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1175547

registered interest
date	03/02/2020
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	National Institute for Health and Care Excellence
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, which patient organisations are members of the (a) modifiers considered in decision-making, (b) exploring uncertainty, (c) types of evidence, (d) health-related quality of life, (e) technology specific issues, (f) discounting, (g) cost-minimisation methods (h) costs used in HTA, (i) equality considerations in guideline development, (j) general approach to decision-making and (k) position of technologies in care pathway, NICE methods review task and finish groups.
tabling member constituency	Sheffield South East
tabling member printed	Mr Clive Betts
uin	11443
answer	answer is ministerial correction date of answer 06/02/2020 answer text <p>The following patient groups are currently involved across the programme of task and finish groups. The National Institute for Health and Care Excellence (NICE) has advised that it continues to seek further members for the task and finish groups, and a full list of members is still to be finalised.</p><p>- Alzheimer's Research UK;</p><p>- Breast Cancer Now;</p><p>- Cancer52;</p><p>- Cystic Fibrosis Trust ;</p><p>- Diabetes UK;</p><p>- Genetic Alliance UK;</p><p>- Leukaemia CARE;</p><p>- Multiple Sclerosis Society;</p><p>- Muscular Dystrophy UK;</p><p>- Myeloma UK;</p><p>- Neuroendocrine Cancer UK;</p><p>- Prostate cancer UK; and</p><p>- Sarcoma UK.</p><p> </p><p>In recruiting patient organisations to the NICE methods review task and finish groups, patients on the methods working group were asked to nominate representatives with a range of experience. Additional representatives were nominated by NICE where particular expertise or input was required. The organisations involved in the task and finish groups cover a broad spectrum of disease areas including cancer, non-cancer and rare diseases.<strong> </strong></p> answering member constituency Bury St Edmunds answering member printed Jo Churchill grouped question UIN 11444 question first answered 06/02/2020 17:20:14 answering member 4380 label Biography information for Jo Churchill
tabling member	394 label Biography information for Mr Clive Betts

1175548

registered interest
date	03/02/2020
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	National Institute for Health and Care Excellence
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, how patient organisations were recruited to the 11 NICE methods review task and finish groups.
tabling member constituency	Sheffield South East
tabling member printed	Mr Clive Betts
uin	11444
answer	answer is ministerial correction date of answer 06/02/2020 answer text <p>The following patient groups are currently involved across the programme of task and finish groups. The National Institute for Health and Care Excellence (NICE) has advised that it continues to seek further members for the task and finish groups, and a full list of members is still to be finalised.</p><p>- Alzheimer's Research UK;</p><p>- Breast Cancer Now;</p><p>- Cancer52;</p><p>- Cystic Fibrosis Trust ;</p><p>- Diabetes UK;</p><p>- Genetic Alliance UK;</p><p>- Leukaemia CARE;</p><p>- Multiple Sclerosis Society;</p><p>- Muscular Dystrophy UK;</p><p>- Myeloma UK;</p><p>- Neuroendocrine Cancer UK;</p><p>- Prostate cancer UK; and</p><p>- Sarcoma UK.</p><p> </p><p>In recruiting patient organisations to the NICE methods review task and finish groups, patients on the methods working group were asked to nominate representatives with a range of experience. Additional representatives were nominated by NICE where particular expertise or input was required. The organisations involved in the task and finish groups cover a broad spectrum of disease areas including cancer, non-cancer and rare diseases.<strong> </strong></p> answering member constituency Bury St Edmunds answering member printed Jo Churchill grouped question UIN 11443 question first answered 06/02/2020 17:20:14 answering member 4380 label Biography information for Jo Churchill
tabling member	394 label Biography information for Mr Clive Betts

1175549

registered interest
date	03/02/2020
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	National Institute for Health and Care Excellence
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps the NICE methods review task and finish groups will take to consult with the wider health charity sector.
tabling member constituency	Sheffield South East
tabling member printed	Mr Clive Betts
uin	11445
answer	answer is ministerial correction date of answer 06/02/2020 answer text <p>The National Institute for Heath and Care Excellence (NICE) has advised that a six week public consultation on the proposals for changing its methods and processes will take place this summer. We understand that further work on the timetable is in progress and will be communicated in due course.</p><p>The wider health charity sector will have an opportunity to review the proposals for change from the task and finish groups during this consultation.</p><p>NICE also held a webinar with stakeholders in November 2019 to share how and why health technology evaluation is changing and what it means for patients. The webinar is available on the NICE website at the following link:</p><p><a href="https://www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-technology-appraisal-guidance/changes-to-health-technology-evaluation" target="_blank">https://www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-technology-appraisal-guidance/changes-to-health-technology-evaluation</a></p><p>NICE staff have also participated in a number of events to engage with the patient community, including the charity sector and about the methods review.</p><p><strong> </strong></p> answering member constituency Bury St Edmunds answering member printed Jo Churchill grouped question UIN 11446 question first answered 06/02/2020 17:21:30 answering member 4380 label Biography information for Jo Churchill
tabling member	394 label Biography information for Mr Clive Betts

1175550

registered interest
date	03/02/2020
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	National Institute for Health and Care Excellence
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what the timetable is for the publication of the full consultation on the proposed reforms to NICE methods and processes.
tabling member constituency	Sheffield South East
tabling member printed	Mr Clive Betts
uin	11446
answer	answer is ministerial correction date of answer 06/02/2020 answer text <p>The National Institute for Heath and Care Excellence (NICE) has advised that a six week public consultation on the proposals for changing its methods and processes will take place this summer. We understand that further work on the timetable is in progress and will be communicated in due course.</p><p>The wider health charity sector will have an opportunity to review the proposals for change from the task and finish groups during this consultation.</p><p>NICE also held a webinar with stakeholders in November 2019 to share how and why health technology evaluation is changing and what it means for patients. The webinar is available on the NICE website at the following link:</p><p><a href="https://www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-technology-appraisal-guidance/changes-to-health-technology-evaluation" target="_blank">https://www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-technology-appraisal-guidance/changes-to-health-technology-evaluation</a></p><p>NICE staff have also participated in a number of events to engage with the patient community, including the charity sector and about the methods review.</p><p><strong> </strong></p> answering member constituency Bury St Edmunds answering member printed Jo Churchill grouped question UIN 11445 question first answered 06/02/2020 17:21:30 answering member 4380 label Biography information for Jo Churchill
tabling member	394 label Biography information for Mr Clive Betts

1172080

registered interest
date	20/01/2020
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	Cancer: Drugs
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that the proposed Innovative Medicines Fund does not adversely affect funding available for cancer drugs.
tabling member constituency	Sheffield South East
tabling member printed	Mr Clive Betts
uin	5324
answer	answer is ministerial correction date of answer 23/01/2020 answer text <p>The Cancer Drugs Fund will be extended to create a new Innovative Medicines Fund so that doctors can use the most advanced, life-saving treatments for conditions such as autoimmune disease or cancer, or for children with other rare diseases.</p><p>Detailed proposals for the new Innovative Medicines Fund are in development and will be consulted on in due course. The will extend the successes of the reformed Cancer Drugs Fund into other areas.</p><p> </p><p> </p><p> </p> answering member constituency Bury St Edmunds answering member printed Jo Churchill grouped question UIN 5325 question first answered 23/01/2020 12:16:26 answering member 4380 label Biography information for Jo Churchill
tabling member	394 label Biography information for Mr Clive Betts

1172081

registered interest
date	20/01/2020
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	Cancer Drugs Fund
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what plans he has to consult on his proposed reforms to the Cancer Drugs Fund.
tabling member constituency	Sheffield South East
tabling member printed	Mr Clive Betts
uin	5325
answer	answer is ministerial correction date of answer 23/01/2020 answer text <p>The Cancer Drugs Fund will be extended to create a new Innovative Medicines Fund so that doctors can use the most advanced, life-saving treatments for conditions such as autoimmune disease or cancer, or for children with other rare diseases.</p><p>Detailed proposals for the new Innovative Medicines Fund are in development and will be consulted on in due course. The will extend the successes of the reformed Cancer Drugs Fund into other areas.</p><p> </p><p> </p><p> </p> answering member constituency Bury St Edmunds answering member printed Jo Churchill grouped question UIN 5324 question first answered 23/01/2020 12:16:26 answering member 4380 label Biography information for Jo Churchill
tabling member	394 label Biography information for Mr Clive Betts

1135182

registered interest
date	27/06/2019
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	Genomics: Screening
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, which diagnostic tests will whole genome sequencing replace, particularly for blood cancers.
tabling member constituency	Sheffield South East
tabling member printed	Mr Clive Betts
uin	270281
answer	answer is ministerial correction date of answer 05/07/2019 answer text <p>During 2019, the National Health Service will begin to offer whole genome sequencing (WGS) as part of clinical care for:</p><p>- Seriously ill children likely to have a rare genetic disorder;</p><p>- People with one of 21 rare conditions where current evidence supports early adoption of WGS as a diagnostic test; and</p><p>- People with specific types of cancer for which there is likely to be the greatest patient benefit from using WGS – children with cancer, sarcoma and acute myeloid leukaemia.</p><p> </p><p>WGS will only replace existing diagnostic tests once the testing is demonstrated to be clinically safe to replace existing diagnostic testing. Initially, existing diagnostic testing will continue to be performed alongside WGS testing where clinically appropriate. This will continue until WGS is able to fully support clinical decision making within clinically appropriate timescales.</p><p>Current testing for blood cancers includes a number of diagnostic tests, the current expectation is that WGS will not be used to replace tests that require very fast turnaround times (under 24 hours) or high sensitivity.</p><p>WGS and non-WGS testing that will be available as part of clinical care is outlined in the National Genomic Test Directory at the following link:</p><p> </p><p><a href="https://www.england.nhs.uk/publication/national-genomic-test-directories/" target="_blank">https://www.england.nhs.uk/publication/national-genomic-test-directories/</a></p><p> </p><p>The UK Genetic Testing Network (UKGTN) published the NHS Directory of Genetic Disorders/Genes for Diagnostic Testing, which evaluated and recommended genetic tests for rare and inherited disorders for the National Health Service across the UK. However, there was not an equivalent for cancer genomic testing. The National Genomic Test Directory specifies which genomic tests are commissioned by the NHS in England, the technology by which they are available, and the patients who will be eligible to access to a test.</p><p>The National Genomic Test Directory will be updated on an annual basis and NHS England will implement a clear and transparent process, supported by a Clinical and Scientific Expert Panel, to determine which tests are available within the NHS. This will include reviewing any tests that may be retired or replaced by more modern technology, such as WGS. As the price of WGS falls and the clinical evidence improves, we envisage that it will be extended to more conditions and therefore more patients.</p><p> </p><p><strong> </strong></p><p><strong> </strong></p> answering member constituency Gosport answering member printed Caroline Dinenage grouped question UIN 270282 270283 question first answered 05/07/2019 09:24:02 answering member 4008 label Biography information for Dame Caroline Dinenage
tabling member	394 label Biography information for Mr Clive Betts

1135183

registered interest
date	27/06/2019
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	Genetics: Screening
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, whether the National Genomic Test Directory directly replaces the NHS Directory of Genetic Disorders/Genes for Diagnostic Testing.
tabling member constituency	Sheffield South East
tabling member printed	Mr Clive Betts
uin	270282
answer	answer is ministerial correction date of answer 05/07/2019 answer text <p>During 2019, the National Health Service will begin to offer whole genome sequencing (WGS) as part of clinical care for:</p><p>- Seriously ill children likely to have a rare genetic disorder;</p><p>- People with one of 21 rare conditions where current evidence supports early adoption of WGS as a diagnostic test; and</p><p>- People with specific types of cancer for which there is likely to be the greatest patient benefit from using WGS – children with cancer, sarcoma and acute myeloid leukaemia.</p><p> </p><p>WGS will only replace existing diagnostic tests once the testing is demonstrated to be clinically safe to replace existing diagnostic testing. Initially, existing diagnostic testing will continue to be performed alongside WGS testing where clinically appropriate. This will continue until WGS is able to fully support clinical decision making within clinically appropriate timescales.</p><p>Current testing for blood cancers includes a number of diagnostic tests, the current expectation is that WGS will not be used to replace tests that require very fast turnaround times (under 24 hours) or high sensitivity.</p><p>WGS and non-WGS testing that will be available as part of clinical care is outlined in the National Genomic Test Directory at the following link:</p><p> </p><p><a href="https://www.england.nhs.uk/publication/national-genomic-test-directories/" target="_blank">https://www.england.nhs.uk/publication/national-genomic-test-directories/</a></p><p> </p><p>The UK Genetic Testing Network (UKGTN) published the NHS Directory of Genetic Disorders/Genes for Diagnostic Testing, which evaluated and recommended genetic tests for rare and inherited disorders for the National Health Service across the UK. However, there was not an equivalent for cancer genomic testing. The National Genomic Test Directory specifies which genomic tests are commissioned by the NHS in England, the technology by which they are available, and the patients who will be eligible to access to a test.</p><p>The National Genomic Test Directory will be updated on an annual basis and NHS England will implement a clear and transparent process, supported by a Clinical and Scientific Expert Panel, to determine which tests are available within the NHS. This will include reviewing any tests that may be retired or replaced by more modern technology, such as WGS. As the price of WGS falls and the clinical evidence improves, we envisage that it will be extended to more conditions and therefore more patients.</p><p> </p><p><strong> </strong></p><p><strong> </strong></p> answering member constituency Gosport answering member printed Caroline Dinenage grouped question UIN 270281 270283 question first answered 05/07/2019 09:24:02 answering member 4008 label Biography information for Dame Caroline Dinenage
tabling member	394 label Biography information for Mr Clive Betts

1135184

registered interest
date	27/06/2019
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	Genomics: Screening
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, how will new tests be added to the National Genomic Test Directory.
tabling member constituency	Sheffield South East
tabling member printed	Mr Clive Betts
uin	270283
answer	answer is ministerial correction date of answer 05/07/2019 answer text <p>During 2019, the National Health Service will begin to offer whole genome sequencing (WGS) as part of clinical care for:</p><p>- Seriously ill children likely to have a rare genetic disorder;</p><p>- People with one of 21 rare conditions where current evidence supports early adoption of WGS as a diagnostic test; and</p><p>- People with specific types of cancer for which there is likely to be the greatest patient benefit from using WGS – children with cancer, sarcoma and acute myeloid leukaemia.</p><p> </p><p>WGS will only replace existing diagnostic tests once the testing is demonstrated to be clinically safe to replace existing diagnostic testing. Initially, existing diagnostic testing will continue to be performed alongside WGS testing where clinically appropriate. This will continue until WGS is able to fully support clinical decision making within clinically appropriate timescales.</p><p>Current testing for blood cancers includes a number of diagnostic tests, the current expectation is that WGS will not be used to replace tests that require very fast turnaround times (under 24 hours) or high sensitivity.</p><p>WGS and non-WGS testing that will be available as part of clinical care is outlined in the National Genomic Test Directory at the following link:</p><p> </p><p><a href="https://www.england.nhs.uk/publication/national-genomic-test-directories/" target="_blank">https://www.england.nhs.uk/publication/national-genomic-test-directories/</a></p><p> </p><p>The UK Genetic Testing Network (UKGTN) published the NHS Directory of Genetic Disorders/Genes for Diagnostic Testing, which evaluated and recommended genetic tests for rare and inherited disorders for the National Health Service across the UK. However, there was not an equivalent for cancer genomic testing. The National Genomic Test Directory specifies which genomic tests are commissioned by the NHS in England, the technology by which they are available, and the patients who will be eligible to access to a test.</p><p>The National Genomic Test Directory will be updated on an annual basis and NHS England will implement a clear and transparent process, supported by a Clinical and Scientific Expert Panel, to determine which tests are available within the NHS. This will include reviewing any tests that may be retired or replaced by more modern technology, such as WGS. As the price of WGS falls and the clinical evidence improves, we envisage that it will be extended to more conditions and therefore more patients.</p><p> </p><p><strong> </strong></p><p><strong> </strong></p> answering member constituency Gosport answering member printed Caroline Dinenage grouped question UIN 270281 270282 question first answered 05/07/2019 09:24:02 answering member 4008 label Biography information for Dame Caroline Dinenage
tabling member	394 label Biography information for Mr Clive Betts

1132282

registered interest
date	14/06/2019
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	Genomics: Health Services
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what estimate he has made of the number of patients that will benefit from whole genome sequencing in the first year of its introduction; and what steps is he taking to ensure the adequacy of trained professionals to provide that service.
tabling member constituency	Sheffield South East
tabling member printed	Mr Clive Betts
uin	264725
answer	answer is ministerial correction date of answer 19/06/2019 answer text <p>As part of the NHS Long Term Plan, the National Health Service has committed to sequencing 500,000 whole genomes by 2023/24.</p><p>During 2019, the NHS will begin to offer whole genome sequencing (WGS) as part of clinical care for:</p><p>- Seriously ill children likely to have a rare genetic disorder;</p><p>- People with one of 21 rare conditions where current evidence supports early adoption of WGS as a diagnostic test;</p><p>- People with specific types of cancer for which there is likely to be the greatest patient benefit from using WGS – children with cancer, sarcoma and Acute Myeloid Leukaemia.</p><p> </p><p>As the price of whole genome sequencing falls and the evidence improves, we envisage that it will be extended to more conditions and therefore more patients.</p> answering member constituency Gosport answering member printed Caroline Dinenage question first answered 19/06/2019 16:17:13 answering member 4008 label Biography information for Dame Caroline Dinenage
tabling member	394 label Biography information for Mr Clive Betts