UK and Ireland professional day

November 2016

Objectives

Discuss the current approaches to clinical care and support for PTEN/PHTS patients in the UK/Ireland and to look at ways of improving this

Outcomes

25 professionals attending from across England and Ireland, spanning specialisms across genetics, immunology, gastroenterology, cancer genetics, endocrinology. The UK patient network was also represented.

Strong desire to improve coordination of care for patients with PHTS in the UK; challenges for patients of current system acknowledged, and opportunities for improvements identified, with particular focus on

  • Improving screening guidelines – aim for national screening consensus
  • Improving coordination amongst clinical specialisms
  • Create a national care pathway
  • Formation of PTEN Cross Disciplinary Clinical Advisory Group in UK

For further information please contact Leena da Silva at ld489@medschl.cam.ac.uk