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444702

registered interest
date	13/01/2016
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Cystic Fibrosis
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, what steps his Department is taking to support people with cystic fibrosis.
tabling member constituency	Hornsey and Wood Green
tabling member printed	Catherine West
uin	22268
answer	answer is ministerial correction date of answer 22/01/2016 answer text <p>Since 1 April 2013, NHS England has been responsible for securing high quality care for patients with cystic fibrosis (CF) as part of its specialised commissioning responsibilities. NHS England has published two CF service specifications, one for adults and one for children, recognising that, whilst similar, adults and children with CF do have differing needs and that it is important that the service provided should reflect this. The specifications are available at:</p><br /><p><a href="https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/01/a01-spec-cystic-fibrosis-adlt.pdf" target="_blank">https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/01/a01-spec-cystic-fibrosis-adlt.pdf</a></p><br /><p>and</p><br /><p><a href="https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/01/a01-spec-cystic-fibrosis-child.pdf" target="_blank">https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/01/a01-spec-cystic-fibrosis-child.pdf</a></p><br /><p>The specifications are important in clearly defining what NHS England expects to be in place for providers to offer evidence-based, safe and effective services. They ensure equity of access to a nationally consistent, high quality service for patients.</p><br /><p>Specialist centres are responsible for providing the care plan for all patients. This includes the responsibility for determining when high cost CF drugs should be prescribed. Care will be delivered by a multi-disciplinary team of trained, experienced, specialist healthcare professionals who routinely care for a critical mass of CF patients at a specialist centre.</p><br /> answering member constituency Battersea answering member printed Jane Ellison question first answered 22/01/2016 12:46:24 answering member 3918 label Biography information for Jane Ellison
tabling member	4523 label Biography information for Catherine West

229161

registered interest
date	23/03/2015
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Cystic Fibrosis
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, if he will make an assessment of the implications for the NHS of the paper by Stephenson et al, A contemporary survival analysis of individuals with cystic fibrosis, published in the European Respiratory Journal, Volume 45, March 2015; and what steps he is taking to ensure that the NHS is adequately resourced to cope with an increase in cystic fibrosis patients over the next 10 years.
tabling member constituency	Stretford and Urmston
tabling member printed	Kate Green
uin	228708
answer	answer is ministerial correction date of answer 26/03/2015 answer text <p>Since 1 April NHS England has been responsible for securing high quality outcomes for patients with cystic fibrosis (CF) as part of its remit to deliver specialised services. The CF service specifications (one for adults and one for children) NHS England has published sets out what providers must have in place in offer high quality CF care and support equity of access to services for patients wherever they live. Both specifications can be viewed at the following link:</p><p> </p><p> </p><p> </p><p><a href="http://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a01/" target="_blank">www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a01/</a>.</p><p> </p><p> </p><p> </p><p>NHS England’s CF Clinical Reference Group, which advises on the development of services for patents, keeps relevant published literature under review. Moreover, it is recognised that the number of adults living with CF is gradually increasing over time, because of improvements in diagnosis and treatment. The growth in numbers is taken into account by NHS England as part of its annual commissioning process and will be considered in the ongoing development of its five year specialised commissioning strategy.</p><p> </p><p><strong> </strong></p><p> </p><p><strong> </strong></p><p> </p><p><strong> </strong></p><p> </p> answering member constituency Battersea answering member printed Jane Ellison question first answered 26/03/2015 14:49:37 answering member 3918 label Biography information for Jane Ellison
tabling member	4120 label Biography information for Kate Green

64769

registered interest
date	30/06/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Cystic Fibrosis
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, how many cystic fibrosis sufferers have died while being on the waiting list for a lung transplant in each of the last five years.
tabling member constituency	Haltemprice and Howden
tabling member printed	Mr David Davis
uin	203030
answer	answer is ministerial correction date of answer 03/07/2014 answer text <p>The information requested is in the following table:</p><p> </p><p>Patients with cystic fibrosis, who have died whilst actively waiting on the lung transplant list (by year of death not year of registration)</p><p> </p><table><tbody><tr><td><p>Financial Year</p></td><td><p>Patients</p></td></tr><tr><td><p>2013-14</p></td><td><p>19</p></td></tr><tr><td><p>2012-13</p></td><td><p>19</p></td></tr><tr><td><p>2011-12</p></td><td><p>14</p></td></tr><tr><td><p>2010-11</p></td><td><p>19</p></td></tr><tr><td><p>2009-10</p></td><td><p>27</p></td></tr></tbody></table><p> </p><p><em>Source</em>: NHS Blood and Transplant</p><p> </p> answering member constituency Battersea answering member printed Jane Ellison question first answered 03/07/2014 13:00:07 answering member 3918 label Biography information for Jane Ellison
tabling member	373 label Biography information for Sir David Davis

57963

registered interest
date	04/06/2014
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Cystic Fibrosis
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, with reference to the Cystic Fibrosis Trust's report entitled Hope for More: Improving access to lung transplantation and care for people with cystic fibrosis, what assessment he has made of the donor lung utilisation rate for transplantation; and what measures he has identified as having the greatest potential to increase such utilisation.
tabling member constituency	York Outer
tabling member printed	Julian Sturdy
uin	199027
answer	answer is ministerial correction date of answer 11/06/2014 answer text <p>Currently donated lungs are allocated to the designated cardiothoracic transplant centres on a zonal basis. However, the Cardiothoracic Organs Advisory Group (CTAG) have recently reviewed the allocation policy and have recommended that the size of the allocation zones be adjusted to help ensure equity of access. NHS Blood and Transplant (NHSBT) have therefore confirmed that for cardiothoracic organs, the zones will be reviewed in August 2014 to coincide with changes in liver allocation zones and from August 2015, heart and lung zones will be disaggregated and the zones reviewed separately.</p><p> </p><p>CTAG have also recommended that NHSBT reviews the consequences of introducing two levels of priority for listing for lung transplants - urgent and routine, and suggest a national allocation scheme for urgent listed patients, and zonal allocation for routine listed patients.</p><p> </p><p>Any proposed change would need to be validated by NHSBT, who will review the criteria for urgent listing and the statistical modelling of the potential impact of such a system. NHSBT will continue to work closely with the Cystic Fibrosis Trust to improve outcomes for patients requiring lung transplants.</p><p> </p> answering member constituency Battersea answering member printed Jane Ellison question first answered 11/06/2014 15:43:54 answering member 3918 label Biography information for Jane Ellison
tabling member	4079 label Biography information for Julian Sturdy