The support and care given to this group of people includes a range of treatments and supportive measures, including: anti-epileptic medication; physiotherapy; treatment for spasticity; and treatment for dystonia (including bracing and wheelchairs). Progressive feeding problems require speech and language management and gastrostomy insertion. Pain management is required for end of life care.<\/p>
<\/p>
Given the wide range of treatments and supportive measures, it is not possible to estimate the average annual cost of treating an individual with a Neuronal Ceroid Lipofuscinosis disease, especially since some of these costs will fall to NHS England and some to clinical commissioning groups.<\/p>
<\/p>
It is estimated that there are between 45 and 90 people undergoing care and treatment for all Neuronal Ceroid Lipofuscinosis diseases of whom between 19 and 38 have CLN2 and fewer than 10 have CLN5.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4067", "label" : {"_value" : "Biography information for Steve Brine"} } , "answeringMemberConstituency" : {"_value" : "Winchester"} , "answeringMemberPrinted" : {"_value" : "Steve Brine"} , "dateOfAnswer" : {"_value" : "2017-07-18", "_datatype" : "dateTime"} , "groupedQuestionUIN" : [{"_value" : "4140"} , {"_value" : "4141"} ], "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2017-07-18T09:59:34.327Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health"} , "answeringDeptSortName" : {"_value" : "Health"} , "date" : {"_value" : "2017-07-11", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Cerliponase Alfa"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "To ask the Secretary of State for Health, what the estimated average annual cost is to the NHS of providing Brineura (Cerliponase Alfa) to someone with the CLN2 variant of Batten Disease.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4641", "label" : {"_value" : "Biography information for Alex Norris"} } , "tablingMemberConstituency" : {"_value" : "Nottingham North"} , "tablingMemberPrinted" : [{"_value" : "Alex Norris"} ], "uin" : "4139"} , {"_about" : "http://data.parliament.uk/resources/750852", "AnsweringBody" : [{"_value" : "Department of Health"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/750852/answer", "answerText" : {"_value" : "
The support and care given to this group of people includes a range of treatments and supportive measures, including: anti-epileptic medication; physiotherapy; treatment for spasticity; and treatment for dystonia (including bracing and wheelchairs). Progressive feeding problems require speech and language management and gastrostomy insertion. Pain management is required for end of life care.<\/p>
<\/p>
Given the wide range of treatments and supportive measures, it is not possible to estimate the average annual cost of treating an individual with a Neuronal Ceroid Lipofuscinosis disease, especially since some of these costs will fall to NHS England and some to clinical commissioning groups.<\/p>
<\/p>
It is estimated that there are between 45 and 90 people undergoing care and treatment for all Neuronal Ceroid Lipofuscinosis diseases of whom between 19 and 38 have CLN2 and fewer than 10 have CLN5.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4067", "label" : {"_value" : "Biography information for Steve Brine"} } , "answeringMemberConstituency" : {"_value" : "Winchester"} , "answeringMemberPrinted" : {"_value" : "Steve Brine"} , "dateOfAnswer" : {"_value" : "2017-07-18", "_datatype" : "dateTime"} , "groupedQuestionUIN" : [{"_value" : "4139"} , {"_value" : "4141"} ], "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2017-07-18T09:59:34.403Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health"} , "answeringDeptSortName" : {"_value" : "Health"} , "date" : {"_value" : "2017-07-11", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Batten Disease"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "To ask the Secretary of State for Health, what the average annual cost is to the NHS of care and treatment of people with (a) any Neuronal Ceroid Lipofuscinosis disease and (b) the CLN2 variant of that disease.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4641", "label" : {"_value" : "Biography information for Alex Norris"} } , "tablingMemberConstituency" : {"_value" : "Nottingham North"} , "tablingMemberPrinted" : [{"_value" : "Alex Norris"} ], "uin" : "4140"} , {"_about" : "http://data.parliament.uk/resources/750853", "AnsweringBody" : [{"_value" : "Department of Health"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/750853/answer", "answerText" : {"_value" : "
The support and care given to this group of people includes a range of treatments and supportive measures, including: anti-epileptic medication; physiotherapy; treatment for spasticity; and treatment for dystonia (including bracing and wheelchairs). Progressive feeding problems require speech and language management and gastrostomy insertion. Pain management is required for end of life care.<\/p>
<\/p>
Given the wide range of treatments and supportive measures, it is not possible to estimate the average annual cost of treating an individual with a Neuronal Ceroid Lipofuscinosis disease, especially since some of these costs will fall to NHS England and some to clinical commissioning groups.<\/p>
<\/p>
It is estimated that there are between 45 and 90 people undergoing care and treatment for all Neuronal Ceroid Lipofuscinosis diseases of whom between 19 and 38 have CLN2 and fewer than 10 have CLN5.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4067", "label" : {"_value" : "Biography information for Steve Brine"} } , "answeringMemberConstituency" : {"_value" : "Winchester"} , "answeringMemberPrinted" : {"_value" : "Steve Brine"} , "dateOfAnswer" : {"_value" : "2017-07-18", "_datatype" : "dateTime"} , "groupedQuestionUIN" : [{"_value" : "4139"} , {"_value" : "4140"} ], "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2017-07-18T09:59:34.483Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health"} , "answeringDeptSortName" : {"_value" : "Health"} , "date" : {"_value" : "2017-07-11", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Batten Disease"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "To ask the Secretary of State for Health, how many people in the UK are undergoing care and treatment for (a) all Neuronal Ceroid Lipofuscinosis diseases, (b) the CLN2 and (c) the CLN5 variants of that disease.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4641", "label" : {"_value" : "Biography information for Alex Norris"} } , "tablingMemberConstituency" : {"_value" : "Nottingham North"} , "tablingMemberPrinted" : [{"_value" : "Alex Norris"} ], "uin" : "4141"} , {"_about" : "http://data.parliament.uk/resources/750854", "AnsweringBody" : [{"_value" : "Home Office"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/750854/answer", "answerText" : {"_value" : "
The Home Office is committed to not placing unnecessary bureaucratic burdens on the police and has scrapped all central targets. However, Chief Constables are under a duty to comply with the Strategic Policing Requirement (SPR). The SPR provides a framework for consistent, collective decision making by forces, but leaves the specifics of how this should be achieved to Chief Constables.<\/p>
The Strategic Policing Requirements describes organised crime, including large scale cyber crime, as a national threat that Chief Constables and Police and Crime Commissioners are expected to plan and prepare, together or in support of national arrangements, to address these threats.<\/p>
The National Police Chiefs\u2019 Council has oversight of force contributions to the SPR. Police and Crime Commissioners are required to hold Chief Constables to account for the delivery of the SPR and to have regard to the SPR when producing their police and crime plans. The Home Office also continue to support forces in building professional responsibility through the College of Policing; and returning accountability to the public through Police and Crime Commissioners.<\/p>
The 2015 National Security Strategy confirmed that cyber remains a top threat to the UK\u2019s economic and national security. The UK\u2019s future security and prosperity depends on our ability to safeguard digital information, data and networks at home and abroad. The cyber threats we face continue to grow in scale and sophistication. This is why the National Cyber Security Strategy 2016-2021 is supported by £1.9billion of transformational investment.<\/p>
Through the National Cyber Security Programme, we invested over £90 million under the 2010-15 Parliament to bolster the law enforcement response. The Government will continue to invest in law enforcement capabilities at the national, regional and local levels to ensure delivery agencies have the capacity to deal with the increasing volume and sophistication of cyber crime. We are increasing the capabilities of the National Crime Agency\u2019s National Cyber Crime Unit by increasing their ability to investigate the most serious cyber crime.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/1539", "label" : {"_value" : "Biography information for Mr Ben Wallace"} } , "answeringMemberConstituency" : {"_value" : "Wyre and Preston North"} , "answeringMemberPrinted" : {"_value" : "Mr Ben Wallace"} , "dateOfAnswer" : {"_value" : "2017-07-19", "_datatype" : "dateTime"} , "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2017-07-19T16:51:51.28Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "1"} , "answeringDeptShortName" : {"_value" : "Home Office"} , "answeringDeptSortName" : {"_value" : "Home Office"} , "date" : {"_value" : "2017-07-11", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Cybercrime"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "To ask the Secretary of State for the Home Department, what targets she has set for local police forces to tackle cybercrime; and how work to meet those targets will be funded.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4641", "label" : {"_value" : "Biography information for Alex Norris"} } , "tablingMemberConstituency" : {"_value" : "Nottingham North"} , "tablingMemberPrinted" : [{"_value" : "Alex Norris"} ], "uin" : "4153"} , {"_about" : "http://data.parliament.uk/resources/751586", "AnsweringBody" : [{"_value" : "Department for Transport"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/751586/answer", "answerText" : {"_value" : "
The benefits of franchising to passengers and taxpayers are clear. The private sector have invested billions in new trains. Government subsidy to the industry has reduced by £2.5bn over ten years. Whilst passenger numbers have doubled since privatisation.<\/p>
<\/p>
All this is on top of our ongoing £38bn investment in infrastructure. We always assess franchising decisions against the best interests of passengers and taxpayers.<\/p>
<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/3926", "label" : {"_value" : "Biography information for Paul Maynard"} } , "answeringMemberConstituency" : {"_value" : "Blackpool North and Cleveleys"} , "answeringMemberPrinted" : {"_value" : "Paul Maynard"} , "dateOfAnswer" : {"_value" : "2017-07-13", "_datatype" : "dateTime"} , "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2017-07-13T15:33:46.03Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "27"} , "answeringDeptShortName" : {"_value" : "Transport"} , "answeringDeptSortName" : {"_value" : "Transport"} , "date" : {"_value" : "2017-07-10", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Railways: Franchises"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "To ask the Secretary of State for Transport, what assessment he has made of the costs and benefits of rail franchising.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4641", "label" : {"_value" : "Biography information for Alex Norris"} } , "tablingMemberConstituency" : {"_value" : "Nottingham North"} , "tablingMemberPrinted" : [{"_value" : "Alex Norris"} ], "uin" : "900473"} ], "itemsPerPage" : 10, "page" : 0, "startIndex" : 1, "totalResults" : 5, "type" : ["http://purl.org/linked-data/api/vocab#ListEndpoint", "http://purl.org/linked-data/api/vocab#Page"]} }