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79764
registered interest false more like this
date less than 2014-07-29more like thismore than 2014-07-29
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Neurofibromatosis remove filter
house id 2 more like this
legislature
25277
pref label House of Lords more like this
question text To ask Her Majesty’s Government what action they are taking to ensure early diagnosis of patients with neurofibromatosis type 1. more like this
tabling member printed
Lord Hunt of Kings Heath more like this
uin HL1656 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2014-08-18more like thismore than 2014-08-18
answer text <p><strong>Information for the public on the diagnosis and treatment of n</strong>eurofibromatosis<strong>type 1 (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:</strong></p><p><strong> </strong></p><p><strong>www.nhs.uk/conditions/Neurofibromatosis/Pages/Introduction.aspx </strong></p><p><strong> </strong></p><p><strong>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 at:</strong></p><p><strong> </strong></p><p><strong>www.evidence.nhs.uk</strong></p><p><strong> </strong></p><p><strong>This </strong>provides free access to quality health and social care evidence and best practice.</p><p> </p><p>NHS England commissions complex NF1 services as part of its remit to deliver specialised services and has published a service specification for NF1. Diagnostic services are a core element of this specification and can be accessed by all patients with a suspected or confirmed diagnosis on referral.</p>
answering member printed Earl Howe remove filter
question first answered
less than 2014-08-18T10:08:22.0139918Zmore like thismore than 2014-08-18T10:08:22.0139918Z
answering member
2000
label Biography information for Earl Howe more like this
tabling member
2024
label Biography information for Lord Hunt of Kings Heath more like this
79646
registered interest false more like this
date less than 2014-07-28more like thismore than 2014-07-28
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Neurofibromatosis remove filter
house id 2 more like this
legislature
25277
pref label House of Lords more like this
question text To ask Her Majesty’s Government out of all known patients with neurofibromatosis Type 1, how many were treated in the last 12 months at the two designated national specialist care centres. more like this
tabling member printed
Lord Hunt of Kings Heath more like this
uin HL1538 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2014-08-18more like thismore than 2014-08-18
answer text <p>Whilst the number of people with neurofibromatosis Type 1 (NF1) in England is estimated to number 11,267, the number of patients with a confirmed diagnosis is not collected.</p><p> </p><p>In the following table we have provided the number of finished admission episodes (FAEs) for patients with a primary diagnosis of NF1 who were treated at the two national specialist centres in 2012-13, the most recent period for which data is available. An FAE is a continuous period of admitted patient care under one consultant within one health care provider. It should be noted the figures do not represent a count of patients, as a person may have more than one episode of care within the same stay in hospital or in different stays in the same year.</p><p> </p><p> </p><table><tbody><tr><td colspan="2"><p>FAEs in 2012-13 for patients with primary or secondary diagnosis of NF1 (non-malignant)</p><p> </p></td></tr><tr><td><p>Trust</p></td><td><p>Numbers</p></td></tr><tr><td><p>Central Manchester University Hospitals NHS Foundation Trust</p></td><td><p>213</p></td></tr><tr><td><p>Guys and St. Thomas’ NHS Foundation Trust</p></td><td><p>124</p></td></tr></tbody></table><p> </p><p> </p><p> </p><p> </p><p> </p><p><em>Source:</em> Hospital Episode Statistics (HES), Health and Social Care Information Centre</p><p> </p><p>Information concerning the number of patients waiting to be treated at the two national centres is not available.</p><p> </p>
answering member printed Earl Howe remove filter
grouped question UIN HL1539 more like this
question first answered
less than 2014-08-18T10:18:05.5480768Zmore like thismore than 2014-08-18T10:18:05.5480768Z
answering member
2000
label Biography information for Earl Howe more like this
tabling member
2024
label Biography information for Lord Hunt of Kings Heath more like this
79647
registered interest false more like this
date less than 2014-07-28more like thismore than 2014-07-28
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Neurofibromatosis remove filter
house id 2 more like this
legislature
25277
pref label House of Lords more like this
question text To ask Her Majesty’s Government how many patients with neurofibromatosis Type 1 are waiting to be treated at the two designated national specialist care centres. more like this
tabling member printed
Lord Hunt of Kings Heath more like this
uin HL1539 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2014-08-18more like thismore than 2014-08-18
answer text <p>Whilst the number of people with neurofibromatosis Type 1 (NF1) in England is estimated to number 11,267, the number of patients with a confirmed diagnosis is not collected.</p><p> </p><p>In the following table we have provided the number of finished admission episodes (FAEs) for patients with a primary diagnosis of NF1 who were treated at the two national specialist centres in 2012-13, the most recent period for which data is available. An FAE is a continuous period of admitted patient care under one consultant within one health care provider. It should be noted the figures do not represent a count of patients, as a person may have more than one episode of care within the same stay in hospital or in different stays in the same year.</p><p> </p><p> </p><table><tbody><tr><td colspan="2"><p>FAEs in 2012-13 for patients with primary or secondary diagnosis of NF1 (non-malignant)</p><p> </p></td></tr><tr><td><p>Trust</p></td><td><p>Numbers</p></td></tr><tr><td><p>Central Manchester University Hospitals NHS Foundation Trust</p></td><td><p>213</p></td></tr><tr><td><p>Guys and St. Thomas’ NHS Foundation Trust</p></td><td><p>124</p></td></tr></tbody></table><p> </p><p> </p><p> </p><p> </p><p> </p><p><em>Source:</em> Hospital Episode Statistics (HES), Health and Social Care Information Centre</p><p> </p><p>Information concerning the number of patients waiting to be treated at the two national centres is not available.</p><p> </p>
answering member printed Earl Howe remove filter
grouped question UIN HL1538 more like this
question first answered
less than 2014-08-18T10:18:04.9492046Zmore like thismore than 2014-08-18T10:18:04.9492046Z
answering member
2000
label Biography information for Earl Howe more like this
tabling member
2024
label Biography information for Lord Hunt of Kings Heath more like this
79648
registered interest false more like this
date less than 2014-07-28more like thismore than 2014-07-28
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Neurofibromatosis remove filter
house id 2 more like this
legislature
25277
pref label House of Lords more like this
question text To ask Her Majesty’s Government what arrangements are being made to treat patients with neurofibromatosis Type 1 who do not meet the thresholds set at the two designated national specialist care centres. more like this
tabling member printed
Lord Hunt of Kings Heath more like this
uin HL1540 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2014-08-18more like thismore than 2014-08-18
answer text <p>NHS England’s service specification for complex Type 1 neurofibromatosis (NF1) sets<br>out what providers must have in place offer evidence-based, safe and effective care, ensuring equity of access to a nationally consistent, high quality service. The specification sets out a number of aims and objectives for the service which includes the operation of a rolling programme of clinical audit to test current practice and inform the evolution of care for patients with complex NF1.</p><p> </p><p>The complex NF1 service is accessible to all patients with a suspected or confirmed diagnosis of NF1, subject to an appropriate referral. Those patients identified by the service as having non-complex NF1 will have their care transferred to the appropriate local team as required.</p><p> </p><p> </p><p> </p> more like this
answering member printed Earl Howe remove filter
grouped question UIN HL1541 more like this
question first answered
less than 2014-08-18T10:17:06.7522584Zmore like thismore than 2014-08-18T10:17:06.7522584Z
answering member
2000
label Biography information for Earl Howe more like this
tabling member
2024
label Biography information for Lord Hunt of Kings Heath more like this
79649
registered interest false more like this
date less than 2014-07-28more like thismore than 2014-07-28
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Neurofibromatosis remove filter
house id 2 more like this
legislature
25277
pref label House of Lords more like this
question text To ask Her Majesty’s Government what arrangements are being made to monitor the implementation of the service specification for treating patients with neurofibromatosis Type 1. more like this
tabling member printed
Lord Hunt of Kings Heath more like this
uin HL1541 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2014-08-18more like thismore than 2014-08-18
answer text <p>NHS England’s service specification for complex Type 1 neurofibromatosis (NF1) sets<br>out what providers must have in place offer evidence-based, safe and effective care, ensuring equity of access to a nationally consistent, high quality service. The specification sets out a number of aims and objectives for the service which includes the operation of a rolling programme of clinical audit to test current practice and inform the evolution of care for patients with complex NF1.</p><p> </p><p>The complex NF1 service is accessible to all patients with a suspected or confirmed diagnosis of NF1, subject to an appropriate referral. Those patients identified by the service as having non-complex NF1 will have their care transferred to the appropriate local team as required.</p><p> </p><p> </p><p> </p> more like this
answering member printed Earl Howe remove filter
grouped question UIN HL1540 more like this
question first answered
less than 2014-08-18T10:17:05.9817162Zmore like thismore than 2014-08-18T10:17:05.9817162Z
answering member
2000
label Biography information for Earl Howe more like this
tabling member
2024
label Biography information for Lord Hunt of Kings Heath more like this
77796
registered interest false more like this
date less than 2014-07-14more like thismore than 2014-07-14
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Neurofibromatosis remove filter
house id 2 more like this
legislature
25277
pref label House of Lords more like this
question text To ask Her Majesty’s Government what steps they plan to take to encourage early diagnosis of neurofibromatosis Type 1. more like this
tabling member printed
Lord Hunt of Kings Heath more like this
uin HL1093 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2014-07-22more like thismore than 2014-07-22
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 remove filter
grouped question UIN
HL1094 more like this
HL1096 more like this
question first answered
less than 2014-07-22T16:22:11.572635Zmore like thismore than 2014-07-22T16:22:11.572635Z
answering member
2000
label Biography information for Earl Howe more like this
tabling member
2024
label Biography information for Lord Hunt of Kings Heath more like this
77797
registered interest false more like this
date less than 2014-07-14more like thismore than 2014-07-14
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Neurofibromatosis remove filter
house id 2 more like this
legislature
25277
pref label House of Lords more like this
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. more like this
tabling member printed
Lord Hunt of Kings Heath more like this
uin HL1094 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2014-07-22more like thismore than 2014-07-22
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 remove filter
grouped question UIN
HL1093 more like this
HL1096 more like this
question first answered
less than 2014-07-22T16:22:12.2170706Zmore like thismore than 2014-07-22T16:22:12.2170706Z
answering member
2000
label Biography information for Earl Howe more like this
tabling member
2024
label Biography information for Lord Hunt of Kings Heath more like this
77798
registered interest false more like this
date less than 2014-07-14more like thismore than 2014-07-14
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Neurofibromatosis remove filter
house id 2 more like this
legislature
25277
pref label House of Lords more like this
question text To ask Her Majesty's Government what if any financial support they are giving to the Neuro Foundation. more like this
tabling member printed
Lord Hunt of Kings Heath more like this
uin HL1095 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2014-07-17more like thismore than 2014-07-17
answer text <p>The Department does not currently provide any financial support to the Neuro Foundation.</p><p><strong> </strong></p><p> </p> more like this
answering member printed Earl Howe remove filter
question first answered
less than 2014-07-17T12:00:32.7319206Zmore like thismore than 2014-07-17T12:00:32.7319206Z
answering member
2000
label Biography information for Earl Howe more like this
tabling member
2024
label Biography information for Lord Hunt of Kings Heath more like this
77799
registered interest false more like this
date less than 2014-07-14more like thismore than 2014-07-14
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Neurofibromatosis remove filter
house id 2 more like this
legislature
25277
pref label House of Lords more like this
question text To ask Her Majesty’s Government what plans they have to increase awareness amongst midwives and general practitioners of neurofibromatosis Type 1. more like this
tabling member printed
Lord Hunt of Kings Heath more like this
uin HL1096 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2014-07-22more like thismore than 2014-07-22
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 remove filter
grouped question UIN
HL1093 more like this
HL1094 more like this
question first answered
less than 2014-07-22T16:22:10.7390499Zmore like thismore than 2014-07-22T16:22:10.7390499Z
answering member
2000
label Biography information for Earl Howe more like this
tabling member
2024
label Biography information for Lord Hunt of Kings Heath more like this
76618
registered interest false more like this
date less than 2014-07-09more like thismore than 2014-07-09
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Neurofibromatosis remove filter
house id 2 more like this
legislature
25277
pref label House of Lords more like this
question text To ask Her Majesty's Government what plans they have to develop a national service framework for neurofibromatosis Type 1 sufferers. more like this
tabling member printed
Lord Hunt of Kings Heath more like this
uin HL960 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2014-07-14more like thismore than 2014-07-14
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 remove filter
grouped question UIN
HL961 more like this
HL962 more like this
question first answered
less than 2014-07-14T16:18:37.8359721Zmore like thismore than 2014-07-14T16:18:37.8359721Z
answering member
2000
label Biography information for Earl Howe more like this
tabling member
2024
label Biography information for Lord Hunt of Kings Heath more like this