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1364503

	registered interest
	date	28/10/2021
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Fibrodysplasia Ossificans Progressiva: Health Services
	house id	2
	legislature	25277 pref label House of Lords
	question text	To ask Her Majesty's Government what specialist care and treatments are currently available through the NHS for people suffering from fibrodysplasia ossificans progressiva.
	tabling member printed	Lord Caine
	uin	HL3513
	answer	answer is ministerial correction date of answer 11/11/2021 answer text <p>There is no specific prescribed service for treatment of fibrodysplasia ossificans progressiva (FOP). However, children with FOP are cared for by National Health Service paediatric rheumatologists and/or geneticists with input from other clinicians as required.</p><p>New medicines and treatments for ultra-rare diseases such as FOP are considered via highly specialised technology (HST) evaluations by the National Institute for Health and Care Excellence (NICE). NICE is currently developing HST guidance on palovarotene for preventing heterotopic ossification associated with FOP.</p><p>The UK Rare Diseases Framework, published in 2021, outlined four key priorities to improve the lives of those living with rare diseases, such as FOP, including improving access to specialist care, treatment and drugs. Action plans to improve access to care and treatment will be published by each of the four United Kingdom nations within two years. A copy of the Framework is attached.</p> answering member printed Lord Kamall grouped question UIN HL3514 question first answered 11/11/2021 13:34:39 answering member 4909 label Biography information for Lord Kamall attachment 1 file name The UK Rare Diseases Framework.pdf title The UK Rare Diseases Framework
	tabling member	4581 label Biography information for Lord Caine

1364504

	registered interest
	date	28/10/2021
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Fibrodysplasia Ossificans Progressiva: Health Services
	house id	2
	legislature	25277 pref label House of Lords
	question text	To ask Her Majesty's Government what plans they have, if any, to expand the provision of specialist NHS care and treatment for people suffering from fibrodysplasia ossificans progressiva.
	tabling member printed	Lord Caine
	uin	HL3514
	answer	answer is ministerial correction date of answer 11/11/2021 answer text <p>There is no specific prescribed service for treatment of fibrodysplasia ossificans progressiva (FOP). However, children with FOP are cared for by National Health Service paediatric rheumatologists and/or geneticists with input from other clinicians as required.</p><p>New medicines and treatments for ultra-rare diseases such as FOP are considered via highly specialised technology (HST) evaluations by the National Institute for Health and Care Excellence (NICE). NICE is currently developing HST guidance on palovarotene for preventing heterotopic ossification associated with FOP.</p><p>The UK Rare Diseases Framework, published in 2021, outlined four key priorities to improve the lives of those living with rare diseases, such as FOP, including improving access to specialist care, treatment and drugs. Action plans to improve access to care and treatment will be published by each of the four United Kingdom nations within two years. A copy of the Framework is attached.</p> answering member printed Lord Kamall grouped question UIN HL3513 question first answered 11/11/2021 13:34:39 answering member 4909 label Biography information for Lord Kamall attachment 1 file name The UK Rare Diseases Framework.pdf title The UK Rare Diseases Framework
	tabling member	4581 label Biography information for Lord Caine

1364505

	registered interest
	date	28/10/2021
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Fibrodysplasia Ossificans Progressiva: Research
	house id	2
	legislature	25277 pref label House of Lords
	question text	To ask Her Majesty's Government what plans they have, if any, to increase research funding in order to find more effective treatments and a cure for fibrodysplasia ossificans progressiva.
	tabling member printed	Lord Caine
	uin	HL3515
	answer	answer is ministerial correction date of answer 11/11/2021 answer text <p>The Department funds research into rare diseases such as fibrodysplasia ossificans progressiva (FOP) via the National Institute for Health Research (NIHR). In the past five years, the Department has provided funding to support eight studies into FOP through the NIHR. Within the NIHR, for all disease areas, the amount of funding depends on the volume and quality of scientific activity and the usual practice is not to ring-fence funds for particular topics.</p><p>The UK Rare Diseases Framework, published in January 2021, outlined a vision for improving the lives of those with rare diseases, such as FOP, including a focus on pioneering research. Action plans setting out further details on this research will be published by each of the four United Kingdom nations within two years. A copy of the Framework is attached.</p> answering member printed Lord Kamall question first answered 11/11/2021 13:33:43 answering member 4909 label Biography information for Lord Kamall attachment 1 file name The UK Rare Diseases Framework.pdf title The UK Rare Diseases Framework
	tabling member	4581 label Biography information for Lord Caine

1364506

	registered interest
	date	28/10/2021
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Fibrodysplasia Ossificans Progressiva: Carers
	house id	2
	legislature	25277 pref label House of Lords
	question text	To ask Her Majesty's Government what support they are giving to families who are caring for family members  suffering from fibrodysplasia ossificans progressiva.
	tabling member printed	Lord Caine
	uin	HL3516
	answer	answer is ministerial correction date of answer 11/11/2021 answer text <p>For patients with rare diseases such as fibrodysplasia ossificans progressiva, expert centres provide clinical guidance, support and advice to patients, their families and carers. The NHS Long Term Plan set out ambitions to improve the identification and support of unpaid carers. These ambitions include providing timely information and support for contingency planning; developing more integrated support systems within primary care; support for young carers; and work to ensure that carers from frequently excluded communities are engaged and enabled to use services.</p> answering member printed Lord Kamall question first answered 11/11/2021 16:21:20 answering member 4909 label Biography information for Lord Kamall
	tabling member	4581 label Biography information for Lord Caine

1303158

	registered interest
	date	16/03/2021
	answering body	Treasury
	answering dept id	14
	answering dept short name	Treasury
	answering dept sort name	Treasury
	hansard heading	Corporation Tax: Northern Ireland
	house id	2
	legislature	25277 pref label House of Lords
	question text	To ask Her Majesty's Government what plans, if any, they have to devolve responsibility for corporation tax to the Northern Ireland Executive; what assessment they have made of the expected change in the level of revenue generated from corporation tax from any such transfer of responsibility; and, in particular, whether Her Majesty’s Government would be able to offset any shortfall in revenue resulting from such a transfer of responsibility.
	tabling member printed	Lord Caine
	uin	HL14260
	answer	answer is ministerial correction date of answer 31/03/2021 answer text <p>The Stormont House Agreement between the UK Government and the Northern Ireland Executive agreed, in principle, for the power to set the rate of corporation tax in Northern Ireland on certain trading profits to be devolved to the Northern Ireland Assembly.</p><p>It was agreed that the Executive would need to demonstrate that its finances were on a sustainable footing before devolution of this power could be undertaken, and that the Executive’s block grant would need to be adjusted to reflect the corporation tax revenues foregone if the devolved power were exercised.</p> answering member printed Lord Agnew of Oulton question first answered 31/03/2021 13:22:09 answering member 4689 label Biography information for Lord Agnew of Oulton
	tabling member	4581 label Biography information for Lord Caine

1290166

	registered interest
	date	25/02/2021
	answering body	Northern Ireland Office
	answering dept id	21
	answering dept short name	Northern Ireland
	answering dept sort name	Northern Ireland
	hansard heading	Northern Ireland Government
	house id	2
	legislature	25277 pref label House of Lords
	question text	To ask Her Majesty's Government what outstanding legislative commitments they have for Northern Ireland in respect of the New Decade, New Approach Agreement 2020, published on 8 January 2020; and when they expect that these will be fulfilled.
	tabling member printed	Lord Caine
	uin	HL13693
	answer	answer is ministerial correction date of answer 09/03/2021 answer text <p>Good progress has been made in implementing the New Decade, New Approach deal, despite the huge challenge posed by the ongoing public health crisis.</p><p> </p><p>The UK Government has released over £555 million of the £2billion of funding agreed in the deal, and has delivered multiple commitments including appointing a Veterans Commissioner, launching the Shared History Fund as part of our programme to mark the centenary of Northern Ireland, and establishing the governance structures that underpin NDNA. On 24 February, the Secretary of State for Northern Ireland signed the Heads of Terms on the Derry/Londonderry and Strabane City Deal that will deliver tangible benefits to the North West and the whole of Northern Ireland.</p><p> </p><p>The UK Government is working to deliver the next tranche of our commitments, such as progressing legislation on the sustainability of the institutions and reforms to the Petition of Concern mechanism.</p><p> </p> answering member printed Viscount Younger of Leckie question first answered 09/03/2021 16:17:11 answering member 4169 label Biography information for Viscount Younger of Leckie
	tabling member	4581 label Biography information for Lord Caine

1290167

	registered interest
	date	25/02/2021
	answering body	Northern Ireland Office
	answering dept id	21
	answering dept short name	Northern Ireland
	answering dept sort name	Northern Ireland
	hansard heading	Petition of Concern
	house id	2
	legislature	25277 pref label House of Lords
	question text	To ask Her Majesty's Government how many reports on the operation of the Petition of Concern process in the Northern Ireland Assembly have been laid before both Houses of Parliament, in accordance with the commitment in Annex A of the New Decade, New Approach Agreement 2020, published on 8 January 2020, to lay such reports every six months.
	tabling member printed	Lord Caine
	uin	HL13694
	answer	answer is ministerial correction date of answer 09/03/2021 answer text <p>The <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/951669/20201221_CP_for_second_report_v2.pdf" target="_blank">second report</a> on the operation of the Petition of Concern process was published on 12 January 2021. It recorded that no Petitions of Concern have been lodged in respect of any motion in the Assembly since the <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/901146/First_Report_on_the_Use_of_the_Petition_of_Concern_Mechanism_in_the_Northern_Ireland_Assembly.pdf_-_Copy.pdf" target="_blank">previous report</a> on 16 July 2020, and indeed, since the Executive was formed on 11 January 2020. The next report will deal with the period from 10 January 2021 to 11 July 2021.</p><p> </p> answering member printed Viscount Younger of Leckie question first answered 09/03/2021 16:18:25 answering member 4169 label Biography information for Viscount Younger of Leckie
	tabling member	4581 label Biography information for Lord Caine

1218107

	registered interest
	date	25/06/2020
	answering body	Department for Digital, Culture, Media and Sport
	answering dept id	10
	answering dept short name	Digital, Culture, Media and Sport
	answering dept sort name	Digital, Culture, Media and Sport
	hansard heading	Music Venues: Coronavirus
	house id	2
	legislature	25277 pref label House of Lords
	question text	To ask Her Majesty's Government, further to the answer by Baroness Barran on 23 April (HL Deb, col 82), what further discussions they have held with the Music Venue Trust; and what additional support is being provided for small music venues in (1) London, and (2) other parts of the UK.
	tabling member printed	Lord Caine
	uin	HL6150
	answer	answer is ministerial correction date of answer 02/07/2020 answer text <p>DCMS continues to engage with the Music Venue Trust including through:</p><p><strong> </strong></p><ul><li><p>Regular ministerial roundtable discussions;</p></li><li><p>Regular contact at official level;</p></li><li><p>Membership of the ministerially chaired Entertainment and Events Working Group.</p></li></ul><p><strong> </strong></p><p>The Entertainment and Events Working Group was established alongside a number of working groups to support the Secretary of State’s Cultural Renewal Taskforce. The Music Venue Trust is an active and valued member of the Working Group, the focus of which is to produce sector-led guidance for the safe reopening of live music venues both in London and across the UK.</p><p><strong> </strong></p><p>We continue to speak with HM Treasury colleagues to ensure that the full spectrum of government support reaches the UK's world-leading music industry.</p><p> </p> answering member printed Baroness Barran question first answered 02/07/2020 16:28:26 answering member 4703 label Biography information for Baroness Barran
	tabling member	4581 label Biography information for Lord Caine

1203078

	registered interest
	date	11/06/2020
	answering body	Department for Transport
	answering dept id	27
	answering dept short name	Transport
	answering dept sort name	Transport
	hansard heading	A1: Yorkshire and the Humber
	house id	2
	legislature	25277 pref label House of Lords
	question text	Her Majesty's Government whether they will bring forward plans to widen the A1 between Darrington and Doncaster; and what steps they are taking to ensure any such plans (1) help boost growth and investment in Yorkshire, (2) reduce congestion on the M1 between Leeds and Sheffield, and (3) support the Northern Powerhouse.
	tabling member printed	Lord Caine
	uin	HL5586
	answer	answer is ministerial correction date of answer 25/06/2020 answer text <p>The second Road Investment Strategy, published with the Budget in March, confirmed funding for the development of a scheme to enhance the A1 between Darrington and Doncaster. In developing the scheme, Highways England will take into account the potential benefits for road users on this and other routes, and for the economy.</p><p> </p> answering member printed Baroness Vere of Norbiton question first answered 25/06/2020 15:27:38 answering member 4580 label Biography information for Baroness Vere of Norbiton
	tabling member	4581 label Biography information for Lord Caine

1176595

	registered interest
	date	05/02/2020
	answering body	Northern Ireland Office
	answering dept id	21
	answering dept short name	Northern Ireland
	answering dept sort name	Northern Ireland
	hansard heading	Proscribed Organisations: Northern Ireland
	house id	2
	legislature	25277 pref label House of Lords
	question text	To ask Her Majesty's Government what is their current assessment of the structure, roles and purpose of paramilitary groups in Northern Ireland.
	tabling member printed	Lord Caine
	uin	HL1351
	answer	answer is ministerial correction date of answer 12/02/2020 answer text <p>There was never and remains no justification for the existence of paramilitary groups in Northern Ireland. Responsibility for tackling activity by paramilitary groups or those associated with them, that have previously declared ceasefires rests with law enforcement and the devolved authorities. Both the Fresh Start and the New Decade, New Approach Agreements commit all relevant authorities to take a range of measures to tackle paramilitary activity, however that manifests itself. Updates on relevant activity to address this problem are provided to the Policing Board, the Department of Justice and the Justice Committee. The UK Government has the lead on paramilitary groups which have not declared ceasefires. These groups represent a SEVERE national security threat and although small and disparate, continue to show a reckless disregard for public safety. As a Government, we are committed to ensuring that our response to these groups and the harm these causes are robust and effective. <em> </em></p> answering member printed Lord Duncan of Springbank question first answered 12/02/2020 16:04:13 answering member 4686 label Biography information for Lord Duncan of Springbank
	tabling member	4581 label Biography information for Lord Caine