Emphasis Magazine ISSUE1/2025

ISSUE ONE / 2025

www.phauk.org

“Focus on what you can do, not what you can’ t” Cover star Josh on how he’s adapting to life on intravenous medication

DATING WITH

Meet the members

PULMONARY HYPERTENSION

Get to know some of the PHA UK family

Real experiences & insights PLUS...

Expert advice, research news, and more!

Also inside

This magazine, for members of the PHA UK, is printed on paper from sustainably managed sources

Will you be entering our new ph otogr competition aphy this spring?

Connect online with others affected by PH

Our private Facebook groups are a valuable source of support and advice from people who truly understand. They are safe spaces to talk to other people with lived experiences of pulmonary hypertension.

You need to have a Facebook profile in order to join these groups. Sign up at www.facebook.com. It’s free and easy!

We have dedicated groups for patients, carers, and loved ones too.

Click here to access the groups, or visit phauk.org/SafeSpaces

Hello Welcome to our first magazine of 2025!

It's

a very special year for our charity as we mark 25 years of supporting people with pulmonary hypertension.

I’m personally very proud of what we’ve achieved since the year 2000, but none of it would have been possible without our members. We’re a unique and very special community and it’s been a true team effort throughout. I feel honoured to have been a part of it.

I hope you can join us in marking our very special milestone this year – you can find out how on page 48.

As always, this edition of emPHAsis brings you insightful and inspiring stories from people living with PH, and our interview with cover star Josh on page 11 shows the disease does not discriminate based on age. As a young father Josh has had to adapt quickly to life with a Hickman line but his positive outlook is making a difference, and he’s hoping that by sharing his story, he’ll be helping others too.

It's our members, like Josh, who make

the PHA UK what it is today – and our new series aims to introduce just some of them to our wider community. This issue, meet Salina (page 10), Steve (page 35), Patrick (page 47) and Adele (page 60). We’ll bring you further Q&As in future issues, and you’ll find more on our website too.

With a focus on helping people make connections in 2025, we’re really excited to be hosting two new ‘Together’ events, plus a series of informal gatherings, throughout the year. We hope to see as many of you as possible in Birmingham, Glasgow or Sheffield, and you’ll find details of them all in this issue.

In the meantime, enjoy the magic of spring!

25 YEARS PHA UK

AS ALWAYS, THIS EDITION BRINGS YOU INSIGHTFUL AND INSPIRING STORIES FROM PEOPLE LIVING WITH PH

Iain Armstrong Chair of the PHA UK media@phauk.org

EMPHASIS ISSUE 1 / 2025 _PAGE 3

WHAT’S INSIDE? ISSUE ONE 2025

CO M P E

11 Navigating life with a line

How young father Josh is coping with IV medication

TITI O N

08 GET SNAP HAPPY THIS SPRING

Celebrate the natural world by entering our photography competition

20

“I feel extremely proud of what I’ve achieved with my degree”

When it came to choosing a focus for her university studies, graduate Bisma Hussain was influenced by her own experiences of PH and mental health

23

DATING WITH PULMONARY HYPERTENSION

An honest and inspiring feature for singles

Emphasis magazine is produced by the PHA UK. This magazine is intended only to provide information and not medical advice on individual health matters. The PHA UK will not be responsible for readers’ actions taken as a result of their interpretation of this magazine. We encourage readers to always discuss their health with their doctors and medical team. Registered Charity Number: 1120756. © PHA UK.

In their 10 Meet Salina

PHA UK member Salina on living well with PH

30 Kids Corner

Coco’s column and Amelia’s favourite things

16

Self-image and identity with PH

52

Hope and unity: The future of PH research

Advice from psychotherapist Sophie, based on her own experiences of the disease

Dr John Wort reflects on a truly unique event

60 Meet Adele

What makes PHA UK member Adele smile…

47 Meet Patrick

A quick Q&A with PHA UK member Patrick Long

REGULAR FEATURES

6

Upfront

18

They did it!

News, letters, musings and more Our new-look fundraising round-up

38 Raya’s column

This time, Raya Mynot looks back on learning to drive with PH

43 Food for thought

Answering your questions about creatine

THE BEST OF THE REST

48 A quarter of a century of support Celebrating 25 years of the PHA UK

41 Celebrating Christine and her kindness Elaine Haslett on her daughter’s special legacy

49 Audit confirms high quality care

The latest National Audit of Pulmonary Hypertension shows continuing strong performance by the UK’s specialist centres

54 Adaptive fashion at accessible prices

The new collaboration to help us all be stylish on a budget

56 Healthcare on the high street

Are you making the most of your local pharmacy?

Get in touch: PHA UK Resource Centre, Unit 1, Newton Business Centre, Newton Chambers Road, Thorncliffe Park, Chapeltown, Sheffield, S35 2PH hello@phauk.org 0300 373 5367 @PULHAUK @PHA_UK @pha_uk_insta @pha_uk No part of this magazine may be reproduced without the prior permission of the PHA UK.

UPFRONT News, musings and more...

Relaxed gatherings to foster friendships and unity Small and friendly gatherings are planned at the PHA UK office space in Sheffield at key points during 2025, helping people make connections in a relaxed and welcoming environment.

Our Tea & Talk events are designed to be informal get-togethers, with a focus on getting to know each other and enjoying brews, bakes, and plenty of chat.

They are open to anyone affected by PH from anywhere in the UK and help towards travel costs is available.

Spaces for our first event on 11th April are now full but look out for more dates being announced soon!

You’ll find details at phauk.org/T&T

Reflections of a tumultuous time On 9th March, the UK came together for the first official COVID-19 Day of Reflection, remembering both those who lost their lives and the efforts of others during the pandemic.

The pulmonary hypertension community was severely affected during this unprecedented time, and we must never forget the sacrifices made or experiences endured.

In 2022, we spoke over 30 PHA UK members about their experiences of the pandemic and compiled their stories into an online time capsule which can be found at mypandemic.co.uk. Please take some time to have a look if you can.

We will never forget how our community came together during this time, and we are grateful to every single person who played their part.

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tea& talk

The next steps for sotatercept The new PAH treatment sotatercept has now been approved for us in the UK by the Medicines and Healthcare products Regulatory Agency (MHRA) – but it’s important to remember this does not mean it can now be prescribed.

The therapy is yet to be commissioned, and the next stage will involve the National Institute for Clinical Excellence (NICE) putting it through a process to decide whether the benefit of the drug is worth the cost to the NHS. As a patient organisation, the PHA UK will be very much involved in this process – something we have done for different drugs over the last couple of decades. We can’t present clinical data, but we can present the patient narrative, and the stories that will help commissioners understand what it’s like to be impacted by PAH. It is this involvement that we hope will persuade them that the benefits will be worth the cost.

Sotatercept is a totally new type of drug for pulmonary arterial hypertension. There are already a number of existing drugs that are known as ‘vasodilators’ – which work by opening up some of the arteries that have narrowed or closed down. But these drugs are treating the symptoms of PH, rather than what’s causing the disease.

Rather than just opening up vessels, sotatercept works more directly on the underlying ‘problem proteins’ that are causing the disease in the first place. It’s the first time a PAH drug is getting to the root cause of the problem, rather than treating the consequences of it. It is designed to be taken alongside other therapies, via an injection administered every few weeks.

We do not expect that a commissioning decision will be made before the end of 2025.

These processes take a long time, and we must be prepared for a fight for access.

We’ll continue to keep you updated and informed of opportunities to get involved…

QUOTE OF TH E IS

SU E

live “I will c ontinue etroy day my best life ev hope and never lose cure that a miracle ed.” will be develop ber Meet PHA UK mem Adele on page 60.

Together GLASGOW 2025

Bringing patients together in Scotland We’re excited to be teaming up with the Scottish Pulmonary Vascular Unit at the Golden Jubilee Hospital to host our next Together event – this time in Glasgow.

Following the success of Together Sheffield in 2023, held in conjunction with the Sheffield Pulmonary Vascular Disease Unit, we’ll be heading north of the border to co-host a special day on Saturday 3rd May. Together Glasgow is for anyone cared for by the Golden Jubilee team, and it’s a chance to meet other patients and their loved ones, hear expert talks, and enjoy a day of learning and connecting.

Find out more or book your place by clicking here.

EMPHASIS ISSUE 1 / 2025 _PAGE 7

N O I T I T E P M CO

y p p a h p a n s Get

!

G n i r p s this

Make the most of better weather and capture the beauty of nature on camera in our new competition.

This seasonal initiative invites to you to enter a photograph with the chance of seeing it on the front cover of this magazine. Plus, you could win a Love2shop voucher to spend on a treat of your choice!

You don’t need a fancy camera to take part in this competition - mobile phone photos are very welcome - but we do ask that the image is your own.

Need some inspiration? Here are some ideas of what you could photograph: • Flowers and plants • Animals or pets • Scenes in your garden • Lakes, rivers, water features or streams • Birds or insects • Landscapes or seascapes …the possibilities are endless!

PAGE 8_ EMPHASIS ISSUE 1 / 2025

IZE FI R ST Pe2Rshop

£50 Lov emable rede voucher, 50 retailers r with ove r photo y , Plus ou on the d publishe er of front cov is! em P H A s

RU N U P PRN E R IZE £ 20

Love2 vouch shop er

There will also be an additional special prize of a £20 Love2shop voucher for the best photo taken by a child under 13.

PLUS! The top 10 photos will also be published on our website and as part of a special feature in the next issue of emPHAsis.

The winners will be decided by PHA UK Chair Dr Iain Armstrong, emPHAsis designer John Smith, and professional photographer Jules Nelson.

Get outside, capture the beauty of the natural world, and make the most of the great British springtime. Good luck!

HOW TO ENTER Submit your photo online by clicking below or visiting phauk.org/competition.

There is an entry fee of £5 per photo, which is a charitable donation to support us to continue our work. You can enter as many images as you like!

The closing date for entries is 30/5/25 and the winner will be announced in June.

H AV E FU A N D C A P TUN SO M ETH R E TH AT W ILL IN G BR JOY TO YO IN G FE LL OW P H U R A MEMBERS UK

EMPHASIS ISSUE 1 / 2025 _PAGE 9

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Hi, Salina! What’s the biggest thing you’ve learned about PH, or about yourself, since being diagnosed?

I’m a lot stronger than I thought I was and can deal with a lot more than I give myself credit for.

Where do you receive your treatment?

The Royal Brompton Hospital in London. My PH team have been incredible and have become more like friends and family.

What’s the best thing about being a PHA UK member?

We’re a very special and unique community.

What advice would you give someone newly diagnosed with PH? The most important thing I would say is create a great relationship with your PH team as they will be your saviours.

And finally, what makes you smile?

Seeing my family and friends happy

😊

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“I’ve learned I’m not as fragile as I thought I was before”

Navigating life with Young father Josh Howey lives in Liverpool with pulmonary arterial hypertension and is learning to adapt to IV medication. He spoke to us just six months after being diagnosed, to help others who might be getting to grips with the disease.

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EMPHASIS EMPHASIS ISSUE ISSUE 1 / 12025 / 2024 _PAGE _PAGE 11 11

Josh with daughter Niamh

It all started

with shortness of breath, and I was getting more tired doing ‘normal’ things. As the symptoms got worse, I couldn’t take part in the sports I love.

My job as a construction worker became difficult and I started to collapse, which is when I went to A&E. I never saw a GP about things prior to that.

I ended up discharging myself twice from A&E because I’m scared of needles, but I got over that fear because I knew I needed tests.

When I got diagnosed with PH, I was relieved because I wanted to know what it was. But it was still a shock. I never thought in a million years that a doctor would say that my heart’s swollen.

I knew there was something that wasn’t right, but I didn't think it would ever be this. I didn’t think it was something serious at all, to be honest.

I’d never heard of PH before and then when I got diagnosed, I found it on my

PAGE 12_ EMPHASIS ISSUE 1 / 2025

nan’s death certificate and discovered her brother had it too. I’ve had the testing done and it’s come back that mine’s genetic, so it’s been passed through the generations.

I’ve got a 12-year-old daughter, and a brother, so I do worry they are going to get it. They are both going to be tested for the genes – I’d rather it was caught early so they don’t have to go through what I have.

I’ve been on IV therapy for two months now. At first, I didn’t want it; I thought I was strong enough just to stick with the tablets. But my specialist centre recommended I change to it, and it’s not been as bad as I thought it would be.

I was a bit panicky at first about having a cable coming out of my chest, having to keep everything sterile, and going through all the steps to make up the medication. I was scared in case I pulled the line, and worried that if something went wrong, I’m two-and-a-half hours away from my specialist centre, and I can no longer drive.

But now I’m used to it all and making up the medication has just become part of my daily routine. It’s frustrating sometimes, don't get me wrong, but I just get on with it. It’s become ‘normal’.

Although going onto the IV was recommended by my PH team, I ultimately came to the decision myself. The symptoms weren’t reducing on the tablets, and it was winding me up. I was getting really frustrated with family members and friends. I wanted to feel better.

I stayed at my specialist centre (the Sheffield Pulmonary Vascular Disease Unit) while I had the training, and I picked things up pretty fast. The specialist nurses training me were really good and it’s not like being taught stuff at school. I get on so well with everyone there, and they got me through.

When I went back home after the training, I’ll be honest, I was a bit scared because it’s so far away from the hospital (I live in Liverpool and the centre is in Sheffield). I didn’t have any

With brother Jay

of the nurses around me. But after a few days, I became more confident with it all.

I change the IV medication once a day, as soon as I wake up. It’s a routine that works for me, but it’s individual for everyone.

I have more energy since going on to the IV and I definitely have less symptoms. It feels like everything has opened up; I don’t get as breathless or fatigued.

I still can’t do what I was able to before getting ill, but it does help a lot. It keeps things at bay.

Obviously, my daughter can see that I’ve got a line, and I’ve just told her that it’s giving me medication that makes me feel better. She's just a kid so I don't want to scare her.

I don’t really have to explain it to other people much as to be honest with you, I don’t really go out. I don’t like meeting new people. I’ve got my circle, and I just stick with them. If someone does ask me about the line, or about the illness, I deflect it or make a joke out of it as I don’t like opening up to people.

It’s different when I’m talking to other patients at hospital appointments. I don’t mind speaking to people about the condition who have it too, especially if they have had the IV line suggested to them as well.

I hope that by sharing my own experiences with the PHA UK like this, it will help someone in the same boat who might be struggling.

“Although going onto the IV was recommended by my PH team, I ultimately came to the decision myself”

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EMPHASIS ISSUE 1 / 2025 _PAGE 13

With friend Fethi

“I carry the pump in a little ‘man bag’ and no-one knows what’s inside it” It is hard at first because it’s not a ‘normal thing’ having a cable out of your chest, but you do get used to it.

You can’t even notice it when you’ve got clothes on; I just tuck the cable into the bag, put it underneath my top, and it’s gone. I carry the pump in a little ‘man bag’ and no-one knows what’s inside it.

Showering with the pump is a bit of a task as you’ve got to find something to hook the bag onto, but I tend to put it in the sink. There are different methods in different bathrooms, so if you go to a hotel for example, you’ve got to work out the best place for it. It is a bit tricky, but I like the challenge, so it doesn't bother me.

I can’t pretend that having PH hasn’t changed my life. I can no longer do certain things that I like, such as cage fighting, snowboarding, and playing football. But if you focus on the negatives, it'll get to you. I look for the positives. I'm still with my family. I’m still doing certain things.

You just get on with it.

The way I have fun now is playing games on the PlayStation,

Josh is now ing confident mak n tio ca ei m s up hi

PAGE 14_ EMPHASIS ISSUE 1 / 2025

watching TV, and spending time with my little girl. Most of the time it’s just about sitting down and relaxing with the family.

It’s good to spend time with people and that’s a positive that’s come from getting ill – it’s brought me closer to my family, as to be honest, I didn’t really spend much time with them before. I’d always be out with my mates or something, as I couldn’t sit still.

The other positive is that I’ve learned I’m not as fragile as I thought I was before, in terms of needles and going to hospitals. And without the PH, I wouldn’t have met the team at my specialist centre, who have helped me so much.

If you’re struggling with symptoms, or you've just been diagnosed with PH, my advice would be to just try your best to focus on what you can do, not what you can’t.

Click here to watch our short film with Josh and hear him describe his journey with PH and IV therapy.

LET'S SHOW THAT WE'RE Have you seen our new clothing range?

Thanks to PHA UK members Anna, Clare and Jo for showing off their new gear!

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£30 s r e ump £15 j d e Hoodn t-shirts irts £20 Cottoewear t-sh ing le siz Activ fema le and a M s ✓ X X XL colourway o t p ✓U two f o e c oi ✓ Ch

Click to see the range and order now www.phauk.org/merchandise

Psychotherapist Sophie Papageorgis lives with pulmonary hypertension and is passionate about helping others with the condition. In her latest column for emPHAsis, she explores why we worry so much about how others perceive us – and how we can change the way we see ourselves.

Self-image and identity with PH The other day I was scrolling through the PHA UK Facebook group, and I saw a post from someone worrying about what people would think if they were to use a mobility scooter...

I noticed how much sadness filled me in that moment. To need a mobility scooter is a big deal. Most people take walking for granted; from about the age of one, they learn it, everyone cheers, and on they go for the majority of their lives. For those of us with chronic illnesses like PH, it can be a bit different. We face things daily that most people won’t have to consider, which is good because we wouldn’t wish it on them!

The fact that we must make these considerations to live our lives, the

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fact that we can’t always go for walks whenever we fancy, the fact we have to consider our energy levels… What is it that makes us then worry about what others might think?

I remember going to a zoo years ago and asking for a mobility scooter, which was met with laughter by the person on the desk. I then produced my disabled badge, and they looked absolutely mortified (though not as mortified as I felt asking for the help!)

I have to say, my friend and I had the

time of our lives zooming round that zoo on the mobility scooter. But as I type this, 12 years later, the main memory I have is the reaction of that staff member.

When we live with PH, we live with something which is ever-present.

Physically, it makes us breathless, gives us headaches, fatigue, and low oxygen levels – to name just a few symptoms.

It changes the colour of our lips, nails, and skin. We might need IV therapy and have to adjust to life with a Hickman line. We might need to use wheelchairs and mobility scooters, avoid events with walking, avoid stairs, standing for long periods, and hot/cold weather – all these things become daily considerations.

Emotionally, we might get anxious, scared, depressed or worried, or withdraw yet feel lonely and desperate

Maybe life isn’t about avoiding the bruises. Maybe it’s about collecting the scars to prove that we showed up for it Hanna Brencher, author

for company. We may be unsure how to cope. And if you’re anything like me, you are probably doing all you can to make sure that everyone around you doesn’t get impacted by all this going on inside!

But why do we do this? We live with limitations, and I know if my friends did, I would do anything I could to make things easier for them. I would never want them to have to hide things from me.

In my work as a psychotherapist, my clients share so many brave and difficult things that often come with so much shame, and I find myself wondering what that shame is about. Horrible things that they’ve dealt with, that are out of their control, that they had to battle through. Things most people wouldn’t understand or need to manage.

I know that what I see in my client work can be a bit of everyday life with PH – trying to cope with something so out of our control, that impacts our self-esteem and self-identity so much.

But we can’t control that. Life is precious, so why do we want to

waste any time worrying what others think about our conditions when we’re the ones living with them?!

The strongest people are the ones who eperience hardship, and still go on. The people who might have judgements cast their way, but from people who don’t understand the daily battle.

This might seem like an odd quote in a PH article, but as the famous basketball coach John Wooden said: “Never let the things you cannot do prevent you from doing the things you can”.

Ok, we may not be able to run marathons or walk very far, and we may curse the person who invented the staircase – but there are a whole lot of amazing things that each and every one of us can do! And if we were all the same, life would be very boring.

It’s hard not to let our chronic illness identify us but I truly believe it is just a part of us. For me, it’s a part that I often rage against, wish I didn’t have, get grumpy with, love, appreciate, and know it has shaped who I am, and given me the empathy I need to do my job.

The beauty of being human is that we can have all these different emotions and feelings, which

are all valid and okay. PH is not who we are. It’s part of us, and we may all feel differently towards it, and it might change day-to-day, moment-by-moment. Some of us might work full-time, some part-time, some not at all. Some of us may live with partners, live alone, with parents, with children, with carers.

Some of us may be able to do moderate exercise, some lots, some not at all. Some of us may take tablets, some need injections, some may be on IV therapy and have a Hickman Line.

Some might have anxiety, some may be in denial, some may feel down, some may have mood swings, and some may be happy.

All of these are normal! Because we, like the rest of the world, are all individual and all human. From what I’ve seen, the one thing all phighters have in common is the strength and courage to live with PH. And that, by far, is how I like to identify; strong and courageous.

As the author Hannah Brencher says: “Maybe life isn’t about avoiding the bruises. Maybe it’s about collecting the scars to prove that we showed up for it”.

Our bodies are amazing. When you look in the mirror, try to focus on all that yours has been through, all that it deals with, and how impressive it really is with all that’s thrown at it.

See how it feels to offer yourself a bit of compassion.

.

Visit phauk.org/SophiesJourney to read Sophie’s personal experiences of PH EMPHASIS ISSUE 1 / 2025 _PAGE 17

#TeamPH

y e h T ! t i did

ing Celebrat e of just som rful de our won ers & fundrais rs s u p p o r te

Miles and memories for Jill

Dancing for donations in Hull

Jill Branch is refusing to let her age or health conditions hold her back as she forges on with her fundraising. The 69-year-old completed a 10km sponsored run in February (pictured) and she has two more challenges planned – another 10km event in March, and her first ever half marathon just before she turns 70 in July.

Student Lucy Venables joined other members of the Hull University Dance Society to raise money in support of her mum Jayne, who lives with PH.

Jill lives with systemic scleroderma and an autoimmune condition, and she's determined to raise money to support people with PH after being investigated for the disease herself.

What an inspiration!

The group perform two shows a year and they chose the PHA UK to benefit from their Christmas performance, raising awareness amongst the audience too.

Lucy - second from right on the front row - with her dance society

Lunching to remember A memorial lunch organised by Tony Darbyshire was held in Cheshire in March. Tony’s wife Suzanne passed away in April last year and the couple (pictured) had previously held a lunch occasion in aid of our charity in 2023.

We are grateful for Tony’s kindness in organising another event for us, as a special tribute to his wife.

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We love to celebrate your fundraising adventures!

Send your pics to fundraising@phauk.org

They’re doing it…

Nicki’s knitting tops £3k total PHA UK member Nicki Ross has been knitting and selling cute little characters for the last couple of years, and her donations recently tipped over a total of almost £3,100.

Nicki, who was diagnosed with PH in 2022, sells her creations to friends and family and has stands at local craft fairs. They also retail from a local café, where they are on proud display (pictured bottom).

Her fantastic fundraising is an example of how small amounts add up over time, and we are so grateful for this dedicated ongoing support of our charity.

You can browse Nicki’s online shop and order your own characters at nickis-knitting.webador.co.uk

David Whittington and his wife Thelma are busy planning a very special trip this spring. The pair will drive their much-loved classic car the length of the country from the tip of Scotland to the bottom edge of England, collecting sponsorship for both the PHA UK and the Royal Papworth Hospital Charity. David underwent pulmonary endarterectomy surgery for his chronic thromboembolic pulmonary hypertension (CTEPH) during the COVID-19 pandemic, and the trip will be a celebration of the support and care he received from our organisation and Royal Papworth Hospital. The challenge is extra special as David is 81, Thelma is 79, and the car is 57 – giving a combined age for the trio of 217! We’ll bring you more on the expedition in the next issue of this magazine…

Super support planned from specialist centres People working in PH get behind us too! Here are the sponsored events that specialist centre staff have planned over the next few months:

> Nurses John Harrington and Sammy Abraham, and Consultant Thanos Charalampopoulos, all of the Sheffield Pulmonary Vascular Disease Unit, will be lacing up for the Sheffield Half Marathon at the end of March.

> Nurse Javier Jimenez of the Royal Free Hospital is joining PHA UK Chair Dr Iain Armstrong for London’s Swim Serpentine event in September.

Feeling inspired?

Click to find out more about fundraising for our charity.

> A team from the Golden Jubilee Hospital’s

PH service will tackle the Great Scottish Run in Glasgow in October.

We’ll keep you updated on all of these fantastic efforts!

EMPHASIS ISSUE 1 / 2025 _PAGE 19

When it came to choosing a focus for her university studies, graduate Bisma Hussain was influenced by her own experiences of PH and mental health.

d u o r p y l e m “ I feel extre achieved e v I ’ t a h w f o e ” e r g e d y m h wit

T

he 34-year-old from Scunthorpe has recently completed a counselling degree with the University of Hull, and PHA UK members helped assist her final year dissertation.

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Titled ‘A thematic analysis for patients diagnosed with chronic pulmonary hypertension. Is their mental health assessed and supported?’ the study involved interviewing members of our charity to discover how easy it is to get mental health support as a PH patient – and how effective it is too.

“When I got diagnosed, I felt like my whole world crumbled”, Bisma told us.

“I had been married just a year, and was being told I couldn’t have children, and although my specialist centre staff were amazing, I felt I needed something more. I didn’t want to burden my family

or friends with how I was feeling, so I just dealt with the thoughts by myself”.

Bisma used her dissertation to find out if others with PH had similar experiences, and her findings showed that most did not access mental health support. Following an open invitation to PHA UK members she conducted interviews via Zoom, asking questions about diagnosis, support factors, accessing therapy, acceptance, and challenges.

She submitted her dissertation last year and it was awarded a ‘first’ – the highest grade possible. She will find out

“I've gone through a lot of trauma and I think it changes you as a person” her overall degree classification this summer.

Bisma turned to education when the COVID-19 pandemic forced her to shield from her job as a dental nurse, and after discussing it with her husband, she decided the time was right to resign and start a degree.

Studying mostly from home, she attended a campus in Scunthorpe for lectures once a week and was fully supported by the university when it came to her health challenges.

“I told my tutors about my PH at the beginning, and they were amazing about it all. I’ve been able to get deadline extensions if I’ve had to have hospital stays, and additional support when I’ve needed it.

“I was also very lucky that my husband was able to support us financially while I did my degree. It would have been difficult to work alongside it because I get tired very easily.”

Despite being in her mid-thirties, Bisma said she didn’t feel ‘different’ as an older student due to the diverse range of ages on her course.

“Counselling is a degree that tends to attract older people who have life experience, and I’ve really enjoyed meeting others through my studies. There’s been a great social element to the course which is nice because I lost a lot of that when I got ill. I couldn’t keep up with everyone else, and I was self-conscious about having a Hickman line and wearing a pump. It was all very hard to deal with at just 29.”

Bisma is currently a volunteer counsellor with a sexual and domestic abuse charity, and at the beginning of this year, she started a diploma in psychosexual trauma – this time with the University of Nottingham.

Her long-term plan is to counsel people with PH, whilst continuing her work with the charity, and she is looking forward to getting stuck into her new career.

“I've gone through a lot of trauma and I think it changes you as a person”, she added. “It makes you realise there's more to life and you have to do something you enjoy.

"I wanted to change careers because I want to help people, and I feel extremely proud of what I’ve achieved with my degree and my dissertation.”

.

“I told my tutors about my PH at the beginning, and they were amazing about it all”

Thank you to the PHA UK members who agreed to be interviewed as part of Bisma’s studies.

EMPHASIS ISSUE 1 / 2025 _PAGE 21

!

E E FR

Do you struggle with depression?

Our new self-help programme is available now Developed by psychologists, and supported by the PHA UK, this is the world’s first self-help programme for people who live with pulmonary hypertension alongside depression or low mood.

“It taught me how to change my negative thoughts and reactions to adverse situations”

Complete the series of workbook over four weeks, in your own time and from your own home, and learn how to change your thinking habits and behaviours.

“I was able to make this journey on my own in the privacy of my own home”

The programme is based on cognitive behavioural therapy (CBT) and 87% of those who completed it as part of a controlled trial rated it as ‘good’ or ‘excellent’.

Find out more or order for free by clicking above or visiting phauk.org/HelpForDepression PAGE 22_ EMPHASIS ISSUE 1 / 2025

Dating with pulmonary hypertension We talk a lot as a PH community about support from partners or spouses – but it’s important to remember that many people are single. If you’re dipping your toe into the dating pool, or hoping to meet someone in 2025, this feature is for you…

D

ating can be daunting at the best of times, and when you throw chronic illness into the mix, it’s understandable some of us worry about navigating the potential complexities of starting new relationships. When do I tell them I have PH? Will they see me differently? What if I have to cancel a date last-minute, because I don’t have the energy to meet up?

It’s easy for your brain to get bogged down with these thoughts, but opening yourself up to the possibility of things going well can make all the difference. After all, who knows what could happen!

In this special feature we bring you real (and honest) experiences, stories, advice, and hopefully a sprinkling of inspiration…

Continued overleaf

EMPHASIS ISSUE 1 / 2025 _PAGE 23

Dating with pulmonary hypertension

“When I first started chatting with my now husband on the dating app Tinder, I had made my mind up that I would tell him on our first date that I had PH. It was nerve-wracking telling him, but I knew it was important to let him know all about me. There are days where you can’t hide PH and so I told him what it was, how it affected me, the future of PH, but also how I made the most of life despite having it. Fortunately for me, Terry looked beyond ‘PH Tess’ and realised that I enjoyed living life to the full but understood that I also needed to rest between activities. We have now been married eight years and we always have each other’s backs”.

Tess

Opening yourself up to dating What if we viewed living life with a chronic condition as a strength? Psychotherapist Sophie Papageorgis has pulmonary hypertension herself and understands the challenges. This is her advice on shifting your mindset around romantic connections...

“Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.”

This powerful quote above is from an author, Glenn Schweitze, who has struggled with chronic tinnitus. What

PAGE 24_ EMPHASIS ISSUE 1 / 2025

difficult experiences. They are the I love about this, is that it highlights people with resilience, perspective, that we are all the same. We are all on and a sense of what’s truly important. the same journey, and some of us have things lobbed our way that we could Those are amazing qualities that anyone do without – like PH. would be lucky to have a It doesn’t mean we relationship with!

“Some of the most are ‘less than’, it just What if we viewed means that we have living life with a chronic incredible people other difficulties to condition as a strength? in life have gone contend with as we Who says it’s a negative! progress through life.

People would be lucky to through difficult Those things can be with us, we’re pretty experiences” leave us feeling hardcore! battered, bruised There might be worries (literally in some cases), different… about telling people who we’re dating all things that knock our self-esteem. about our health, but the ones who are And if our self-esteem isn’t great, worth sticking around for won’t be we probably find ourselves thinking fazed by that. If anything, they’ll be things like the following (and yes, the ones who want to be there and this is an insight into my mind!): will build you up. PH is part of our “No-one will want to be with me”, lives, but it is not our whole lives. “my life span might be limited and I don’t want to put anyone through that”, “I’m a burden” …and then some!

But you know what? Some of the most incredible people in life have gone through

Can you really find love at the click of a button?

It’s not always easy to get out and meet people in traditional ways when you live with the symptoms of PH, which is when dating apps can really come into their own.

There is now more choice than ever when it comes to platforms, and some remain free while others carry subscription costs or charge for additional features.

You may choose to explore a dating site specifically for people with disabilities or chronic illness.

There are a few based in the UK, including Disability Match (disabilitymatch.co.uk) and Enable Dating (enabledating.co.uk). creating TIP: If you don’t feel comfortable try d coul you self, a profile for your eone mysinglefriend.com – where som close to you can do it all for you!

Online dating is a great way of exploring connections from the comfort and security of home and allows you to take the time to get to know someone before deciding to meet.

However, this type of dating can be challenging if you are sensitive to rejection, so it’s important to go into it with your eyes open.

For example, you may have heard the phrase ‘ghosting’, which refers to

someone disappearing for seemingly no reason whilst chatting online – even when things seem to be going well. If you experience this, please do not automatically assume it is because of your illness. It happens to everyone at some point. The key is not to dwell on things like this – simply move on and count yourself lucky you didn’t get as far as meeting with that person, as they showed their true colours early!

The truth is, you do need to be prepared for experiences like this, and not everyone will be kind or honest in their interactions. Remember though, there are lovely people online too, so don’t let it get you down.

It can be really fun, and confidencebuilding, to chat with different people online. It won’t work out with them all, but you’ll come across some gems along the way and learn more about what you’re looking for.

“I was diagnosed with PH at eight years old and I never thought I’d ever find anyone who would want to be with me. I had the lowest self-esteem once I hit puberty. As I grew older and met more people, I realised there are good guys out there too, and men actually wanted to date me.”

Prisha

Don’t forget to keep safe online: • Avoid sharing personal information like your full name or address until you feel comfortable with someone and have met in person.

• Be vigilant for fake profiles or scams. Unfortunately, some use dating apps to target vulnerable people in the hope of extorting money, so always exercise caution.

• If you arrange a date, make sure you meet in a public place and tell someone you trust where are you going.

“As a woman with PH I find that conversations about children in the future and pregnancy risks have been the hardest ”.

Magdalena

(name has been changed)

Continued overleaf...

EMPHASIS ISSUE 1 / 2025 _PAGE 25

Dating with pulmonary hypertension Tracey Smith is 51 and lives in West Sussex. She split from her husband in 2016, four years after being diagnosed with PH, and told her new partner about her health condition on their very first date.

They have been together ever since…

Tracey has now found love with Chris

Real

EXPERIENCE

I just le t t he n e p p a h t n e mom

My children were 14 and 11 at the time my husband and I split, and I concentrated on being a single mum.

About a year later though, I felt ready to meet someone else, but I wasn’t quite sure how. I spoke to some friends about it and decided to try online dating. It’s much more the ‘norm’ now but back then, in 2017, it wasn’t so common.

I went on a couple of dates from Plenty of Fish (pof.com), but I didn’t tell them about my health. There was something about chatting to Chris that felt different though and I told him about my PH on our first date. I wasn’t planning to - and I hadn’t given it much thought - but it just felt right at the time, and I also felt like I owed it to him to be upfront about it. The symptoms, like my breathlessness or getting light-headed, are not easy to cover up so I felt it best to be honest.

It did feel scary, as I didn’t know how he would react, but I just let the moment happen. He reacted brilliantly though, showing an interest and asking questions about PH. And ever since, he’s always been able to look through it and accept that it’s part of me.

I did fell quite self-conscious of it all when we first started dating. I’d worry about getting

PAGE 26_ EMPHASIS ISSUE 1 / 2025

up stairs when we were out and about together, whether I could walk at his pace, or whether I’d go dizzy in front of him. Even though I was totally honest with him about what I had, I still didn’t really want to ‘show’ him. Chris was supportive right from the start though.

He even joined the PHA UK himself and ordered their publications and read up on it all.

I am generally very open about my PH with everyone, and I think that helped me when it came to telling Chris. It’s just the sort of person I am.

How would I have felt if Chris had reacted badly when I told him?

That’s a very good question. It probably would have been a game-changer, because PH is obviously part of me and if someone can’t accept the PH, they can’t accept me.

“When my husband and I split after 11 years together, I was terrified of entering the dating world again. When I was ready, I braved it and learned that being open and honest about the implications PH has on my life right away is the best way to be. Don’t shy away from talking about it because to the right person, none of that will matter!

My biggest piece of advice is don’t let PH become your entire personality. You’ve got so many great qualities and so many other things that make you interesting.

Remember to focus on those things as well!”

Jess

Debbie Taylor, 41, lives in the West Midlands with pulmonary arterial hypertension.

She had mixed experiences when she first started dating but has now met someone she feels fully comfortable with…

Real

EXPERIENCE

Be patie nt… i t ’ s w or t h i t in t he e nd My ex and I split before I was officially diagnosed with PAH but the symptoms had already begun. At the time we split our little girl was only two, and when I got my diagnosis I went straight onto the Hickman line. I was also in the middle of moving house, so there was a lot to deal with. It took a couple of years to get stabilised, and dating just wasn’t on my mind.

When I felt more ‘sorted’ I started to consider trying to meet someone and looked into dating sites. I was worried though about how the Hickman line would affect things, so to be upfront about it, I used photos on my profile that showed the line.

It was always hard to know whether to tell someone about the PH straight away or to leave it a while before bringing it up. But when the online chats turned to the subject of jobs, it normally came up naturally as I had to explain why I’m unable to work.

I didn’t go into lots of detail in these conversations, I’d just explain I had a lung disease but that it didn’t stop me from doing most things. I felt it was important to be upfront about my health as I didn’t want to waste my time (and theirs) by meeting up if it would be an issue for them.

I had mixed reactions from people to be honest. There was a lot of ghosting, and one man asked when I was going to die. I explained I could get hit by a bus the next day! I have to admit that some of the reactions I got did make me feel quite depressed, and I wasn’t feeling very confident about myself.

I eventually started talking to someone who is now my boyfriend, and I told him quite early on about the PH – but just the basics. After a few more dates, I gave him more details about my medication and told him I was being assessed for a transplant. I also explained I went to my local hospice once a week, and that’s why I couldn’t meet up with him on those days.

I was conscious of keeping these conversations with Paul as positive as possible. I told him I could still walk and talk even if I couldn’t climb mountains or run marathons.

He was really good about it all and told me none of it mattered. It was reassuring as I had been really worried about telling him everything. It’s not like telling someone you have cancer, as non-one has ever heard of PH. I spoke to my friends about it beforehand and they told me he’d stick around if he was worth it, and if he didn’t, it was his loss. It was really hard to know what to do for the best so I’m glad he reacted well.

By this time, I’d transitioned from a Hickman line to a nebuliser, and I’d time our dates around when I took the medication, so I didn’t have to inhale it in front of him.

It was about three months before I became comfortable enough to do that.

I met Paul on the Plenty of Fish website (pof.com). The only other free one I found was Facebook Dating and that was full of weirdos! There are a lot of idiots on Plenty of Fish too, but you just have to go through them and be patient.

It’s definitely worth it in the end.

Our first date was a couple of drinks at the local pub, and it turned out we live across the road from each other so it’s a small world! He said he’d seen me around and wanted to say hello, but he was too nervous.

We’ve been together about six months now and we enjoy date nights like the cinema or going out for food.

We haven’t been on holiday together yet, but we’ve been looking at cruises as I need oxygen to fly.

Paul understands when I have my bad days and he’s absolutely fine with it all. He’s really supportive, and I share a lot with him now.

If there’s someone with PH reading this and wondering if they will ever meet someone, I’d say just be patient and it will come eventually. I’ve met a lot of girls with PH that have found relationships. It’s just a case of sticking around for the right one – and getting through the bad ones first if you need to. That can be a challenge whether you have PH or not!

The images of Debbie above are ones she included in her online dating profile to show her Hickman line.

Continued overleaf...

EMPHASIS ISSUE 1 / 2025 _PAGE 27

Dating with pulmonary hypertension

A male perspective...

In the last issue of this magazine, PHA UK member Chris shared his experiences of finding love following his diagnosis of PH. Click below to read his story online.

“I have had a hard time finding someone. Most friends have said not to share my PH details until I have gone a couple of dates, which I have tried.

My advice is to keep it causal and see how it goes. We never know when and where we shall meet the one. And no, I have not lost my hopes. One day I hope to meet the one”.

Amy (name has been changed)

Intimacy & PH: Understanding how PH might affect your physical relationships

A same-sex perspective...

As a young woman with PH, emPHAsis columnist Raya worried she’d never find someone to accept her for who she was – until she met Jade. The pair are now engaged, and Raya shared their story with us last year.

Click below to read it online.

Being diagnosed with pulmonary hypertension doesn’t mean you can’t have a healthy sex life. We produced this free publication to help explain how PH and its treatments can affect you as a sexual and intimate person, and to discuss ways of dealing with this. It also aims to help you start conversations with the most important people in your life, at a time when it may not be easy to do.

Click right to order online.

We want to hear your experiences of dating with PH! Tell us your stories (good or bad!) and share your tips and advice to help others.

Email media@phauk.org or click right to complete a short form online (you don’t have to give us your name).

PAGE 28_ EMPHASIS ISSUE 1 / 2025

FREE

P U B L IC A T Includes IO N experienreal ce s

Watch, learn,

and move Inspired to get more active this spring?

Our expert online video resources can help you move more with PH, in a way that works for you…

Scan the code at the bottom of the page for all these videos...

The importance of exercise

How movement benefits people with pulmonary hypertension, and the different types of activities you can do.

Simple exercises to get fitter and stronger at home

Busting myths around exercise

You don’t need a gym, or even a pair of trainers, to start getting fitter and stronger with PH. In this video, Carol is joined by fellow specialist physiotherapist Trudi Scott to demonstrate simple exercises that can be completed at home.

How to develop your exercise

Pulmonary rehab classes and how they can help you move more

Carol runs through some common misconceptions about getting active which lead people to think they can’t exercise with PH.

If you’re somebody who is actively exercising, are there any changes you need to make? Advice from Carol on how you can continue to develop your level of exercise.

Moving for weight loss

If you have PH and are overweight, exercise can help you lose weight which in turn can help your breathlessness.

Here, Carol explains which activities can help you achieve your goals.

Pulmonary rehabilitation classes are run by the NHS across the UK, and could be useful if you are worried or unsure about exercising with PH.

Walking to get fitter

“Start with small steps and build up activity slowly. The most important thing is to find something that you enjoy."

Carol Keen Clinical specialist physiotherapist in PH

You’ll find expert advice, information, videos, and real-life experiences of exercising with PH on our website, click here or go to

www.phauk.org/MoveMore

How to pace yourself and recognise your limits when walking.

Turning ‘activity’ into ‘exercise’

How you can develop your exercise further from activities such as household chores and walking to the shops.

EMPHASIS ISSUE 1 / 2025 _PAGE 29

KIDS

CORNER

r Our regular space fo children with PH

S ’ O C CO UMN COL

our Kids Corner is , 11 , st e ra P co o C eated for PH tr n e e b s e’ Sh t. is n colum for this issue, d n a y b a b a s a w since she her experiences of re a sh to d te n a w she rity that aims to a ch a y b d e rt o p p being su y’. health through pla ’s n re ild ch rm o sf n ‘tra PAGE 30_ EMPHASIS ISSUE 12 // 2025 2024

Budding journalist Coco arlight St interviewed the CEO of this for Children’s Foundation e’s done a piece, and we think sh e PHA UK brilliant job! Here at th e work of we love to celebrate th lp make a other charities that he ith PH, so difference to people w ing Coco’s we hope you enjoy read did… column as much as we ed to play.

All children love and ne Starlight An organisation called helping them Children’s Foundation is charity that have fun. Starlight is a g people play in helps children and youn Hammersmith, hospitals. It is based in er the UK. I joined London but helps all ov er at Great in 2022 when a playwork ’s Hospital told my Ormond Street Children ister with Starlight mum that she could reg ren with health because they help child ilies. In waiting conditions and their fam seen a Starlight rooms, you might have provided by Play Centre. These are tch movies.

Starlight so kids can wa nd Street and I saw one at Great Ormo at patients can thought it was good th an appointment. relax while waiting for etitions. I won In the past, they ran comp d a Roxi karaoke a trip to Legoland UK an t boxes of toys, machine. They also sen home. The items books and games to my nated by the in the boxes are kindly do p and Amazon.

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by Emma Samms and Pe th ersary These companies help wi niv an Samuelson (its 40th e it lov I o. to s nt ese pr g pin wrap d to help is in 2026). Emma wante s xe bo e ris rp su d when they sen brother Jamie rs me children like her ee ch it e us ca be st po e a and in th who had aplastic anaemi e. up every tim who had another boy called Sean d ite inv ht lig ar was Last year, St a brain tumour. Starlight s op sh rhyme: our family to art work named after the nursery y pla o tw d an st star I with an artist Star light, star bright, fir d I wish workers at Chelsea an see tonight, I wish I may, e th In l. ita sp wish Westminster Ho I might, have this wish I w ne of s s to go first session, I learnt lot tonight. Sean’s wish wa s ler rol ink e us to ) so skills like how to Disneyland (in America h, nt d for for printing. The next mo Emma and Peter arrange s ve lea ng sti ere and we pressed int Coco and her him to visit with his mum ter Af y. cla o int rs we sister Aika with and flo his wish came true. es ap sh y cla t their puppets s that, we cut ou itie tiv ac in ma ree th e Th e. s and made a pretty mobil Starlight are giving boxe of created y, In the final session, we pla n playing to children so they ca ets by your own world, I like d an fantastic shadow pupp ers ork yw o. supporting pla animals with the minifigures to nce rta cutting out people and po im e th for g , tin ing ca ell advo ing I am good at storyt . nt from black card, attach me rn ve go e king up of play to th phane. naming characters, ma for s sticks and colourful cello xe bo ideas They carefully make g worlds and thinking of uld co I really enjoyed makin ers ag en Te rful different ages. ying for playtime. Play is powe , fts cra shadow puppets and pla d have diaries or arts an hen because it supports your s toy with my sister Aika. W ry so sen t ge ss and babies would ey let wellbeing, your happine n I arrived at a session, th tio child and there are prepara I was your mental health. Every me play with Lego until ren ild ch ow sh ey are boxes which art. needs to play, even if th ready to join in with the . nt me at tre spital re ho tu fu ke their to play in hospital. Toys ma I could also have breaks ed joy joyable Cathy said that she en gave us appointments more en Lego if I felt tired. They s. o. The the annual Health Play and less worrying for kid really yummy snacks to s ard ppy helpful, Specialists of the Year Aw In the past, I felt very ha playworkers were super ies with lcoming where she presents troph when I had toys to play always smiling, very we g din and vouchers to outstan during my hospital stays. and they loved to play. eir th ing see ed they people. She lov ht, If families want to join, I was curious about Starlig rk. wo rd ha d an by ht ion dedicat man, can reach out to Starlig job r so I interviewed Cathy Gil he of rts they The favourite pa about going to their website or to the CEO, to find out more ing en list d an ng er. eti are me swered can speak to a playwork the charity. She kindly an rstanding their de un , ren ild ch t Every playworker that of ct pa my questions. I learnt tha im e th ing see d an needs 6 helps Starlight is a star. ls.

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EMPHASIS ISSUE 1 / 2025 _PAGE 31

KIDS

CORNER

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PAGE 32_ EMPHASIS ISSUE 1 / 2025

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If you need to talk, we’re here to listen...

Our free supportive call service gives you dedicated time with a PHA UK team member to talk through any worries or concerns you have relating to your emotional or mental wellbeing.

Recent feedback from Listening Line users...

“This really helped me when I was diagnosed and scared” “The support lifted me”

The Listening Line is for all PHA UK members and their family and friends too.

It can help with: • Adapting to a diagnosis of PH • How to talk about it with others • Coping with changes • Concerns about the future • Worries about loved ones • How to access supportive palliative care • Loss due to PH ….and much more! Please note we are unable to offer personalised medical advice or make or expedite NHS referrals.

Find out more or book a call at phauk.org/ListeningLine

NEW! You can now choose and book your call online, at a date and time to suit you. Click here to find the next available appointment.

Please note: Please note: Our Listening Line and e-support services are not formal counselling services and are not designed to replace clinical advice from your specialist centre team.

Our Listening Line is operated by retired NHS nurses Paul Sephton and Sian Richardson, who have many years of experience in PH.

If you prefer support by email…

Our e-support service provides advice and signposting, or ongoing emails to help you through a difficult time. Contact us at support@phauk.org - at any time of day or night - and we’ll get back to you within two working days. You’re not on your own.

Steve

ood is Steve Caw d e s a -b e p pulmonary Scunthor d a h e h d overe ar y 61. He disc ion in Janu s n e t r e p y UK arterial h d the PH A e in jo d n a last year ay. straight aw Thanks for introducing yourself, Steve! What’s the biggest thing you’ve learned about PH, or about yourself, since being diagnosed?

To take each day as it comes.

Where do you receive your treatment?

I’m looked after by the Sheffield Pulmonary Vascular Disease Unit at the Royal Hallamshire Hospital.

It’s unbelievable care and it’s made a massive difference to my quality of life.

y M e a nd m sh a D dog

What advice would you give someone newly diagnosed with PH? You’re in safe hands, trust your medical team!

What does ‘living well’ mean to you?

Being able to do things I couldn’t before diagnosis.

And finally, what makes you smile?

Being alive!

What’s the best thing about being a PHA UK member?

All of the information and knowing you’re not alone.

t Help our community ge r! he ot to know each

With my

immedia

te family

uce If you would like to introd members UK A PH er yourself to oth or visit in this feature, click here mber Me he etT phauk.org/Me m. for ort sh r to complete ou our on elf urs yo You could see ue iss ure fut a website or in of this magazine…

EMPHASIS ISSUE 1 / 2025 _PAGE 35

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s e i r o s s e c Stylish acPHA UK from thesale goes very 20% from e ur charity directly to o

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PHA UK online

Our websites give you instant access to information and support www.phauk.org Information about PH, downloadable resources, online shop and the latest news Tap this button at the bottom of each page to use assistive technology that makes our website accessible to all

www.phocusonlifestyle.org Real-life stories and experiences, blogs and videos, lifestyle and wellbeing advice... and much more!

EN PI N BA M E L ADG E

£3 ea ch

Join our panels and shape our work...

FEEDBACK FORUM Whether it’s a booklet, poster, video, or web page, we need to be sure that it meets the needs of the PH community.

That’s why we’re building a mix of people affected

by PH - patients, and their loved ones too - to give us feedback on new materials before they are launched. Your opinions are really important, and they help us make sure we’re getting things right.

As part of our Feedback Forum, we’ll ask you to spend a little time reviewing our materials before they are launched. This may be in the form of reading a leaflet, watching a short video, or having a look at a web page.

You will then be asked to fill in an online form with your thoughts. Sometimes, we may ask your thoughts on an idea for a campaign or project during the planning stages, to ensure we are taking things in the right direction.

Join at www.bit.ly/PHAUKfeedbackforum

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.

Our Research Forum is for patients and loved ones or carers who would be willing to help with these studies when possible.

They often involve completing surveys or questionnaires, and sometimes they may involve online or telephone chats, or focus groups.

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.

Join at www.bit.ly/ResearchForum_PHAUK

G ET I N V I N YOU OLVE D R TI M E , O W N TH E CO F R O M OF YO M FORT UR O HO M E WN !

Members of our rum and Research Fo Feedback Forum to y role in helping panels play a ke te bu ri tivities and cont guide PHA UK ac search work. to important re with rum members fo l al ct ta n co e W is up a email, and it opportunities vi you respond. to you whether at PH comes We appreciate th we understand with bad days so ve some of our if you need to gi iss! invitations a m

g n i r Moto ! d a e ah the road in s p m u b not hit a few g licence, but she’s y M a y a R t Columnis g her drivin t life with PH. in t t e g o t e when it cam g a more independen dence, fi n o c f o is is now enjoyin r c eflects on a he Motability scheme r e h s e u s is This s, and how t d the wheel… r e h t o f o s s the kindne to get behin r e h d e t r o p has sup

PAGE 38_ EMPHASIS ISSUE 1 / 2025

Raya's column

g

Due to having pulmonary hypertension, I always knew that learning to drive would be an important part of life for me. I knew that it would be a massive part of me gaining more independence.

I started learning all my theory at the age of 18 and started driving lessons shortly after. I really enjoyed learning to drive and sailed through my lessons.

However, I did struggle with my driving instructor at the time, as they didn’t help me to feel confident and I felt very belittled sometimes. I feel like I was treated differently because of my condition and how small I was (due to my health conditions), and I didn’t like this at all.

I really needed to pass my theory before moving forward so I just used this as a bit of an excuse to stop the lessons.

I really struggled to pass my theory, because of the test centre. Firstly, I had to walk three flights of stairs because their lift never worked, and I felt that the people there were so impolite and rude. Again, because I was super small for my age, they just looked at me as if to say, ‘why are you here?’.

It made me anxious, on edge and so uncomfortable.

I felt I’d failed before I even started!

I tried my hardest to keep going back and being positive and trying to pass but it was just a horrible environment to keep being in, so I decided to take a break away from it all. Then the covid pandemic came along so I couldn’t do anything anyway due to isolating.

When I was allowed to start going back out, I continued to drive short distances with my mum to keep putting my knowledge into practice. But after

Click here for our free guide to applying for a Blue Badge to enable you to use disabled parking bays.

covid I lost a lot of confidence and had a lot of anxiety about going out, so before I continued my formal lessons, I needed to work on myself and my mental health.

When I felt ready to start up again, it was also time for me to get a new car as it’s provided through the Motability scheme and needs to be changed every three years.

So it was exciting that I got to choose a new car ready to restart my driving!

Whilst going through the process of getting my new car, I found out that Motability’s charitable arm, the Motability Foundation, would help cover the costs of all my driving lessons up to 40 hours. This was a massive help!

I found another test centre and went for a visit first with my mum so I could become familiar with it. We explained that I was quite anxious to do my theory, and they were so lovely about it. One of the ladies who worked there took my arm and showed me each room and the lockers I’d have to put my belongings in.

I immediately knew I’d be okay to take my theory test here.

The day came for my test, and I went in there feeling confident.

The lady I had met on my first visit instantly recognised me and didn’t leave my side. She told me I could come out of the room to her at any time if I felt I couldn’t continue. I had such a positive experience, and I truly believed that is what helped me pass.

So, I was all good to start lessons again!

I was really nervous about getting a new driving instructor and it was really holding me back. But when my lessons started, I settled in really quickly. My new instructor Gary made me feel so at ease all the time, and he was constantly boosting my confidence. I was always doubting myself but he really pushed me, in the most positive way. I will always be so grateful to him for encouraging me to do my best.

Even if I made mistakes, it was never a problem– we just practiced again until I got it right.

You must notify the Driving and Vehicle Licensing Association (DVLA) if you have pulmonary hypertension.

Click here for more information and our guide to the process. You can order a printed version for free at phauk.org/Driving _PH

I passed my driving test first time, and it was the best feeling ever – one I definitely won’t forget! After everything, I was super

proud of myself.

It has all been worth it as I now have so much more independence. I’m still anxious to do long journeys alone but most of the time my partner Jade and I are always together. We love just being able to jump in the car and go wherever we want, whenever we want!

If you are able to, I really encourage anyone with PH to learn to drive.

It’s another milestone for us and gives us such independence. If you’re currently learning to drive, my message is,

YOU’VE GOT THIS!

Find out more about the Motability scheme at motability.co.uk Find out more about accessing driving lessons through the Motability Foundation at bit.ly/Driving _Lessons EMPHASIS ISSUE 1 / 2025 _PAGE 39

S E LF - H E LP P RO G R A M ME FROM THE PHA UK

Help if you're struggling with anxiety and PH

Our free self-help programme has been developed with psychologists specifically for people with pulmonary hypertension – and 100% of those who tested it said it helped with their anxiety.

Based on Cognitive Behavioural Therapy (CBT) Complete the workbooks at home Work through them in your own time

Click to order or visit phauk.org/HelpForAnxiety

Financial support tools

Tools provided by our partnership with Turn2us www.turn2us.org.uk

Benefits Calculator

Find out what you might be able to apply for by answering questions about your personal circumstances. phauk.org/BenefitsCalculator

Grant Search

Discover what supportive grants may be available to you and your family. phauk.org/GrantsSearch

Personal Independence Payment (PIP) Helper

Walk through the PIP application process step by step, access tips and checklists, and more. bit.ly/PIPhelper

Don’t miss out on what’s yours!

Celebrating Christine and her kindness Over £2,000 was donated to our charity at the end of last year, when a school coffee morning fulfilled the fundraising goal that Christine Haslett never got the chance to meet. Her mother Elaine told us more about what made the event - and her daughter - so special…

W

hen Christine was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) in 2019, it obviously was a big shock to her, but she coped with it really well.

She was very independent, living in Belfast around an hour away from us in Londonderry, and she had a wonderfully positive attitude. She just wanted to live life to the fullest as best she could.

She had a pulmonary endarterectomy [pioneering surgery to remove the clots in the arteries causing the CTEPH] in December 2023, but it wasn’t as successful as hoped and we lost her on 13th September last year. She was just 38.

I was working as a kitchen supervisor at Termoncanice Primary School and Nursery Unit in Limavady before I retired, which was just before Chrstine’s surgery.

The principal came along to her wake, which is when I told him about her bucket list. One of the things on it was to jump out of a plane to raise money for the PHA UK, and if she could have done it, she would. But it wasn’t able to happen.

He went back and discussed it with the kitchen staff, and that’s when they had the idea of the coffee morning to fulfil her wish of fundraising.

It was just amazing how much they did, and how much they raised.

I went along with my husband and my daughter Laura, and there were so many

people there. It was lovely that we all could come together and do something that would help.

I was so touched when I saw how much effort the school had gone to.

It was unbelievable. The girls I worked with in the kitchen are very special and it was a real show of support – from them, the teachers, cleaners, and everyone.

Other goals on Christine’s list were to travel to Japan, France, and Canada, and to see the Northern Lights. She also wanted to go over to England to watch Manchester United play with her daddy.

She watched a match with him on TV the day before she died.

Christine always looked to the future and loved to plan the things she was going to do. It brings me comfort that she really made the most of life.

She just kept going.

We are grateful to everyone at Termoncanice Primary School and Nursery Unit for their incredible fundraising, and to Elaine for sharing her family’s story. eamPH

#T

EMPHASIS ISSUE 1 / 2025 _PAGE 41

WIN

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Find out more at

www.bit.ly/PHAUKlottery or click here to sign up now!

Prefer to fill in a paper form? Call us on 0300 373 5367 and we’ll post you one out.

The PHA UK Lottery is operated by Unity Lottery. 50p of every £1 goes directly to the PHA UK with the rest covering prize winnings and administration costs. To contact Unity Lottery call 0870 050 9240.

Unity is operated by Sterling Management Centre Ltd, registered as an External Lottery Manager by the Gambling Commission under the Gambling Act 2005 www.gamblingcommission.gov.uk PHA UK Registered Charity No. 1120756

Food for. thought..

CREATINE CURIOUS?

WHAT TO CONSIDER WHEN IT COMES TO CREATINE SUPPLEMENTS AND PULMONARY HYPERTENSION

Keeping active and maintaining muscle strength can be a challenge with chronic illness, but taking a creatine supplement could play a helpful role in your wellness journey.

Shaun Clayton, a Certified Nutritionist and Operations and Finance Director at the PHA UK, explains more…

WHAT IS CREATINE AND WHAT MAKES IT SPECIAL?

Creatine is a nutritional compound that comes from three amino acids and is found mostly in the muscles of your body, as well as in your brain.

Creatine is contained in some foods including red meat, seafood, milk, and soy foods such as tofu and tempeh.

It is also widely available in the form of supplements, typically as tablets or in powder form to mix with milk or water, and this article focuses on creatine as a supplement.

As someone who's studied the research on creatine, particularly for those with cardiopulmonary conditions, I'm excited to share how this supplement could be beneficial for the PH community. Your muscles naturally contain creatine, which helps provide quick energy for daily activities and exercise. When living with PH, maintaining muscle strength becomes especially important for quality of life.

The benefits of creatine that matter for PH: • It helps preserve muscle strength without straining your heart and lungs.

• It may improve daily activity tolerance, meaning you recover quicker from exertion.

• It supports muscle endurance for everyday tasks, which could help maintain independence and improve your quality of life.

• It doesn't increase blood pressure or heart rate significantly.

SPECIAL CONSIDERATIONS FOR PEOPLE WITH PH: 1. Start slowly and safely The standard loading phase (which means taking larger amounts initially)

might not be necessary. Instead, consider starting with a modest 3-5g of supplement daily and monitoring how you feel. Typically it takes 30 days for your muscles to be fully saturated.

2. Stay hydrated Creatine causes muscles to hold more water, which is generally good! But this means staying hydrated becomes even more important for those with PH. 3. Monitor your response Keep track of how you feel, especially during the first few weeks. Any unusual symptoms? Share them with your healthcare team.

WORKING WITH YOUR HEALTHCARE TEAM This is so important!

Before starting any supplement, including Continued...

EMPHASIS ISSUE 1 / 2025 _PAGE 43

Food for. thought..

creatine, have a conversation with your PH specialist. They understand your specific situation and can help to: • Determine if creatine is right for you.

• Adjust dosage based on your needs.

• Monitor any potential interactions with your medications.

• Track your progress safely.

THE RESEARCH BEHIND CREATINE Studies have shown that creatine can be particularly helpful for those with chronic cardiopulmonary conditions.

While specific research in PH is still growing, evidence suggests that creatine can help maintain muscle strength without putting extra strain on the heart and lungs, which is a crucial benefit for people with PH.

A REAL-WORLD PERSPECTIVE It seems that many people with various cardiopulmonary conditions have found that creatine helps them maintain their independence and ability to perform daily tasks. However, everyone's experience is unique and what works wonderfully for one person might need adjustment for another.

PAGE 44_ EMPHASIS ISSUE 1 / 2025

Practical tips for getting started with creatine: 1 Choose quality Look for pure creatine monohydrate from reputable manufacturers.

3 Keep it simple Mix with water or your favourite beverage, or buy the handy fruit-flavoured pastilles - no need for complicated protocols.

2 Time it right Take it with meals to help absorption and minimise any digestive adjustment.

THE BOTTOM LINE

Living with PH presents unique challenges, and maintaining muscle strength is a crucial part of managing your condition. Creatine might be one tool in your wellness toolkit that helps support your quality of life

4 Be patient Benefits typically develop over several weeks of consistent use.

without adding undue stress to your cardiovascular system.

Remember: This journey is about finding what works best for you. Start slowly, listen to your body, and always keep your healthcare team in the loop. You're not just taking a supplement, you're taking an active role in managing your health.

Have you considered trying creatine, or do you have questions about how it might fit into your PH management plan? I'd love to hear your thoughts or address any concerns you might have about getting started safely.

You can contact me at nutrition@phauk.org.

d e d n e m m o c e R e...

i l l i h c g n i m r Wa carne conrecip

Chilli is easy, healthy and filling, and it freezes really well – so it’ s a great dish to make when you’re feeling good. You can then portion it up into containers and pop in the freezer for ready-made meals when you’re not up to cooking.

Protein comes from the mince and beans, and you could add in even more vegetables of your choice to boost the nutritional content further.

Serve with brown rather than white rice for an added hit of fibre.

TOP TIP

CLICK HERE FOR THE BBC GOOD FOOD RECIPE – TRIED AND TESTED BY MEMBERS OF THE PHA UK TE AM! Would you like to share your favourite recipe with emPHAsis readers? Email it a to media@phauk.org with in it see ld cou you and to pho the next issue!

Got a question about nutrition? Email nutrition@phauk.org and we’ll help!

emPHAsis editor Mary says: I make this chilli using Quorn mince at least once a week, often with cauliflower rice (which can be bought frozen or in packets if you don’t want to make your own!).

The leftovers are great for lunch the next day with a baked potato, and it’s a good dish to serve if you have friends or family round too.

Mary’s chilli, made with red and green peppers for added colour

Add homemade guacamole on top or slice some avocado on the side to include healthy fats in this meal. Avocados are rich in monounsaturated (good) fat and vitamin E.

Vegetarian or vegan?

Simply swap the beef mince fo r a plant-based alternative.

Find more advice on nutrition and PH by clicking here.

In this dedicated area of our website, you’ll find information on: Eating to manage the side effects of PH medication...

Ultra-processed food...Managing a reduced appetite...

Making one-pan meals with PH...Understanding calories...and much more!

EMPHASIS ISSUE 1 / 2025 _PAGE 45

A special kind of gift Gifts in Wills help us continue our work to support people affected by PH – making a huge difference to those dealing with this challenging disease.

Could you or your family consider thinking of the PHA UK in this very special way?

Legacies, however small, play a critical role in supporting our work and securing the future of our charity.

“I updated my Will recently and decided to include the PHA UK as a way of giving something back for all the support I’ve received. It feels like a thank you from me and my family and it will help them to continue their work to help others.”

Julie, PHA UK member since 2012

Click to find out more about gifts in Wills or visit phauk.org/RememberingOurCharity

Thank you so much.

k c i r t Pa

New d he lives in n a 0 5 is K g n n a PH A U e Patrick Lo e b s a h e rrey. H with Malden, Su diagnosed g in e b e c st member sin , and late la 0 2 0 2 in le H P has multip o idiopathic ls a e h d er. covere arrow canc m year he dis e n o b f o a type myeloma,

Nice to meet you, Patrick!

Whereabouts do you receive your PH treatment?

At the Royal Brompton Hospital in London. I knew nothing about PH before my diagnosis.

What’s the best thing about being a PHA UK member?

Hearing about upcoming treatments and medicines.

What advice would you give someone newly diagnosed with PH? It's not over for you. Don't Google PH or look at life expectancy stats, as new treatments are coming along all the time and we have come so, so far in the last 20 years.

mea n s Cycling e m o t a lot

And finally, what makes you smile?

You’re in safe hands, trust your medical team!

What does ‘living well’ mean to you?

I am currently well managed and that means up until my cancer diagnosis I was able to compete (at a low level) in indoor bike races.

Cycling means a lot me to and I still want to be able to do that as I get older. So, living well is being able to do that and also go on holiday with my wife. I often hear about patients being happy that they can walk around the block or even take the dog for a walk.

I respect that desire and the joy it must bring.

With my so

n Ad a m

EMPHASIS ISSUE 1 / 2025 _PAGE 47

A QUARTER OF A CENTURY OF SUPPORT 2025 marks 25 years since the PHA UK was formed. Will you help us celebrate this meaningful milestone?

The year 2000 saw nurse Iain Armstrong and Kay Yeowart, whose son has PH, establish a small charity to help individuals and families affected by the disease to find others to talk to.

Fast forward 25 years and the PHA UK has grown beyond all expectations, helping thousands of people, funding vast amounts of valuable research, championing high standards of care, and campaigning tirelessly for access to treatments and services.

And we’re not stopping yet!

Here's how you can help us mark our milestone…

25 YEARS PHA UK

TAKE ON OUR CHAIRMAN’S CHALLENGE PHA UK Chair Dr Iain Armstrong has something special for his annual fundraising challenge…

Mark our milestone by gathering sponsorship for anything related to the number 25 during the year 2025! Here are just a few ideas: • Walk 25 laps of your garden over the course of a week • Give up coffee, alcohol, swearing or chocolate for 25 days • Complete 25 jigsaws or read 25 books • Make and sell 25 cupcakes or cookies • Hold an Easter egg hunt with 25 hiding places Sporty friends or family members could get involved by cycling 25 miles, running 25km, swimming 25 lengths, or completing 25 press ups a day.

And kind-hearted kids could wash 25 neighbourhood cars over the summer, or complete 25 household chores in return for donations. The possibilities are endless! You’ll find lots more ideas at phauk.org/25in25

More than a fundraiser…

How about 25 acts of kindness instead? You could pick up 25 pieces of rubbish during a walk, send 25 cards to residents of local care homes, or spend 25 hours volunteering throughout the year.

Click here for full details of our Chairman’s Challenge and ways to get involved

Join us in Birmingham We'll be holding a special summer get-together at the Edgbaston Park Hotel and Conference Centre in Birmingham on Saturday 9th August, to help our PH community get to know each other better and benefit from expert talks and advice.

This free national event will be open to anyone in the UK affected

by PH, and it will be a really special way of celebrating our 25th anniversary. Click to find out more or book your place.

PAGE 48_ EMPHASIS ISSUE 1 / 2025

AYST D URUGU T SA h A 9t

it National Aud of Pulmonary Hypertension

Audit confirms high quality care

The latest National Audit of Pulmonary Hypertension shows continuing strong performance by the UK’s specialist centres…

The

consistent message we receive from our members is that the care from their specialist teams is outstanding – and now the latest results from an NHS quality measure confirms they are doing an excellent job.

Every year, the National Audit of Pulmonary Hypertension (NAPH) measures the quality of care provided to PH patients in the UK by asking specialist centres to provide data that is then compared against a set of 15 agreed standards.

The latest audit, covering 2023-24, shows high levels of care continue – despite centres seeing more patients than ever Information from the audit is used by clinicians and commissioners to inform clinical practice, service development, improvement, and commissioning activities.

The audit sets out to answer the following questions: • Are pulmonary hypertension services appropriate?

• Are patients receiving the right treatment in a timely manner?

• What are the outcomes for patients with pulmonary hypertension?

You can y e see the k ver o findings ge the pa

EMPHASIS ISSUE 1 / 2025 _PAGE 49

it National Aud of Pulmonary Hypertension

KEY FINDINGS

99% 96% ✓✓✓✓✓✓✓✓✓✓✓✓✓✓✓ 95% These are some of the key findings from the 15th National Audit of Pulmonary Hypertension, based on the standards our members told us they were most interested in hearing about.

The findings are based on data gathered between 1st April 2023 and 31st March 2024. All eight specialist centres covering England, Scotland, and Wales took part.

9 of the 15 national standards were met at a national level in 2023-24.

Specialist centres are seeing double the number of patients compared to 15 years ago.

The number of new referrals to PH centres has increased year-on-year, except in 2020-21 (during the COVID-19 pandemic). There were 3,683 in 2023-24, compared to 1,861 in 2009-10 (the first year of the audit). In total, almost 38,000 people have been referred to the UK’s specialist centres since April 2009.

The number of patients starting PH treatment is the highest it has been since the audit began.

1,139 people started therapy in 2023-24, compared to 743 people in 2009-10, the first year of the audit.

(95% target)

(95% target)

of patients referred to a specialist were diagnosed within 6 months.

of patients received a right heart catheterisation before being given drugs to treat PH.

of patients who have had at least one consultation in the last year have had an emPHasis-10 quality of life score recorded (90% target).

Here at the PHA UK we championed the introduction of this standard because quality of life is so important.

97%

of patients taking PH medication have had at least one consultation within the last 12 months. (95% target) All consultation types, including those not in-person, are included in this standard and statistic.

The results of this year’s audit should provide reassurance to people living with pulmonary hypertension that the UK National Network continues to provide high quality care.

Professor David Kiely NAPH Clinical Lead

PAGE 50_ EMPHASIS ISSUE 1 / 2025

A true partnership The audit is commissioned by NHS England, and supported by NHS Scotland, NHS Wales, and the National Pulmonary Hypertension Centres of United Kingdom and Ireland Physicians’ Committee.

The PHA UK also 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 – in the form of this report. 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, so please look out for invitations to provide your feedback and input as the year goes on.

The audit is a true partnership and the fact that people living with PH are involved is something we are all very proud of.

Professor David Kiely NAPH Clinical Lead (pictured)

More than just assessing performance against standards The utility of the audit goes beyond simply reporting on whether standards have been met or not. It provides a huge amount of data that is used to give a greater understanding of PH, and this will be developed further in the future through the introduction of new and innovative measures that could paint a more detailed picture.

Reassurance and hope Dr Shahin Moledina, a PH consultant at Great Ormond Street Children’s Hospital, has been part of the audit project board for many years. He said:

Since its inception, a great strength of the audit has been its inclusive approach, encompassing patients regardless of geography or age – making it truly unique.

While the audit develops year on year, one thing remains a constant: at its core, the NAPH reflects the UK’s approach to pulmonary hypertension care a community of people, patients and their representatives, commissioner's and clinicians working together to improve care. This gives me cause Click here to for great hope. access the full

audit findings on the NAPH interactive dashboard.

EMPHASIS ISSUE 1 / 2025 _PAGE 51

Hope & unity

The future of PH research At the end of last year, the PHA UK organised another National PH Research Forum, bringing together scientists and researchers from across the UK to present their latest study findings and learn from each other to benefit patients.

Reflecting on a truly unique event T

he National PH Research Forum has been held at the Chelsea Physic Garden in London for many years.

Dr John Wort, a Consultant in PH at the Royal Brompton Hospital, plays a key role in the event and he is passionate about what it achieves. These are his reflections of a gathering that makes a difference.

"The Chelsea Physic Garden was established over 350 years ago by a group of people called Apothecaries.

It is one of the oldest botanical gardens in the country and the oldest in London.

Apothecaries gave medical advice to

PAGE 52_ EMPHASIS ISSUE 1 / 2025

people and medicines based on herbs and other plants. In a way, therefore, it is fitting that it has become the regular site for our National Pulmonary Hypertension Research Forum.

The garden is situated not far from the Royal Brompton Hospital (that’s how I discovered it), right by the Thames and is surrounded by a large old-brick wall and impressive townhouses that create a micro-climate. It really is a paradise right in the middle of London. As soon as you walk into the garden, you can feel the history and breath in the calming atmosphere created by thousands of plants. It became a regular haunt for me as a new consultant when I needed to de-stress!

One of the buildings contains an old classroom, based on the first floor and overlooking the garden, which must have held many lectures by distinguished botanists and physicians over the centuries. It is there that all the national PH centres gather and discuss their research every November.

We encourage all types of research in pulmonary hypertension by all types

of researchers, from medical students to the old-timers! One of the main aims is to maintain a friendly, collaborative atmosphere, which has fostered the incredible amount of high quality research that has come out of all the centres and the UK in general.

More recently, the PHA UK agreed to take over the running of the meeting which has secured its future in an economically challenged world. It also allows us to keep focus on why we are doing it; to improve the outcome and lives of all our patients. Having chaired the meeting now for over ten years, I am incredibly grateful to the PHA UK for their continuing support."

Dr John Wort

STUDY SPOTLIGHT

“Patients and their families should feel hopeful, even though we don’t yet have all the answers”

Every year, National PH Research Forum attendees vote for their favourite presentation, and the winner receives a £1,000 grant from the PHA UK to help further their research. This time the prize went to young researcher Renzhi Su, for his presentation titled Gene Ontology Curation and Multi-omics Analysis in Pulmonary Hypertension. It sounds important, but what does it really mean?

We caught up with him to find out…

“Yes, the database we’re working on is open-source and accessible to everyone, which can help all researchers, not just those focused on PH. It’s especially helpful for studies using high-tech methods like sequencing and proteomics, as it clusters genes based on their functions.

The ultimate goal of our research is to identify new ways to treat PH by studying these gene clusters, especially those related to metabolic functions. This could lead to discovering new therapeutic targets for patients.

We’re mainly focused on idiopathic PH, which has no clear cause, making it more challenging to understand and treat.

My work might influence PH research worldwide by providing a more complete database to guide further discoveries.”

Congratulations on being voted best presentation, Renzhi. Can you sum up what your study involved?

How did it feel to find out you’d won the PHA UK-sponsored prize at the forum? And what’s next for you in research?

“My work was focused on curating existing experimental evidence into what’s known as a ‘bioinformatic database’ This is to systematically analyse new experimental data from PH researchers worldwide and this data is specifically related to PH and muscle physiology.

The team and I searched for relevant studies and curated the data to help scientists explore gene relationships, like whether certain genes are connected to muscle functions in PH patients.

It’s a little bit like creating a dictionary.

Our research uses human tissue samples, especially focusing on the PPARG gene. The PPARG agonist Rosiglitazone [an agonist is a chemical that activates a receptor to produce a biological response] is approved to treat type 2 diabetes.

Our group found that it may be a side downstream target of Treprostinil (an approved PH drug), to provide extra benefits.

[A ‘side downstream target’ refers to a biological molecule or pathway that the drug affects indirectly, often as a secondary or unintended consequence].

We found that PPARG could be significant in PH, but there wasn’t much known about it, so we’re using multiple scientific methods to study this gene in PH patients. We're building a large biobank of human samples to aid in our research.

A key part of our work is ensuring the data is fully curated.

If it's not, valuable information could be missed, leading researchers down the wrong path. This is why we started curating the data—so that no critical information is left out.”

“It was a surprise to be recognised for the best presentation, and it was encouraging to see people take interest in it and share their ideas afterwards. It's very important to me get feedback from researchers in this field.

I’m excited to continue this work and maybe even go to more conferences, using the prize to further my learning.

In terms of my career, I’d like to continue working in PH research, because as a rare disease it’s both challenging and rewarding. I hope to contribute to solving some of the unknowns in PH, especially for idiopathic patients. While the research might take time, I believe there's a lot of potential to make a difference.

I believe patients and their families should feel hopeful, even though we don’t yet have all the answers. It’s important to keep working towards solutions, and I’m optimistic that progress will continue.”

It sounds like your study will have worldwide benefit to research. How will it eventually impact patients?

Renzhi is a PhD student at University College London (UCL) and he completed his research with Great Ormond Street Children’s Hospital.

EMPHASIS ISSUE 1 / 2025 _PAGE 53

Adaptive fashion at a more accessible price Because shouldn’t we all be able to enjoy stylish clothes if we want to? the end of 2022, we published an emPHasis interview with adaptive fashion designer Victoria Jenkins, who explained how her clothing brand ‘Unhidden’ was specifically for people with health conditions – taking into account mobility problems, swelling, Hickman lines, and more.

Because everything had to be made to order, the beautiful pieces ranged from a pricey £55 for a top to £90 for a dress. Now, a new collaboration with budget high-street chain Primark has enabled mass production, allowing Victoria’s adaptive clothing to be much more purse-friendly.

The range launched in Primark at the end of January and includes 49 pieces for both women and men, including shirts at £16, jeans at £14, jumpers at £24, and trench coats at £40.

The collection’s adaptive features are designed to make dressing simpler, from magnetic zippers and snap fastenings to waist loops that help to pull up trousers and hidden openings for lines, tubes, stomas or catheter access. There is also a range of options for people who are seated, such as wheelchair users.

Designer Victoria, who lives with a paralysed stomach, diseased digestive organs, and chronic pain, said she felt ‘incredibly proud’ to see adaptive fashion finally come to the high street on such a scale.

“Disabled people face lots of barriers in their lives and clothing shouldn’t be one of them”, she added. “We don’t want to live in a uniform of jogging bottoms and t-shirts but often don’t have a choice.

I hope this launch is a step in changing that narrative, bringing more choice to the high street and inspiring the industry to continue moving toward greater accessibility and inclusivity for all."

“It’s an incredibly proud moment to see this collection go live and see adaptive fashion come to the high street on this scale for the first time.”

Victoria Jenkins Founder, Unhidden You can read our original interview with Victoria by clicking here and clicking through to page 47.

PAGE 54_ EMPHASIS ISSUE 1 / 2025

How do you make fashion work for you?

Tell us about your special finds, tips or tricks by emailing media@phauk.org and we’ll share them in the next issue of this magazine.

A survey commissioned by Primark in partnership with the Research Institute for Disabled Consumers (RiDC), shows that three quarters of disabled people (75%) find it difficult to get accessible clothing. Seven out of ten (70%) of those surveyed state they must spend more on clothing that meets their needs while 80% say they feel excluded from buying fashionable clothes.

Some of the adaptive clothing now available in the range.

Image © Primark

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Click here to leave your feedback via our online form (where you can remain anonymous if you wish).

You can also email feedback@phauk.org EMPHASIS ISSUE 1 / 2025 _PAGE 55

Healthcare on the high street Are you making the most of it?

Access to GPs is becoming increasingly challenging, but in many instances, your local chemist can provide the help you may need.

Pharmacists are highly qualified, accessible without an appointment, and you’ll even find them in supermarkets…

T

he UK’s network of specialist pulmonary hypertension centres provide exceptional care (as the latest National Audit of PH findings show on page 49) but there are times when you need access to healthcare closer to home – and not just for your PH. Whilst telephone advice is always available between appointments at PH specialist centres, this is not always appropriate or the best way to deal with problems.

Many people assume that common illnesses and ailments can only be treated by GPs, but pharmacists are a valuable - and accessible - source of local advice and support.

Pharmacies provide a wide range of services (explained on the page

PAGE 56_ EMPHASIS ISSUE 1 / 2025

opposite), and many are open during evenings and weekends too.

Appointments are rarely needed, and there is usually access to a consultation room for privacy. Pharmacists may offer virtual consultations by phone or video call too.

As well as offering advice, pharmacies are now able to prescribe antibiotics and antiviral medication for seven common conditions. The UK-wide ‘Pharmacy First’ service was launched early last year, and covers sinusitis, sore throat, earache, urinary tract infections, impetigo, shingles, and infected insect bites.

O W? DID YOU KN

s, you can In most case sult ther to con choose whe on rs e -p in st aci your pharm hone. or on the p

Surprised? If you weren’t aware of what your pharmacy can offer before reading this, you’re not alone.

A recent poll by the National Pharmacy Association (NPA) showed two in ten patients think only GPs can treat minor ailments, and over a third were unaware of the Pharmacy First service.

Of course, there will be times when only a GP or hospital can help – especially when you live with a condition like PH. But next time you need help or advice for a common illness or ailment, think ‘pharmacy first’ and make the most of healthcare on the high street!

DI D YOU KNOW?

Community pharmacists go through a four-yea r pharmacy degree, a yea r of pre-registration training, and must pass a registration assessme nt.

So they are very highly qualified!

Getting the right pharmacy advice when you have PH Consultant pharmacist Dr Neil Hamilton of the Sheffield Pulmonary Vascular Disease Unit has produced this guide to help you get the right support and advice when you need see a pharmacist: Getting the most out of your medicines

You can ask your pharmacist about any prescription or over-the-counter medicines you're taking. This is especially useful if you have concerns about side effects, if you're worried about not taking your medicines correctly, or if your medicines don’t seem to be helping much, for example.

To help you understand the medicines you take, if you're in England, Northern Ireland or Wales (though not Scotland), you can ask for a free 20-minute consultation called a Medicines Use Review. This is a great chance for you to ask questions about your medicines; learn more about the medicines you take and how they work; discuss any worries you might have; or ask for help to overcome any problems you may be experiencing, such as difficulties taking your medicines or side effects.

If you live in England and you've been prescribed a new medicine for the first time for asthma, COPD, type 2 diabetes, hypertension, or antiplatelet / anticoagulant therapy, you can also ask your pharmacist about the New Medicine Service.

This is very relevant to patients with PH as so many will be prescribed medicines from these categories, especially inhalers and anticoagulants (blood thinners). This free service is a

chance to work with your pharmacist during the first few weeks of taking your new medicine to have any questions answered and to iron out any problems you're experiencing.

Inhaler technique

Your pharmacist can check that you're using your inhaler(s) in the best way possible to ensure your medicine is effective in helping you to manage your asthma well.

Even if you started the inhaler in a hospital bed, there’s a chance you haven’t been shown how use it correctly. Like any tool for any job, inhalers will help you best if you are an expert in the technique of using them. In addition, there are so many different types to learn.

Think your inhaler technique is fine?

You might be surprised. Even if you've been using the same inhalers for years, you might have developed some bad habits with your technique. Lots of people aren't getting the full benefits, and a few tweaks to how you're using your inhaler may make all the difference.

If you have several inhalers and you aren’t sure what they all do and why you need the different ones, ask the pharmacist.

Need to manage your weight?

If you are retaining fluid, this could be a sign that your heart is struggling due to the high pressure in the lungs. Fluid

does not always build up around the ankles but will make your breathlessness worse. Fluid weighs heavy, so keep an eye on your weight as this will be a good marker of fluid retention. Talk to your pharmacist about your diuretics, how much is advisable to drink and tips to get back to normal weight.

Worried about side effects?

If you're worried about side effects and it's putting you off using your medicines exactly as you have been prescribed, you could be putting your health at risk.

Why not chat to your pharmacist about any side effects you're worrying about or experiencing, and get advice on how to reduce or manage them?

Get help to stop smoking

Have you decided to, or are you struggling to, quit smoking? Chat with your pharmacist to help work out a plan to make it easier. They will be able to advise you on the right products to try, as well as give you information on local quit-smoking courses and services.

Regular blood tests or monitoring

Several important medicines prescribed for PH patients need to be monitored closely with blood tests.

This may not have been well explained to you, or you may be concerned about the results and what they mean.

The pharmacist will be able to explain what tests are needed and why.

DI D YOU KNOW?

Pharmacies are now ab le to prescribe antibiotics and antivirals for seven common conditions.

EMPHASIS ISSUE 1 / 2025 _PAGE 57

We know the benefits system can feel overwhelming, but we’re here to walk you through Universal Credit (UC) in a way that makes sense. Whether you're new to benefits or making the switch from other support, we'll break everything down here.

What is Universal Credit?

Think of Universal Credit as a helping hand when you need it most – it's a monthly payment from the government that combines several benefits into one simpler system.

It's designed to support you through various life situations, whether you're managing a health condition like PH, working part-time, between jobs, dealing with low income or needing help with housing costs.

Universal Credit has brought together these previous benefits into one streamlined payment: • Child Tax Credit - helping with the costs of raising children • Housing Benefit - support for your rent • Income Support - for those on low incomes • Income-based Jobseeker's Allowance (JSA) - support while you're looking for work • Income-related Employment and Support Allowance (ESA) - health-related support • Working Tax Credit - extra help for working people on lower incomes

Are you eligible?

Critical points to remember

• Once you start a Universal Credit claim, your old benefits will stop – including Pension Credit This happens even if your claim isn't successful.

• Good news: Personal Independence Payment (PIP) and Carer's Allowance aren't affected • You'll receive an 'award review' letter from HMRC

£

£

You can likely claim Universal Credit if you: • Are 18 or over (with some exceptions for 16–17-year-olds) • Haven't reached State Pension age • Live in the UK • Have £16,000 or less in savings

Important changes and migration If you get a ‘migration notice’

A migration notice is your personal invitation to move to Universal Credit. Here's what you need to know: • You'll have three months to make the switch • Your current benefits continue during this period • Support is available to help you through the change

PAGE 58_ EMPHASIS ISSUE 1 / 2025

TIPS FOR SUCCESS

£

nts you submit • Always keep copies of any docume deadlines • Make notes of important dates and

The assessment typically takes around five weeks, and you can apply for an advance payment of your Universal Credit if you are in financial hardship while you wait for your first payment. This can be done through your online account or by calling the Universal Credit helpline on 0800 328 5644.

Make sure to attend any requested appointments during the assessment period.

You’ll fi inform nd detaile d Credit ation on U nivers and h al ow bit.ly/ HelpF to apply at orU

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By Shaun Clayton and Sian Richardson of the PHA UK

Extra support for health conditions

If you're managing health conditions like PH that affect your ability to work, Universal Credit offers additional support through the Limited Capability for Work element.

Here's something encouraging – if you need to appeal any decisions, the success rate can be as high as 80%!

Remember...

Everyone's situation is different, and that's completely okay! Take this process one step at a time, and don't hesitate to ask for help when you need it. Whether you're making the switch because of a migration notice or because your circumstances have changed, there's support available every step of the way.

If you need help with Universal Credit or benefits in general, there are friendly experts ready to help at organisations like Citizens Advice (www.citizensadvice.org.uk) and Turn2us (www.turn2us.org.uk). Here at the PHA UK, we’ll always do our best to help you with advice too.

.

This article was produced in December 2024. For the most up-to-date information, always check www.gov.uk.

R SA L U N I V E H E LP LI N E T CREDI 28 5644 3 0 080 EMPHASIS ISSUE 1 / 2025 _PAGE 59

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Hi Adele, thanks for being part of this series.

What’s the biggest thing you’ve learned about PH, or about yourself, since being diagnosed?

I am stronger and more resilient than I knew. I am very loved by my family and friends. Despite being told that I have a chronic life-limiting condition my life is not over. I will continue to live my best life every day and never lose hope that a miracle cure will be developed.

Where do you receive your treatment?

The Royal Brompton Hospital in London.

My life turned upside down when I was told my condition was so advanced that I had to go immediately onto epoprostenol infusion.

I really did fear that I was going to be dead within a couple of years. I couldn’t breathe or catch my breath. I would turn blue just walking to the kitchen, but since starting my treatment my life has improved.

I still turn blue but not as often, and only when I push myself too much without my oxygen on. There are so many things I can’t do now but I don’t dwell on that. I do what I can when I can, and always try to maintain my positivity.

What’s the best thing about being a PHA UK member?

Meeting other members. It is also a wonder ful source of information relating to the latest drug trials.

What advice would you give someone newly diagnosed with PH? Stay away from Dr Google. Maintain close contact with your team and reach out to other PHA UK members. Always remember you are not alone and there are others out there going through the same thing, and we are all here to help each other.

What does ‘living well’ mean to you?

Doing what I can every day, helping others, meeting up with friends, and travelling.

And finally, what makes you smile?

My family, especially my grandchildren.

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PAGE 60_ EMPHASIS ISSUE 1 / 2025

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EMPHASIS ISSUE 1 / 2025 _PAGE 61

We welcome anyone affected

by PH - including friends & families

Stronger together Be part of a 4,500-strong national support network We’re here to support people like you.

Join the PHA UK today and benefit from: • Support and advice • Helpful printed information & resources

Being part of the PHA UK also enables you to participate in important research, and our friendly office staff are just one call away when you need advice. Join our PH family and you’ll be joining 4,500 members in a unique network of support and inspiration.

• emPHAsis magazine delivered to your door • Free access to financial advice from qualified professionals via our partnership with Turn2Us • Fundraising ideas and guidance

Join FREE today www.phauk.org 0300 373 5367 office@phauk.org

And ly... final

Get involved with emPHAsis!

This is your magazine Share your PH story Tell our readers about any aspect of your journey with PH. We like to include experiences from loved ones and carers too.

Tell us your tips Found something that makes life with PH a little bit easier?

Contact us with your recommendations, findings, and nuggets of advice, so we can share them with others via these pages.

Submit a letter Want to comment on something you’ve seen in Emphasis, or share an opinion or feedback for print? Write us a letter or send us an email – you’ll find the addresses at the bottom of the page.

Send us your poems, pictures or photographs We love to celebrate the talents and achievements of our readers. Send us something that has made you smile, something you’re proud of, or something you want to share with others. This is a great way for children to get involved and see themselves or their work in print too.

Pass on a feature idea If you’d like to see a topic covered in this magazine, or you have an idea for an interview, send us your suggestions.

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Get in touch!

Contact us here at emPHAsis by emailing media@phauk.org or writing to emPHAsis, PHA UK Resource Centre, Unit 1, Newton Chambers Road, Thorncliffe Park, Chapeltown, Sheffield S35 2PH EMPHASIS ISSUE 1 / 2025 _PAGE 63

Free PHA UK publications Keeping you informed and helping you to live well with PH Our wide range of titles cover topics from medication to menopause, palliative care to pregnancy – and much more.

Click to see the full library and order your copies, or visit phauk.org/publications