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78228

registered interest
date	15/07/2014
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	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government what is their strategy towards the treatment of sickle cell disease.
tabling member printed	Lord Hunt of Kings Heath
uin	HL1123
answer	answer is ministerial correction date of answer 23/07/2014 answer text <p>The vast majority of sickle cell disease (SCD) affected children born in England are identified by the NHS Sickle Cell and Thalassaemia Screening programme, and other patients may present through migration or late diagnosis</p><p> </p><p>SCD is a lifelong condition, and NHS England provides high quality care for patients with SCD as part of its specialised commissioning responsibilities. NHS England’s Haemaglobinopathies service specification clearly sets out what providers must have in place for providers to offer evidence-based, safe and effective services.</p><p> </p><p>Although SCD patient care will be coordinated by a Specialist Haemoglobinopathy Centre (SHC), the majority of care may be delivered outside of the SHC by a range of providers. The configuration of care provision will be based on local prevalence, expertise and availability of service providers, and this may include acute hospitals, community care, primary care and the voluntary sector.</p><p> </p><p>Information concerning the number of SCD patients in each parliamentary constituency is not collected. However, NHS England’s service specification sets out that there are around 15,000 patients with SCD living in England at present. In England SCD occurs predominantly, but not exclusively, in ethnic minority communities. It is the most common inherited condition in England and around 350 babies with SCD are born each year.</p><p> </p> answering member printed Earl Howe grouped question UIN HL1121 HL1122 question first answered 23/07/2014 12:31:23 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

77796

registered interest
date	14/07/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Neurofibromatosis
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government what steps they plan to take to encourage early diagnosis of neurofibromatosis Type 1.
tabling member printed	Lord Hunt of Kings Heath
uin	HL1093
answer	answer is ministerial correction date of answer 22/07/2014 answer text <p>Neurofibromatosis Type 1 (NF1) patients are included within the remit of Dr David Bateman in his role as National Clinical Director for Chronic Disability and Neurological Conditions at NHS England.</p><p> </p><p>There are currently no plans for awareness raising activity in relation to NF 1, which is an inherited condition. Information for the public on the diagnosis and treatment of NF1 can be found on the NHS Choices website, which sets out the key signs and symptoms of the condition, including: coffee colored patches on the skin, two or more neurofibromas (bumps on or under the skin); bone defects, such as bowing of the lower leg; and, a family history of NF1. The NF1 webpages can be viewed at the following link:</p><p> </p><p>www.nhs.uk/conditions/Neurofibromatosis/Pages/Introduction.aspx.</p><p> </p><p>More detailed information for general practitioners and other health professionals can be found on the National Institute for Health and Care Excellence NHS Evidence website:</p><p> </p><p>www.evidence.nhs.uk.</p><p> </p><p>This provides free access to quality health and social care evidence and best practice.</p> answering member printed Earl Howe grouped question UIN HL1094 HL1096 question first answered 22/07/2014 16:22:11 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

77797

registered interest
date	14/07/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Neurofibromatosis
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government which National Clinical Director has responsibility for overseeing the National Health Service response to neurofibromatosis Type 1.
tabling member printed	Lord Hunt of Kings Heath
uin	HL1094
answer	answer is ministerial correction date of answer 22/07/2014 answer text <p>Neurofibromatosis Type 1 (NF1) patients are included within the remit of Dr David Bateman in his role as National Clinical Director for Chronic Disability and Neurological Conditions at NHS England.</p><p> </p><p>There are currently no plans for awareness raising activity in relation to NF 1, which is an inherited condition. Information for the public on the diagnosis and treatment of NF1 can be found on the NHS Choices website, which sets out the key signs and symptoms of the condition, including: coffee colored patches on the skin, two or more neurofibromas (bumps on or under the skin); bone defects, such as bowing of the lower leg; and, a family history of NF1. The NF1 webpages can be viewed at the following link:</p><p> </p><p>www.nhs.uk/conditions/Neurofibromatosis/Pages/Introduction.aspx.</p><p> </p><p>More detailed information for general practitioners and other health professionals can be found on the National Institute for Health and Care Excellence NHS Evidence website:</p><p> </p><p>www.evidence.nhs.uk.</p><p> </p><p>This provides free access to quality health and social care evidence and best practice.</p> answering member printed Earl Howe grouped question UIN HL1093 HL1096 question first answered 22/07/2014 16:22:12 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

77798

registered interest
date	14/07/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Neurofibromatosis
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government what if any financial support they are giving to the Neuro Foundation.
tabling member printed	Lord Hunt of Kings Heath
uin	HL1095
answer	answer is ministerial correction date of answer 17/07/2014 answer text <p>The Department does not currently provide any financial support to the Neuro Foundation.</p><p><strong> </strong></p><p> </p> answering member printed Earl Howe question first answered 17/07/2014 12:00:32 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

77799

registered interest
date	14/07/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Neurofibromatosis
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government what plans they have to increase awareness amongst midwives and general practitioners of neurofibromatosis Type 1.
tabling member printed	Lord Hunt of Kings Heath
uin	HL1096
answer	answer is ministerial correction date of answer 22/07/2014 answer text <p>Neurofibromatosis Type 1 (NF1) patients are included within the remit of Dr David Bateman in his role as National Clinical Director for Chronic Disability and Neurological Conditions at NHS England.</p><p> </p><p>There are currently no plans for awareness raising activity in relation to NF 1, which is an inherited condition. Information for the public on the diagnosis and treatment of NF1 can be found on the NHS Choices website, which sets out the key signs and symptoms of the condition, including: coffee colored patches on the skin, two or more neurofibromas (bumps on or under the skin); bone defects, such as bowing of the lower leg; and, a family history of NF1. The NF1 webpages can be viewed at the following link:</p><p> </p><p>www.nhs.uk/conditions/Neurofibromatosis/Pages/Introduction.aspx.</p><p> </p><p>More detailed information for general practitioners and other health professionals can be found on the National Institute for Health and Care Excellence NHS Evidence website:</p><p> </p><p>www.evidence.nhs.uk.</p><p> </p><p>This provides free access to quality health and social care evidence and best practice.</p> answering member printed Earl Howe grouped question UIN HL1093 HL1094 question first answered 22/07/2014 16:22:10 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

76615

registered interest
date	09/07/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Assistive Technology: Research
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government what assessment they have made of the impact of producing internally at the Department of Health the report required under section 22 of the Chronically Sick and Disabled Persons Act 1970 on the quality of research into areas of innovative assistive technology and the adoption of such technology; and what measures they intend to take prevent a decrease in both research into and adoption of such technology.
tabling member printed	Lord Hunt of Kings Heath
uin	HL957
answer	answer is ministerial correction date of answer 17/07/2014 answer text <p>Section 22 of the Chronically Sick and Disabled Persons Act 1970 sets out the following requirement:</p><p> </p><p><em>The Secretary of State shall as respects each year lay before Parliament a report on the progress made during that year in research and development work carried out by or on behalf of any Minister of the Crown in relation to equipment that might increase the range of activities and independence or well-being of disabled persons, and in particular such equipment that might improve the indoor and outdoor mobility of such persons.</em></p><p> </p><p>In recent years the report has been produced by the Foundation for Assistive Technology, and this contract expired in June 2014. The annual cost was £72,268 (figure for final year). The contract was funded by the Department's Policy Research Programme.</p><p> </p><p>The Department has to deliver change in a climate of continuing fiscal challenge and constraint on public spending, and the approach to reporting on assistive technology research and development is aligned with this. The Department does not therefore plan to invite tenders for production of Section 22 reports from 2014-15 and will produce future reports on a smaller scale and of sufficient quality to meet the statutory requirement. This will be done in-house at no additional cost.</p><p> </p><p>As the Government will continue to meet the statutory requirement, no formal consultation on Section 22 has been undertaken or planned.</p><p> </p><p>Reports produced under Section 22, together with other sources of information about Government-funded assistive technology research (including published outputs, project databases, trial registers, websites and other information published by research funders and organisations carrying out research) will continue to make information available that can be used to support the identification of innovation opportunities and the identification and adoption of technology.</p><p> </p> answering member printed Earl Howe grouped question UIN HL897 HL898 HL899 HL900 HL901 HL902 HL958 HL959 question first answered 17/07/2014 11:49:08 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

76616

registered interest
date	09/07/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Disability Aids
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government what measures they intend to take in order to ensure that the potential internal production of the report required under section 22 of the Chronically Sick and Disabled Persons Act 1970 will not lead to a reduction in the quality of the report.
tabling member printed	Lord Hunt of Kings Heath
uin	HL958
answer	answer is ministerial correction date of answer 17/07/2014 answer text <p>Section 22 of the Chronically Sick and Disabled Persons Act 1970 sets out the following requirement:</p><p> </p><p><em>The Secretary of State shall as respects each year lay before Parliament a report on the progress made during that year in research and development work carried out by or on behalf of any Minister of the Crown in relation to equipment that might increase the range of activities and independence or well-being of disabled persons, and in particular such equipment that might improve the indoor and outdoor mobility of such persons.</em></p><p> </p><p>In recent years the report has been produced by the Foundation for Assistive Technology, and this contract expired in June 2014. The annual cost was £72,268 (figure for final year). The contract was funded by the Department's Policy Research Programme.</p><p> </p><p>The Department has to deliver change in a climate of continuing fiscal challenge and constraint on public spending, and the approach to reporting on assistive technology research and development is aligned with this. The Department does not therefore plan to invite tenders for production of Section 22 reports from 2014-15 and will produce future reports on a smaller scale and of sufficient quality to meet the statutory requirement. This will be done in-house at no additional cost.</p><p> </p><p>As the Government will continue to meet the statutory requirement, no formal consultation on Section 22 has been undertaken or planned.</p><p> </p><p>Reports produced under Section 22, together with other sources of information about Government-funded assistive technology research (including published outputs, project databases, trial registers, websites and other information published by research funders and organisations carrying out research) will continue to make information available that can be used to support the identification of innovation opportunities and the identification and adoption of technology.</p><p> </p> answering member printed Earl Howe grouped question UIN HL897 HL898 HL899 HL900 HL901 HL902 HL957 HL959 question first answered 17/07/2014 11:49:08 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

76617

registered interest
date	09/07/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Disability Aids
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government what assessment they have made of the impact of the potential internal production of the report required under section 22 of the Chronically Sick and Disabled Persons Act 1970 on the identification of innovation opportunities, particularly for the manufacturing industry and small and medium-sized enterprises.
tabling member printed	Lord Hunt of Kings Heath
uin	HL959
answer	answer is ministerial correction date of answer 17/07/2014 answer text <p>Section 22 of the Chronically Sick and Disabled Persons Act 1970 sets out the following requirement:</p><p> </p><p><em>The Secretary of State shall as respects each year lay before Parliament a report on the progress made during that year in research and development work carried out by or on behalf of any Minister of the Crown in relation to equipment that might increase the range of activities and independence or well-being of disabled persons, and in particular such equipment that might improve the indoor and outdoor mobility of such persons.</em></p><p> </p><p>In recent years the report has been produced by the Foundation for Assistive Technology, and this contract expired in June 2014. The annual cost was £72,268 (figure for final year). The contract was funded by the Department's Policy Research Programme.</p><p> </p><p>The Department has to deliver change in a climate of continuing fiscal challenge and constraint on public spending, and the approach to reporting on assistive technology research and development is aligned with this. The Department does not therefore plan to invite tenders for production of Section 22 reports from 2014-15 and will produce future reports on a smaller scale and of sufficient quality to meet the statutory requirement. This will be done in-house at no additional cost.</p><p> </p><p>As the Government will continue to meet the statutory requirement, no formal consultation on Section 22 has been undertaken or planned.</p><p> </p><p>Reports produced under Section 22, together with other sources of information about Government-funded assistive technology research (including published outputs, project databases, trial registers, websites and other information published by research funders and organisations carrying out research) will continue to make information available that can be used to support the identification of innovation opportunities and the identification and adoption of technology.</p><p> </p> answering member printed Earl Howe grouped question UIN HL897 HL898 HL899 HL900 HL901 HL902 HL957 HL958 question first answered 17/07/2014 11:49:08 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

76618

registered interest
date	09/07/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Neurofibromatosis
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government what plans they have to develop a national service framework for neurofibromatosis Type 1 sufferers.
tabling member printed	Lord Hunt of Kings Heath
uin	HL960
answer	answer is ministerial correction date of answer 14/07/2014 answer text <p>The number of people with neurofibromatosis type 1 (NF1) in England is estimated to number 11,267. The condition can be mild in some patients, manifesting itself only in patches of skin discolouration and soft benign bumps under the skin (neurofibromas), but for others NF1 causes more serious complications, including a rare form of cancer, curvature of the spine and nerve problems caused by more invasive neurofibromas.</p><p> </p><p>Since 1 April 2013, NHS England has been responsible for securing high quality care for all patients with complex NF1 as part of its specialised commissioning responsibilities. NHS England's NF1 service specification clearly sets out what needs to be in place for providers to offer evidence-based, safe and effective care, ensuring equity of access to a nationally consistent, high quality service. Specialist care is delivered by two designated centres based in Manchester (Central Manchester University Hospitals NHS Foundation Trust) and London (Guys and St. Thomas' NHS Foundation Trust, London) and these provide outreach support into other cities. The service is available to all patients with a suspected or confirmed diagnosis of NF1.</p><p> </p><p>The service specification can be viewed on the NHS England website at the following link:</p><p> </p><p>www.england.nhs.uk/wp-content/uploads/2013/06/b13-comp-neurofib-1.pdf.</p> answering member printed Earl Howe grouped question UIN HL961 HL962 question first answered 14/07/2014 16:18:37 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

76619

registered interest
date	09/07/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Neurofibromatosis
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government how they will ensure a co-ordinated response at local level for neurofibromatosis Type 1 sufferers.
tabling member printed	Lord Hunt of Kings Heath
uin	HL961
answer	answer is ministerial correction date of answer 14/07/2014 answer text <p>The number of people with neurofibromatosis type 1 (NF1) in England is estimated to number 11,267. The condition can be mild in some patients, manifesting itself only in patches of skin discolouration and soft benign bumps under the skin (neurofibromas), but for others NF1 causes more serious complications, including a rare form of cancer, curvature of the spine and nerve problems caused by more invasive neurofibromas.</p><p> </p><p>Since 1 April 2013, NHS England has been responsible for securing high quality care for all patients with complex NF1 as part of its specialised commissioning responsibilities. NHS England's NF1 service specification clearly sets out what needs to be in place for providers to offer evidence-based, safe and effective care, ensuring equity of access to a nationally consistent, high quality service. Specialist care is delivered by two designated centres based in Manchester (Central Manchester University Hospitals NHS Foundation Trust) and London (Guys and St. Thomas' NHS Foundation Trust, London) and these provide outreach support into other cities. The service is available to all patients with a suspected or confirmed diagnosis of NF1.</p><p> </p><p>The service specification can be viewed on the NHS England website at the following link:</p><p> </p><p>www.england.nhs.uk/wp-content/uploads/2013/06/b13-comp-neurofib-1.pdf.</p> answering member printed Earl Howe grouped question UIN HL960 HL962 question first answered 14/07/2014 16:18:38 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath