“There can be numerous barriers to getting support for anxiety in PH. This could be because of long waiting lists or services not being available, or because people feel uncomfortable talking about their difficulties, or worried that their PH won’t be understood.
For these reasons, we wanted to develop an intervention that people can access immediately and complete in the comfort of their own home.
We developed the intervention with the PHA UK and other experts in PH, experts in CBT, and people living with PH and their caregivers. We took this step to make sure that the information in the programme, and strategies that participants learned, were specifically relevant to the challenges that people with PH experience.
When developing the intervention, I learned a great deal about PH from conversations with healthcare professionals, and reading books, research papers and information online about the condition. However, it has been invaluable to listen to the first-hand accounts of people living with PH and the people who support them.
In 2020, supported by the PHA UK, I reviewed the personal experiences of over 1900 adults living with PH from around the world. Among the experiences that struck me was the huge disruption that developing PH had caused people in their lives.
With this came great uncertainty, change and loss, which naturally many people found difficult. Closely related to this however was the strength and courage that was reflected in how people spoke about coping with the impact of PH. This ranged from the ongoing management of everyday activities that we often take for granted, to major life-changing decisions.
In the same way that people with PH often need to take additional measures to care for their physical health, they may also need to take more care of their mental health.
This is particularly because they are at a greater risk of experiencing psychological and emotional difficulties related to living with a long-term health condition.
I would like to take this opportunity to thank the PHA UK. Their expertise, wisdom and insight has been vital in making this project possible and successful.
I also wish to thank those people living with PH who have helped us to develop this programme. Thank you for your time and allowing us to learn from your experiences with the aim of improving the support that is available.”