News

MAKE YOUR VOICE HEARD

Hundreds of patients will soon be invited to take part in a national survey about living with pulmonary hypertension.

The PHA UK survey, which will be launched early in 2016, aims to gather evidence about what it means to have PH in the UK today. It will ask people about their experiences of diagnosis, treatment and care and also the wider impact of the condition on things like their family life, finances and mental health.

Around 500 people participated in a similar survey carried out in 2010 and their responses provided vital information about matters such as the effectiveness of drugs; experiences of NHS services and other important aspects of living with PH.

Chair of PHA UK Iain Armstrong said: “As an association we are committed to representing the interests of people with PH, their families and carers and, therefore, it is essential that we gain a good understanding of people’s real life experiences of living with the condition.

“What we learn through our survey will help us to make informed decisions about the charity’s future spending priorities; what issues we need to campaign on; what research we need to invest in and what support services we need to provide to best meet members’ needs.

“As an association we are committed to representing the interests of people with PH, their families and carers.”

“The survey’s findings also greatly strengthen our voice with NHS clinical commissioners and so on as it provides frontline qualitative evidence direct from patients about, say, the impact of certain drugs and the value of certain services. “We would love to hear from as many people as possible in our 2016 survey – the larger the statistical group, the louder the voice.”

Details will be announced via the PHA UK website, Facebook and Twitter, as well as via the Homecare PH delivery service early next year.

People interested in taking part will be asked to get in touch and then emailed a login password to allow them to complete the online survey. Patients who would prefer to complete the survey on paper can also phone 01709 761450 and a questionnaire will be posted to them. The survey will be quick, multiple choice and with a maximum of 30 questions. It is open to everyone with PH, not just PHA UK members..

Welcome

Welcome to the winter issue of Emphasis magazine. We’ve certainly got a packed issue for you, with lots of news, views, information and advice from right across the PH community.

As our 15th anniversary year comes to a close, we celebrate our phenomenally ‘phantastic’ conference with photos and feedback on page 28. And you can also turn to the centrespread for a look back at the many drug developments we’ve seen in PH treatment over the decade and half the charity has been in existence. Plus, there is a look forward to the possible advances we may hope to see through stem cell research in future, on page 16.

The life-changing significance of heart and lungs transplantation as an option for many with pulmonary hypertension is also highlighted. Patient Stacie Priddon shares her personal experience of undergoing a double transplant earlier this year on page 18 and the UK’s world-renowned transplant specialist Professor Paul Corris, based at the Freeman Hospital in Newcastle, is interviewed on page 42.

We’ve news of a new patients guide to PEA surgery at the Papworth Hospital; a poem from PH blogger Tess Dunn; and a focus on the incredibly important National Audit of PH, to which staff at our PH centres constantly contribute information which supports the ongoing development of PH services.

Finally, clinical psychologist Vicky Kelly of Great Ormond Street Hospital gives us an expert view on an important subject we haven’t covered before in these pages; how best to support the brothers and sisters of children with PH. As we all know the impact of a chronic health condition doesn’t just affect the one person and PHA UK is committed to supporting whole families affected by the disease.

There are lots of opportunities to get involved in future magazines, so please keep in touch. And in the meantime, everyone in the Emphasis team here at PHA UK would like to share the compliments of the season with all our readers and send all good wishes for the new year.

“PHA UK would like to share the compliments of the season with all our readers and send all good wishes for the new year.”

Iain Armstrong Chair of PHA UK editor@phassociation.uk.com