Question to the Department of Health and Social Care:

To ask Her Majesty’s Government what prioritisation criteria are used by NHS England to commission approved treatments for rare diseases.

The Rare Diseases Advisory Group (RDAG) makes recommendations to NHS England and the devolved administrations of NHS Scotland, NHS Wales and NHS Northern Ireland on issues related to highly specialised services (HSS). These services are provided to a smaller number of patients compared to specialised services; usually no more than 500 patients per year. For this reason they are typically best delivered nationally through a very small number of centres of excellence.

Examples of highly specialised services include liver transplant services, enzyme replacement therapy, and secure forensic mental health services for young people. It is also the role of RDAG to have an overview, across the four countries of the United Kingdom, on the development and implementation of the strategy for rare diseases and HSS.

The Group makes recommendations to the Clinical Priorities Advisory Group (CPAG) about how highly specialised services should be commissioned. This includes recommending which expert centres should be nominated (or should no longer be nominated) to deliver highly specialised services.

The decision making framework published on the NHS England website guides CPAG in assessing and making a commissioning decision recommendation. A copy of the CPAG Decision-Making Framework is attached.

However, NHS England is now reviewing the appropriate approach to prioritising new treatments and interventions within specialised commissioning. At the NHS England Board meeting held on 17 December 2014 it was decided that a 90-day consultation will be carried out in early 2015 on the prioritisation framework and decision-making process that NHS England should use to make commissioning decisions on new treatments and interventions.