Patient Charter on Highly Specialised Technology (HST) evaluations

PID UK has endorsed the Genetic Alliance UK's Patient Charter highlighting  patients' concerns about the new approach the Government and National Institute for Health and Care Excellence (NICE) are using to determine whether or not medicines for rare conditions are made available through the NHS.

The Charter makes 29 important recommendations to improve the way medicines for rare conditions are evaluated. It emphasises the need for the process to be transparent and to take special consideration of people with rare conditions.

The purpose of the Patient Charter is to provide a reference point for the patient view on the HST process in advance of the consultation NICE intends to carry out before the end of this year. Genetic Alliance UK will be working with its members to develop a second Patient Charter looking at the other routes of commissioning and appraisal for rare disease treatments in England, in order to provide clarity and highlight gaps and inconsistencies.

You can read the Patient Charter here.

Dated May 2014