Question to the Department of Health and Social Care:

To ask Her Majesty’s Government what discussions they have had with NHS England about incorporating the views of patients when they are making their decisions about the availability of medicines for the treatment of rare diseases in the National Health Service.

There are a variety of ways in which NHS England incorporate patients’ views when they are making decisions about the availability of medicines for the treatment of rare diseases in the NHS.

The Patient and Public Voice Assurance Group (PPVAG) is consulted regarding specialised commissioning matters. The membership is made up of patient and patient group representatives with a lay Chair. The Chair of the PPVAG and another PPVAG representative sit on the Specialised Commissioning Oversight Group to ensure patient and public engagement is considered in making decisions on specialised commissioning.

NHS England also hosts the Rare Diseases Advisory Group (RDAG) that feeds directly in to the Clinical Priorities Advisory Group, which makes recommendations about whether to commission services or treatments. The RDAG receives reports on all new treatments to be offered through specialised services and signs off their evaluation. RDAG has patient representatives from Rare Disease UK and Genetic Alliance UK which represent rare disease patients.