Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to (a) support the development of treatments for Huntington's disease and (b) improve the ability of the NHS to deliver new gene therapies for people living with rare diseases.

Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)

We recognise the significant challenges faced by those living with rare diseases such as Huntington’s Disease. The Department supports research into Huntington’s disease through the National Institute for Health and Care Research (NIHR). NIHR infrastructure supports pioneering research into Huntington's, including the positive preliminary results for a novel gene therapy reported this year. NHS England will assess the service delivery impact of any specific gene therapy for Huntingdon's disease within three years of its expected licensing decision by the Medicines and Healthcare products Regulatory Agency. The National Institute for Health and Care Excellence (NICE) will make recommendations for the National Health Service on new medicines based on clinical and cost effectiveness. NHS England is required to fund medicines recommended by NICE, within three months of the publication of final guidance. The NHS has a dedicated team to support the adoption of advanced therapy medicinal products (ATMPs) that are recommended by NICE. NHS England works with a variety of internal and external stakeholders to ensure timely patient access to ATMPs that are on NICE’s technology appraisal and highly specialised technology workplan.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, which recommendations of the Government’s British Sign Language Advisory Board he will implement to ensure the NHS is accessible to deaf and blind people.

Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)

Under the Equality Act 2010, health and care organisations have a legal duty to make changes in their approach and provision to ensure that services are as accessible to disabled people as they are for everybody else.

All National Health Service organisations and publicly funded social care providers are expected to meet the Accessible Information Standard, which details the recommended approach to supporting the information and communication support needs of people with a disability, impairment or sensory loss, including Deaf and blind people.

We welcome the British Sign Language Advisory Board’s report, Locked out: Exclusion of deaf and deafblind BSL users from health and social care in the UK. We will carefully consider its recommendations, including how, in the context of our work on the 10-Year Health Plan and reform of adult social care, we can improve the experiences of Deaf and blind people when accessing health and care services.