Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps the Government is taking to ensure the (a) availability and (b) adequacy of health services for patients with Usher Syndrome.

Patients with Usher syndrome have a wide range of needs, with many services being commissioned by local clinical commissioning groups (CCGs). NHS England commissions more specialist services such as cochlear implants (which are suitable for some patients with Usher syndrome). NHS England also commissions the complex genetic analysis associated with Usher syndrome.

Whilst NHS England is considering a number of new interventions for some patients with retinitis pigmentosa, some of these interventions are not suitable for patients who are also deaf or have selective frequency hearing loss because they prevent the hearing of device alarms and alerts.

CCGs are also responsible for working with their local communities to understand the needs of the local populations and make decisions about how best to commission services that meet those needs, in partnership with other local commissioners and organisations and taking into account any relevant guidance.