Emphasis Exchange

Prestigious recognition for EmPHAsis-10

PHA UK Chair Dr Iain Armstrong was ‘highly commended’ in his category of a prestigious national nursing awards in October.

He was recognised for his work in creating the clinical tool EmPHAsis-10 in the ‘Innovations in your Specialty’ category of the Royal College of Nursing (RCN) Nursing Awards.

The virtual ceremony was hosted by TV favourite Kate Garraway, and she shared details of EmPHAsis-10, the quality-of-life measure used in PH, with a national audience.

Designed as a simple questionnaire 11 years ago, it is now used around the world to help doctors and nurses understand how people affected by pulmonary hypertension are responding to treatment.

As well as co-founding the PHA UK, Iain also works as a Nurse Consultant at the specialist PH centre within the Royal Hallamshire Hospital in Sheffield. Chris Morley, Chief Nurse at Sheffield Teaching Hospitals NHS Foundation Trust, said: “This commendation is richly deserved by Iain, and is a fantastic recognition of his work and his dedication to improving the quality of life for people with pulmonary hypertension.”

You’re not alone this Christmas

The Silver Line is a free confidential helpline dedicated to supporting older people experiencing loneliness and feelings of isolation. The helpline, which is available 24/7 and is open all year around, provides information, friendship and advice to anyone in need - particularly those over 70. It may be especially helpful for people during these dark winter months and at Christmas, which can be a hard time of year if you feel lonely. Call any time of the day or night, for free, on 0800 4 70 80 90

Your Right to Rehab: An update on our campaign

We’d like to say a big thank you to the hundreds of people who have pledged their support for our campaign to give everyone with PH access to specialist rehabilitation. At the time of going to print, we have received almost 400 support pledges, which proves just how much this means to you too. Having gathered this groundswell of support, we will now make contact with commissioners and roll out the next phase of our campaign in the New Year. Watch this space!

Summit success for Cindy

In the last issue of Emphasis, we brought you news of PHA UK member Cindy Regalado’s plans to hike 1001 metres up a peak in Snowdonia – and we’re delighted to say she did it!

Cindy, who was diagnosed with PH in 2007, reached the summit of Glyder Fawr as part of a personal challenge to test her limits and raise awareness of her condition. After checking with her specialist team, and following months of careful training, she took on the trek as a tribute to those who have supported her over the years.

*It is important that you speak to your PH specialist before taking on a physical challenge.

Last-minute stocking fillers

If you’re looking for meaningful gifts for people you love this Christmas, check out the merchandise in our online shop. Choose from insulated drinks bottles, pin badges, dog bandanas, multiwraps and more – but hurry, you’ll need to order now for delivery before the big day. Visit www.phauk.org and enjoy free P&P on all orders. We recommend that you contact us before ordering to confirm delivery is possible before Christmas. Email office@phauk.org or call 01709 761450.

Making your voices heard

We dedicated the first week of November to putting the spotlight on pulmonary hypertension - and your support was incredible. With the theme this year of #HearOurVoices, together we made people sit up and listen. Read on for a round-up of PH Awareness Week 2021…

#21in21 Challenge

Terrific #21in21 challenges

From baking to biking, your #21in21 challenges helped raised thousands of pounds alongside awareness. We’re grateful to every single person that got nvolved; these are just a few examples of your imaginative fundraising: Little PHighter Folakemi Ariwayo was joined by her sister to bake 21 cakes, which they sold to family and friends. Katie Eaton, who has PH, cycled 21km with her husband and son to raise over £1000.

Pupils from Harleston Primary School in Norfolk were sponsored to complete 21 jobs at home during PH Week, supporting classmate Connie, who has PH. Ambitious Abbie Hampshire and her brothers took on 21 different challenges during PH Week, with activities ranging from 21 minutes of kitchen disco dancing, to listing 21 things that made them happy, and painting a picture with 21 fireworks in it. The siblings also made 21 cards for care home residents, lip synced to Disney songs for 21 minutes, and told 21 jokes - plus much more besides!

Led by Clare Beeton, the St Neots Nordic Walking Group completed a soggy Saturday walk to raise £155. Scott & Melanie Hatton each took on a challenge in support of their daughter Daisy. Scott cycled 21km each day of PH Week, and Melanie walked 2.1km a day with Daisy and her brother Jaxon. The parents raised over £4,000 and documented their challenges daily on Facebook, raising an incredible amount of awareness too.

Lebo Mutsvairo used her Instagram account to generate £142 in sponsorship for walking 21 miles over 21 days. Despite struggling to walk 1000 steps a day, determined Lea Atkinson completed 2021 steps around his local park, accompanied by family carrying his oxygen. Mark Pincock chose a scenic route for his challenge, cycling 21km on each day of PH Week in the Spanish Alicante mountains.

Express yourself

Getting creative

We loved receiving your ‘Express Yourself’ submissions, including this cute needle-felting by Jane Barker-Benfield, and Tamsin Hutchings’ beautiful portrait of her pet bird.

Pausing for PH

To mark the start of PH Awareness Week, we came together to observe a 60-second silence to think about those fighting the condition, those we miss, those who inspire us, or those we are grateful to. The pause was led live on Facebook, and people tuned in from as far afield as Australia. We played a special silent film during the reflection, made up of your photos of those you would be thinking about.

Making headlines

Your stories appeared in newspapers up and down the UK, helping thousands of people learn more about pulmonary hypertension. PH also reached the airwaves, with multiple radio interviews and even BBC television coverage. It can be a big decision to share your personal experiences in this way, but it really does have a massive impact. We are incredibly grateful to those who trusted us to tell their stories, and to those who contacted their local media themselves.

Making PH visible on film

A series of special short films brought your stories to life and helped people understand the reality of PH as invisible illness. As well as filming face-to-face, we also conducted interviews via Zoom - and the result was ten videos that generated hundreds of views, and that can be used to raise awareness for years to come. A special thank you goes to everyone who spoke to us on camera, allowed us into their homes, and took the time to talk to us online. You can view all of our PH Awareness Week videos on our YouTube channel. As always, the support via social media was amazing too, with hundreds of people sharing experiences, photos and facts, and spreading our content far and wide. It was fantastic to see so many of you making use of the photo card included in the last issue of this magazine - turn to the back cover and see if you can spot yourself!

We’ve continued the #HearOurVoices theme throughout this issue of Emphasis, with some of the stories you shared during PH Week, and even more real experiences. Look out for the orange badge!