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The below Parliamentary question was asked by Diane Abbott on 2016-06-24.

To ask the Secretary of State for Health, what the (a) treatment targets and (b) care processes are for people with (i) sickle cell disease and (ii) thalassaemia in each (A) clinical commissioning group area, (B) trust area and (C) national sickle cell and thalassaemia centre area in the most recent year for which figures are available.

George Freeman

NHS England has a published service specification for haemoglobinopathy which covers the requirements of commissioned services providing specialised services for patients with sickle cell disease or thalassaemia. The specification was developed by the Haemoglobinopathies Clinical Reference Group that covers Sickle Cell Disease, Thalassaemia and other very rare anaemias requiring lifelong transfusion and chelation. The specification reflects that although these are complex disorders they are often grouped together and managed by the same specialist team. It recognises that each condition will have distinct clinical manifestations and treatments.

Specialised services for haemoglobinopathy care B08/S/a:

https://www.england.nhs.uk/wp-content/uploads/2013/06/b08-speci-serv-haemo.pdf

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The below Parliamentary question was asked by Diane Abbott on 2016-06-24.

To ask the Secretary of State for Health, what estimate he has made of the proportion of people from black, Asian and minority ethnic communities who have received a diagnosis of (a) sickle cell disease and (b) thalassaemia in each (i) clinical commissioning group area, (ii) trust area and (iii) national sickle cell and thalassaemia centre area; and what proportion of people from such communities were so diagnosed in the most recent year for which figures are available.

George Freeman

The National Haemoglobinopathy Registry maintains a database of patients with red cell disorders (mainly sickle cell disease and thalassaemia major) living in the United Kingdom. Detailed information on the number of patients diagnosed with sickle cell disease and thalassaemia, in England, is available from the National Haemoglobinopathy Registry Report 2013/14. This includes a breakdown of patients on the basis ethnicity, commissioning hub and specialist treatment centre.

The below Parliamentary question was asked by Diane Abbott on 2016-06-24.

To ask the Secretary of State for Health, how many apheresis machines are operational in the UK; and where those machines are located.

George Freeman

Apheresis machines are part of the care provided in a number of haematology services including sickle cell and thalassaemia care.

NHS Blood and Transplant is one of the main providers of Therapeutic Apheresis Services in England and has the largest installed base of therapeutic apheresis equipment in the National Health Service (32 machine platforms across the country). Additional provision of apheresis services are provided by NHS trusts and other UK Blood Services but NHS England does not currently hold information on this information centrally.

Work in relation to these services including the incentivisation of automated exchange through Commissioning for Quality and Innovation will improve the baseline information over the coming year.

The below Parliamentary question was asked by Diane Abbott on 2016-06-24.

To ask the Secretary of State for Health, how many people have died as a result of (a) sickle cell disease and (b) thalassaemia in each (i) clinical commissioning group area, (ii) trust area and (iii) national sickle cell and thalassaemia centre area in the most recent year for which figures are available.

George Freeman

NHS England does not routinely collect this information. Data on adverse events for patients with sickle cell disease and thalassaemia is available from the National Haemoglobinopathy Registry Report 2013/14.

The below Parliamentary question was asked by Diane Abbott on 2016-06-24.

To ask the Secretary of State for Health, what clinical outcomes data his Department holds for (a) sickle cell disease and (b) thalassaemia in each (i) clinical commissioning group area, (ii) trust area and (iii) national sickle cell and thalassaemia centre area.

George Freeman

NHS England requires commissioned providers to submit quality dashboard data on an annual basis. Key indicators include the percentage of patients on the National Haemoglobinopathy Register, those offered an annual review and the proportion of eligible patients offered and receiving neurological screening.

The below Parliamentary question was asked by Diane Abbott on 2016-06-24.

To ask the Secretary of State for Health, what proportion of the at risk population have been screened for (a) sickle cell disease and (b) thalassaemia in each (i) clinical commissioning group area, (ii) trust area and (iii) national sickle cell and thalassaemia centre area; and what proportion of that population were so screened in the most recent year for which figures are available.

Jane Ellison

The Sickle Cell and Thalassaemia Screening Programme is an antenatal population screening programme which is offered to all pregnant women regardless of their risk, and to fathers to be, where antenatal screening shows that the mother is a genetic carrier. The offer to be screened is a joint offer.

Screening coverage for sickle cell and thalassaemia is reported by region only and can be accessed below:

http://www.phoutcomes.info/search/SICKLE%20CELL

Screening data for sickle cell and thalassaemia by NHS trusts and clinical commissioning groups over the last three years can be viewed:

https://www.gov.uk/government/collections/nhs-screening-programmes-national-data-reporting

Newborn babies are screened for sickle cell as part of the newborn blood spot screening programme. Data in screening for sickle cell and thalassaemia in the Newborn Blood Spot Programme over the last three years is available at:

https://www.gov.uk/government/collections/nhs-screening-programmes-national-data-reporting

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The below Parliamentary question was asked by Diane Abbott on 2016-06-24.

To ask the Secretary of State for Health, what PREMs and PROMs data his Department holds for people with (a) sickle cell disease and (b) thalassaemia.

George Freeman

NHS England does not currently routinely collect this information.