> Would you like to join our Research Forum?

There’s never been a more important time to lend your voice and experiences to PH research. As well as conducting our own studies to help people affected by PH live better lives, we are regularly approached by researchers from healthcare and academia, who recognise the importance of the patient voice.

We’re looking for a mix of people affected by PH - patients, and their loved ones too - who would be willing to help with these studies when possible. You will be able to assist with most of these research opportunities from the comfort of your own home. They often involve completing surveys or questionnaires, and sometimes they may involve online or telephone chats, or focus groups.

Thank you for adding your voices

We’d like to say a huge thank you to everyone who completed the survey enclosed with the last issue of this magazine. The research project aims to understand just what it means to live with PH in the UK today, and the findings will underpin our work for the next five years.

Whether you posted the survey back to us or filled it out online, please know you’ve played an important part in shaping our support services and adding weight to our campaigns.

We’ve received over 600 responses, and we are currently analysing the data. We’ll share the results with you soon.

Occasionally, you may receive an invitation to be involved in a different type of study, but it is unlikely you will be asked to take part in a clinical trial in this way.

If you join our Research Forum, we will send you opportunities via email, as and when they arise. There is never any obligation to take part in any of the studies we tell you about; if it’s not for you, or not a good time, simply ignore the email and look out for the next!

Join now at bit.ly/ResearchForum_PHAUK or scan the QR code above.

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Recommended reading

PHA UK designer John Smith recommends The Reluctant Carer: Dispatches from the Edge of Life…

“Written anonymously in first-person diary form, this is a true story of what it really means to be a carer. Focusing on the author’s experiences of looking after elderly parents, it’s both humorous and sad – and very relatable. Pick this book up if you need a reminder that you’re not on your own.”

The Reluctant Carer is available now from Amazon and other retailers.

Read something you want to recommend to other PHA UK members? Email media@phauk.org

Missed an issue of Emphasis? You’ll find all our back editions online! Head to www.phauk.org where you’ll find every issue of this magazine that’s ever been published.

IN YOUR own words…

“When diagnosed I was afraid and alone in hospital in the pandemic. I didn’t understand what PH was. A doctor gave me the PHA UK website details and the best thing I could have done was access the site. I joined as a new member and received an information pack and booklets to my home address. The support and advice was amazing. I always describe the PHA UK as an invisible arm around me.”

Julie Bestwick, PHA UK member