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418454

registered interest
date	11/09/2015
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Ehlers-Danlos Syndrome
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, what recent discussions his Department has had with health bodies on ensuring timely treatment for sufferers of Ehlers-Danlos syndrome.
tabling member constituency	Bury North
tabling member printed	Mr David Nuttall
uin	9988
answer	answer is ministerial correction date of answer 21/09/2015 answer text <p>Information on patient outcomes of those diagnosed with Ehlers-Danlos Syndrome (EDS) in London and Greater Manchester is not held centrally by the Department. EDS falls within specialised services managed by NHS England.</p><p> </p><p> </p><p> </p><p>The UK Strategy for Rare Diseases sets out the Government’s on-going commitment to ensuring that patients with rare diseases, including EDS, have access to high quality services. The Strategy is discussed regularly with health bodies including NHS England. The national specialised service for atypical or complex cases aims to reduce times to diagnosis and reduce the number of hospital appointments required to achieve a specific diagnosis.</p><p> </p><p> </p><p> </p><p>Information about the average time from diagnosis to referral for specialist treatment is not available centrally. Patients suspected of having EDS may be assessed and diagnosed in a wide range of settings. These include United Kingdom regional clinical genetics clinics and various other secondary and tertiary speciality clinics.</p><p> </p><p> </p><p> </p> answering member constituency Mid Norfolk answering member printed George Freeman grouped question UIN 9987 9989 question first answered 21/09/2015 10:00:16 answering member 4020 label Biography information for George Freeman
tabling member	4140 label Biography information for Mr David Nuttall

418457

registered interest
date	11/09/2015
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Ehlers-Danlos Syndrome
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, what the average length of time is between the diagnosis of a patient with Ehlers-Danlos syndrome and referral for specialist treatment in (a) London and (b) Greater Manchester.
tabling member constituency	Bury North
tabling member printed	Mr David Nuttall
uin	9989
answer	answer is ministerial correction date of answer 21/09/2015 answer text <p>Information on patient outcomes of those diagnosed with Ehlers-Danlos Syndrome (EDS) in London and Greater Manchester is not held centrally by the Department. EDS falls within specialised services managed by NHS England.</p><p> </p><p> </p><p> </p><p>The UK Strategy for Rare Diseases sets out the Government’s on-going commitment to ensuring that patients with rare diseases, including EDS, have access to high quality services. The Strategy is discussed regularly with health bodies including NHS England. The national specialised service for atypical or complex cases aims to reduce times to diagnosis and reduce the number of hospital appointments required to achieve a specific diagnosis.</p><p> </p><p> </p><p> </p><p>Information about the average time from diagnosis to referral for specialist treatment is not available centrally. Patients suspected of having EDS may be assessed and diagnosed in a wide range of settings. These include United Kingdom regional clinical genetics clinics and various other secondary and tertiary speciality clinics.</p><p> </p><p> </p><p> </p> answering member constituency Mid Norfolk answering member printed George Freeman grouped question UIN 9987 9988 question first answered 21/09/2015 10:00:17 answering member 4020 label Biography information for George Freeman
tabling member	4140 label Biography information for Mr David Nuttall

418461

registered interest
date	11/09/2015
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Ehlers-Danlos Syndrome
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, what recent assessment he has made of patient outcomes of those diagnosed with Ehlers-Danlos syndrome in (a) London and (b) Greater Manchester.
tabling member constituency	Bury North
tabling member printed	Mr David Nuttall
uin	9987
answer	answer is ministerial correction date of answer 21/09/2015 answer text <p>Information on patient outcomes of those diagnosed with Ehlers-Danlos Syndrome (EDS) in London and Greater Manchester is not held centrally by the Department. EDS falls within specialised services managed by NHS England.</p><p> </p><p> </p><p> </p><p>The UK Strategy for Rare Diseases sets out the Government’s on-going commitment to ensuring that patients with rare diseases, including EDS, have access to high quality services. The Strategy is discussed regularly with health bodies including NHS England. The national specialised service for atypical or complex cases aims to reduce times to diagnosis and reduce the number of hospital appointments required to achieve a specific diagnosis.</p><p> </p><p> </p><p> </p><p>Information about the average time from diagnosis to referral for specialist treatment is not available centrally. Patients suspected of having EDS may be assessed and diagnosed in a wide range of settings. These include United Kingdom regional clinical genetics clinics and various other secondary and tertiary speciality clinics.</p><p> </p><p> </p><p> </p> answering member constituency Mid Norfolk answering member printed George Freeman grouped question UIN 9988 9989 question first answered 21/09/2015 10:00:13 answering member 4020 label Biography information for George Freeman
tabling member	4140 label Biography information for Mr David Nuttall

156704

registered interest
date	19/11/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Drugs: Licensing
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, pursuant to the contribution of the Parliamentary Under-Secretary of State for Business, Innovation and Skills in the debate on the Second Reading of the Off-patent Drugs Bill on 7 November 2014, Official Report, column 1124, what the evidential basis was of his statement that the resorting to legislation to demand regulatory measures carries the risk of some serious and unintended consequences.
tabling member constituency	Bury North
tabling member printed	Mr David Nuttall
uin	215337
answer	answer is ministerial correction date of answer 24/11/2014 answer text <p>The law currently allows medicines to be prescribed outside their licensed indications or without a licence provided that this best meets the individual clinical need of the patient concerned. The Off Patent Drugs Bill risks creating a presumption that a licence must be in place for every indication for which a medicine is to be used, removing the flexibility clinicians currently have to prescribe the medicine which best meets their patients clinical needs whatever it licensing status. This would create uncertainty for patients and clinicians and could disrupt important areas of care. For example, many medicines have historically not been licensed for use in children.</p><p> </p><p><strong> </strong></p><p> </p><p>My Rt. hon Friend, the Secretary of State for Health, is responsible for the United Kingdom medicines licensing system and therefore for its operation and integrity. If he became a regular applicant for licences there would be a perceived conflict of interest between his role as an applicant competing in the medicines market and his role as an impartial overseer of the system. If he directed another body to make licence applications on his behalf we judge that this could incur similar risks.</p><p> </p><p><strong> </strong></p><p> </p> answering member constituency Mid Norfolk answering member printed George Freeman question first answered 24/11/2014 17:25:05 answering member 4020 label Biography information for George Freeman
tabling member	4140 label Biography information for Mr David Nuttall