NICE Systems Reviews

Page last updated new 26th April 2021

There are many strands of work going on. So far proposals and consultations that we have been part of and responded to have looked at:

  • Nice Methods and Processes – see our involvement in this below.
  • Managed Access Agreements - we have been involved in an international project led by IMPACT HTA looking to formulate best practice. Their website is here.
  • Innovative Medicines Fund - proposals for the fund are currently in development by NHS England and NHS Improvement and the National Institute for Health and Care Excellence The IMF could help patients to benefit from earlier access to promising new medicines via managed access agreements, whilst further evidence is collected to address clinical uncertainties in the evidence base. We attended an event outlining some aspects of proposals. There will be a formal public consultation starting soon.

NICE Methods and Processes Review

This has been consulted in two parts:

  • NICE Methods Review

NICE’s information about the review is here.

January 2021: NICE’s 6-week public consultation on its review and proposals started in November 2020. We attended a number of consultations and discussions run both by and for Patient Groups. You can read the key points made in our December response to the consultation.

  • NICE Case for Change Proposals – Processes Review

NICE’s information about this part of their review is here.

April 2021: You can read the key points we made in our online response to the consultation here.

The next stages for this review are:

  • August / September 2021: Six-week public consultation on the draft programme manual
  • December 2021: Final programme manual publishes
  • January 2022: Implementation of new methods and processes

You can read more about this on the NICE website here.

Previous work we have been involved in advocating for change to NICE’s systems:

October 2019: we supported Genetic Alliance UK’s 'Action for Access' campaign to improve access to potentially life-changing treatments for people affected by rare diseases (including SMA) - read more.

September 2019: the APPG on Access to Medicines and Medical Devices ’s summarised the views of a broadly-based group of stakeholders in its recommendations for the NICE Methods Review. SMA UK attended some of the meetings during which evidence was collected. You can read the report here. The report was taken to Government, the NHS and NICE in order to continue dialogue about what should change to support better patient access to innovative therapies.

April 2019: we joined MPs, representatives of charities supporting patients affected by rare conditions, representatives from pharmaceutical companies and others for the launch of MAP Biopharma’s report ‘Access to Orphan Medicines: A Case for Change’