Emphasis Exchange

Life after loss to PH A new private Facebook group has been launched to help people connect with others after losing a loved one to pulmonary hypertension. This safe and supportive group has been created by PHA UK member Sally Parker and her daughter Alice, with our support. Sally's son Josh died at the age of just 21 and the group is for anyone who has experienced loss due to PH, no matter how recently or how long ago. Sally said: “We hope that this group will be a space for families and friends to support each other, to share their experiences, feelings and memories and connect with others that have experienced loss due to PH.” To join, type www.facebook.com/groups/215307796620821 into your web browser. When requesting to join this group, please make sure you answer the short questions. This is to ensure the group remains a safe and private space for all its members.

Poppy and her mum Lisa

RAISING AWARENESS THROUGH FASHION Talented teen Poppy Martin, 17, embraced her creative side by embroidering a heart and lungs onto her denim jacket in support of the PHA UK. Poppy's mum Lisa works at the Sheffield Pulmonary Vascular Disease Unit, and after hearing her talk about PH and how it affects people, she wanted to do something to raise awareness and show her support.

Save the date!

Help us put PH under the spotlight This year, PH Awareness Week will take place from 1st – 7th November. Pop it in your diary and look out for more information coming soon. We are beginning to plan our media campaign, so if you would be interested in sharing your story for PH Week, please email Mary at media@phauk.org

New patient information website for transplantation NHS Blood and Transplant have launched a new website for people to gain a greater understanding of the transplant process and make better informed choices. The online hub includes patient and donor stories, as well as the latest transplant news. It covers the six main organ transplant groups - heart, lung, kidney, pancreas, small bowel and liver. Find it at nhsbt.nhs.uk/organ-transplantation/

Cooking with PULMONARY HYPERTENSION

We asked our social media community for their top tips for making meals with PH

Sarah Marshall Buy ‘cheat’ versions of garlic and ginger that’s already chopped. Also, spread the cooking out over the day – get the ingredients out, prepare a few hours later, and cook a few hours after that.

Steffs Wallace I always make a batch when I cook, then freeze in individual portions. Then on a bad day, I can just get one out and microwave it. @busterkeaton85 The slow cooker is my best friend! Especially on days when I have plans through the day and know that I will probably be tired later on.

Paula Hartley I swear by my slow cooker. It’s great, especially in the colder months. @phightertess I get all food, utensils and pans, etc within arms length and then I sit on a bar stool whilst preparing the meals. @jo.dunbar I plan my week so I don't have to cook every day. On weekends or a day with less activity I will make enough food to last for a few days. Otherwise I would live on cereal!

Margaret Pedley I prepare vegetables at the living room table, with the TV on and my oxygen next to me. @thatguy407ss When cooking with a wok, avoid getting the steam in your face. Allow yourself to step back instead of being up against it. @susanrooneyanderson I use a crockpot and air fryer to make easy meal and get my ‘things’ together near my space. I love to cook, it makes me happy. Judith Wilding When peeling veg, I open a drawer and place a tray on it to catch the peelings, which is the right height for me.

FOLLOW US... Facebook @PULHAUK Twitter @pha_uk Instagram @pha_uk_insta YouTube @PHA ORG UK

Emphasis exchange

Trusted InformationCreator

Trust the tick for high quality information about PH At the PHA UK we are proud to be part of The Patient Information Forum (PIF) – a membership organisation and network for people working in health information and support. We’re committed to ensuring the information and resources we produce are trustworthy and of the highest standard, and we’re delighted to say this has earned us a PIF quality mark – a prestigious tick which is only awarded to organisations who follow high quality standards when producing health information. The accolade was awarded to us in April, following a detailed assessment. The PIF TICK is the only UK quality mark for trustworthy health information. Find out more at pifonline.org.uk/pif-tick Do you have any feedback about any of our information or resources? Part of our commitment to upholding our standards is to encourage and act on feedback from our members. Please contact office@phauk.org or 01709 761450.

Our flagship website has been a vital source of information and guidance through the pandemic, and we’re excited to be relaunching it with a fresh new look very soon. We’ve been busy working behind the scenes to update the content at www.phauk.org and make it easier for you to find what you’re looking for. We’re just making the finishing touches, so keep an eye on our social media channels to discover when it goes live. Our sister website, www.phocusonlifestyle.org, remains the go-to place for real life stories and experiences, videos, and advice to help you live well with PH. We want to make sure our websites can be accessed by everyone, which is why the content on both can be read aloud in 99 different languages. Just click the orange button in the top corner. A modern makeover for our flagship website FRESH NEW LOOK SOON

Flowers & family

Dear PHA UK

I wanted to share with you a photo of an ‘indoor spring garden’ that my daughter Catherine created for me on Easter Sunday as I am unable to get outside. I am truly blessed to have seen my spring flowers. I also wanted to share with you one of the poems that Catherine writes and sends to me each week to help keep me positive (below). I thought it was appropriate to go with the photograph. Thank you for your continued and devoted support at the PHA UK. Maureen Jones

Golden globes of translucent light are created through the cascading springtime showers, which are sploshing and splishing down on the patiently waiting array of rainbow flowers. So far we hope the years discombobulation is now passing as the way we have been living, what a strange silk rich threaded tapestry the present is now giving. Now what is the future that is a really crucial question to be asked, for it may not be today and it most certainly will not be the past. It will actually be whatever picture you so choose and desire, Fate may it be for some and for others a baptism of fire. See the beauty in the eye lash of the lunar against the dark inky sky, Feel the suns warmth ripple your skin and hold your head high. Love is in colour and vision pastels with fluorescence so alight, Contentment is in the palm of your hand with a future in whatever form so bright. Allow for the chaos to go ahead just lay down those encumbering paddles and embrace your rivers natural flow, Be comforted in the knowledge that your loved ones are right by your side wherever you may choose to go.

By Catherine Jones