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Written Question
Haemochromatosis: Medical Treatments
Wednesday 23rd September 2020

Asked by: John Hayes (Conservative - South Holland and The Deepings)

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 ensure each NHS Trust is equipped with the (a) expertise and (b) resources needed to treat haemochromotosis.

Answered by Edward Argar - Minister of State (Ministry of Justice)

Services for the care and treatment of patients with hemochromatosis are commissioned by clinical commissioning groups which determine the National Health Service trust level element of expertise and resources to treat this condition.

Genetic testing services or other specialised services may however be involved in the diagnosis of this condition. This would be as a result of a specific referral for genetic testing. The Genomic Medicine Service is supported by the National Genomic Test Directory which specifies the genomic tests that are commissioned by the NHS in England. Genetic haemochromatosis is included in the Test Directory.

Departmental Publication (Statistics)
Department for Work and Pensions

Sep. 15 2020

Source Page: Personal Independence Payment: April 2013 to July 2020
Document: Personal Independence Payment: April 2013 to July 2020 (ODS)

Found: 1250 630 650 50 190 3510 22.973386356684003 38.14622208626491 19.118996635056593 19.761394921994494 Genetic

Written Question
Haemochromatosis: Diagnosis
Monday 2nd March 2020

Asked by: Angela Eagle (Labour - Wallasey)

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 improve early diagnosis of genetic haemochromatosis.

Answered by Jo Churchill - Minister of State (Department for Work and Pensions)

Steps to improve diagnosis of rare conditions, including genetic haemochromatosis, are being taken through the implementation of the of the UK Strategy for Rare Diseases, available at the following link:

https://www.gov.uk/government/publications/rare-diseases-strategy

The Genomic Medicine Service is supported by the National Genomic Test Directory which specifies the genomic tests that are commissioned by the National Health Service in England. Genetic haemochromatosis is included in the Test Directory.

Select Committee
Dr Jordana Bell (Head of Epigenomics Research Group at King's College London), Professor Avan Aihie Sayer (Professor of Geriatric Medicine at Newcastle University), Professor Richard Faragher (Professor of Biogerontology at Brighton University), and Professor David Melzer (Professor of Epidemiology and Public Health at Exeter University)
 King's College London, Newcastle University, Brighton University, and Exeter University

Oral Evidence Feb. 02 2020

Inquiry: Ageing: Science, Technology and Healthy Living
Inquiry Status: Closed
Committee: Science and Technology Committee (Lords)

Found: My group has been involved in genetic studies of longevity and lifespan, and my main focus today is on

Select Committee
Carla Newell, Chief Legal Officer and Chief Risk Officer, Ancestry.com, Avi Lasarow, Chief Executive Officer, DNAfit, and Kathy Hibbs, Chief Legal and Regulatory Officer, 23andMe

Oral Evidence Oct. 28 2019

Inquiry: Commercial genomics inquiry
Inquiry Status: Closed
Committee: Science, Innovation and Technology Committee

Found: Avi Lasarow: As a company, we specialise in an area called wellness for the genetic tests we offer—genetic

Select Committee
Dr Jordana Bell, Head of Epigenomics Research Group, King’s College London; Professor Avan Aihie Sayer, Professor of Geriatric Medicine, Newcastle University; Professor Richard Faragher, Professor of Biogerontology, Brighton University; Professor David Melzer, Professor of Epidemiology and Public Health, Exeter University.

Oral Evidence Oct. 22 2019

Inquiry: Ageing: Science, Technology and Healthy Living
Inquiry Status: Closed
Committee: Science and Technology Committee (Lords)

Found: My group has been involved in genetic studies of longevity and lifespan, and my main focus today

Non-Departmental Publication (Transparency)
Innovate UK

Oct. 14 2019

Source Page: Innovate UK funding competition winners 2019
Document: Innovate UK funding competition winners 2019 (PDF)

Found: CF is a genetic, life-shortening conditionaffecting over 10,000 people in the UK, with annual costs of

Select Committee
Dr Pauline McCormack et al.
 CGN0057 - Commercial genomics inquiry

Written Evidence Sep. 05 2019

Inquiry: Commercial genomics inquiry
Inquiry Status: Closed
Committee: Science, Innovation and Technology Committee

Found: For example, the identification of the haemochromatosis genotype by itself may lead to many more people

Non-Departmental Publication (Transparency)
Public Health England (PHE)

Aug. 12 2019

Source Page: UK National Screening Committee recommendations: annual report
Document: UK National Screening Committee recommendations: annual report (PDF)

Found: muscular dystrophy 11Fetomaternal alloimmune thrombocytopenia 12Group B streptococcus 13Heriditary haemochromatosis

Written Question
Social Security Benefits: Haemochromatosis
Monday 22nd July 2019

Asked by: Alex Sobel (Labour (Co-op) - Leeds North West)

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

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.