A M
R U O Y KE
D R A E H E C I VO
Hundreds of patients will soon be invited to take part in a national survey about living with pulmonary hypertension.
T
he 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
WINTER 2015 emphasis 4
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.
association “weAsareancommitted 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.
.
