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170224

registered interest
date	15/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Neurology
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government how they propose to respond to the survey of Acute Neurology Services issued by the Association of British Neurologists in December; and what action they plan to take to ensure that clearly defined quality standards in acute neurology are achieved evenly throughout the United Kingdom in the near future.
tabling member printed	Lord Walton of Detchant
uin	HL3720
answer	answer is ministerial correction date of answer 31/12/2014 answer text <p>NHS England recognises that, as this report from the Association of British Neurologists (ABN) shows, there is room for improvement in the way neurology services are delivered in acute settings. It has been working with the ABN, the Neurological Alliance, the National Clinical Director for Neurological Conditions and representatives from the Strategic Clinical Networks to develop a framework for improving neurology standards within acute settings.</p><p> </p><p> </p><p> </p><p>The aim of this framework, which is in the process of being developed, is to help patients and their carers understand what standard of care they should expect, and to support clinicians, National Health Service staff, commissioners and others in the NHS and elsewhere that are responsible for the care of people with neurological conditions to understand how Acute services can be better delivered.</p><p> </p><p> </p><p> </p><p>Neurological care in Wales, Scotland and Northern Ireland is matter for the devolved administrations of those countries.</p><p> </p> answering member printed Earl Howe question first answered 31/12/2014 11:19:21 answering member 2000 label Biography information for Earl Howe
tabling member	1716 label Biography information for Lord Walton of Detchant

170239

registered interest
date	15/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	NHS England Specialised Commissioning Task Force
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government whether they will publish the full terms of reference of the NHS England specialised commissioning task force review, particularly in respect of its work relating to the funding and commissioning of treatments for rare diseases.
tabling member printed	Lord Hunt of Kings Heath
uin	HL3735
answer	answer is ministerial correction date of answer 31/12/2014 answer text <p>The aim of the specialised commissioning taskforce is to improve ways of working and to ensure that specialised commissioning is undertaken in the most efficient and effective way possible.</p><p> </p><p> </p><p> </p><p>Within the task force work programme there are specific projects. A number of the work streams are relevant to the funding of all specialised services, of which rare diseases will be an element.</p><p> </p><p> </p><p> </p><p>NHS England provides regular updates on the work of the taskforce to external and internal stakeholders every 3-4 weeks. There are also briefings given at key meetings and to key groups - for example the Patient and Public Voice Assurance Group. Updates can be found on the NHS England website.</p><p> </p> answering member printed Earl Howe question first answered 31/12/2014 11:19:09 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

170240

registered interest
date	15/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	NHS England Specialised Commissioning Task Force
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government whether the NHS England specialised commissioning task force will take into account the outcome of the National Institute for Health and Care Excellence review of the process for evaluating highly specialised technologies.
tabling member printed	Lord Hunt of Kings Heath
uin	HL3736
answer	answer is ministerial correction date of answer 31/12/2014 answer text <p>The Rare Diseases Advisory Group (RDAG) makes recommendations to NHS England and the devolved administrations of NHS Scotland, NHS Wales and NHS Northern Ireland on issues related to highly specialised services.</p><p> </p><p> </p><p> </p><p>RDAG makes recommendations to the Clinical Priorities Advisory Group about how highly specialised services should be commissioned.</p><p> </p><p> </p><p> </p><p>RDAG receives recommendations from Clinical Reference Groups set up by NHS England, and in addition formulates its advice by calling on sources of sound evidence from outside the National Health Service, such as professional bodies and patient groups.</p><p> </p><p> </p><p> </p><p>RDAG will respond to consultations issued by the National Institute for Health and Care Excellence (NICE) Highly Specialised Technology Programme, and provide advice to NHS England and the devolved administrations on the most appropriate services to deliver those highly specialised technologies that receive a positive technology appraisal determination from NICE.</p><p> </p> answering member printed Earl Howe question first answered 31/12/2014 11:18:52 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

170241

registered interest
date	15/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Rare Diseases Advisory Group
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government what advice they have received from NHS England’s Rare Diseases Advisory Group.
tabling member printed	Lord Hunt of Kings Heath
uin	HL3737
answer	answer is ministerial correction date of answer 31/12/2014 answer text <p>The Rare Diseases Advisory Group was established in March 2014 by NHS England. It was set up to provide NHS England and the devolved administrations of Scotland, Wales and Northern Ireland with consistent advice on developing and implementing the strategy for rare diseases and highly specialised services. The Department has not received any advice from the group.</p><p> </p> answering member printed Earl Howe question first answered 31/12/2014 11:18:37 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

170242

registered interest
date	15/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Rare Diseases
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government what budget NHS England has established to fund treatments for rare diseases.
tabling member printed	Lord Hunt of Kings Heath
uin	HL3738
answer	answer is ministerial correction date of answer 31/12/2014 answer text <p>NHS England holds a budget of £13 billion with which to commission 145 specialised services. NHS England does not separately identify the costs of the treatment of rare diseases because many of the specialised services – for example neurosciences – include treatments for patients who have both rare diseases and traumatic injuries.</p><p> </p> answering member printed Earl Howe question first answered 31/12/2014 11:18:27 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

170243

registered interest
date	15/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Rare Diseases
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government what estimates they have made of the potential cost of treatments for rare diseases over the next five years.
tabling member printed	Lord Hunt of Kings Heath
uin	HL3739
answer	answer is ministerial correction date of answer 31/12/2014 answer text <p>No forecast by NHS England of aggregate future expenditure on rare diseases is available.</p><p> </p><p> </p><p> </p><p>NHS England uses a number of methodologies to estimate the potential costs of any new treatment for rare diseases. This includes working with the horizon scanning team from the National Institute for Health Research as well as with industry representatives and other stakeholders such as patient groups and the National Institute for Health and Care Excellence.</p><p> </p> answering member printed Earl Howe question first answered 31/12/2014 11:18:16 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

170244

registered interest
date	15/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Rare Diseases
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government what is the process by which NHS England makes decisions on whether to support the funding of (1) National Institute for Health and Care Excellence (NICE) highly specialised technologies (HST) approved rare disease treatments, (2) non-NICE HST approved rare disease treatments, and (3) rare disease treatments that are not selected for HST evaluation.
tabling member printed	Lord Hunt of Kings Heath
uin	HL3740
answer	answer is ministerial correction date of answer 31/12/2014 answer text <p>The Rare Diseases Advisory Group (RDAG) was established in March 2014 by NHS England. It was set up to provide NHS England and the devolved administrations of Scotland, Wales and Northern Ireland with consistent advice on developing and implementing the strategy for rare diseases and highly specialised services. The RDAG will also provide advice to NHS England and the devolved administrations to enable it to respond to consultations issued by the National Institute for Health and Care Excellence (NICE) Highly Specialised Technology Programme and to provide advice to NHS England and the devolved administrations on the most appropriate services to deliver those highly specialised technologies that receive a positive technology appraisal determination from NICE.</p><p> </p><p>At the three meetings held by RDAG in 2014 the group has addressed proposals for some new treatments to be considered for provision in the National Health Service. It has also considered a number of services, currently provided within the NHS, that meet the criteria of Highly Specialised Services (HSS) and should be considered as highly specialised and re-configured to be provided in expert centres. The group has also considered a number of service specifications for HSS. Recommendations have been made to the Clinical Priorities Advisory Group based on these decisions. Any recommendations agreed by NHS England will go out for a full three month consultation.</p><p> </p> answering member printed Earl Howe question first answered 31/12/2014 11:13:52 answering member 2000 label Biography information for Earl Howe
tabling member	2024 label Biography information for Lord Hunt of Kings Heath

170257

registered interest
date	15/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	IVF
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government, further to the Written Answer by Earl Howe on 15 December (HL3301), how many foetal reductions performed following in vitro fertilisation over the past decade were performed between (1) weeks 0–5, (2) weeks 6–13, and (3) weeks 14–16.
tabling member printed	Lord Alton of Liverpool
uin	HL3753
answer	answer is ministerial correction date of answer 31/12/2014 answer text <p>The Human Fertilisation and Embryology Authority has advised that in the decade preceding 31 December 2012, the Authority’s register records the following incidences of foetal reductions performed following in vitro fertilisation:</p><p> </p><p> </p><p> </p><table><tbody><tr><td><p>Foetal reduction in weeks 0-5</p></td><td><p>Foetal reduction in weeks 6-13</p></td><td><p>Foetal reduction in weeks 14-16</p></td></tr><tr><td><p>0</p></td><td><p>156</p></td><td><p>27</p></td></tr></tbody></table><p> </p><p> </p><p> </p><p> </p><p> </p> answering member printed Earl Howe question first answered 31/12/2014 11:13:26 answering member 2000 label Biography information for Earl Howe
tabling member	738 label Biography information for Lord Alton of Liverpool

170258

registered interest
date	15/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	IVF
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government, further to the Written Answer by Earl Howe on 15 December (HL3302), how exhaustively the POLG gene at chromosomal locus 15q25 has been sequenced in all individuals known to be affected by the mitochondrial diseases listed in Annex D of the mitochondrial donation consultation document in order to establish the evidence base described in that answer; and whether the Human Fertilisation and Embryology Authority would routinely require sequencing of the POLG gene in order to ensure that pronuclear transfer or spindle-chromosomal transfer should only be used for patients who have an inherited mitochondrial DNA mutation and not where faulty mitochondria may have arisen from a nuclear gene mutation.
tabling member printed	Lord Alton of Liverpool
uin	HL3754
answer	answer is ministerial correction date of answer 05/01/2015 answer text <p>We are advised by the Wellcome Trust that diagnosis of mitochondrial DNA disease is performed within the National Health Service Highly Specialised Service diagnostic laboratory using well established diagnostic algorithms and Practice Guidelines for the Molecular Diagnosis of Mitochondrial Diseases published by the Clinical Molecular Genetics Society at:</p><p> </p><p> </p><p> </p><p><a href="http://www.acgs.uk.com/media/774654/mito_2008.pdf" target="_blank">http://www.acgs.uk.com/media/774654/mito_2008.pdf</a></p><p> </p><p> </p><p> </p><p>Mitochondrial defects that arise due to nuclear gene mutations, such as DNA polymerase gamma, routinely give rise to multiple different mutations of mitochondrial DNA within patient tissues or depletion of mitochondrial DNA. This is apparent upon genetic testing and would then lead to analysis of the DNA polymerase gamma gene to identify the nuclear gene defect.</p><p> </p><p> </p><p> </p><p>The Human Fertilisation and Embryology Authority has advised that it will design the regulatory process following the passage of any regulations to allow mitochondrial donation. Should Parliament pass the mitochondrial donation regulations, the technique could only be licensed for the avoidance of diseases caused by inherited mutations in mitochondrial DNA, not nuclear DNA.</p><p> </p> answering member printed Earl Howe question first answered 05/01/2015 12:41:56 answering member 2000 label Biography information for Earl Howe attachment 1 file name CMGS Practice Guidelines for the Molecular Diagnosis of Mitochondrial Diseases.pdf title CMGS Practice Guidelines
tabling member	738 label Biography information for Lord Alton of Liverpool

170266

registered interest
date	15/12/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Antibiotics
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government, in the light of the annual progress report on the United Kingdom 5 Year Antimicrobial Resistance Strategy, how they plan to handle newly launched or soon-to-be launched antibiotics in a way that is compatible with the broad goals of the strategy.
tabling member printed	Baroness Manzoor
uin	HL3762
answer	answer is ministerial correction date of answer 31/12/2014 answer text <p>The Department is in the process of convening a group involving industry to explore how to address interim issues pending the conclusion of the review on antimicrobial resistance. Among these will be how to treat new antimicrobial products which are close to launch.</p><p> </p> answering member printed Earl Howe question first answered 31/12/2014 11:12:05 answering member 2000 label Biography information for Earl Howe
tabling member	4289 label Biography information for Baroness Manzoor