Asked by: Lord Caine (Conservative - Life peer)
Question to the Department of Health and Social Care:
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.
Answered by Lord Kamall
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.
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.
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.
Asked by: Lord Caine (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what specialist care and treatments are currently available through the NHS for people suffering from fibrodysplasia ossificans progressiva.
Answered by Lord Kamall
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.
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.
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.
Asked by: Lord Caine (Conservative - Life peer)
Question to the Department of Health and Social Care:
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.
Answered by Lord Kamall
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.
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.
Asked by: Lord Caine (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what support they are giving to families who are caring for family members suffering from fibrodysplasia ossificans progressiva.
Answered by Lord Kamall
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.
Asked by: Lord Caine (Conservative - Life peer)
Question to the HM Treasury:
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.
Answered by Lord Agnew of Oulton
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.
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.
Asked by: Lord Caine (Conservative - Life peer)
Question to the Northern Ireland Office:
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.
Answered by Viscount Younger of Leckie - Parliamentary Under-Secretary (Department for Work and Pensions)
The second report 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 previous report 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.
Asked by: Lord Caine (Conservative - Life peer)
Question to the Northern Ireland Office:
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.
Answered by Viscount Younger of Leckie - Parliamentary Under-Secretary (Department for Work and Pensions)
Good progress has been made in implementing the New Decade, New Approach deal, despite the huge challenge posed by the ongoing public health crisis.
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.
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.
Asked by: Lord Caine (Conservative - Life peer)
Question to the Department for Digital, Culture, Media & Sport:
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.
Answered by Baroness Barran - Parliamentary Under-Secretary (Department for Education)
DCMS continues to engage with the Music Venue Trust including through:
Regular ministerial roundtable discussions;
Regular contact at official level;
Membership of the ministerially chaired Entertainment and Events Working Group.
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.
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.
Asked by: Lord Caine (Conservative - Life peer)
Question to the Department for Transport:
To ask 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.
Answered by Baroness Vere of Norbiton - Parliamentary Secretary (HM Treasury)
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.
Asked by: Lord Caine (Conservative - Life peer)
Question to the Northern Ireland Office:
To ask Her Majesty's Government what is their current assessment of the structure, roles and purpose of paramilitary groups in Northern Ireland.
Answered by Lord Duncan of Springbank
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.