Asked by: Shabana Mahmood (Labour - Birmingham, Ladywood)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, how many people have sickle cell disease in the UK; and what assessment he has made of the adequacy of provision to improve the quality of life and life expectancy of people with that disease.
Answered by Baroness Blackwood of North Oxford
The Sickle Cell and Thalassaemia screening programme is a linked antenatal and newborn screening programme which is offered to all pregnant women and their babies. It is also offered to fathers to be, where antenatal screening shows that the mother is a genetic carrier.
Table 1 shows the number of screen positive babies detected in England since the establishment of Public Health England (PHE) in 2013.
Table 1. Sickle cell disease (SCD) screen positive babies: England | ||||
Year | Screen Positive Babies | Total Screened | Rate per 1000 | 1 in x |
2013/14 | 319 | 668,117 | 0.48 | 2,094 |
2014/15 | 278 | 661,432 | 0.42 | 2,379 |
Total for whole period | 3,003 | 6,056,663 | 0.50 | 2,017 |
Data source: PHE Screening
Although NHS England does not routinely collect the information requested on the provision to improve quality of life and life expectancy of people with the disease, it is is working to ensure excellent services for people identified with Sickle Cell disease.
NHS England has included treatment services for haemoglobinopathies within the prescribed specialised services commissioned centrally by NHS England and set up a Clinical Reference Group of sickle cell and thalassaemia experts and patient representatives specifically to advise NHS England on commissioning services for haemoglobinopathies.
NHS England is also developing a commissioning policy for the management of iron overload in sickle cell and thalassaemia patients. It is also about to under-take a national review of haemoglobinopathy services, commencing in 2016-17.
Asked by: Diane Abbott (Independent - Hackney North and Stoke Newington)
Question to the Department of Health and Social Care:
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.
Answered by George Freeman
NHS England does not currently routinely collect this information.
Asked by: Diane Abbott (Independent - Hackney North and Stoke Newington)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, how many apheresis machines are operational in the UK; and where those machines are located.
Answered by 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.
Asked by: Diane Abbott (Independent - Hackney North and Stoke Newington)
Question to the Department of Health and Social Care:
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.
Answered by 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.
Asked by: Diane Abbott (Independent - Hackney North and Stoke Newington)
Question to the Department of Health and Social Care:
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.
Answered by 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
Asked by: Diane Abbott (Independent - Hackney North and Stoke Newington)
Question to the Department of Health and Social Care:
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.
Answered by 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.
Asked by: Diane Abbott (Independent - Hackney North and Stoke Newington)
Question to the Department of Health and Social Care:
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.
Answered by 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.
Asked by: Diane Abbott (Independent - Hackney North and Stoke Newington)
Question to the Department of Health and Social Care:
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.
Answered by 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
Asked by: Madeleine Moon (Labour - Bridgend)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, when he plans to respond to the letter sent to him dated 23 February 2015 on prescription charges for people with long-term conditions by the Chairs of the All-Party Parliamentary Groups on Respiratory Health, Parkinson's, Motor Neurone Disease, HIV and AIDS, Sickle Cell and Thalassaemia and Heart Disease.
Answered by Jane Ellison
The Department responded to the Chair of the All-Party Parliamentary Group on Respiratory Health’s letter of 23 February 2015 on 2 April 2015.
Asked by: Mary Glindon (Labour - North Tyneside)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, how much the NHS has paid out for wrongful birth claims in each year between 2003 and 2013; how many successful claims for wrongful birth were made in each year between 2008 and 2012.
Answered by Dan Poulter
The following table shows the number of successful claims for wrongful birth made in each year between 2003 and 2013, and how much the National Health Service has paid out to date for those claims:
NHS Litigation Authority (NHS LA) notification year | Number of Claims | Damages Paid (£) | Defence Costs Paid (£) | Claimant Costs Paid (£) | Total Paid
(£) |
2013-14 | 16 | 13,000 | 55,109 | 0 | 68,109 |
2012-13 | 20 | 624,335 | 222,348 | 268,900 | 1,115,583 |
2011-12 | 11 | 5,460,470 | 473,481 | 475,000 | 6,408,951 |
2010-11 | 21 | 7,537,000 | 428,718 | 1,214,400 | 9,180,118 |
2009-10 | 12 | 4,240,211 | 197,724 | 346,600 | 4,784,535 |
2008-09 | 19 | 4,563,663 | 538,787 | 2,012,112 | 7,114,562 |
2007-08 | 16 | 15,572,500 | 615,220 | 1,936,385 | 18,124,105 |
2006-07 | 10 | 2,326,500 | 188,381 | 477,699 | 2,992,580 |
2005-06 | 11 | 6,886,680 | 608,207 | 1,182,508 | 8,677,396 |
2004-05 | 11 | 11,446,226 | 585,664 | 1,407,305 | 13,439,194 |
2003-04 | 17 | 19,046,063 | 976,620 | 3,280,661 | 23,303,344 |
Total | 164 | 77,716,648 | 4,890,259 | 12,601,570 | 95,208,477 |
A further 83 unsuccessful claims were brought during this period, the following table shows how much the NHS LA spent on defence costs in each year:
NHS LA Notification Year | Closed with nil damages | ||||
Number of Claims | Damages Paid (£) | Defence Costs Paid (£) | Claimant Costs Paid (£) | Total Paid
(£) | |
2013-14 | 8 | 0 | 8,870 | 0 | 8,870 |
2012-13 | 10 | 0 | 57,836 | 0 | 57,836 |
2011-12 | 6 | 0 | 18,946 | 0 | 18,946 |
2010-11 | 9 | 0 | 69,630 | 0 | 69,630 |
2009-10 | 3 | 0 | 9,765 | 0 | 9,765 |
2008-09 | 11 | 0 | 32,061 | 6 | 32,067 |
2007-08 | 5 | 0 | 50,415 | 0 | 50,415 |
2006-07 | 7 | 0 | 60,314 | 0 | 60,314 |
2005-06 | 3 | 0 | 0 | 0 | 0 |
2004-05 | 11 | 0 | 51,727 | 0 | 51,727 |
2003-04 | 10 | 0 | 99,996 | 0 | 99,996 |
Total | 83 | 0 | 459,560 | 6 | 459,565 |
Of the 164 successful claims, 60 cases remain open (i.e. the NHS LA has not resolved all aspects of the claim, e.g. they have agreed damages but not yet paid them or they have paid some or all of the damages but not yet agreed claimants costs). The 104 closed claims have been analysed to produce the following table of neonatal conditions/ other reasons why the claims were brought:
Neonatal conditions/other causes of claim | Number of Claims |
Anaemia | 1 |
Cerebral Palsy | 3 |
Chromosome 9 deformity | 1 |
Congenital abnormalities | 24 |
Connective tissue disease | 1 |
Cystic fibrosis | 4 |
Downs Syndrome | 8 |
Failed contraceptive implant/procedure - Healthy baby | 8 |
Failed sterilisation - Healthy baby | 24 |
Failed sterilisation - kidney damage | 1 |
Failed sterilisation - potential learning difficulties | 1 |
Failed sterilisation - termination undertaken | 1 |
Failed termination - brain injury | 1 |
Failed termination - healthy baby | 6 |
Failure to diagnose pregnancy - healthy baby | 1 |
Heart defect | 1 |
HIV | 1 |
Inaccurate fertility advice - healthy baby | 1 |
Inherited blood disorder - Beta thalassaemia | 1 |
Muscular skeletal abnormalities | 1 |
Ornithine trans carboxylase (OTC) deficiency | 2 |
Safeguarding failure (vulnerable mother) – child has behavioural problems | 1 |
Safeguarding failure (vulnerable mother) - healthy child | 1 |
Sickle Cell Trait | 3 |
Spina bifida | 3 |
Unwanted extra uterine pregnancy. Maternal injury. No evidence of neonatal conditions | 1 |
Unwanted pregnancy - No evidence of neonatal conditions | 2 |
Wolf Hirschhon Syndrome | 1 |
Total | 104 |