Asked by: James Frith (Labour - Bury North)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure the availability of treatments for patients with rare diseases since the introduction of the Orphan Medical Product Regulation 2000.
Answered by Steve Brine
The Government is committed to improving the lives of all those affected by a rare disease. Implementation plans by NHS England and the Department were published jointly in January 2018 and describe the actions and framework in place to deliver this commitment to improve the lives of those affected by rare disease, as defined in the UK Strategy for Rare Diseases.
Through its technology appraisal and highly specialised technologies programmes, the National Institute for Health and Care Excellence (NICE) plays an important role in ensuring that patients, including patients with rare diseases, are able to benefit from effective new treatments. NICE has recommended a number of drugs for rare diseases through these programmes that are now routinely funded by the National Health Service for eligible patients.
Asked by: James Frith (Labour - Bury North)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many claims for continuing care payments remain outstanding since the deadline for applications was set.
Answered by Caroline Dinenage
In March 2012, deadlines were introduced for requests for an assessment for NHS Continuing Healthcare ‘previously unassessed periods of care’ between 1 April 2004 and 31 March 2012 in England. Approximately 63,000 requests for an assessment were received, with approximately 25,000 resulting in a full assessment.
As at 30 November 2018, the number of payments for periods of care within the 2004-2012 period that remain outstanding is 624. This number relates to cases which have been assessed as eligible (either initially or on appeal) and for which payments remain outstanding.
Data on NHS Continuing Healthcare previously unassessed periods of care from April 2012 is not held.
Asked by: James Frith (Labour - Bury North)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what estimate he has made of the cost to the public purse of funding the outstanding retrospective claims under the continuing care programme; what interest rate is being applied to such claims; and what estimate he has made of the average cost to the public purse of those outstanding claims.
Answered by Caroline Dinenage
The estimated cost of reimbursement for the outstanding claims from periods of care between 1 April 2004 and 31 March 2012 is £14.5 million. Data on claims for previously unassessed periods of care from 1 April 2012 is not held.
The ‘NHS Continuing Healthcare Refreshed Redress Guidance’, published on 1 April 2015, advises clinical commissioning groups to calculate interest using the Retail Price Index. The estimated average cost per claim is £23,000.
Asked by: James Frith (Labour - Bury North)
Question to the Home Office:
To ask the Secretary of State for the Home Department, how many infrastructure contracts overseen by his Department have been let with the stipulation that a Project Bank Account must be applied in the last year.
Answered by Victoria Atkins - Secretary of State for Health and Social Care
No infrastructure contracts have been let with the stipulation that a Project Bank Account must be applied for the time period requested.
Asked by: James Frith (Labour - Bury North)
Question to the Department for Transport:
To ask the Secretary of State for Transport, how many infrastructure contracts overseen by his Department have been let with the stipulation that a Project Bank Account must be applied in the last year.
Answered by Jesse Norman
In 2018 the Department for Transport Group created 62 Project Bank Accounts for infrastructure contracts. 61 of these bank accounts relate to Highways England, and 1 relates to Network Rail.
Asked by: James Frith (Labour - Bury North)
Question to the Department for Environment, Food and Rural Affairs:
To ask the Secretary of State for Environment, Food and Rural Affairs, how many infrastructure contracts overseen by his Department have been let with the stipulation that a Project Bank Account must be applied in the last year.
Answered by George Eustice
The government’s infrastructure contracts make provision for the use of Project Bank Accounts (PBAs), and departments have committed to use PBAs on all infrastructure projects unless there are compelling reasons not to do so. Due to the range of infrastructure projects undertaken by government, the approaches taken will vary.
Ten infrastructure contracts overseen by the Environment Agency in the last year have been let with the stipulation that a PBA must be used.
Asked by: James Frith (Labour - Bury North)
Question to the Department for International Development:
To ask the Secretary of State for International Development, what assessment her Department has made of the potential effect of the recently reported reductions in funding from the US to co-existence projects in Israel-Palestine on peace efforts in that region.
Answered by Alistair Burt
DFID is aware of reports that USAID is currently unable to support coexistence projects in the West Bank and Gaza. The UK supports coexistence work both within green line Israel and across the Israel-OPTs boundary. All types of coexistence work can be valuable and help to foster greater understanding between communities from both sides of the conflict. Ultimately, however, the only way to achieve lasting coexistence is through a negotiated two-state solution that ends the occupation and delivers peace for both Israelis and Palestinians.
Asked by: James Frith (Labour - Bury North)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what measures he is taking to utilise UK genomic medical research to improve outcomes for patients living with rare diseases.
Answered by Caroline Dinenage
The Government’s 2013 UK Strategy for Rare Diseases aims to improve the lives all those with a rare disease and is currently being implemented across England. The Strategy covers five areas including the role of research, with significant support from the National Institute of Health Research.
In October 2018, the Secretary of State announced his ambition to sequence 5 million genomes in the next five years including 1 million whole genome sequences. This builds on the success of the transformative 100,000 Genomes Project which recruited people with rare, undiagnosed genetic diseases, and with cancer, and which reached 100,000 sequences in December 2018.
The NHS Long Term Plan published on 7 January sets out the National Health Service’s commitment to research and innovation to drive outcome improvement, including through targeted investment in genomics. It confirmed that the new NHS Genomic Medicine Service will sequence 500,000 whole genomes by 2023/24 as part of the NHS’s contribution to the Government’s ambition for genomics. The NHS has become the first national health care system to offer whole genome sequencing as part of routine care. Another 500,000 whole genomes will be sequenced through UK Biobank as was announced in the 2017 Life Sciences Sector deal. Together, these activities will significantly increase the volume of high-quality genomic data for research to advance our knowledge to diagnose and treat rare diseases and other conditions to complement the research dataset already generated by the 100,000 Genomes Project.
Asked by: James Frith (Labour - Bury North)
Question to the Ministry of Defence:
To ask the Secretary of State for Defence, how many infrastructure contracts overseen by his Department have been let with the stipulation that a Project Bank Account must be applied in the last year.
Answered by Tobias Ellwood
The Defence Infrastructure Organisation (DIO), on behalf of the Ministry of Defence, has let one infrastructure contract in the last year with the stipulation that a Project Bank Account (PBA) must be used. For all future procurements, DIO are reviewing the way in which PBAs can be embedded into contracts.
Asked by: James Frith (Labour - Bury North)
Question to the Department for Education:
To ask the Secretary of State for Education, how many infrastructure contracts overseen by his Department have been let with the stipulation that a Project Bank Account must be applied in the last year.
Answered by Nick Gibb
The Department has not mandated the use of Project Bank Accounts on any of its infrastructure contracts in the last year. The Department has considered the use of Project Bank Accounts on infrastructure contracts, but due to the specific nature and size of procurements and contracts, there are compelling reasons not to mandate its use.