Dr Julie Bayley (LILI) and Mr Prakash Saha (Clinical Senior Lecturer, King’s College London and Consultant Vascular Surgeon at Guys and St Thomas’s Hospital ) are embarking on a programme of work to support vascular patients living with long term symptoms.

Post-thrombotic syndrome (PTS) occurs in 50% of DVT patients, with approximately 50,000 new patients in the UK each year. PTS is a condition commonly characterised by chronic pain, swelling and ulceration, reducing patients’ quality of life and presenting big financial costs for the NHS.

As part of an ongoing range of activities to support vascular patients, last year GSTT led a survey and number of focus groups to better understand what patients needed. The call from patients was clear – to be supported to navigate the healthcare system (which commonly doesn’t understand what it’s like to live with PTS), and to be supported to self manage the physical and psychological challenges of the condition.

Working together, Julie (who is also a PTS patient) and Prakash are collaborating to develop a new support tool, or ‘Patient Passport’, for vascular patients. The wider project team will include a multidisciplinary GSTT team and primary care expertise.

At this early point in the process, the team are inviting comments and feedback on the broad plans, particularly as outlined at the Venous Special Interest Group (15th March 2022). Colleagues and patients are invited to either contact the project leads, use the content form on this site or (the most direct option) to offer comment via this form.

Once the project is fully up and running we will establish a project webpage and share the details for those who wish to be kept updated.