Alpha-1 Alliance launches policy report in Parliament
The Alpha-1 Alliance held a Parliamentary Seminar on Alpha-1 Antitrypsin Deficiency (Alpha-1) on Tuesday, 10th December in Portcullis House.
The meeting was chaired by Mark Pawsey MP and included a panel of speakers, who discussed Alpha-1 and the medical need of affected patient. The panel included Dr Ravi Mahadeva, Consultant Respiratory Physician and Chair of the Alpha-1 Alliance, Sarah Watson and Barbara Howe from NHS England’s Highly Specialised Services Team and two Alpha-1 patient representatives.
At the event the Alliance also launched an Alpha-1 policy report. The report was informed by the first ever Alpha-1 patient survey in England and includes policy recommendations for the future care of Alpha-1 patients. To access the report, please follow the link
The seminar was attended by over 80 participants including Parliamentarians, clinicians, other healthcare professionals, commissioners and Alpha-1 patients. The Alliance was pleased to welcome a number of MPs at the meeting, including Andrew Selous MP, Alison Seabeck MP, Huw Irranca-Davies MP, Philip Hollobone MP and Yvonne Fovargue MP.
Following the seminar, the Alliance will now engage in formal meetings with NHS England to further discuss the application process for a nationally commissioned highly specialised service for Alpha-1. The Alliance will also hold a Patient Day in Parliament in Spring next year.
Source: Alpha-1 Alliance 12/12/2013