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690374

registered interest
date	17/02/2017
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Sickle Cell Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, what steps his Department is taking to broaden understanding in the medical profession and wider society of sickle cell disease.
tabling member constituency	Huddersfield
tabling member printed	Mr Barry Sheerman
uin	64302
answer	answer is ministerial correction date of answer 27/02/2017 answer text <p>The Government is working to improve the lives of all those affected by rare diseases, including sickle cell disease, through the implementation of the United Kingdom Strategy for Rare Diseases. The Strategy includes specific recommendations related to raising awareness of rare diseases and genomics across the healthcare professions.</p><p> </p><p>Patients with sickle cell are provided with information about the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS) which is a registry of rare disease patient information. NCARDRS was established by Public Health England part of implementation of the UK Strategy for Rare Diseases and will support research into rare diseases including the provision of longitudinal data.</p><p> </p> answering member constituency Oxford West and Abingdon answering member printed Nicola Blackwood question first answered 27/02/2017 17:41:47 answering member 4019 label Biography information for Baroness Blackwood of North Oxford
tabling member	411 label Biography information for Mr Barry Sheerman

690376

registered interest
date	17/02/2017
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Sickle Cell Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, if his Department will promote the provision of oxygen at homes and workplaces for those with sickle cell disease.
tabling member constituency	Huddersfield
tabling member printed	Mr Barry Sheerman
uin	64303
answer	answer is ministerial correction date of answer 27/02/2017 answer text <p>Individual treatment decisions should be made by clinicians who are best placed to assess the most appropriate course of action for their patients. Patients receiving oxygen treatment are first assessed by an oxygen clinic that will determine if this treatment is suitable and how the oxygen is best supplied.</p> answering member constituency Oxford West and Abingdon answering member printed Nicola Blackwood question first answered 27/02/2017 17:45:38 answering member 4019 label Biography information for Baroness Blackwood of North Oxford
tabling member	411 label Biography information for Mr Barry Sheerman

678216

registered interest
date	24/01/2017
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Sickle Cell Diseases
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government why adult sufferers from sickle cell anaemia who could benefit from stem cell treatment are not able to receive such treatment under the NHS when child sufferers can; and whether they are considering changing this policy.
tabling member printed	Lord Kinnock
uin	HL4945
answer	answer is ministerial correction date of answer 03/02/2017 answer text <p>Decisions related to the provision of stem cell transplantation are an operational matter for NHS England. Stem cell transplants for sickle cell disease in adults are not routinely commissioned by NHS England. Whilst stem cell transplants can be effective for some carefully selected patients, stem cell transplantation can also lead to a number of complications, some of which can be severe and life threatening.</p><p> </p><p>NHS England commissioning policy for stem cell transplants is kept under review in the light of the latest clinical evidence. The National Institute for Health Research is currently inviting research proposals for a multicentre randomised control trial to address the clinical and cost effectiveness of stem cell transplantation in adults with severe sickle cell disease. Evidence from this trial will inform NHS England commissioning policy related to stem cell transplants in adults with sickle cell disease.</p><p> </p> answering member printed Lord O'Shaughnessy question first answered 03/02/2017 14:24:56 answering member 4545 label Biography information for Lord O'Shaughnessy
tabling member	693 label Biography information for Lord Kinnock

578699

registered interest
date	08/09/2016
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Sickle Cell Diseases
house id	1
legislature	25259 pref label House of Commons
question text	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.
tabling member constituency	Birmingham, Ladywood
tabling member printed	Shabana Mahmood
uin	45638
answer	answer is ministerial correction date of answer 16/09/2016 answer text <p>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.</p><p>Table 1 shows the number of screen positive babies detected in England since the establishment of Public Health England (PHE) in 2013.</p><table><tbody><tr><td colspan="5"><p>Table 1. Sickle cell disease (SCD) screen positive babies: England</p></td></tr><tr><td><p>Year</p></td><td><p>Screen Positive Babies</p></td><td><p>Total Screened</p></td><td><p>Rate per 1000</p></td><td><p>1 in x</p></td></tr><tr><td><p>2013/14</p></td><td><p>319</p></td><td><p>668,117</p></td><td><p>0.48</p></td><td><p>2,094</p></td></tr><tr><td><p>2014/15</p></td><td><p>278</p></td><td><p>661,432</p></td><td><p>0.42</p></td><td><p>2,379</p></td></tr><tr><td><p>Total for whole period</p></td><td><p>3,003</p></td><td><p>6,056,663</p></td><td><p>0.50</p></td><td><p>2,017</p></td></tr></tbody></table><p>Data source: PHE Screening</p><p>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.</p><p>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.</p><p>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.</p> answering member constituency Oxford West and Abingdon answering member printed Nicola Blackwood question first answered 16/09/2016 12:52:52 answering member 4019 label Biography information for Baroness Blackwood of North Oxford
tabling member	3914 label Biography information for Shabana Mahmood

167078

registered interest
date	01/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Sickle Cell Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, what research his Department has published on sickle cell anaemia in the last four years.
tabling member constituency	Wolverhampton South East
tabling member printed	Mr Pat McFadden
uin	216525
answer	answer is ministerial correction date of answer 08/12/2014 answer text <p>The NIHR Journals Library comprises a suite of open access journals providing a permanent archive of research funded by the Department’s National Institute for Health Research (NIHR) through five NIHR programmes (Efficacy and Mechanism Evaluation; Health Services and Delivery Research; Health Technology Assessment; Programme Grants for Applied Research; Public Health Research). The NIHR Journals Library is available at:</p><p> </p><p> </p><p> </p><p><a href="http://www.journalslibrary.nihr.ac.uk/" target="_blank">http://www.journalslibrary.nihr.ac.uk/</a></p><p> </p><p> </p><p> </p><p>The following reports relating to sickle cell anaemia have been published in the NIHR Journals Library in the last four years:</p><p> </p><p><strong> </strong></p><p> </p><p>- The clinical effectiveness and cost-effectiveness of primary stroke prevention in children with sickle cell disease: a systematic review and economic evaluation (2012)</p><p> </p><p><strong> </strong></p><p> </p><p>- Antenatal screening for haemoglobinopathies in primary care: a cohort study and cluster randomised trial to inform a simulation model. The Screening for Haemoglobinopathies in First Trimester (SHIFT) trial (2010)</p><p> </p><p><strong> </strong></p><p> </p><p>Across all NIHR funding streams, and across all topic areas including sickle cell anaemia, the Department and the NIHR require that NIHR funded researchers seek to publish their research outputs in a peer-reviewed journal that is compliant with the NIHR policy on open access.</p><p> </p> answering member constituency Mid Norfolk answering member printed George Freeman question first answered 08/12/2014 15:18:07 answering member 4020 label Biography information for George Freeman
tabling member	1587 label Biography information for Pat McFadden

167079

registered interest
date	01/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Sickle Cell Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, when he last met the Sickle Cell Society; and if he will make a statement.
tabling member constituency	Wolverhampton South East
tabling member printed	Mr Pat McFadden
uin	216526
answer	answer is ministerial correction date of answer 08/12/2014 answer text <p>Genetic Alliance UK, of which the Sickle Cell Society is a member, are represented on the Department’s UK Rare Disease Forum, which meets regularly to discuss issues of United Kingdom rare diseases policy and to monitor the implementation of the UK Strategy for Rare Diseases.</p><p> </p><p> </p><p> </p><p>There have been no recent direct discussions between my Rt. hon. Friend the Secretary of State for Health and the Sickle Cell Society.</p><p> </p> answering member constituency Battersea answering member printed Jane Ellison question first answered 08/12/2014 16:01:15 answering member 3918 label Biography information for Jane Ellison
tabling member	1587 label Biography information for Pat McFadden

167080

registered interest
date	01/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Sickle Cell Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, how much the NHS spends on sickle cell anaemia; and what proportion this is of the total NHS budget.
tabling member constituency	Wolverhampton South East
tabling member printed	Mr Pat McFadden
uin	216527
answer	answer is ministerial correction date of answer 08/12/2014 answer text <p>There are an estimated 250,000 people with <ins class="ministerial">the</ins> sickle cell <ins class="ministerial">trait</ins> <del class="ministerial">anaemia</del> in the United Kingdom. The Department has made no estimation of the annual cost of treating sickle cell anaemia in the National Health Service nor does it hold information on the total NHS spend on sickle cell anaemia.</p><p> </p><p> </p><p> </p><p>The Department does hold estimated costs for admitted patient care episodes as reported by Healthcare Resource Groups. In 2013-14 the total estimated figure for sickle anaemia was £23.8 million; in 2012-13 it was £21.9 million. This figure does not include other costs such as primary and social care.</p><p> </p> answering member constituency Battersea answering member printed Jane Ellison question first answered 08/12/2014 15:12:22 question first ministerially corrected 10/12/2014 16:29:44 answering member 3918 label Biography information for Jane Ellison previous answer version 32239 answering member constituency Battersea answering member printed Jane Ellison answering member 3918 label Biography information for Jane Ellison
tabling member	1587 label Biography information for Pat McFadden

167081

registered interest
date	01/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Sickle Cell Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, how many consultant and nursing specialists in sickle cell anaemia are employed by the NHS; and if he will make a statement.
tabling member constituency	Wolverhampton South East
tabling member printed	Mr Pat McFadden
uin	216528
answer	answer is ministerial correction date of answer 08/12/2014 answer text <p>Information about the number of consultant and nursing specialists in sickle cell anaemia is not collected centrally.</p><p> </p><p><strong> </strong></p><p> </p> answering member constituency Battersea answering member printed Jane Ellison question first answered 08/12/2014 15:13:14 answering member 3918 label Biography information for Jane Ellison
tabling member	1587 label Biography information for Pat McFadden

167082

registered interest
date	01/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Sickle Cell Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, what estimate he has made of the annual cost to the NHS of treating sickle cell anaemia.
tabling member constituency	Wolverhampton South East
tabling member printed	Mr Pat McFadden
uin	216529
answer	answer is ministerial correction date of answer 08/12/2014 answer text <p>There are an estimated 250,000 people with <ins class="ministerial">the</ins> sickle cell <ins class="ministerial">trait</ins> <del class="ministerial">anaemia</del> in the United Kingdom. The Department has made no estimation of the annual cost of treating sickle cell anaemia in the National Health Service nor does it hold information on the total NHS spend on sickle cell anaemia.</p><p> </p><p> </p><p> </p><p>The Department does hold estimated costs for admitted patient care episodes as reported by Healthcare Resource Groups. In 2013-14 the total estimated figure for sickle anaemia was £23.8 million; in 2012-13 it was £21.9 million. This figure does not include other costs such as primary and social care.</p><p> </p> answering member constituency Battersea answering member printed Jane Ellison question first answered 08/12/2014 15:12:22 question first ministerially corrected 10/12/2014 16:29:44 answering member 3918 label Biography information for Jane Ellison previous answer version 32239 answering member constituency Battersea answering member printed Jane Ellison answering member 3918 label Biography information for Jane Ellison
tabling member	1587 label Biography information for Pat McFadden