Emphasis Spring 2023

SPRING 2023

Living better

WITH PULMONARY HYPERTENSION

Expert advice around exercise, mental health and nutrition

Also inside...

Recently diagnosed?

Our special feature is for you

AI and healthcare, fundraising news, personal experiences, interviews, research updates, and much more…

The magazine for members of the PHA UK www.phauk.org

NEW

e-support service Help when you need it most

Hello Welcome to the first Emphasis of 2023. I hope the year has started well, and you are enjoying the early signs of spring.

This

issue, we’re putting the focus on living better with pulmonary hypertension, and we hope you find our features helpful. Medicine is incredible, and drug therapies for PH have come a long way in the last 20 years.

At the same time, there is much we can do as individuals to take care of our general health and wellbeing.

Eating well, moving more and looking after our mental health are areas that we will be exploring more over the coming months, as part our commitment to helping people with PH enjoy a good quality of life. I’m particularly enthused about the pioneering work we are doing around nutrition, and I hope you are able to complete the survey that’s included with this magazine.

We know it’s important for our members to read the experiences of other people with PH, so I’d like to thank those who have shared their personal stories for this edition of Emphasis. Hear from Wayne and Kathy on page 12, and Maria on page 52.

Plus, you’ll find anonymous accounts

from people who live with PH and depression on page 38; along with news of a self-help programme we are developing with psychologists. Pulmonary hypertension often comes with more than just physical symptoms, and we are committed to supporting you in the ways that really matter.

I hope you enjoy this issue.

THERE IS MUCH WE CAN DO AS INDIVIDUALS TO TAKE CARE OF OUR GENERAL HEALTH AND WELLBEING

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

SPRING 2023 emphasis 3

33 Mental health

12 STARTING AGAIN

m tters

Wayne’s experiences of medical retirement, with his wife by his side

21 MOVE MORE, LIVE BETTER

Research into home-based exercise programmes for patients

CONTENTS

SPRING 2022

Support for depression and anxiety with PH

LIVING WITH PH

17

The true cost of the crisis

18

Take our advice

52

How the rising cost of living is affecting people with PH Tips for people newly diagnosed with PH

“When I’m there, I forget my problems” How Maria has been helped by her local hospice

58 Your exercise questions answered

A specialist physiotherapist tackles your queries

This magazine is printed on paper from sustainably managed sources 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.

30 ILLUSTRATING ILLNESS Drawing attention to PH through art

47 BEHIND THE JOB TITLE MEET CHILDREN’S PH NURSE ELISHA

Food for. thought..

48 How to eat well with pulmonary hypertension

REGULAR FEATURES

06 Upfront

Turn over the page for news and your letters

44 Raya’s column 55

Friendship as a young adult with pulmonary hypertension

Just for kids

THE BEST OF THE REST

24 A spotlight on the PH service 31

The results of the latest National Audit of Pulmonary Hypertension

Our new e-support service

The email ‘helpline’ to support you when you need it most

A special quiz, and a poem about PH

40 Understanding more about AI

Boxing, bake sales, knitted figures and more…

42 Full speed ahead

62 Fundraising Focus

The role of Artificial Intelligence in healthcare Why Classic Marque Sports Car Club have chosen to support our charity

Get in touch: PHA UK Resource Centre, Unit 1, Newton Business Centre, Newton Chambers Road, Thorncliffe Park, Chapeltown, Sheffield, S35 2PH office@phauk.org 01709 761450 @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...

Social sayings from Facebook & Instagram We asked, you said…

How would you describe your PH team in just one word? This is what you said on Facebook and Instagram...

"Fabulous, Kind, Caring, Amazing, Mint, Lifesaving, Outstanding, Fantastic, Passionate, Magnificent, Phenomenal, Brilliant, Dedicated, Incredible."

@Dr_Joe_Newman Absolute pleasure to co-present with Iain Armstrong, Chairman of @PHA_UK on the importance of engaging patients with pulmonary hypertension with co-designing clinical research

TOP TWEETS

@LauraEJohns Proud to wear the Pulmonary Hypertension Association logo on my darts shirt sleeve.

In memory of my amazing Dad who lost his fight to PH in 2019

🫁

@maritess_mt Yay it’s finally arrived!! Sorry but I’m looking and feeling too poorly for a proper photo Can’t wait to get reading! What a bumper of a magazine! #phighter #pulmonaryhypertension

😂

SPRING 2023 emphasis 6

💜

@itssophiemorris Seven years ago today my school friend Maddy [pictured] lost her life to Pulmonary Arterial Hypertension. She was just 20. In 115 days I’m running the #LondonMarathon for the wonderful @PHA_UK in her memory. #MilesForMads

🏃

GET SOCIAL WITH US IN THE FOLLOWING WAYS: Facebook @PULHAUK Twitter @pha_uk Instagram @pha_uk_insta YouTube @pha_uk

We love to hear from our readers. Please email media@phauk.org or write to Emphasis, PHA UK Resource Centre, Unit 1, Newton Business Centre, Newton Chambers Road, Thorncliffe Park, Chapeltown, Sheffield S35 2PH

Your letters

>Dereck Thomson Dear PHA UK,

I have just read the "A moment in history" booklet [enclosed with the last issue of Emphasis] and I feel quite worried that all the items are negative, in so much as everyone seemed to be scared of Covid-19.

If anything, I benefitted from it. My wife was furloughed as I was designated clinically vulnerable.

This meant that we spent more time together.

We actually got out more as we went walking on Bridlington seafront during the afternoon. We both lost weight and it was good.

They told my mum that I would not make two.

I am now 65 so if it is going to happen it will happen.

Being scared of an outcome is just as bad as the outcome. Being stressed about something that might happen, is almost as bad as if it happens.

>Marilyn Walne Dear PHA UK,

I felt I had to write to congratulate you on your amazing magazine. It’s colourful, easy to read, interesting and full of helpful information.

I am one of the lucky ones, having not been diagnosed with PH until the ripe old age of 71, so my heart and total admiration goes out to those who have had to deal with its effects from a much younger age.

Having said that, just as they do I’m sure, I have bad days and good days, but knowing I’m not alone in this helps enormously.

PH was just not on my radar so the information from the PHA UK (a lovely nurse from the Royal Free in London suggested I join) has been a lifeline.

I have Pulmonary Hypertension and Eisenmenger Syndrome and I believe people with this condition should try and live a stress-free life as stress enhances the disease. I can honestly say that my theory is if it is going to happen then it will happen.

Live your lives to the full. Talk to your immediate family about how you feel. You are only on this planet once, do not be a prisoner in your own PH shell.

All the love, good health, and happiness for 2023,

Dereck Hope, family, and faith in the NHS

Julia on her wedding day in 2017 with children (L-R) Chelsea, Matt and Kerry

With her grandsons I’m very lucky.

I have seen my children grow up, which I didn’t think would happen, and I now have two grandson Of course, my s. medical team amazing and have been played a huge part too.

I’m under Royal Papworth Hospital because I live and in Cambridg e, my journeys my specialist to centre have never been long.

The team there have seen my my lows, and highs, everything in-between.

They have saved was 32 years my life, and old when what I follow they say to I was told I going onto a T. If they tell had idiopath a nebuliser jump, I ask me to ic for a few years. pulmonary them how high, I would go along arterial and how many times. to my son’s hypertension. football matches with It was October a big leisure Having my 2002, and the battery so I could take my children as diagnosis a focus medication really helped. followed a there. I was in a wheelcha They have always has also year of being ir at that point me a purpose; given really breathle too, and it would be family is everythin ss. I have dragged had asthma I do sometim g. since being It was an ‘interesti out rain or shine. es imagine a child, so my doctor kept what would have ng’ time! putting it down been like without life It turned out to that, but things the nebuliser but I don’t PH, got so bad that think was helping my lungs but I couldn’t even carry not my heart, anything becauseI would change my handbag so I went onto intraven . ous medicati Eventually, a better person. it has made me on for quite after many a few years. tests, I was told that I had I see life different PH. I was a I didn’t think ly; I apprecia single mother, and about the prognosi the smallest te my children of things. I love the internet, s on were just I just ten, nine, and being out in nature, seven. Our came. My 40th took every day as it I love walking, lives were turned upside I love all the seasons… birthday, eight down. after diagnos I just have a years is, was a real different I remember perspective and I don’t my mum looking We had an milestone. think that would eightiesup on the internet be the case PH without everythin disco to celebrate themed fancy dress and it saying prognosis was happened. the g that’s ; we never thought just 18 months. get there.

I’d I started off I do what I can on tablets and These days, to give back ended up I’m on subcutan the help I’ve for had from the remodulin, which is implante eous NHS. I get involved in trials wheneve d under my skin. And r possible, although I’ve and I’ve spoken been very poorly to other patients, at times over at the request the years, I now of my clinical basically live team, about what a normal life. it’s like being on IV medicati I am very well, on.

I can look after my grandchi Hope has been huge for ldren, and me over the I can walk to last 20 years. a certain degree.

I even have I do have extreme a tattoo on pain when the my arm of a Nordic drug is re-inserte rune which d into a different means ‘hope’. site, which has to happen every You have to for me, but few weeks find things you take the hopeful for, to be rough with or grateful smooth. I’m the for, no matter still here, I’m how small. still alive, and If the sun is that’s the most shining, that’s important thing. great – but if it’s raining, Alongside With it means there the medicat might be a children in her ion, I’m rainbow, or it’s my mindset 2002, it’s good because your plants that has helped sure a few months are getting through the me watered. There before her diagnosi last 20 years. always somethin is You have to find somethin s g. g to be thankful Hope is everythi however small, for, ng. If you and hold onto have got hope, it. then there is a future in front of you.

I

My other lifeline is the wonderful care and attention I am receiving from the Royal Bath Hospital.

The cardiac/respiratory team are truly fabulous.

This winter marks 20 years since Julia was diagnosed Taylor Here, she share with PH. s meant the most what has to her over the last two decades – and why she wouldn’t change a thing …

AUTUM N/WIN

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Finally, as Julia Taylor stated so perfectly in your magazine last time, “You have to find something to be thankful for, however small, and hold on to it”.

Thank you again,

Marilyn

More UPFRONT SPRING 2023 emphasis 7

UPFRONT News, musings and more...

> Would you like to join our Research Forum?

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

We’re looking for a mix of people affected by PH - patients, and their loved ones too - who would be willing to help with these studies when possible.

You will be able to assist with most of these research opportunities from the comfort of your own home. They often involve completing surveys or questionnaires, and sometimes they may involve online or telephone chats, or focus groups.

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

If you join our Research Forum, we will send you opportunities via email, as and when they arise.

There is never any obligation to take part in any of the studies we tell you about; if it’s not for you, or not a good time, simply ignore the email and look out for the next!

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

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

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

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

SPRING 2023 emphasis 8

(this “I felt the person / people with me may be family, friends, or others) were my involved in the conversations around to ask diagnosis and were given the chance questions too”

TODAY

“I have felt involved in treatment decisions”

n Strongly agree n Agree n Somewhat agree n Somewhat disagree n Disagree n Strongly diagree

n Strongly agree n Agree Somewhat agree n Can you help us understand “I know who to ask if I have questions n Somewhat disagree or concerns about things like side effects Disagree it’s like to live with PH today? what n and dosing” Strongly diagree n agree Please spare a few minutes to complete this important survey n Strongly N/A (I didn’t have anyone with me) n n Agree staff hospital did diagnosed, were member, n Somewhat agree When Dear you valued following? give you information about the n Somewhat disagree Five years ago, we conducted the largest ever survey into the lived experiences of pulmonary Disagree n Hypertension Pulmonary The hypertension in the UK - and it is now time to see what’s changed. n Strongly diagree Association (PHA UK) impact of that survey has been huge.

Since 2017, the findings have been used to inform and remember Yes n No n Not sure / can’t nThe family / carer / friend / those who “My and influence government decisions. underpin our work as a charity, secure access to new treatments,

support me know who to ask if they

and education work PH on ofbeen effect The They have used in our collaborative work with NHS commissioners and specialist centres, questions about my treatment” / can’t remember sure Notthe No andYes they have influenced National Audit of PH, service provision, and much more.

Strongly agree It’s vital that we understand what it really means to live with PH now, so we can compare the Agree Getting financial support findings and use new evidence to influence change. This is especially important as we move out of Somewhat agree Not sure / can’t remember No Yes the pandemic and work to secure access to the best treatments and services for this disease.

Somewhat disagree If you are an adult with pulmonary hypertension, please complete the questions overleaf Disagree and return in the freepost envelope provided with this pack (no need for a stamp!) diagree Strongly

n

n

n

n

n

n

have

n n n n n n

TREATING YOUR PH 3 If you would prefer to complete this survey online, you can do so by visiting

matters to you most when it like to hear about how your www.XXXXXXXXXXXXXXX ortreatment scanning the QR codeWhat at the bottom of this page.

We’d comes to your treatment? were first options were handled when you importance, We plan to conduct a separate survey around PH in theincoming have children and order ofmonths. rank (Please diagnosed, and what your experiences the MOST IMPORTANT to you, being been The since. finding of this survey will influence so much over thewith next1five years, so it cannot be to you) and the 4 being the LEAST IMPORTANT underestimated how important your voice is today. Please take the time to share it if you can. agree Please tell us to what extent you of life Improvement in overall quality with the following statements: Reducing symptoms of PH Yours sincerely, “The choice of treatments expectancy life Increased

were explained to me”

Strongly agree n Iain Armstrong Agree n Chair, PHA UK n Somewhat agree n Somewhat disagree Pulmonary Hypertension Association UK Disagree n Strongly diagree n www.phauk.org Registered Charity No: 1120756

n n n n Lack of side effects

How satisfied are you with the homecare PH delivery company who delivers your medication? as (This will be Sciensus (formerly known Pharmaxo, Healthcare at Home), Polar Speed, Clinical Homecare) Lloyds Pharmacy Healthnet, or Complete this survey online

SUMMER 2021

Sign up to our monthly e-newsletter!

Fancy the latest PHA UK news direct to your inbox?

Our free monthly digest contains notifications, links to advice and resources, and updates from the world of pulmonary hypertension.

Sign up now at www.bit.ly/PHAUKmonthlydigest

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

“Written anonymously in first-person diary form, this is a true story of what it really means to be a carer.

Focusing on the author’s experiences of looking after elderly parents, it’s both humorous and sad – and very relatable. Pick this book up if you need a reminder that you’re not on your own.”

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

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

PET

The magazine for supporters

POWER FOR PH Our new

summer fundraiser

of the PHA UK www.phau

k.org

Ask the experts Your pulmo nary hypertension questions answered

Understanding

ICU delirium Real life experiences & professional advice

Plus...

Real life stories, research news, interviews and more

“I embrace my condition like a friend” How Andrew has learned to live with PH

Missed an issue of Emphasis? You’ll find all our back editions online!

Head to www.phauk.org where you’ll find every issue of this magazine that’s ever been published.

IN YOUR own words…

“When diagnosed I was afraid and alone in hospital in the pandemic.

I didn’t understand what PH was.

A doctor gave me the PHA UK website details and the best thing I could have done was access the site. I joined as a new member and received an information pack and booklets to my home address.

The support and advice was amazing. I always describe the PHA UK as an invisible arm around me.”

Julie Bestwick, PHA UK member SPRING 2023 emphasis 9

FREE

PUBLICATIONS Driving with pulmonary hypertension

Suppor advice t and for eve ry stage o f PH

Order o www.p nline at hauk.o rg

A guide to no tify of your health ing the DVLA condition

AUTUMN/WINTER 2022 emphasis 10

You can also order by calling 01709 761450 or by emailing office@phauk.org

Online support whenever you need it With over 2000 members, our private Facebook group is a safe and supportive space to talk to others affected by PH.

No-one understands pulmonary hypertension like those who live with it.

If you have a question, or something you want to share, you’ll find people offering advice and support at all times of the day or night on our Facebook group.

To join, simply type the address below into your web browser and answer the screening questions displayed.

(Don’t worry, they are only there to ensure that your privacy is protected). bit.ly/OfficialPHAUKFacebookGroup

“One of the best things I did when I got my diagnosis was to join the PHA UK Facebook community… it gave me a place to go to help me make sense of everything and help put things in perspective. It was such a relief to find a supportive community helping each other navigate the challenges that come with a PH diagnosis.”

Jane

Are you a carer, or have you experienced loss?

We also have a private Facebook group for family members, loved ones, and anyone who provides care or support for someone with PH. Join at bit.ly/PHAUKCarersGroup If you have lost someone to PH, you can connect to others in this private Facebook group set up by PHA UK members: bit.ly/PHightingOn_LifeAfterLossToPH

When Wayne Culyer’s CTEPH symptoms worsened, he made the difficult decision to leave the job he’d been in for 38 years. Just a few weeks after he took medical retirement, we spoke to Wayne and his wife Kathy about the process, the past, and how they are adapting to a new future together…

SPRING 2023 emphasis 12

Wayne's

I

perspective

had always planned to work until state pension age. Up until four years ago, there were no problems, but since being diagnosed with PH, every year it got harder.

I was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) in December 2018 after not feeling right for a long time. I’m on oral medication, and there’s a possibility of surgery as a last resort. I’m always tired and out of breath, and I’m always cold.

Since the age of 20, I’ve worked in a factory that makes paints and varnishes, doing a lot of lifting and carrying. It was a very physical job; I would have to lift between two and three tonnes of powder a day. There’s a glass roof, so it was like a greenhouse, making it especially tough in the summer months.

When I was first diagnosed with CTEPH, I had 13 weeks off sick, luckily on full pay. I then went back on a phased return, increasing my hours gradually over a period of eight weeks until I was back to full time.

It felt alright at first, but it then started getting harder and harder.

My bosses made allowances at the beginning, for example limiting how much I had to lift, but because I looked ok - the illness can’t be ‘seen’ - they forgot about it all and it was soon back to the same routine.

They tried to move me onto night shifts and that made me really poorly.

I was in a routine with my medication, and it turned my body upside down.

My colleagues, who are also friends because I’ve worked with them for so long, could see that I was struggling.

They helped me a lot, but there was only so much they could do.

One really hot day last summer, I had a medical assessment at work which showed my blood pressure was sky high.

I told the assessor I’d been struggling to breathe because of the heat, and he said I needed a lung function test, but I’d have to see my doctor. I did, and was signed off sick.

Kathy and I had to sit down and have a discussion about what to do from there.

After I’d been off for three months, and my full pay went down to Statutory Sick Pay, my employers asked me to decide between coming back to work, or leaving on ill health grounds. Going part-time wasn’t an option financially.

In December 2022, after being on sick leave for six months, I officially left work on ill health retirement. I had come to

the decision that I just couldn’t do that job anymore. They couldn’t offer me anything other than heavy lifting, so there was no other choice.

It’s taking me a while to process everything that’s happened, but I have definitely felt better physically since finishing work. I take the dog for a walk every day, I’ve got a season ticket for my football team, and Kathy encourages me to get out to see my dad or go to the shops.

I need the encouragement, the pushing sometimes, to do something and keep my body going. I’m lacking a bit in motivation, but I think I’ll want to go out more in the summer, as I struggle with the cold.

I do feel a sense of relief after finishing work. I’m not getting up at 5am, with my body still aching from the day before, feeling unable to even get my socks on.

My advice to anyone in a similar situation to me is to talk about it. Talk to people at work, talk to your managers, and let them know how you feel and what’s going on. You can’t ‘see’ PH, so they won’t know otherwise.

And talk to your PH team for advice on it all too; they’ve been brilliant with me. I didn’t like talking to people about it, so I kept it to myself, but I wish I hadn’t.”

Kathy’s perspective SPRING 2023 emphasis 13

Kathy's perspective

“I remember Wayne coming in from work that day last summer and just saying ‘I can’t do it anymore.’

His body was telling him he was done.

It was so hard for him after 38 years in the job. It was his life, and his colleagues were like family. But his health is more important than wealth, which is what we told his employers.

Until the PH, Wayne had never had any time off – and after he was diagnosed, he wanted to go to work and remain ‘normal’. He didn’t want anything to change, but it had to.

During the hot summer of 2022, he was doing his shift, coming home, and that was it. He was done in. He couldn’t eat and couldn’t even visit our grandkids.

It was impacting everything, and it was very difficult.

We spoke to one of the nurses at Wayne’s specialist centre and she advised us to think hard about work/ life balance. But it was still difficult to let go and make a final decision.

We did have to talk about things a lot.

He’s only 58, and he’s not going to get his state pension until he’s 66. Ill health retirement has left Wayne with less than half of what he was bringing home each month when he was working.

I was made redundant last year and because I had my redundancy pay, we didn’t feel as financially exposed.

But without that, goodness knows what we would have done.

Wayne needs some time to process everything now, and we need to think about what we’re going to do as a family.

I’m looking for a new job, and we’re looking into what benefits we may be entitled to.

It’s all so new to us, but we are where we are. We’ve turned a page, and we now have to think about where we go from here. We just need to start a new chapter and look positively towards the future.”

If you’re struggling to work with PH, please speak to your specialist team for advice.

We also recommend you discuss all your options with your employer, and research what benefits you may be entitled to. This will help you make an informed decision about your future.

Scope, who strive for equality for disabled people, have a dedicated helpline offering advice about issues including employment. You can call 0808 800 3333 or email helpline@scope.org.uk You’ll find more personal experiences of leaving work due to PH at www.bit.ly/WorkAndPH We understand that you may be facing difficult decisions.

You’re not on your own!

SPRING 2023 emphasis 14

Understanding the

DIFFERENT TYPES OF PH Pulmonary hypertension isn’t a simple disease, and there are numerous different types.

This guide aims to explain more about them.

Pulmonary arterial hypertension (PAH)

In most people with PAH, it is associated with another medical condition.

Conditions that increase your risk of developing PAH include: portal hypertension connective tissue disease, e.g. systemic sclerosis HIV infection congenital heart disease sickle cell anaemia A small number of people with PH develop it without having another medical condition and for most of these people, there is no known reason behind it.

This is called idiopathic PAH and is sometimes referred to as IPAH.

• • • • •

Pulmonary hypertension due to left heart disease

This type of PH differs in that the arteries and lungs are not as stiff or thick as in the type above. The problems come from the valves on the left side of the heart, or with how the heart squeezes or relaxes. This causes blood to ‘back up’ when it returns to the lungs, raising pressure in them.

Pulmonary hypertension due to lung disease

Some people have PH due to obstructive or restrictive chronic lung diseases (like COPD or emphysema) and/or hypoxia (low oxygen levels). These conditions can cause tightening of the arteries in the lungs, which leads to high blood pressure (pulmonary hypertension) throughout the lungs.

Chronic thromboembolic pulmonary hypertension (CTEPH) This type of pulmonary hypertension is caused by chronic (long-standing or old) blood clots in the arteries of the lung. It is often referred to in its shortened form of CTEPH.

Pulmonary hypertension due to unknown causes

In some people, PH is secondary to other diseases (also known as ‘associated conditions’) in ways that are not well understood. Some of these diseases include sarcoidosis, sickle cell anaemia, chronic haemolytic anaemia, splenectomy (spleen removal) and certain metabolic disorders.

There are many others too.

Find out more about PH at www.phauk.org SPRING 2023 emphasis 15

Don't miss out on what's yours As the cost of living continues to rise, find out what financial support you may be entitled to.

Benefits Calculator and Grants Search tools now available at www.phauk.org Find out if you could access welfare benefits, charitable grants and other support that you might be missing out on.

In association with Turn2Us www.turn2us.org.uk

The true cost of the crisis At the end of last year, we launched a survey to discover how people with pulmonary hypertension were being affected by the cost-of-living crisis.

Responses were gathered in October and November 2022, and the findings demonstrate a clear correlation between soaring prices and declining health in the PH community.

You can access all of the findings, and read our report, at www.bit.ly/CostOfLivingAndPH Our survey aimed to identify specific areas in which we can help and understand how we can focus our support in the most effective way. We acted quickly to build an online hub housing advice and guidance around the areas you told us matter to you most, and we have met with other national charities with a view to using the data from this survey to add weight to their political lobbying.

We will continue to nurture these

93 KEY FINDINGS

%

of people with PH are worried about the cost-of-living crisis having an impact on their physical health.

33 %

of people who take oxygen for their PH have reduced how much they take because they are concerned about the costs of electricity.

33 26 %

of people with PH feel their disease symptoms have worsened due to the increasing costs of living.

collaborations and ensure your voices are part of the calls for help and reform.

Thank you to everyone who took part in our survey.

%

of people with PH say they are eating less healthily in order to save money.

Visit our cost-of-living support hub

Access advice now at www.bit.ly/CostofLivingSupportHub or scan the code on the right with your phone SPRING 2023 emphasis 17

Take our

advice...

Newly diagnosed with PH? These experts – made up of medical professionals, and patients too – have some helpful words of wisdom.

Dr John Wort Clinical Lead for Pulmonary Hypertension, Royal Brompton Hospital “One of the things I always say to a patient who is newly diagnosed, is not to believe all they see on the internet. Don’t always believe Dr Google! Inevitably, you will hear lots and lots of bad things, but what I can say for certain is that during the time I’ve been looking after patients with pulmonary hypertension, there have been massive improvements - using the drugs we have already - in terms of how long patients live and the quality of their lives. There are also new treatments coming through that are really exciting, so I always try to be optimistic when I speak to someone newly diagnosed – and I honestly believe that.”

“There are good days and bad days – don’t give up”

Linda

“Embrace the life changes you will need to make and remember life is not over”

Myra SPRING 2023 emphasis 18

"Listen to your own body, you know it best”

Paula

“Take things one day at a time”

Roy

Dr Mark Toshner PH Consultant, Royal Papworth Hospital “There’s a lot of information out there and sometimes it can be overwhelming, so I think my primary advice would be to be clear on who you trust. That may be the team that’s looking after you, or the PHA. Think about how you want to be communicated to.

I’ve been a patient myself and I know that we [as doctors] don’t always get it right, but if you don’t tell us then we don’t learn and we don’t know.

The specialist PH service is really good in the UK, and it will be responsive to what you want and what you need.”

“Don’t bottle anything up; talk to friends and family”

“Be patient, and if the first medications don’t help, trust the next option might be the one for you”

Shelley

Dr Nina Karia Royal Free Hospital “It’s a lot to take in when you get a diagnosis, so write your questions down, because when you’re in a consultation and you have all of this information thrown at you, it’s really hard to think of those questions at that point. Stop your physician talking if you need to, let it digest, and seek support – that’s the most important thing I can say.”

Tricia

“We're all different with different needs, boundaries, circumstances. One person's experience won't automatically be yours. Lean into others for support and understanding but live your own journey”

Jo

“Read everything your hospital gives you”

Chris

“Ask lots of questions and if you are still not sure, ask more”

Isla

SPRING 2023 emphasis 19

Take our

advice...

Paul Sephton PHA UK team member and former Clinical Nurse Specialist in PH “Remember that the Clinical Nurse Specialists at your centre are there to help you, so never be afraid to contact them. Ask any question at all (there is no such thing as a silly question!) and use them as a sounding board or to seek reassurance if you need to.

If you need to leave a message, someone will always contact you back. It’s important to understand that you’re not on your own, and there is a team of people around you for whatever you need.”

“The specialist teams are amazing… trust in them”

Julie

“Try not to assume the worst; there are so many ways that you can be helped”

“It is normal to feel overwhelmed, we all felt that way at the beginning!”

Andrea

Judith Wendy Gin-Sing Pulmonary Hypertension Nurse Consultant, Hammersmith Hospital “Learn about your type of pulmonary hypertension so that you can make informed decisions about treatments that might be offered to you, and what you can do to help yourself. The PHA UK have excellent resources and if you don’t understand something ask your PH team, especially the nurses.”

SPRING 2023 emphasis 20

“Diagnosis is not the end.

Live your best life, embrace all that you hold dear.

Push yourself, push your limits, make memories, make every day count”

“Read the resources from the PHA UK – much better than using a search engine!”

Jane

Kate

“Be prepared to adjust your mentality around what you can and can’t do and be certain to take any prescribed medicines as directed – a weekly / daily pill box can be very helpful”

David

Move more, live better: How home-based exercise can help people with PH Working with the National Pulmonary Hypertension Unit at the Mater Hospital in Dublin, Clinical Exercise Physiologist Dr Ciara McCormack led an important study to test how safe home-based exercise programmes are for people with PH. The results provide further evidence that moving more can improve quality of life, as Dr McCormack explains over the page…

About the study The trial involved recruiting 20 people with stable pulmonary hypertension to take part in home-based exercise programmes designed

by Dr McCormack. Each participant was provided with a stationary exercise bike, a Fitbit watch, and logbooks to track their exercise.

At the start, they were asked to perform six-minute walk tests and sit-to-stand tests via video link, to assess their baseline fitness level.

Exercise programmes were then developed for them as individuals.

Activities involved aerobic exercise using the indoor bike (and walking outside if desired), plus strength and resistance exercises such as sit-to-stand repetitions. They were given respiratory (breathing) exercises too.

Participants were able to follow online exercise videos and they had one-to-one health coaching sessions with Dr McCormack via video-link.

The programme lasted for ten weeks, and participants were asked to complete six-minute walk tests and sit-to-stand tests again at the end.

They also completed the EmPHasis-10 quality of life questionnaire at the beginning and the end, so that changes in both physical fitness and quality of life could be measured.

READ OUR INTERVIEW SPRING 2023 emphasis 21

Can you tell us more about what you set out to do with this research?

“The ultimate aim was to assess how safe and effective home-based exercise programmes are for people with pulmonary hypertension.

I’d visited a major exercise trial in Germany a few years ago, where patients stayed in a hotel and did everything in-person, but this was about taking things out of the clinic and bringing the programmes to patients at home.

As part of the planning, I carried out an extensive literature review to understand the difference between inpatient and home-based delivery, and what barriers there may be. I also carried out many interviews with patients to understand their exercise knowledge and experience, and how they felt about it.

It was important to me that the trial was patient-centred, and that it was underpinned by behavioural change techniques.”

Your study coincided with the onset of the COVID-19 pandemic.

Can you tell us what that meant for the programme?

“Whilst the majority of the programme was always going to be home-based, the initial plan was to bring patients into the National Pulmonary Hypertension Unit for face-to-face assessments and induction sessions. This would have given them the opportunity to meet each other too, but because of what was going on, we ended up completing the trial completely remotely.

We did the assessments remotely, and used apps and phone calls, and delivered programme materials via the post.

In some ways, the timing worked well for participants. Patients who lived on their own found it really nice to have someone to talk to via the coaching sessions, during that particularly tough time.”

Can you sum up the key findings?

Dr McCormack completed the research as part of her PhD studies. She is pictured here at her graduation.

SPRING 2023 emphasis 22

“The study showed that the home-based exercise programmes were safe and there were no adverse effects. There was nothing to report in terms of patients experiencing any severe symptoms during the trial, which was our key outcome to take away.

In terms of feasibility, we looked at the demand – how many patients signed up to and then stuck with the programme, how many engaged with their coaching sessions, and how many adhered to their exercise plan.

All but one of the participants completed the ten-week programme, and 94% adhered to the exercise plans, so the retention and adherence

rates were both really high.

We also collected a number of outcome measures to look for improvements in fitness levels, quality of life, fatigue, and attitudes towards exercise.

We saw significant improvements in all these things across the board, which was an extra bonus.

Participants increased their light intensity physical activity (which might be a very low intensity walk around the house) by almost 17%.

And they improved their moderate intensity activity (for example, a brisk walk) by 154%. This was all in just ten weeks!

The takeaway from this is that it is safe and achievable for people with PH to work at that moderate intensity level.

It’s really positive that patients were able to improve so much by following a home-based programme in their own time.”

The findings clearly show physical improvement in terms of fitness.

Did quality of life improve too?

“When I spoke to patients about their thoughts on completing the exercise programme, the big thing that came back was how it was something that took away from the burden of living with PH because it was something they could do for themselves.

It was an opportunity for them to do something to improve their own lifestyle, and to be in control, and they really liked that.

For some, their goal was to be able to hoover their own living room. For others, it was to be able to go out for a walk. They wanted to achieve these things, and they did.”

“The programme has shown me that my body is capable of a lot more than I ever thought. In all my years living with PH I have never felt this in control, or this confident in my body… The benefits of exercise should be told to patients from onset of diagnosis, instead of them living in fear of being active. Although my PH is incurable, this programme has offered me a new lease of life that I will be forever grateful for.”

Feedback from a study participant

What other feedback did you receive about the experiences of exercising?

“It was important to the participants that the person supporting them through the programme was knowledgeable about PH, and that they understood the condition.

They really valued this.

Participants told us they enjoyed learning how to incorporate exercise into their routine, and they liked using a Fitbit because they could track and monitor their own exercise and self-assess their improvements.

This helped to empower them, and they felt more confident. It improved their attitude towards exercise, which was a really important finding from the trial.

Patients valued being able to exercise at a time that suited them; based around energy levels, medication times, and family and life commitments.”

You are passionate about the power of exercise and the difference it can make to those living with PH. What are the key things you want people to understand?

“I think that it is really important for patients to understand that there is

really concrete evidence to show that exercise is safe for those who are on stable medication.

We know that it can help improve their symptoms, and we do encourage them to become somewhat breathless through exercise.

Exercise is not a replacement for drug therapies, but it’s not just about ‘surviving’ with PH. Quality of life is so important, and patients want more from their treatment and their care.

We have definitely seen a shift [in healthcare and research] towards wanting to develop more around exercise - and nutrition and psychological support too - and that is really exciting. Things are moving and there is work being done towards services in these areas, which is very encouraging.

In the meantime, there are many ways that you can build physical activity and exercise into your day if you PH. The word ‘exercise’ can be quite overwhelming, but just reducing the time you spend sitting down is important.

It can be as simple as walking around during ad breaks on the TV, or marching on the spot while the kettle boils. You might think ‘that is going to do nothing’, but breaking sedentary behaviour is really beneficial.

Always speak to your PH specialist before significantly increasing your physical activity.

Finally, it is important for me to say that although my study included exercise bikes and Fitbits, they are just nice shiny ‘extras’. They are absolutely not what you need to get you started with exercise. All you need is yourself, and the drive to do it.”

Dr McCormack presented her study findings at the European Respiratory Society International Congress in Barcelona in 2022 (pictured).

She also presented the findings at the National PH Research Forum, a gathering of PH researchers and clinicians, at the end of last year. Her presentation was voted the best of the day, securing a £1,000 grant sponsored by ourselves at the PHA UK. Dr McCormack will use the grant to collaborate with other specialist centres in the UK, with a view to assessing current exercise provision and how home-based programmes may be implemented.

SPRING 2023 emphasis 23

Spotlight on the national PH service

96%

95%

TARG ET

of patients referr e a specialist centr d to e diagnosed with were in 6 months.

And 76%

were seen or disc harged within 30 days – the be st performance since standards began ! The target was 50% .

"Despite the challenges that the NHS faces, the National Audit of PH once again demonstrates that the UK provides high quality care for people affected by PH. What makes the audit so unique, and impactful, is the contribution that patients, the PHA UK, healthcare professionals and commissioners have made to ensure that the audit standards reflect what is important to people affected by PH." Professor David Kiely, Lead Clinician, National Audit of PH

SPRING 2023 emphasis 24

Key findairentakgens

e The statistics her ational Audit from the 13th N yper tension, of Pulmonary H 2021-22. They using data from aluation of represent the ev ational level. standards at a n

93%

95%

TARGET

of patients received a ation right heart catheteris gs before being given dru to treat PH. on the 13% This is an increase of previous year!

“Our specialist centres are jewels in the crown of the NHS, and as this audit shows, they continue to provide outstanding care.

Patients and their loved ones should feel very encouraged by the findings of this report, which provide further assurances of the standards of treatment and support provided by their PH teams.”

Dr Iain Armstrong, Chair, PHA UK

✓

✓

The National Audit of PH (NAPH) sets out to measure the quality of care provided to people who are referred to pulmonary hypertension services in Great Britain. Data is collected from all the centres in England, and from the Scottish Pulmonary Vascular Unit in Glasgow.

92%

90 %

TARG ET

of patients who ha at least one consu ve had in the last year h ltation a an EmPHasis-10 ve had quality of life score record ed.

Here at the PH

A UK we champi oned the introduction of this standard be cause quality of life is so important.

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

Here at the PHA UK we also continue to support the audit on behalf of the patient community, after funding its first year. And every year we bring you the key findings in a clear and accessible way, after you told us which of the measures are most important to you.

Created in 2009, the NAPH is the largest audit of pulmonary hypertension in the world and its findings are used to inform future service planning.

✓ ✓ ✓

96%

You can view the full National Audit of Pulmonary Hypertension at www.bit.ly/NationalAuditOfPH

The latest National Audit of Pulmonary Hypertension has shown performance against national standards has returned to pre-pandemic levels – with specialist centres continuing to provide a high-quality service to patients.

95%

TARGET

g PH of patients takin ad at eh medication hav tion a least one consult months. st 13 within the la those types, including All consultation is e included in th not in-person, ar atistic. standard and st

Some of the additional findings Standard

Result

Target

New patients should be seen or discharged within 30 days

76%

50%

Patients should have a vasoreactivity study recorded before treatment (this test helps doctors

80%

80%

New patients should begin drug therapy within 12 weeks of referral

83%

80%

PH centres should record patient participation in research

29%

20%

decide which type of drugs would be most beneficial)

SPRING 2023 emphasis 25

fm

PEDALLING AND PAVEMENT-POUNDING When it comes to supporting our charity, these fundraisers are keeping it in the family

It was an easy decision for me to honour Joan with

this challenge

When Chris Spindler set himself a year-long running goal in memory of his mother-in-law, he settled on a meaningful mileage. The father from Chester is aiming to complete 666 ‘because it might feel like hell’ – but he admits he’s looking forward to it too. We caught up with Chris and his wife Sam to find out more about the plans.

SPRING 2023 emphasis 26

Joan

familymatters

Joan with her grandchildren Noah and Rohan in 2017

Chris...

I

've been running on-and-off for a few years and when I was really into it a few years ago I managed to get to 560 miles in seven months before I got injured – so I wanted to up my target.

Also, it might feel like hell at times, so 666 is appropriate!

The fundraising challenge will run right through to the end of the year, and if I reach the mileage before then, I’ll just keep going.

I’ll be adding up the miles through a calendar of races, because booking organised events gives me targets to train towards and look forward to.

I love that buzz of crossing the line.

It was an easy decision for me to honour Sam’s mum, Joan, with this challenge. I wanted to do it sooner, but covid impacted all the running events, and I decided that this would be the year I would do something and get the message out there about pulmonary hypertension.

It’s about raising awareness as much as raising money, and they are my two priorities.

Our eldest son Noah is 15, and old enough to take part in 10km events now, so he will be joining me for some of them. And Sam and our other son Rohan will come along to support me at the races too. I’ll be completing the Rome Marathon with my brother-in-law Ashley, and I’m really looking forward to them all.

I did my first marathon last year and said I’d never do another, but the very next day I found myself entering again.

I’m not sure what I‘m going to enjoy most about the events – crossing the line, or the double burger I’m allowed to eat afterwards!”

Sam with her brothers and parents

Sam...

W

e lost our mum in July 2018. She’d been poorly for some time and had chest and breathing difficulties, including COPD, but things took a turn in January 2018, and she got worse.

She wasn’t diagnosed with PH until June 2018, and she died the following month. It was too far gone.

My mum was just lovely, the matriarch of our family. We all gathered around for ‘Nanna Joan’s’ famous Sunday dinner every week without fail. She loved it.

She doted on her grandkids, and she was the biggest part of all our lives and our tower of strength. She did a lot for other people; she worked with children with profound learning needs, and she used to send parcels of goodies and letters to soldiers serving abroad as she never wanted any of them to be without home comforts. She was the most selfless person you could ever meet.

I think it’s brilliant that Chris is doing this challenge. He’s very determined and will keep pushing because that’s the type of person he is.

He could have picked other charities that are close to his heart, so I think it’s amazing that he’s chosen the PHA UK. We’ve donated before and we try and raise awareness, because people don’t understand PH, so it’s so good that he’s spreading the message.

If my mum knew what Chris was doing, she would think he was nuts.

But she’d be behind him all the way and she’d be telling everyone she met about his challenge.”

You can sponsor Chris at bit.ly/ChrisSpindlerPHAUK

Some of the 2023 events Chris is planning to clock up the miles in: Chester 10km, half marathon and full marathon Rome Marathon London Marathon Warrington 10km Manchester Half Marathon Great North Run Media City 10km Aintree 10km

Chris and Sam with their children

Read about Colin’s cycling challenge over the page...

SPRING 2023 emphasis 27

fm

If I can give something back,

Iwill do SPRING 2023 emphasis 28

familymatters At the age of 74, Colin Ayrton is set to cycle almost 1200 miles from Land’s End to John O’Groats. More than a personal challenge, he is raising money for the PHA UK in support of his wife Carole – who has had PH for 13 years. Colin, who will set off on 4th May, tells us what the ride means to him.

I

've been into cycling for a number of years, and I regularly go off alone in our little motorhome to do a few days at a time. I’ve completed routes including the Coast to Coast and the Way of the Roses, but I was looking for another challenge.

I’ve always wanted to do Land’s End to John O’Groats, which goes from the most southerly tip of England to the most northerly tip of Scotland.

The PHA UK has been so good and given so much to Carole, that I decided to turn the challenge into a fundraiser because if I can give something back, I will do.

I’m aiming to cover 55-60 miles a day, which is a typical weekend training ride for me now, so I expect it will take me about 20 days. The bike I am riding has a small battery, which helps takes the sting out some of the big hills, but I still have to pedal for every mile I ride.

And this will certainly be a significant physical challenge one month after my 74th birthday.

Some family will be meeting me at the halfway point, and staying at the same hotel, but aside from that I’ll be doing it alone. Given different circumstances, if Carole’s health was better, she could have followed me up in the car and stayed in the hotels with me. As it stands, she has a friend who will stay with her while I’m away, if she needs it.

We do as much as we can together, but when her health is bad, she encourages me to go off in the motorhome with my bike for a few days. It recharges my battery.

We were living in Spain when Carole was diagnosed with PH in 2010.

The initial prognosis for her was six weeks to live, then three years, and now nearly 13 years later she is classed as a long-term survivor.

We do not pretend the journey has been easy but, with support from the PHA UK and of course her amazing team of specialists in Sheffield, my wife has been able to witness the birth of a granddaughter and see her first steps, her first lost tooth and her first day at school.

In January last year she was able to attend her daughter’s wedding, making us all laugh with a great speech about the joys of raising a family. We never thought she would see or do any of these things. It's never been easy, and we’re still learning as we go along.

I’ll be doing the challenge on my own and I’ll carry everything with me on the bike. I will be using technology to automatically show people my planned route each day, so anyone can see where I am and how I’m progressing. It will all be shared on Carole’s Facebook page too.

I’m really looking forward to the ride; I can’t wait. I don’t care what the weather is and I’m quite a determined person – it will take something big for me not to do it! I’m very resourceful, so if anything goes wrong, I’ll find a workaround. I’m confident I can do it.”

“Colin is a great guy and I believe he will make it. He is very tenacious so won’t back down. As a family we are so blessed to have him, and he is so supportive not only to me but to my children and our grandchildren.

We owe more than words could say to our wonderful PHA UK and PH team, so in his heart it is a way of paying back just a little of what we owe.”

Carole Ayrton, Colin’s wife

You can sponsor Colin at bit.ly/LeJogForPHAUK SPRING 2023 emphasis 29

di a gn

sis

o

Illustrating illness

m

a cc

epta

n ce

You can view more of these line drawings, and explore Kevin’s other artwork styles, by visiting www.wheesydesigns.com You can also follow him on Instagram @wheesy_designs

o n es

Kevin, who has PH and is studying for a Fine Art degree, said: “I produced these line drawings to bring attention to hidden illness, and the different stages of being diagnosed with a life-threatening disease. I wanted to create works that reflect the stages, emotions and barriers you face with such an illness.”

lo

d ve

PHA UK member Kevin McAllister is passionate about drawing attention to pulmonary hypertension through his artwork, and these illustrations are the latest in his series addressing disability, organ donation, and disease.

SPRING 2023 emphasis 30

ed

ion t a ic

E-SUPPORT SERVICE

If you would prefer to talk to us on the phone, turn to p60 for details of our Listening Line support service.

Introducing our new

support@phauk.org e • Conta im

e • Conta im

us at any t t c

Drop us a line day or night, and we’ll get back to you within two working days. Think of it as an email ‘helpline’ – here to support you when you need it most.

We know not everyone is comfortable talking on the phone, and that sometimes you need to tell us about something that’s going on for you outside of ‘office hours’. That’s why we’ve set up this new online service, to help in a way that works for you.

Our e-support service can assist you with: • Emotional wellbeing • Practical queries and problem-solving • Signposting and connections

We’re here to help whether it’s a one-off enquiry, you need to get something off your chest, or you need ongoing e-mails to support you through a difficult time.

You’re not on your own.

Please note: We are not trained counsellors, and we cannot assist with individual medical advice. Your specialist PH team should always be your point of contact for queries of this nature. For anything else, we will always do our very best to help you – and if we don’t know the answer, we’ll try and find out! Our aim is to get back to you as quickly as possible, but please be patient during busy periods.

us at any t ct

Self-help programme from the PHA UK

ARE YOU STRUGGLING WITH ANXIETY?

100% of people with PH who tested the programme said it helped with their anxiety.

This four-week self-help programme consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT), to help you take control of problematic worry and anxiety. ✓ Developed with a team of clinical psychologists ✓ Tried and tested by people with PH ✓ Complete in your own time at home ✓ Totally free of charge

“When I received the booklets, I was determined to get the best out of them.

I cannot express my gratitude enough.

The clear explanations and easy-to-use strategies to cope with anxiety have been life-changing.” PHA UK member

Request the programme at www.phauk.org or call 01709 761450

Mental health

m tters Pulmonary hypertension may be defined by physical symptoms, but we know that for many, it has a significant impact on mental wellbeing too.

Here at the PHA UK we have ongoing partnerships with psychologists from the NHS and major universities, and we collaborate on important research to produce tools and resources (like the programme opposite!) to help our community.

Over the next few pages, we hear from our partners Dr Gregg Rawlings and Abbie Stark about the latest findings and upcoming projects – including a valuable opportunity for you test a new self-help programme for depression.

SPRING 2023 emphasis 33

Mental health

m tters

Thoughts & behaviours Can thoughts and behaviours help us to better understand anxiety and depression in people with PH? A study has shown that thoughts and behaviours, as well as breathlessness, are associated with anxiety and depression in adults with pulmonary hypertension. Clinical Psychologist Dr Gregg Rawlings, who led the research in collaboration with the PHA UK, the University of Sheffield and Cardiff University, talks us through the findings…

SPRING 2023 emphasis 34

T

here are many research studies showing that people living with a long-term health condition, including pulmonary hypertension, are at a greater risk of experiencing difficulties with anxiety and depression. It is very important for us to understand the cause of this as it would help us to better identify those who would benefit from receiving additional support, such as through screening measures. It will also help improve our understanding of how pulmonary hypertension, anxiety, and depression interact with each other; and help to develop effective interventions.

We know that the way we think (also known as our cognitions) and how we behave (our behaviours), can have a positive or negative impact on our mood. For example, if I stayed inside for several days and did not speak to anyone, I know that I would likely not feel great about myself or motivated to do things that I enjoy. On the other hand, if I met up with some friends to have a chat, had a nice meal, and enjoyed the fresh air, I know that my mood and thoughts would be more positive.

Our research study set out to investigate whether symptoms of anxiety and depression are related to how adults with pulmonary hypertension think (their cognitions) and behave (their behaviours).

We re-analysed data that was collected for a previous study conducted in collaboration with the PHA UK, the University of Sheffield and Cardiff University. In this study, adults with pulmonary hypertension took part in an intervention that investigated whether a form of psychological therapy, known as Cognitive Behavioural Therapy (CBT), was helpful for people experiencing symptoms of anxiety.

Participants completed a series of questionnaires including questions about anxiety, depression, and thoughts and behaviours that have been related to mood in other people. We used data from those questionnaires for the current study.

The main findings suggest that people’s demographics (such as age and gender) were not related to anxiety and depression.

This means that anyone with pulmonary hypertension can experience difficulties with their mood and it is not just isolated to one group of people.

Difficulties with breathing were related to both anxiety and depression. This is particularly important as breathing difficulty, also known as dyspnoea, is one of the most common symptoms of pulmonary

hypertension. And, based on our study, it may be a risk factor for feelings of anxiety and low mood.

Finally, individuals’ cognitions predicted anxiety whereas their behaviours did not. In contrast, individuals’ behaviours predicted depression, whereas their cognitions did not.

These results show the importance of understanding cognitions and behaviours for anxiety and depression in people with pulmonary hypertension.

The findings can also help to guide what support is most likely to be helpful. For example, if someone is experiencing anxiety, helping that person to understand how their thinking is related to their mood, and challenging some of their unhelpful thoughts and worries, could be helpful. For someone experiencing depression, supporting them to change unhelpful behaviours may be most helpful.

A message from Dr Rawlings Many PHA UK members took part in the initial study that led to these findings, and to the production of our self-help programme for worry and anxiety.

“I would like to thank all those who took part in the study. By participating in the project and sharing your expertise and lived knowledge, you have helped us to better understand anxiety and depression in the context of pulmonary hypertension. The study findings have been published in a scientific journal and are available for people to read all around the world.

The information and experiences you shared have also helped other people

The results also add to the growing evidence suggesting that offering psychological treatments to people with pulmonary hypertension could be helpful. The mental health of people with pulmonary hypertension is an important agenda. We must continue to have such conversations to raise awareness, increase support and reduce barriers that people face when they seek help.

More research is needed to help us better understand the relationship between mental wellbeing and pulmonary hypertension, and to continue developing effective treatments that can be easily accessed.

Turn the page for details of a new study to test a self-help programme for people experiencing depression with PH.

with PH access more support, as the intervention to help people live better with anxiety, worry and panic in pulmonary hypertension has since been made widely and freely available [See p32].

We have even been contacted by researchers outside of the UK wanting to translate the booklets into another language so they can be used by people who do not speak English.

Working with the PHA UK has been a very positive experience. It is clear to see how much the charity cares about their members and strives to offer them support. It is especially inspiring to see the voices of their members help to shape the work the charity is involved in.”

Dr Gregg Rawlings is a registered Clinical Psychologist, an Honorary Research Fellow at The University of Sheffield, and a lecturer in the Division of Psychology at Nottingham Trent University.

SPRING 2023 emphasis 35

Mental health

m tters

Help to overcome depression and low mood Inspired by the ‘Overcoming Worry & Anxiety’ self-help programme, an upcoming study aims to test the effectiveness of a similar intervention for people with PH who experience depression or low mood – with the hope of making it available to all.

Abbie Stark, the Trainee Clinical Psychologist at Cardiff University leading the study, explains more…

Abbie Stark

SPRING 2023 emphasis 36

D

epression is a term that is used to describe a range of symptoms or difficult experiences such as low mood, feelings of hopelessness, negative thoughts about yourself or others, difficulties with concentration, loss of interest or pleasure, fatigue and tiredness, problems with sleep, or a change in appetite.

It is common for everyone to report some of these experiences now and again and they often improve over time and without the need for help from others such as healthcare professionals.

However, clinical depression is where someone experiences these symptoms for a longer period, resulting in a negative impact on their quality of life.

There are many studies demonstrating that people with pulmonary hypertension are at an increased risk of experiencing symptoms of depression. For example, if we asked ten people with pulmonary hypertension at random, research suggests that almost six of them would report some symptoms of depression. This means that if you are experiencing symptoms of depression, you are not alone.

There is not much research about psychological treatments for depression in people with pulmonary hypertension, and so we have set up a research project with the aim of helping people and understanding the condition better.

We have developed a self-help intervention specifically for adults with PH who are experiencing difficulties with depression.

The intervention is based on a type of psychological treatment called Cognitive

About CBT Cognitive Behavioural Therapy (CBT) looks at the way people think and what they do, and how this affects their mood.

It involves making changes to thoughts and behaviours and it can help people develop more helpful ways of coping with depression, and other mental health difficulties such as anxiety.

CBT is one of the most effective therapies for depression.

Behavioural Therapy, or CBT for short.

The intervention is made up of four booklets that individuals will work though weekly, in their own time and at home. The aim of this study is to test whether the self-help booklets are helpful in reducing depression in people with pulmonary hypertension.

Those taking part will be asked to complete a series of questions about themselves, including whether they are experiencing any difficulties such as depression and anxiety.

They will then be allocated at random to one of two groups. Group one will receive the self-help booklets, and group

two may receive the intervention later if it is found to be helpful. Having two groups is very important as it will allow us to see whether any benefits associated with taking part in the project were because of the intervention, or something else.

Participants in group one will be contacted partway through the intervention to ask about their experiences of taking part. Both groups will be asked to complete a series of questionnaires four weeks later, and then again in one month. Those in group one will then be contacted again to find out more about their experiences of the project.

I have always been interested in making a difference to the quality of life of people with mental health difficulties and long-term health conditions, and I am hopeful this research may help increase the psychological support that is available.

If you would like to know when recruitment for this study opens, please email office@phauk.org and we will contact you when the time comes (simply pop ‘Depression study’ in the subject line, no other content is needed). We’ll also be advertising opportunities to get involved via our social media channels.

Abbie is leading the study as part of her training at Cardiff University, in collaboration with Nottingham Trent University and the PHA UK. We plan to make the self-help programme available to all of our members in due course, following the outcome of the study.

If you live with depression, you’re not on your own. Please turn the page to read the experiences of other people with PH.

SPRING 2023 emphasis 37

Mental health

m tters

What depression feels like for us…

In their own words, these PHA UK members describe their experiences of living with depression or low mood with pulmonary hypertension.

I have been struggling with severe depression since my twenties, and I am now 50. For me, it causes a general lack of motivation and energy. Everything is a struggle.

Since being diagnosed with PH all of these feelings have increased ten-fold. The struggle and lack of motivation is now as much a physical problem as it was a mental one.

The thing that saved me [from my depression] was palliative care. My local hospice were just starting up their outpatient activities after covid and I was referred there, and as well as meeting some wonderful people, they did exercise classes, and other activities that I could join in with. Getting out of the house and speaking to other people has been a lifeline.

I have lack of energy and motivation, feelings of pointlessness, and sadness that life expectancy is shortened and I’ll not have chance to see the future.

SPRING 2023 emphasis 38

I’ve had CBT [Cognitive Behavioural Therapy]and I think it did help. It taught me to rest when needed and don’t overdo things on good days. I just feel like no-one understands, especially as I’m up and down with good days and bad.

I think mine was a mixture of depression and PTSD [Post-Traumatic Stress Disorder] following diagnosis of PH in 2013. At the time there wasn’t much help/ information at hand so I more or less went into a state of denial as a method of coping.

It was only when I started to have challenges at work and difficulties at home did the dark spells really manifest… profound guilt and darkness, difficulty to look forward or enjoy current moments of happiness, like the birth of my daughter.

I wouldn’t say it was purely down to PH. I had death in the family, and a toxic job and relationship, but it definitely had an impact on resiliency. I still have moments of darkness but I’m more aware of the triggers and the ways to combat it.

On a bad day I feel pretty useless and worthless. I feel frustrated by my conditions but know this will be short lived. I try to write off the day and tell myself: ‘Tomorrow is a new day, all will be well’. I had a telephone consultation with my GP [about my feelings of depression] and I decided I would practice mindfulness, and I have also returned to art which has been my saviour. Added to this I am lucky to have family who are extremely supportive.

My depression affected many aspects of my life: My work and business, my relationships, my self-care, my overall health, my outlooks, my behaviour, and my trust in medical professionals.

I tried many medications to try and control my depression and anxiety but had bad reactions to most. I have found podcasts, music and breathing exercises have helped me. I’m not over it, not by a long shot, but I’m working slowly every day to overcome the fear. I would ask anyone with PH that starts to feel down to seek help immediately as although it’s a very misunderstood disease, we are not alone.

If you need help now…

The following organisations specialise in support for mental health difficulties or emotional distress, and they can be contacted in the following ways: SAMARITANS 116 123 (24 hours a day) jo@samaritans.org MIND 0300 123 3393 (9am-6pm, Monday-Friday) DEPRESSION UK info@depressionuk.org ANXIETY UK 03444 775 774 (9.30am-5.30pm, Monday-Friday) Thoughts of self-harm and suicide can be common signs of depression. If you start to experience any of these symptoms, please speak to a healthcare professional as soon as possible.

If you live in England, you can find your local NHS urgent mental health helpline number by visiting www.bit.ly/localhelpline

SPRING 2023 emphasis 39

UNDERSTANDING

MORE ABOUT AI Artificial Intelligence (AI) is already being used in many aspects of life, and it has potential to make a big difference in the way that diseases like PH are managed too. But what does it all mean when it comes to healthcare?

We put your questions to Dr Andy Swift, a Cardiothoracic Radiologist working with the Sheffield Pulmonary Vascular Disease Unit, and this is what he told us…

code Scan this r u to watch o ift Sw r video of D e role g th discussin ulmonary of AI in p sion hyper ten

SPRING 2023 emphasis 40

"Ultimately, artificial intelligence has great potential to have a real and positive impact in healthcare."

Artificial intelligence in healthcare is essentially a way that computers can be used to replicate what we do as humans, particularly replicating our tasks. For example, there are ways of using artificial intelligence in medical imaging by using it to replace some of the drawings we make on the images, or when we try to make diagnoses from the images. This is already happening in some areas but it is in its infancy.

It can also be used with larger data to try and make predictions by looking for patterns in the images. And it could have future use in drug discovery by looking at the patterns in larger data, particularly genetic data, to try and identify new treatment targets.

AI is already being used in everyday life. Google Maps, which everyone's become heavily reliant upon, uses artificial intelligence to navigate you where you need to go. And facial recognition, which looks at images, can automatically recall what your image should look like, for use in things like security.

I think earlier diagnosis is a particularly interesting area for artificial intelligence. We know that pulmonary hypertension has quite non-specific presentation, and that can lead to a delayed diagnosis. In my area of medical imaging, AI can be used to automatically identify patterns that we might miss at an early stage, or when PH isn't the condition that's on people's minds because it's rare.

AI can also be used to analyse text.

Using natural language processing, it could review a lot of the text reports from different investigations, and from clinical histories, to identify patterns that might lead to the suspicion of pulmonary hypertension earlier than with existing technology. So, I think AI is very promising for early diagnosis.

It can also analyse much deeper, richer data from patients, such as their genetic data and all their antigen / antibody tests. Combined with imaging, this can give a more detailed picture of their condition and I think that can really help with both drug discovery and selection for trials.

Artificial intelligence can be used to free up time for clinicians. For instance,

in radiology, consultants spend quite a lot of time making measurements on images or drawing round structures, which can take up to half an hour each time. That could instead be done by AI. I think a lot of the paperwork tasks in medicine could be reduced in this way, allowing medics more time to engage with patients.

The potential advantages of AI far outweigh the risks. But AI really is a product of exactly the training data that's been given, and it will work within that remit. Therefore, if the training data is different to the exact patient who is presenting to clinic, then it might not perform perfectly. Some inherent biases would need to be looked at and considered when the technology is being rolled out, to ensure it works for everybody.

Some people may worry a little bit about privacy because AI sees large amounts of data from individuals that could be pieced together. But ethics committees and governance processes ensure that any data that’s used for training is fully anonymised.

One potential risk can be related back to Google Maps – because so many people use them so often, they may forget how to read a ‘real’ map.

In healthcare, we must not become over-reliant on some AI tools, remembering they are simply an aid.

I do not believe that AI will lead to the loss of human contact in healthcare.

I envisage it as a support for the medics to improve efficiency; I don’t see it making decisions without human and clinical insight and oversight. Computers and artificial intelligence won't ever be

able to replace the human intuition.

Artificial intelligence is already being used for lower-level tasks in healthcare, but I think in the coming years it will become much more prevalent. And from speaking to patients, they seem quite positive about the use of AI which might improve the efficiency of healthcare.

There will be a need to validate the use of AI in different medical areas, patient populations, and hospital systems, and to be sure of the positive benefits.

Once all that has happened, the rollout will be much faster.

It’s a very exciting area and it’s really helpful having patients involved in related studies. They can make a big difference by contributing in this field.

Ultimately, artificial intelligence has great potential to have a real and positive impact in healthcare.

We will let you know of opportunities to get involved in studies when they arise.

We asked our Feedback Forum members what they wanted to know when it comes to AI in healthcare, and their responses formed the basis of this interview. If you would like to find out more about our Feedback Forum, and how by joining it you can help us produce the best information, please visit www.bit.ly/PHAUKfeedbackforum

SPRING 2023 emphasis 41

Full speed ahead Classic Marque Sports Car Club have a very special reason for choosing us as their charity partner for three racing seasons…

W

hen it comes to nippy automobiles, members of the Classic Marque Sports Car Club know what can move. Their speed challenge runs on racetracks and hill climbs up and down the country, but the club care about more than just crossing the finish line.

SPRING 2023 emphasis 42

Passionate about doing good things, every three years they choose a charity to support through fundraising activities – and it’s always a cause close to their hearts.

The PHA UK is the latest organisation to benefit from this kindness, and over

£4,000 was raised for us last season alone. The partnership is now entering its second year, with members rallying together in memory of Sandra Walton, who had pulmonary hypertension.

A familiar face at Classic Marque Sports Car Club (CMSCC) events, Sandra shared her husband Nigel’s passion for motorsport and would often accompany him to races. Last year’s total in her honour was a result of merchandise sales, an award presentation dinner, and individual donations from drivers. A generous gift also came from materials and products technology consultancy Lucideon, of which driver Noor Ali is a director.

Raising awareness alongside funds is important to the club. They have a section on their website dedicated to PH and our charity, and branded stickers have been gifted by Nigel for drivers to display on their cars.

CMSCC’s newsletter and social media channels carry regular mentions of our work, and a

presentation dinner that kicked off the partnership featured an educational talk about the condition.

Nigel gave a moving speech during the event, and he has kindly allowed us to share an extract here: “My greatest comfort is to know that I have no regrets and Sandra and I created great memories as we focused on the really important details of having a fulfilling life.

My standing here tonight is definitely a direct result of her positive attitude as she was the (excuse the pun) driving force, and I mean force – as when I thought things were getting too difficult, she would always insist on us continuing to stay involved in motorsport. And when towards the end of the 2019 season

she was too ill to come with me, she forced me to come alone; suggesting that I would be letting her down if I didn’t!

Thank you to this great club for making us feel so welcome, she absolutely loved it. And thank you for raising money so that others may enjoy a longer life in the future.”

Nigel & Sandra

We are hugely grateful to CMSCC and everyone associated who has supported us during this partnership so far. We’ll be working with the club throughout this year and next, and we are currently exploring opportunities for interested PHA UK members to get involved. Watch this space…

Lucideon, who have supported our charity via the CMSCC fundraising drive, develop new materials for applications as diverse as nuclear reactors and fighter aircraft, to new shampoo formulations and better performing toilet cleaners.

SPRING 2023 emphasis 43

e Cha rli

R ay

a

p i h s d n e i r F a young (as

) H P h t i w t adu l onary up with pulm Having grown ya 21-year-old Ra hypertension, a thing or two Mynot knows . h a rare disease it w fe li t u o b a ects lumn, she refl In her latest co h dships throug n ie fr g n ti a ig v on na anks downs, and th ck lo d n a ss e illn er r connecting h fo ia d e m l a ci so friend. with her best

Since leaving school and college I’ve had so many friends come and go. Friendships come and go throughout everyone’s life, but I have definitely found that making friends was never my strong point.

I have always been really shy and was always worried about being judged by other people. Once I left school and college, I lost a lot of friends. This was mainly due to the covid lockdown as I had to shield and they just never really understood. Looking back now they actually weren’t very nice friends.

Of course, not being in school or college made making friends a lot more difficult. However due to having a social media account for my rescue hamsters during lockdown, it meant I had a few online friends that I really enjoyed talking to.

Unfortunately, a lot of them lived too far away so meeting was never possible. After the lockdown I also had quite bad social anxiety and hated talking to people in person. It took me a long time to even want to leave the house and do things other than pop to the shops.

Social media has really helped me to gain more confidence in talking to people and it is also something that I really enjoy.

When I did initially make friends through my social media channels I was very wary of telling them about my PH in fear they would judge me just like people did in school.

SPRING 2023 emphasis 44

However, one day I took the plunge and actually posted it on my Instagram story. All of my followers were incredibly supportive, and it felt amazing to not have a secret anymore.

Everyone just wanted to learn and understand. It was just so refreshing to have such a positive reaction.

I also think age played a big factor.

Most of my followers were my age and had left school so I think maturity levels were just a lot higher in general. I was no longer worried about being judged and my whole view on making friends had just completely changed.

I think In school it’s just such a pressurised environment and everyone is very focused on how they look and keeping up with the latest trends.

I’ve made so many new friends through just having the same hobbies and interests.

I have enjoyed making friends way more as an adult then I ever did in school.

Now let me introduce you to Charlie.

This person has become an incredibly special person to me. We met through my Instagram account for my hamsters as they had hamsters too.

We have been friends since the very beginning of lockdown. We were in a big group chat together and would talk every day. Now they are just one person I could never live without.

Charlie has also not had an easy ride through life, so we were able to really relate to each other in a lot of ways.

They just ‘get me’. They understand and even if they didn’t, they’d still do their upmost to be there for me.

We love talking all things hamsters, horses, and Grey’s Anatomy. We just have so much in common, it’s crazy! Charlie is just the most down-to-earth, amazing human being I’ve ever met. They have never once judged me or my PH and I’ll always be truly grateful.

They also don’t live too far away so we get to see each other pretty often, which is so lovely. Our mums love catching up with each other too! I will never be able to thank Charlie enough for just being the most amazing friend. I also know they will be reading this, so Charlie, thank you for everything. I love you so much!

Raya's column

Social media has really helped me to gain more confidence talking to people

SPRING 2023 emphasis 45

These people have all had their lives transformed by organ donation

Hilaria

Olivia

Yuri Max

Right now, more than 7000 people are waiting for a transplant to change their lives.

As an organ donor you could save up to nine lives and transform many more by also donating tissue.

Add your name to the NHS Organ Donor Register, and let your family know what you’ve decided.

Visit organdonation.nhs.uk Use the NHS App or call 0300 123 23 23 @nhsorgandonor

Behind the

job title Meet Elisha Thompson, Clinical Nurse Specialist for Pulmonary Hypertension at Great Ormond Street Children’s Hospital (GOSH) Did you always want to be a nurse?

When I was about five, I wanted to be a heart surgeon. I’m glad I stayed away from that idea!

What do you love about your job?

The families are incredible. They are some of the bravest people I have met and are always such an inspiration.

You get to build a real relationship with them, and you are quite often part of their journey, which is a privilege.

Our knowledge of PH is evolving and growing all the time, and being able to be part of that is amazing.

What does a ‘typical’ day at work look like for you?

No two days are the same – coffee is the only consistent thing!

What makes you proud at work?

Knowing that I may have helped to make somebody’s time at GOSH just that little bit more bearable or easier. Even if that means something simple like helping them with accommodation!

What makes GOSH, and its PH service, so special?

It’s definitely the whole team at GOSH,

Elisha not just within PH. It’s radiographers, sonographers, technicians, and other specialties too. We look after some very complex children, and we wouldn’t be able to do what we do, or provide the service we do, without them all.

My colleagues are amazing to work with and I am always so proud of the way they go above and beyond for patients and families.

How do you think your colleagues would describe you?

Organised, ‘gets stuff done’ and caring.

How do you relax outside of work?

I enjoy reading a lot and always have a book on the go. I find it helps to take my mind off things on my journey home.

Finally, what can’t you resist getting from the hospital vending machine?

This is a bit controversial, but I love a Bounty....

The families are incredible. They are some of the bravest people I have met and are always such an inspiration.

SPRING 2023 emphasis 47

Food for. thought..

Our regular nutrition feature to help you make the most of life

UNDERSTANDING

CALORIES

By Shaun Clayton, a certified nutritionist and Director of Membership Support at the PHA UK

I

'm sure at some point you've heard the word 'calorie', or ‘calories’, but has anyone explained what they actually are?

"They're these little pesky things that show up on food packaging and tell me how 'bad things are for me' right?"

Well, yes and no.

Essentially a calorie is a measurement of energy, similar to amps for electricity and watts for light bulbs. A calorie is what we humans use to measure the energy our bodies need to consume to function. In fact, the word calories originates from the Latin word 'calor' which translates to ‘heat’ – which is really going to help with my furnace analogy that's coming up!

The more calories an item contains, the more 'energy' it has for our bodies to use and burn to keep us going.

One method of dieting can be based on purely calorie counting.

SPRING 2023 emphasis 48

You may have seen people sitting there consuming a 2000-calorie pizza and losing weight. The reason that happens is a calorie in itself doesn't discriminate; a calorie doesn't care what it's made up of, no more than an amp or a watt does. As far as your internal furnace (metabolism) is concerned, it doesn't matter whether it's a 1000-calorie salad or a 1000-calorie takeaway; it's all just the same amount of energy.

However - and this is really important - how those calories are made up to create a meal are very different, and in turn, how your body reacts to them is very different.

Let me explain...

When I was at school a teacher asked me, "Shaun, what's heavier?

A tonne of bricks or a tonne of feathers?"

Obviously, I said bricks, I'm not stupid!

He then went on the explain how the weight (the measurement) was the same, but the contents themselves just made it very different.

It's the same with calories. If you were to throw 1000 calories into your furnace (your metabolism), your body doesn't care where they came from, as it's got energy now to burn!

What those calories are comprised of makes a difference to other things; like your hunger, your physical energy levels, your cognitive function, and even your libido.

So on one hand you might have 1000 calories of nutritious goodness

that your body will thank you for – like meat, fish, potatoes, grains, vegetables and fruits. Whilst on the other hand, you might have 1000 calories of delicious (but not so nutritious!) goodness... like doughnuts!

In the long run, your body won't thank you anywhere near as much for the doughnuts as it would for the potatoes, grains and vegetables.

Ultimately, it’s the same measurement of energy, but made up very differently – just like the feather and the bricks.

1000 CALORIES

OF POTATOES

cover in the next issue?

Is there a topic you’d like Shaun to ut food and PH? Do you have a burning question abo Email nutrition@ phauk.org

1000 CALORIES

OF DOUGHNUTS Nutrition continued

SPRING 2023 emphasis 49

Food for. thought..

One-pan mea

MAXIMUM NUTRITION WITH MINIMAL EXERTION Chermaine Kwant is a registered dietician who truly understands life with PH. After undergoing a lung transplant due to the condition, she now dedicates her time to helping people with health conditions improve their quality of life through eating well.

Here, Chermaine explains how ‘onepan meals’ could be the key to healthy cooking that won’t drain your energy…

A one-pan meal is exactly that – a meal that you can prepare in one pan. You can add all the nutrients and ingredients together, making it very easy to do.

These types of meals are good options because they cost you way less energy to prepare compared to ones that require lots of pans and different ingredients. It’s also a good way to batch-cook, so you can prepare lots of portions at the same time and put them in the freezer. Then, on the days that you feel less energetic, you can easily heat up a readyprepared healthy meal.

Some people think a one-pan meal may lack taste, but you can add a lot of flavour to anything you make.

Meals that can be made in one pan include pasta dishes. Make the sauce first, then tip in the uncooked pasta and

SPRING 2023 emphasis 50

cook it all together.

Other examples include chilli and stews, and mashed potato too. You could try mashing potatoes with leeks, adding curry flavouring, and serving with codfish, to make a wonderful meal. To make this dish extra nutritious, stir one or two eggs in when making the mash. This will also make it extra fluffy!

When it comes to one-pan meals, you can do a lot with canned beans. They are very easy, pre-cooked, and very cheap.

For example, you could use them to make a rich soup. Add them to root vegetables such as celeariac, or cauliflower, and to add more flavour and nutrition, you could use coconut or dairy milk instead of water. This one-pan soup will give you a wonderful rich meal which will also keep you warm on colder days.

If you want to make something cold with canned beans instead, I recommend stir frying some vegetables and letting them cool before adding them to the beans and some salad.

When thinking about what to include in your one-pan meal, firstly you should make sure you add plenty of vegetables to it. Ideally these would be vegetables that are currently in season.

Include a source of carbohydrate, such as rice, pasta, or potatoes. The most important thing, however, is to include enough protein. This could come from dairy, eggs, fish, meat, or vegan sources such as beans and tofu.

Combining all of these elements with some olive oil or butter gives you all the nutrients you need – in just one pot!

als

HOW DO YOU FEEL ABOUT WHAT AND HOW YOU

EAT?

CHERMAINE'S TOP TIPS FOR MAKING ONE-PAN MEALS • Cooking in one big pan can

make it heavy to move. But if you lower the amount of fluids you cook with, you don’t have to drain it and you can mash or blend ingredients directly into the pan.

• Time your cooking periods for

when you feel most energetic.

For example, if you know you have more energy in the morning, you can prepare your one-pot meal then, leave it covered, and easily heat it up for dinner.

• If you’re making a very rich

We caught up with Chermaine last year to hear more about her journey with PH and nutrition. Scan the code above with your mobile phone to watch our short video.

We’ve joined forces with Chermaine to conduct the UK’s first ever survey into nutrition and PH. Please complete the questionnaire enclosed with this issue of Emphasis and tell us about your diet, eating habits, and any challenges you face or areas you feel you need help with.

The information you provide will help us produce the right resources and guidance, and secure investment in expert support services.

If you would prefer to complete the survey online instead, please scan this code with your mobile phone or visit www.bit.ly/NutritionSurveyPHAUK

or heavy one-pot meal, eat it during the day instead of in the evening. This will give your body more time to digest it before bed.

SPRING 2023 emphasis 51

, e r e th ’m I n e h “W ” s m e l b o r p y m I forge t Maria Brook has been visiting her local hospice for wellbeing groups since last year, and the benefits have been huge.

Here the mother-of-two, who was diagnosed with PAH in 2010, explains the difference this unique type of care has made to her life.

SPRING 2023 emphasis 52

"I

’ve been struggling since covid days. I used to see friends all the time, go to clubs, and go to rehabilitation exercise.

But through the pandemic, and the first half of last year, I was stuck in the four walls of my house, still frightened to go out because of covid. It had knocked me so much, and I was still scared of mixing with people in case I caught anything.

Because I was just sitting there, all I was thinking about was my illness.

I started accessing support through the PHA UK’s Listening Line, and Paul, who I spoke to, suggested that accessing hospice services might help me.

He thought they would be a good way of getting me out, and that they might benefit me in other ways too.

Paul and my specialist centre organised a referral to the John Taylor Hospice in Birmingham, near where I live, and someone from their team came out to assess me.

Discovering the early benefits

In July last year, I started visiting the hospice. It was once a week initially, to attend a group for people with respiratory problems called ‘FAB’ (Fatigue, Anxiety and Breathlessness).

We had talks about all sorts, including what makes your mind feel frightened when you have breathing difficulties, and how to deal with it.

“It reminds me that I’m not on my own” We had talks about diet, and relaxation sessions too, and we got financial help around things like benefits. We had tea and biscuits, and I was interacting with the other group members all the time.

There was a respiratory nurse there and she was able to answer any

“Just like people within the PH service, people at the hospice will always go the extra mile.” questions and talk to my doctor for me if needed.

I felt at ease, and it took a lot of anxiety away as it’s not always easy to get a GP appointment. I felt like there was someone there to back me, and to help me. It was so reassuring, and it felt like a ‘link to health’.

Learning to live well

When the FAB programme moved from weekly to bi-weekly I began attending another group too, called ‘Living Well’.

These sessions include activities like crafting, bingo, relaxation, and meditation. We’ve had practical advice about managing breathlessness too and there is a room for treatments including massage, reflexology, and reiki. There are candles, lights on the ceiling, and it’s so relaxing. It’s unbelievable that all this is free for us. We just donate £5 for a cooked lunch while we’re there, which is always lovely.

There are all different age groups there, 15 of us in total, with different health conditions.

Enrichment, interaction, and friendship

The hospice staff encourage us not to worry, and to enjoy life. It’s helped me tremendously and it’s all down to the PHA UK because I only discovered it because of their recommendation.

Attending the hospice is such a good way of getting out of my four walls and interacting with people. I look forward to it, and even if I’m having a bad day, I still make an effort to go.

When I’m there, I forget my problems.

It stops me sitting at home worrying, and it gets me a bit more active. Going to the hospice has helped me feel better about covid risks too; for example, I’ve now got

over the fright of going into shops.

I’ve made a lot of friends through the sessions, and we have WhatsApp groups that we chat in. I’ve even gone out for lunch with one lady I’ve met there, and the hospice organised for us all to visit a pantomime together at Christmas, which was great.

Just like people within the PH service, people at the hospice will always go the extra mile. On Christmas Eve there was a knock at the door, and they delivered me a present. I was in tears, I was flabbergasted.

If hospice care has been mentioned to you, but you’re worried about it, I’d say just give it a go. You’ll probably be amazed as it may not be what you think it is. It’s not just about end of life.

For me it’s fun, informative, and it helps my mind. It reminds me that I’m not on my own and I wouldn’t want to be without it now.

"

If you think that hospice services may help you, please do not be afraid to ask your PH team about it, and discuss a possible referral, even if it has not been mentioned to you before.

Groups, programmes and services vary between different hospices; but the values of support, care and compassion are common to all.

You’ll find more information about hospice care in our bespoke publication, Palliative Care and PH. Order your free copy at www.bit.ly/PalliativeCareAndPH You can also learn more about hospices by visiting www.hospiceuk.org

SPRING 2023 emphasis 53

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provides hich hospital W e ildren 6 the care for ch hat is one of th ll W a 4 s of PH? UK ? main symptom with PH in the

Answers

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R O F T JUS

lar Our regu ction e cut-out s n re for child y PH b affected

SPRING 2023 emphasis 55

Young Emphasis colum nist Emily is 11 years old, and she ha s had pulmonary arterial hype rtension (PAH) since she was 3.

s e p o h y M 3 2 0 2 r o f

by Emily

e Gravensted

e! I hope Happy New Year everyon as holiday. you had a lovely Christm e been asked It’s January now and I’v g to get up to a bit about what I’m hopin

to write this next year.

nd Emily a he r mu m

[performing arts am really I still go to Stagecoach s been booked yet, but I ha in n ing so th les No a do I ere wh er holiday. school] every Saturday on a we go on a brilliant summ ng g tti pin pu ho are We . ing nc da thing singing, acting and we are going to do some me y ls ‘M m tel m fro Mu cts tra My ex ing do re what as yet. show soon. My group are ward , but we are not quite su for g od go kin loo ch mu ry ve Fair Lady’ and I am re theatrical fun to look ar 7 at school and then to it. I also have way mo This year I will finish ye b clu s art will be good not e performing o year 8 in September. It int ve forward to. I’ve joined th mo e doing a show in th ymore. Secondary be in the youngest year an in school and they will be to d En st We settling in. I g to go on a is becoming easier as I am ol ho summer. I am also hopin sc r days in the Easte nt to ask teachers now much more confide Vocal Workshop for a few am s) ule erc (H al in a week e minutes Holidays and do a music if I can leave lessons fiv er. summ e to with Stagecoach in the early to give me more tim I n. walk to my next lesso fun weekend with the I’ve just got back from a ol y pla am really enjoying scho Orchestra (WASTO - I Winchester Area String do and this term I get to ying music and some violin). We did lots of pla food technology and I am to WASTO every outdoors activities. I go ng looking forward to getti ve concerts at the Wednesday and will ha not the only to cook something for end of each term. That’s ght. rn. I got dinner once every fortni musical instrument I lea and I a ukulele for Christmas y am hoping to learn to pla is lots of songs on it th year. I also still play piano and sing.

I hope you all have an amazing, fun filled 2023!

SPRING 2023 emphasis 56

las At the t to w year, E end of wit rite ab mily c h h o Eng PAH a ut her ose s life lish pa ass home rt of an ign me work nt.

The Ballad of Emily an d her Pulmonary Arterial Hy pertension

By Emily Gravenstede

Early September of 2010 In a hospital in England. , Somewhere on a ward, A baby was born, And that was me right th en.

1 month in the hospital I For when I was born I w stayed, The doctor had said, as grey.

I had PPHN, But now we believe it w as PAH .

My oxygen levels were So much it was scary solow, .

The doctors tried, To bring it up high.

But ev'rything they did w as a no go.

Fin'lly the doctors gave me the all clear, So went home to Bu rghclere.

Met my sister, And I can't remember, What it was like for the first 2 years.

For around three years I Then my stamina levels was fine, decline. My parents thoubegan to ght they knew, That it was an excuse.

Until event'lly when they realised.

After many hospital visi When we felt like we ne ts and tests, I was admitted to GOSHeded a rest, The doctors said "Bosh! , " We know what's going on inside your chest.

PAH was my diagnosis, And I'll tell you it wasn't With blood tests and MRlall bliss.

My Pulm'nary levels wer s, So now I'm on medicatio e high. ns I cannot miss.

Now at the present day, My PH is controlled but won't go away. Magazine columns For people also putting I write, With their PH everyday.up the fight.

My life with PH still goes I'm cheered up by Herm on, I do athletic activity, ione and Ron. To the best of my ability And PH remains a rare co. ndition to come-upon.

Illustrations by Emily

SPRINGR 2023 emphasis 57

MORE OF YOUR EXERCISE

QUESTIONS ANSWERED

Welcome to part two of our Q&A with specialist physiotherapist Carol Keen, who has helped hundreds of people get fitter and stronger with PH. We invited you to submit your queries, and in the last issue of Emphasis, Carol advised on safety, breathlessness, and exercises to embrace and avoid.

Read on for more of her wisdom…

ired should How sore orxtercise ?

I feel after e

t feel like your it y or even feel a b muscles are ach y. It’s the body’s sore, the next da to exercise. normal response ore to warm up bef It’s a good idea icularly if you are you exercise, part ve t. Spend up to fi doing quite a lo dually moving minutes very gra lly retching, gradua yourself about, st heart rate, and building up your nd od flowing arou getting your blo you start. Cool your body before s e way afterward down in the sam u stretch too. and make sure yo u feel less sore.

This will help yo n al after you’ve bee rm o n ly ct fe er p It’s a little bit tired el fe to g n si ci er ex e do know many w t u b s, rd a w er aft

CAROL : You migh

SPRING 2023 emphasis 58

nsion lmonary hyperte patients with pu toms of fatigue. experience symp se is that your exerci If you’re finding wiped out or ry ve g in el fe u yo leaving be ards then it may fatigued afterw g think about doin that you need to g tense, or breakin something less in nks into smaller chu your exercise up little and often. and doing more of ks over a number n u ch e th e et pl Com act ercise doesn’t imp ex r u yo t a th so days a negative way. on your fatigue in ng more active Exercise and bei p to improve over time can hel tigue, but it symptoms of fa get it in the is important to the right levels and right way.

Why is walking recommended as exerci se for people with PH ?

CAROL: One of the best for ms of exercise that anybody can undertake is walking. It is free, it can get you outside in the wo rld, it is good for your mental health and psycholog ical wellbeing, and it can get you in touch with nature.

You can vary your pace wh en you walk; you can walk more briskly if you wa nt to exercise, or you can walk more slowly if yo u are out of breath and just want to be more activ e.

Being upright and moving about can also help with joint stiffness an d joint mobility.

It can help with specific pro blems like ankle swelling, which can be a pro blem for lots of people with PH. And it can help som etimes with abdominal or intestinal problems like blo ating too, which again, can be quite common.

I would really recommend , as much as possible, that people try to build som e walking into their exercise if they are able to.

If you don’t do much walkin g at the moment, start small. Start with a tin y walk and come back, take your coat off, make yo urself a cup of tea, and tell yourself you are amazing.

The next day, go a little fur ther, and gradually build up the amount of walking that yo u do.

Carol spent five years working within the Sheffield Pulmonar y Vascular Unit, with part of her role funded by the PHA UK.

You can watch Carol answer your exercise questions in our new video at bit.ly/YourExerciseQuestionsAnswered

!

Always speak to your PH specialist before significantly increasing your physical activity.

Can exercise improve your lungs?

exercise is beneficial CAROL: We know that onary hypertension. in patients with pulm prove what you are We know that it can im , and we know that it able to do functionally . improves quality of life improve the underlying What it doesn’t do, is ange your pulmonary condition. It doesn’t ch gs improve damaged lun hypertension. It doesn’t at lung capacity where th and it doesn’t increase of improve the circulation is reduced. But it does rt body is able to transpo the body; the way the oxygen around. h in the muscles and It improves the strengt do more. If you have therefore allows you to ise saturations, doing exerc reasonably low oxygen do to u yo , but it will allow might not change that d tions that you have – an more within the limita nt. that is why it is importa

ight How can I f ind the r not balance, so that I’m doing too much ?

etic, ake you feel more energ CAROL: Exercise can m u tter, and it can make yo it can make you feel be it easy to overdo it, as if feel healthier. But it is more you might want to do makes you feel good, er. and push yourself hard her try to keep up with ot Sometimes you might iasm. be general over-enthus t igh m t jus it or le op pe your yourself and manage It is important to pace n pla is, you might want to energy levels. To do th so around other activities your week of exercise – y ng on a very busy da that you’re not exercisi t completely. which might tire you ou y but do some exercise one da If you have planned to that’s e with your symptoms, you’re having a bad tim that take care of yourself on fine. Be kind to yourself, tter day comes along. day, and wait until a be anage rtant, but you must m po im lly rea is ise erc Ex and oms. Doing too much it alongside your sympt e rd can take some of th pushing yourself too ha enjoyment out of it.

ng For more on exercisi 21 with PH, turn to page

PHAUK

Specialist support from someone who understands

LISTENING

LINE

Our Listening Line support service gives you dedicated time with a PH professional to discuss your worries or concerns.

• Free and confidential • An impartial listening ear • Available to all PHA UK members, family and friends too Talking to someone who already understands PH means you don’t have to explain your condition first.

Find out more or book an appointment by emailing listeningline@phauk.org or calling 01709 761450 Appointments can also be booked via our website at www.phauk.org

Calls take place with Paul Sephton, a former clinical nurse specialist in PH. Paul has many years of experience supporting people affected by pulmonary hypertension, both in a clinical environment and as part of the PHA UK team.

“Paul’s support lifted me. He was so understanding and supportive, and it was helpful to chat with someone who knows about this disease.”

PHA UK member

This is not a formal counselling service and it is not designed to replace clinical advice from your specialist centre team.

Our websites are truly

accessible to all For many years, we’ve invested in technology that supports people with visual impairments and hidden disabilities to access our content in a way that works for them.

Our assistive toolbars will: Read the on-screen text aloud Translate words to a language of your choice

Simply tap this button at the top of each page to access these features!

Give it a try at www.phauk.org www.phocusonlifestyle.org

Display the meaning of words through illustration Convert online content into MP3 files for easy listening Generate a reading panel to reduce visual stress and improve focus Magnify text size Simplify how a webpage looks to remove distracting content

SPRINGR 2023 emphasis 61

g n i s i a r d n Fu

S U C O F

A small sel ect of the wond ion e ways you’v rful e supporting been us ov the last few er months…

Sweet sale success Clare Ledger put on a beautiful display for her coffee and cake morning, making the most of the items provided in our free fundraising pack.

Brilliantly named ‘tiPHin time’, the bake sale raised £575, and its success has inspired Clare to do it all over again.

She said: “I was blown away by the amount raised and how much awareness was spread.

It got people talking and asking questions about PH and I’m already planning to do another one, going even bigger and better”.

Pulling the punches for PH GREARTT! EFFO

SPRING 2023 emphasis 62

Kerrie Nutter raised almost £1,000 when she took part in a ‘white collar’ boxing match in support of her husband David.

She went through a rigorous training programme for the event, and shared her motivations on her fundraising page, saying: “Thankfully my husband has proven himself as a PHighter and he's now able to manage his symptoms, but others haven't been so lucky, and there is still much to be done. So, it's time for me to wear the gloves and become a PHighter too.”

SPECIAL SHOUT-OUTS • Thank you to West Leeds Eagles Rugby

League Club, who held a collection for us at their presentation evening. PHA UK member Ray Maule volunteers as a photographer at the club, and they have kindly supported us for several years.

• Husband-and-wife duo Suzanne

TH A N YOU ! K

and Tony Darbyshire are planning a fundraising luncheon this spring, where they will raise awareness of PH alongside funds.

• An open studio event by artist Lea Acres raised £130 for us at the end of last year.

Lea, who makes beautiful handmade porcelains, soaps and candles, donated proceeds to our charity in memory of her son Will.

• Busy making skydiving plans, Kenna

Stewart will take the leap this year in honour of her mother. We’ll bring you more on this next issue!

Figures for funds Talented Nicki Ross has been making and selling beautiful knitted figures for the last few months, with all proceeds kindly being donated to our charity.

Nicki was diagnosed with PH last year, and her crafty creations have included Christmas characters, scarecrows, teddies, and some very cute creatures too.

Nicki has social media accounts dedicated to her fundraising, where you can view and order her handiwork. Follow her on Instagram @nicki_pha_ fundraising and on Facebook @Nicki Pha Ross

Planning to do something amazin g this year?

££ £ s be ’ t e l

u s! bulo h a PHfor p What?

Our FREE fundra ising pack contains everyth ing you need !

Posters, Bunting, Balloons, Cake flags and ca rd Sponsorship form s, s, Dedication sheets , ‘How to’ guides Order now at ww w drop us a line at .phauk.org or office @phauk.org

When?

?

Where

ct Conta

:

, make an at re about PH FREE Find out mo tion or join us for na online do rg

uk.o www.pha

Charit Registered

6 y No: 112075

£

£ buy£a to h etrleapt

te mpti ng

me fundraising so o d to e d ci e d w if you s on 01709 761450 Please let us kno u ll ca , rg .o k u a h ffice @p m for us :-) Email o witter or Instagra book, T or tag us on Face

SPRING 2023 emphasis 63

A special gathering in

Glasgow At the end of last year, 70 patients and family members from the Sottish Pulmonary Vascular Unit gathered for an event organised by the Golden Jubilee Hospital.

Attendee Ashley Butlin put together this report of the day, which was sponsored by the PHA UK and designed to bring everyone together.

O

riginally planned for early 2020 but cancelled due to covid, the much-awaited Patient Day finally took place in 2022. The Golden Jubilee Conference Centre attached to the hospital in Glasgow was the perfect location for the day’s events.

Gathering for registration over coffee, the groups began to get to know each other prior to the start of the event, which began with a welcome from Dr Martin Johnson, Scottish Pulmonary Vascular Unit (SPVU) Director.

The opening speaker was Dr Harrison Stubbs, an SPVU Specialist Registrar who, with the aid of basic, easily-followed illustrations of the heart and lungs, took us through the causes and symptoms of PH. Even for those with a good knowledge of human physiology, this talk shed new light on the reasons for PH. The SPVU is very fortunate to have the services of a newly appointed Clinical Psychologist in Dr Klaudia Suchorab, who spoke next to outline her role within the unit.

Being given the diagnosis of PH can

SPRING 2023 emphasis 64

come as a shock to patients and their loved ones which is where Klaudia comes to the fore to offer much needed support.

Having only been appointed earlier this year, Klaudia was new to many of the delegates, but her reassuring talk gave great confidence that her appointment will be a tremendous bonus, not only to newly diagnosed patients but also those who have been treated for much longer.

Each patient with PH has a similar but different path to diagnosis and this was brought home by our next speaker, Michelle Wardrope, who took us through her journey with PH. Some of the steps were very familiar, like the scans, tests, and catheterisation followed by diagnosis. But other parts of her route were probably unique in that, having been a participant in trials, a rare gene in her DNA was identified – linked to PH that is also present in her daughter, who has also subsequently been diagnosed with it too.

A question time with a panel of SPVU experts took place prior to lunch and an

excellent meal followed, which again allowed for interaction and discussion between delegates and SPVU staff.

The afternoon sessions proved just as informative, starting with Karon Carson, an SPVU Nurse Specialist, taking the group through the thoughtful process of Anticipatory Care Planning – something few of us have probably given much thought to in the past.

Letting our family and loved ones know, as well as our medical team, what we are thinking about future choices and care will enable us to enjoy making the most of the present.

Planning in this way can also give peace of mind to family and friends, who may be unsure about our preferences.

Karon also introduced a new publication from the PHA UK called Palliative Care & PH.

Order your free copy at www.phauk.org

>

Dr Harrison Stubbs

Michelle Wardrope shared her PH journey with the meeting ahead of the question-and-answer session.

Dr Martin Johnson opened the Patient Day.

Clinical Psychologist Dr Klaudia Suchorab

From the outset she made it clear that there is a belief palliative care and end-of-life care are one and the same – they are not, they are very different!

SPVU also have a new specialist pharmacist, Emma Russell, and it was Emma who led the next session about the importance of PH medications.

Taking the group through the variety of drugs now available to treat the condition, she highlighted the need for consistency when taking the prescribed medications.

Our final workshop was taken by Val Irvine and Fiona Thomson, the SPVU Research Nurses, and looked at the pros and cons of being part of a research project. Medications and treatment of PH have advanced dramatically over the past 25 years or so, none of which would have happened without research. Likewise, future developments, ultimately aimed at finding a cure, will

require further continual research and this is where current patients can be involved.

Alongside the talks and workshops, during the afternoon patients could book 15 minutes of alternative therapy sessions, including massage, Reiki or reflexology.

This was a tremendous day put together by the SPVU team, who cannot be praised enough for their dedication here north of the border.

Unbelievably, 25 years ago, the unit consisted of just a single doctor and nurse. Today, under the present direction and drive of Dr Martin Johnson, it has grown to a department of 24 – consisting of consultants, fellows, researchers, nurses, a pharmacist, a psychologist, secretaries, and administrative staff.

Together, they currently look after 515 patients. Their dedication cannot be

underestimated. When needed they are only a phone call away and a response is guaranteed. While based at the Golden Jubilee Hospital in Glasgow, they now run clinics in Aberdeen and Edinburgh, making it easier for patients to attend.

Future clinics could well follow.

We are extremely fortunate to be supported by such a dedicated team and can only offer our heartfelt thanks to them all.

SPRING 2023 emphasis 65

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Andlly... fina

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