. It's not counselling, but it's a kind and knowledgeable listening ear for when it's really needed. We've now made it even more accessible by introducing an online booking service: https://lnkd.in/eKc5Y2Ze Please share this with anyone who you think might benefit.

“We welcome the news that GPs will be able to make direct referrals for diagnostic tests for those experiencing breathlessness, but in this disease area, being referred for the RIGHT tests is what will make the difference." At the beginning of this week, the UK government announced plans to give GPs more authority by enabling them to make direct referrals for diagnostic tests related to a range of complaints including breathlessness – a key symptom of #PulmonaryHypertension. Hear from our Chair on this at www.phauk.org/comment

Corporate supporter spotlight: International materials technology business Lucideon has made generous donations to our organisation, as part of a charity partnership with its director’s car club. Noor Ali (pictured) is the Chair of Classic Marques Sports Car Club, who have supported us through their last three seasons in memory of someone close to the team. In this spotlight, he tells us more about his organisation and why you may be closer to their products than you think: www.phauk.org/Lucideon ------ If you know a business who would like to support our charity, or your own business or employer might be interested in talking about a partnership, please email fundraising@phauk.org.