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1219155

registered interest
date	30/06/2020
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	Rare Diseases: Medical Treatments
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, with reference to the findings of the 2017 Office for Health Economics report entitled Comparing Access to Orphan Medicinal Products in the United Kingdom and other European countries, what steps his Department is taking to help ensure that people with rare diseases can access the latest treatments.
tabling member constituency	Harrow East
tabling member printed	Bob Blackman
uin	66850
answer	answer is ministerial correction date of answer 17/07/2020 answer text <p>The National Institute for Health and Care Excellence (NICE) issues guidance for the National Health Service on whether drugs and other treatments represent an effective use of NHS resources through its technology appraisal (TA) and highly specialised technologies (HST) programmes, including drugs for patients with rare diseases. 86% of NICE’s TA recommendations, and 100% of its HST recommendations, for orphan drugs have been positive since 2013.</p><p>Through the Early Access to Medicines Scheme, we are already making important drugs available to patients. So far around 1,500 patients have benefited from the scheme, which enables drugs to be used in clinical practice in parallel with later stages of the regulatory process.</p><p> </p> answering member constituency Bury St Edmunds answering member printed Jo Churchill question first answered 17/07/2020 09:54:14 answering member 4380 label Biography information for Jo Churchill
tabling member	4005 label Biography information for Bob Blackman

1218807

registered interest
date	29/06/2020
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	Thrombotic Thrombocytopenic Purpura
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what data his Department holds on the (a) current prevalence and (b) annual incidence of thrombotic thrombocytopenic purpura (TTP) in England; and how that data is collected.
tabling member constituency	Harrow East
tabling member printed	Bob Blackman
uin	66028
answer	answer is ministerial correction date of answer 16/07/2020 answer text <p>The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) records people with congenital anomalies and rare diseases across the whole of England. Data collection for rare diseases is at an early stage and currently NCARDRS does not collect data on thrombotic thrombocytopenic purpura (TTP). NCARDRS is working to expand rare disease registration and will work with interested parties to advance data collection on rare diseases including TTP.</p> answering member constituency Bury St Edmunds answering member printed Jo Churchill grouped question UIN 66029 question first answered 16/07/2020 19:58:47 answering member 4380 label Biography information for Jo Churchill
tabling member	4005 label Biography information for Bob Blackman

1218808

registered interest
date	29/06/2020
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	Thrombotic Thrombocytopenic Purpura
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 his Department is taking to improve the (a) diagnosis, (b) mortality and (c) morbidity rate of thrombotic thrombocytopenic purpura.
tabling member constituency	Harrow East
tabling member printed	Bob Blackman
uin	66029
answer	answer is ministerial correction date of answer 16/07/2020 answer text <p>The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) records people with congenital anomalies and rare diseases across the whole of England. Data collection for rare diseases is at an early stage and currently NCARDRS does not collect data on thrombotic thrombocytopenic purpura (TTP). NCARDRS is working to expand rare disease registration and will work with interested parties to advance data collection on rare diseases including TTP.</p> answering member constituency Bury St Edmunds answering member printed Jo Churchill grouped question UIN 66028 question first answered 16/07/2020 19:58:47 answering member 4380 label Biography information for Jo Churchill
tabling member	4005 label Biography information for Bob Blackman

1218809

registered interest
date	29/06/2020
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	Rare Diseases: Patients
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, with reference to the UK strategy for rare diseases: implementation plan for England published on 29 January 2018, what progress the Government has made on working with providers to produce alert cards for patients with rare diseases; and whether people with thrombotic thrombocytopenic purpura (TTP) will be included in the list of those eligible to receive an alert card.
tabling member constituency	Harrow East
tabling member printed	Bob Blackman
uin	66030
answer	answer is ministerial correction date of answer 17/07/2020 answer text <p>In 2019, NHS England identified those specialised services in which patients with rare diseases are treated and asked the 150 providers that deliver these services to self-assess against three key criteria: care coordination; alert cards; and transition. In total, 1,000 clinical teams undertook the assessment and the completion rate was 85%. Of those providers that self-assessed: 91% confirmed that there is a person responsible for coordinating the care of any patient with a rare disease; 56% confirmed that they gave each person an alert card; and 91% confirmed that they had active transition in place.</p><p>Alert cards are already used in some hospitals that treat patients with thrombotic thrombocytopenic purpura. NHS England is currently in the process of commissioning a service for patients with thrombotic thrombocytopenic purpura. Once a full, national service is established, an alert card will be rolled out across the service.</p> answering member constituency Bury St Edmunds answering member printed Jo Churchill question first answered 17/07/2020 10:07:56 answering member 4380 label Biography information for Jo Churchill
tabling member	4005 label Biography information for Bob Blackman

1218810

registered interest
date	29/06/2020
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	Rare Diseases: Drugs
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, how many and what proportion of medicine assessments conducted by NICE (a) were for medicines for rare diseases since the start of the highly specialised technologies appraisal process in 2013; how many medicines for rare diseases were approved by NICE as a proportion of total approvals since 2013; and how many medicines have been approved via the highly specialised technologies appraisal process since 2013.
tabling member constituency	Harrow East
tabling member printed	Bob Blackman
uin	66031
answer	answer is ministerial correction date of answer 03/08/2020 answer text <p>The National Institute for Health and Care Excellence (NICE) has undertaken 69 assessments considering ‘orphan drugs’ since the start of its highly specialised technologies (HST) programme in 2013.</p><p>57 of these were appraised by its technology appraisals (TA) programme and NICE made 64 recommendations in total as some topics have multiple recommendations. 49 of these recommendations were positive. A further seven appraisals were terminated as the company did not make an evidence submission. This equates to 16% of NICE’s appraisal activity.</p><p>86% of NICE’s TA recommendations for orphan drugs have been positive.</p><p>NICE has published HST guidance on 12 individual topics, making 12 recommendations, all of which have been positive.</p><p> </p> answering member constituency Bury St Edmunds answering member printed Jo Churchill question first answered 03/08/2020 10:44:45 answering member 4380 label Biography information for Jo Churchill
tabling member	4005 label Biography information for Bob Blackman

1203642

registered interest
date	15/06/2020
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	Smoking
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what progress his Department is making on the Government's target to achieve a smoke-free generation by 2030.
tabling member constituency	Harrow East
tabling member printed	Bob Blackman
uin	59436
answer	answer is ministerial correction date of answer 01/07/2020 answer text <p>The Government is committed to achieving a smokefree England by 2030. Plans to achieve this will be set out at a later date, and a response to the Prevention Green Paper will be published in due course.</p> answering member constituency Bury St Edmunds answering member printed Jo Churchill grouped question UIN 59435 question first answered 01/07/2020 16:26:59 answering member 4380 label Biography information for Jo Churchill
tabling member	4005 label Biography information for Bob Blackman