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100411

registered interest
date	22/10/2014
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, what steps the Government is taking to support research into new treatments for people with cystic fibrosis.
tabling member constituency	Barnsley Central
tabling member printed	Dan Jarvis
uin	211584
answer	answer is ministerial correction date of answer 27/10/2014 answer text <p>The National Institute for Health Research (NIHR) Evaluation, Trials and Studies Coordinating Centre manages the Efficacy and Mechanism Evaluation programme. With funding from the Medical Research Council, this programme is currently supporting a £3.3 million trial of repeated application of gene therapy in patients with cystic fibrosis. The report of this trial is expected to be published in August 2015.</p><p> </p><p><strong> </strong></p><p> </p><p>A range of commercial and researcher-led cystic fibrosis treatment trials and studies are hosted by NIHR research infrastructure including the NIHR Clinical Research Network, NIHR biomedical research centres and units, and NIHR clinical research facilities for experimental medicine.</p><p> </p><p><strong> </strong></p><p> </p><p><strong> </strong></p><p> </p><p><strong> </strong></p><p> </p><p><strong> </strong></p><p> </p> answering member constituency Mid Norfolk answering member printed George Freeman question first answered 27/10/2014 16:52:12 answering member 4020 label Biography information for George Freeman
tabling member	4243 label Biography information for Dan Jarvis

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

62931

registered interest
date	19/06/2014
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, what assessment his Department has made of the effect on health services of an increase in the number of adult patients with cystic fibrosis.
tabling member constituency	Liverpool, Wavertree
tabling member printed	Luciana Berger
uin	201591
answer	answer is ministerial correction date of answer 24/06/2014 answer text <p>NHS England recognises that the number of adults with cystic fibrosis (CF) is gradually increasing over time. 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>Information concerning the number of people living with CF in each of the last four years is not available. In the following table we have provided the number of CF patients (adults and children) cared for by specialist centres in England in each of the last three years. This data has only been collected since the introduction of the tariff for CF services in 2011.</p><p> </p><table><tbody><tr><td><p>Year</p></td><td><p>Patients</p></td></tr><tr><td><p>2011</p></td><td><p>7,291</p></td></tr><tr><td><p>2012</p></td><td><p>7,620</p></td></tr><tr><td><p>2013</p></td><td><p>7,778</p></td></tr></tbody></table><p> </p><p>We would expect all CF patients to have a CF specialist in charge of their care and, as part of the ongoing support they receive, to be assessed at specialist centres.</p><p> </p> answering member constituency North Norfolk answering member printed Norman Lamb grouped question UIN 201568 question first answered 24/06/2014 13:48:12 answering member 1439 label Biography information for Norman Lamb
tabling member	4036 label Biography information for Luciana Berger

62948

registered interest
date	19/06/2014
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 people were living with cystic fibrosis in each of the last four years.
tabling member constituency	Liverpool, Wavertree
tabling member printed	Luciana Berger
uin	201568
answer	answer is ministerial correction date of answer 24/06/2014 answer text <p>NHS England recognises that the number of adults with cystic fibrosis (CF) is gradually increasing over time. 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>Information concerning the number of people living with CF in each of the last four years is not available. In the following table we have provided the number of CF patients (adults and children) cared for by specialist centres in England in each of the last three years. This data has only been collected since the introduction of the tariff for CF services in 2011.</p><p> </p><table><tbody><tr><td><p>Year</p></td><td><p>Patients</p></td></tr><tr><td><p>2011</p></td><td><p>7,291</p></td></tr><tr><td><p>2012</p></td><td><p>7,620</p></td></tr><tr><td><p>2013</p></td><td><p>7,778</p></td></tr></tbody></table><p> </p><p>We would expect all CF patients to have a CF specialist in charge of their care and, as part of the ongoing support they receive, to be assessed at specialist centres.</p><p> </p> answering member constituency North Norfolk answering member printed Norman Lamb grouped question UIN 201591 question first answered 24/06/2014 13:48:12 answering member 1439 label Biography information for Norman Lamb
tabling member	4036 label Biography information for Luciana Berger

62318

registered interest
date	17/06/2014
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, what (a) number and (b) proportion of adult cystic fibrosis centres in England have (i) reached and (ii) exceeded the maximum capacity of 250 patients recommended by the Cystic Fibrosis Trust in each of the last four years.
tabling member constituency	Liverpool, Wavertree
tabling member printed	Luciana Berger
uin	201133
answer	answer is ministerial correction date of answer 23/06/2014 answer text <p>Information concerning the number of adult cystic fibrosis (CF) patients cared for by CF centres in England in each of the last four years is not available. This data has only been collected since the introduction of the tariff for CF services in 2011.</p><p> </p><p>In the attached table we have provided the number and proportion of CF centres treating 250 patients or more in each of the last three years.</p><p>It should be noted that the<em>Standards of Care</em>, updated by CF Trust in 2011 does not state that 250 patients is the maximum number a CF centre should treat, but rather that when a centre reaches 250 patients, and anticipates that numbers will continue to rise, the development of alternative specialist centres should be considered.</p><p> </p><p> </p> answering member constituency North Norfolk answering member printed Norman Lamb question first answered 23/06/2014 15:28:46 answering member 1439 label Biography information for Norman Lamb attachment 1 file name PQ201133 - Table.docx title Table
tabling member	4036 label Biography information for Luciana Berger

61748

registered interest
date	12/06/2014
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 adult cystic fibrosis patients were being cared for by specialist centres in each of the last 10 years.
tabling member constituency	Newcastle upon Tyne Central
tabling member printed	Chi Onwurah
uin	200612
answer	answer is ministerial correction date of answer 17/06/2014 answer text <p>Information concerning the number of adult cystic fibrosis (CF) patients cared for by specialist centres in each of the last 10 years is not available. This data has only been collected since the introduction of the tariff for CF services in 2011, and in the following table we have provided the number of adult patients cared for in each year since that time:</p><p> </p><table><tbody><tr><td><p>Year</p></td><td><p>Adult Patients</p></td></tr><tr><td><p>2011</p></td><td><p>3,885</p></td></tr><tr><td><p>2012</p></td><td><p>4,107<br /></p></td></tr><tr><td><p>2013</p></td><td><p>4,244</p></td></tr></tbody></table><p> </p><p>More generally, we expect all CF patients to have a CF specialist in charge of their care and as part of the ongoing support they receive, to be assessed at specialist centres.</p><p> </p> answering member constituency North Norfolk answering member printed Norman Lamb question first answered 17/06/2014 13:42:24 answering member 1439 label Biography information for Norman Lamb
tabling member	4124 label Biography information for Chi Onwurah

61314

registered interest
date	11/06/2014
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, if he will review prescription charges for adults with cystic fibrosis.
tabling member constituency	Newcastle upon Tyne Central
tabling member printed	Chi Onwurah
uin	200281
answer	answer is ministerial correction date of answer 16/06/2014 answer text <p>In 2010, responding to Professor Sir Ian Gilmore's review into extending entitlement to free prescriptions to all those with a long-term condition, the Government made clear that in light of the challenging financial context, no changes would be made to the current list of exemptions. Prescription charges in England raise valuable income, in the region of £450 million each year, which helps the National Health Service to maintain vital services for patients.</p><p> </p><p>The extensive system of exemption arrangements, including for those on low incomes who may struggle to pay for their prescriptions, which is in place means that around 90% of all prescription items are already dispensed free of charge. Prescription Prepayment Certificates (PPCs) are also available for those who have to pay NHS prescription charges and need multiple prescriptions. This is the fifth year the cost of an annual certificate, and the third year the cost of a three month certificate, have been frozen. Both certificates will also remain at £104 and £29.10 respectively, next year. There is no limit to the number of items that can be obtained through a PPC. The annual certificate benefits anyone needing more than 12 items a year, and the three month certificate anyone needing more than three items in that three month period.</p> answering member constituency Central Suffolk and North Ipswich answering member printed Dr Daniel Poulter question first answered 16/06/2014 13:38:11 answering member 3932 label Biography information for Dr Dan Poulter
tabling member	4124 label Biography information for Chi Onwurah

60646

registered interest
date	09/06/2014
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, what steps he is taking to ensure that high-cost drugs are delivered to cystic fibrosis patients on time.
tabling member constituency	Colne Valley
tabling member printed	Jason McCartney
uin	199708
answer	answer is ministerial correction date of answer 16/06/2014 answer text <p>It is important that patients, including those with cystic fibrosis, get those high cost drugs provided through homecare services on time.</p><p> </p><p>The Department commissioned a review of homecare medicine supply arrangements to ensure they deliver the best value for patients, the National Health Service and the provider market. The review report, <em>Homecare Medicines: </em><em>Towards a Vision for the Future,</em> was published in December 2011 and is available at:</p><p> </p><p>http://media.dh.gov.uk/network/121/files/2011/12/111201-Homecare-Medicines-Towards-a-Vision-for-the-Future2.pdf</p><p> </p><p>The outcome of subsequent improvement work is summarised in the further report, <em>Homecare Medicines: Towards a Vision for the Future - Taking Forward the Recommendations</em>, published in May 2014 and available at:</p><p> </p><p>www.uhns.nhs.uk/AboutUs/NHSHomecareMedicinesinEngland.aspx</p><p> </p><p>NHS England issued a patient safety alert on minimising the risks of omitted and delayed medicines for patients receiving homecare services on 10 April 2014. This recommended that all healthcare organisations that commission clinical homecare services:</p><p>- establish if medicine homecare services were used by their organisation and if incidents of omitted and delayed medicines had occurred;</p><p>- consider whether immediate action needed to be taken locally and, if required, develop an action plan, to reduce risk and the potential risk to patients;</p><p>- disseminate the alert to all medical, nursing, pharmacy and other staff involved in the care of homecare patients; and</p><p>- report patient safety incidents concerning homecare to the National Reporting and Learning Service.</p><p> </p><p>A copy of the patient safety alert is available at:</p><p> </p><p>www.england.nhs.uk/wp-content/uploads/2014/04/psa-omitted-delayed-meds.pdf</p><p> </p><p>The Department continues to work with NHS England, homecare companies, pharmaceutical suppliers and the NHS to ensure that homecare arrangements are safe and deliver value for the NHS and improved outcomes for patients.</p><p> </p> answering member constituency Central Suffolk and North Ipswich answering member printed Dr Daniel Poulter grouped question UIN 199709 question first answered 16/06/2014 13:15:27 answering member 3932 label Biography information for Dr Dan Poulter
tabling member	3953 label Biography information for Jason McCartney

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