Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what processes are in place to ensure that NHS England’s clinical priorities advisory group receives the views of (a) patients and (b) patient families as part of the specialised commissioning relative prioritisation process.

Patients and the public have already been given the opportunity to submit peer reviewed, published evidence regarding Everolimus as part of a public consultation held before the last prioritisation round in May 2018. An engagement report which summarised the views submitted was considered by the Clinical Priorities Advisory Group (CPAG) as part of their deliberations.

The Tuberous Sclerosis Association (TSA) submitted a response to this consultation. A summary of their response was included in the consultation report provided to the CPAG, and was reviewed as part of the stakeholder testing and consultation feedback which the policy working group consider as part of the policy development process.

However, the TSA’s response was not included in the clinical evidence summary submitted to NHS England by the National Institute for Health and Care Excellence for clinical panel review, as NHS England’s published protocols require that only peer reviewed and published clinical evidence can be included in the evidence review. This is so that all policy propositions can be fairly and objectively considered against each other, based on evidence that has been independently reviewed and validated.

If CPAG members wish to have further information, such as the detailed consultation responses, there is a complete library pack to review as appropriate.

NHS England met with the Tuberous Sclerosis Association at a stakeholder surgery on 25 September to discuss the outcome of the prioritisation round and to explain the next steps.