Cystic Fibrosis: Health Services

Department of Health and Social Care written question – answered on 16th October 2018.

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Photo of Janet Daby Janet Daby Labour, Lewisham East

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support (a) people with cystic fibrosis and (b) those people's access to precision medicine.

Photo of Steve Brine Steve Brine The Parliamentary Under-Secretary for Health and Social Care

Specialised services for the support and treatment of patients with cystic fibrosis (CF) are commissioned by NHS England. CF services are delivered in about 20 Paediatric Cystic Fibrosis Centres and about 20 Adult Cystic Fibrosis Centres. There are separate service specifications for adults and children. These specifications are important in clearly defining what NHS England expects to be in place for providers to offer evidence-based, safe and effective care and they support equity of access to a nationally consistent, high quality service.

The specifications can be found via the following links:

In October 2017, the National Institute for Health and Care Excellence (NICE) published new guidance for the diagnosis and management of CF. This includes specific details on how to monitor the condition and manage the symptoms to improve quality of life. This guidance can be found via the following link:

NICE is the organisation responsible for assessing the clinical and cost effectiveness of medicine for the NHS. NICE has considered precision medicines for the treatment of CF, such as Orkambi and Kalydeco. The use of Kalydeco is approved by NICE and is currently being used by around 400 patients. However, NICE have been unable to recommend the use of the precision medicine Orkambi. More information on this recommendation can be found via the following link:

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