My Pneumothorax Journey

Co-Produced Patient Information Leaflets for Primary Spontaneous Pneumothorax

Primary spontaneous pneumothorax (PSP) affects approximately 3,000 people in the UK each year (The Lancet, 2020). This is when, otherwise healthy lungs, spontaneously leak air into the chest cavity via a small hole or tear. The air that escapes the lung causes an imbalance of pressure in the chest cavity, which causes the lung to collapse.

Despite affecting thousands of people each year, there is little knowledge of what PSP is and what treatment options are available. The Thopaz+ digital drainage and monitoring system is a NICE recommended medical technology and currently part of the MedTech Funding Mandate (MTFM).

To increase patient knowledge and assist shared decision making HIWM were approached by NHS England’s (NHSE) Patient and Public Involvement and Engagement (PPIE) Team to develop a patient information leaflet for PSP and its treatment options. A project steering group was set up which consisted of NHSE PPIE, the Accelerated Access Collaborative (AAC), consultant respiratory physicians from two NHS Trusts and the HIWM.

To ensure PPIE was embedded in the content of the leaflet, a focus group was set up involving patients who had experienced a PSP, as well as the steering group and supporting colleagues. The leaflet was co-produced with patients, taking into account their lived experiences.

Once the co-produced leaflet was drafted, this enabled the production of a video, as well as other accessible formats including Easy Read. Based on the most commonly requested interpreter languages at the Trusts from which the consultants in steering group were based, four languages were chosen for the leaflet to be translated into. This was combined with the Census 2021 most spoken languages in the UK, other than English or Welsh.

Our two-minute explainer video illustrates the key messages from the patient information leaflet.

Patient Information Leaflets

Each leaflet can be viewed online, or downloaded as a PDF, by clicking the links below.

Patient information leaflet – English

Patient information leaflet – Urdu

Patient information leaflet – Polish

Patient information leaflet – Romanian

Patient information leaflet – Arabic

Patient information leaflet – Easy Read


These patient information leaflets would not have been possible without the contributions of the following individuals and organisations:

Steering Group members and advisors:

Accelerated Access Collaborative:

  • Nathalie Carter – Patient and Public Involvement (PPI) Manager
  • Julian Louis – PPI Project Support Officer
  • Phil Corran – Innovation Manager, MedTech Funding Mandate

Manchester University NHS Foundation Trust:

  • Dr Matt Evison – Consultant Respiratory Physician
  • Dr Chris Craig – Consultant Respiratory Physician
  • Isabel Penman – Pleural Specialist Nurse

University Hospitals of North Midlands NHS Trust:

  • Dr Martin Allen – Consultant Respiratory Physician
  • Dr Mohammed Haris – Consultant Respiratory Physician
  • Dr Moustafa Aboushehata – Pleural Clinical Fellow
  • Mariet Antony – Pleural Specialist Nurse


The project team would like to acknowledge colleagues across the country for their review and amendments on the content of this work, including members of the British Thoracic Society Pleural Specialist Advisory Group. We would like to thank Rob Halifax, Amelia Clive, Laura McNaughton, Avinash Aujayeb, Farah Shiham and Duneesha De-Fonseka. And from UHNM, Dr Mohammed Okour, Dr Anna Mowat.

Focus group members

Patients with lived experience from Manchester University NHS Foundation Trust and University Hospitals of North Midlands NHS Trust.

Asthma + Lung UK members

Leaflet production suppliers:

NHS Design Service

Easy Read Online

Word 360

Silver Lining Animations

Thopaz+ manufacturer:

Medela UK Ltd

HIWM would like to thank all those involved, especially the patients for sharing their experiences and the members of the steering group for their hard work and commitment to the project.

Find out more

If you would like any further information, please contact the programme lead:


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