Make your voice heard

The PHA UK national patients’ survey is underway. Have you taken part yet? This is your chance to help strengthen the voice of PH patients and make sure we are heard loud and clear in future debates about NHS policy and spending reviews.

Hundreds of patients with PH are now being invited to complete a new survey about their experience of living with pulmonary hypertension.

All completed questionnaires received before 25th April 2016 will be entered into a prize draw for a chance to win one of ten £25 gift vouchers!

It is open to every adult diagnosed with PH – you don’t have to be a member of PHA UK to take part.

Chair of PHA UK Iain Armstrong says: “Our survey asks about your experience of diagnosis, PH treatment and care and also the wider impact of the condition on things like your family life, finances and mental health. It aims to gather important statistical evidence about issues such as the impact of drugs and the value of services.

“It’s a vital piece of research into what it means to have PH in the UK today. We want to secure robust information about matters such as PH patients’ quality of life, control of their symptoms, the effectiveness of drugs; experience of NHS services and other important aspects of living with PH.”

Iain says that the survey’s findings will not only help PHA UK identify its own future priorities as a support organisation; but also really help the charity to represent the interests of people with PH in future debates about NHS policy and spending reviews. “There has probably never been a more important time to make sure we are in a strong position to do this,” says Iain. “It is going to become increasingly important to make our voice heard in coming years as the hard-pressed NHS reviews its spending on drugs and investment in services.

“For example, we know right now that a potential new drug called Selexipag, which could have enormous benefit for patients with PH, is under review and an initial poorly executed draft policy, which recommends against it being commissioned by the NHS for patients, has been drawn up with very little consultation. We want to fight this and the more people we can prove that we represent and the more evidence about our disease area we can present, the stronger and better armed we will be to do this.

“Similarly, we are aware NHS England is planning a review of specialised services in the near future. We are keeping an eye on that too, and want to have as much evidence as possible to protect and enhance our worldrenowned network of PH centres.

“We will keep you posted on all such matters in future issues of Emphasis magazine – in the meantime please do complete the PH Patients Survey and add your voice to help ensure we are loud and strong enough as a patient body not to be ignored.”

This survey is focused on PH patients using adult PH services. A separate survey dedicated to children and young people with PH will be organised in future.

If you would like to take part, please complete and return the questionnaire you have received with your Emphasis magazine, or complete the survey online at www.survey.phassociation.com

Call the PHA UK office on 01709 761450 with any queries. Your survey responses can be anonymous if you choose.