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79764

registered interest
date	29/07/2014
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 action they are taking to ensure early diagnosis of patients with neurofibromatosis type 1.
tabling member printed	Lord Hunt of Kings Heath
uin	HL1656
answer	answer is ministerial correction date of answer 18/08/2014 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 question first answered 18/08/2014 10:08:22 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

79646

registered interest
date	28/07/2014
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 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.
tabling member printed	Lord Hunt of Kings Heath
uin	HL1538
answer	answer is ministerial correction date of answer 18/08/2014 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 grouped question UIN HL1539 question first answered 18/08/2014 10:18:05 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

79647

registered interest
date	28/07/2014
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 many patients with neurofibromatosis Type 1 are waiting to be treated at the two designated national specialist care centres.
tabling member printed	Lord Hunt of Kings Heath
uin	HL1539
answer	answer is ministerial correction date of answer 18/08/2014 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 grouped question UIN HL1538 question first answered 18/08/2014 10:18:04 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

79648

registered interest
date	28/07/2014
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 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.
tabling member printed	Lord Hunt of Kings Heath
uin	HL1540
answer	answer is ministerial correction date of answer 18/08/2014 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> answering member printed Earl Howe grouped question UIN HL1541 question first answered 18/08/2014 10:17:06 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

79649

registered interest
date	28/07/2014
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 arrangements are being made to monitor the implementation of the service specification for treating patients with neurofibromatosis Type 1.
tabling member printed	Lord Hunt of Kings Heath
uin	HL1541
answer	answer is ministerial correction date of answer 18/08/2014 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> answering member printed Earl Howe grouped question UIN HL1540 question first answered 18/08/2014 10:17:05 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

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