Social Security Benefits: Haemochromatosis

(asked on 17th July 2019) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what recent steps he has taken to improve her Department's support for people with haemochromatosis in (a) England and (b) Yorkshire and the Humber.


Answered by
Caroline Dinenage Portrait
Caroline Dinenage
This question was answered on 22nd July 2019

Services for patients with genetic haemochromatosis are commissioned locally through clinical commissioning groups (CCGs) which have a statutory responsibility to commission services which meet the needs of their local population. For example, Leeds CCG commissions the consultant led haematology service at Leeds Teaching Hospitals, which includes support for haemochromatosis. Sustainability and transformation partnerships (STPs) are enabling service coordination across wider footprints and the NHS Long Term Plan sets out the ambition for all STPs to evolve into integrated care systems (ICSs) by April 2021. ICSs are an ‘evolved’ form of a STP, making faster progress in integrating care across their area, bringing together organisations to provide more seamless care for patients.

The Government is committed to making the United Kingdom a leader in embedding genomics in healthcare and offer a consistent, world class approach to the genetic identification of rare diseases, including genetic hemochromatosis. The Genomics Medicine Service was announced in October 2018, supported by the National Genomic Test Directory which specifies which genomic tests are commissioned by the NHS in England, the technology by which they are available, and the patients who will be eligible to access a test. Genetic haemochromatosis is included in the National Genomic Test Directory.

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