Press Office
Welcome to the online press office of the Cystic Fibrosis Trust. This section gives you the latest news from the Cystic Fibrosis Trust and the world of CF, as well as key facts about Cystic Fibrosis and our latest statements and press releases. Please click here to find out more about our campaigning. If you are one of our fundraisers you can read other news that may interest you here.
You can also join us on the following websites:
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LATEST NEWS STORIES
RCN campaign
We're supporting the Royal College of Nursing's Frontline First campaign against cuts to jobs and services in the NHS http://tinyurl.com/37nhjol
Availability of Vitamin K
We are aware that there have been some issues around the availability of Vitamin K. The UK CF Pharmacist Group has prepared an 
information sheet giving some background and treatment options.
Welfare reform
We have prepared a statement on
the proposed changes to the benefits system. We will be engaging with
government to ensure people with Cystic Fibrosis are treated fairly.
Jenny Agutter
Our patron and trustee Jenny Agutter talks about her experiences with CF on the
BBC website
Opus Energy pledge to raise £10,000 for CF Trust
Opus Energy has pledged to raise £10,000 throughout 2010/11 for the Cystic
Fibrosis Trust. Read more here.
Prescription Charges
Proposals to give free prescriptions to people in England with long-term conditions have been put on hold due to financial pressures on the NHS. Health minister Simon Burns said a decision on prescription charges and exemptions cannot be made before the spending review due in the autumn. An early day motion has been put down once again this year by Bob Russell MP. Please ask your MP to show their support and sign it. You can read our manifesto for people with CF and a press release by David Tredinnick MP on prescription charges here.
Ward closure and specialist nursing cuts in Scotland
It is come to our attention that Ward 6b at Yorkhill Hospital has recently closed. We have also found out that CF nurse specialists across Scotland have been asked to spend 20% of their time on general ward rather than treating those with CF. We are keen to hear from parents/patients as to whether these issues have affected the care you/your child receives. Please contact Yvonne Hughes, Expert Patient Adviser for Scotland on yhughes@cftrust.org.uk or 0300 373 1051
12 year old schoolboy fundraiser raises thousands for the CF Trust
We are amazed by 12 year old schoolboy Michael Turner who is doing a 115 mile walk for us in May and has already raised a staggering £17,500. Read our blog.
Celebs vs MPs football match
Well done to our celeb team who won 3-1 against a team of MPs at our annual charity football match at Stamford Bridge on Tuesday 11 May. Have a look at the photos.
Volcanic Ash
We have been advised by a Specialist CF Consultant that the volcanic ash does not pose a special threat to those with Cystic Fibrosis. If people use an inhaler for asthma, they should carry it with them. For more information visit the Health Protection Agency.
With the date for the General Election now set at May 6, we have created a CF Manifesto of what we expect for people with CF from whoever forms the next Government. Find out more and download our posters and manifesto.
Fundraising in CF Week
Many people choose to spread awareness of Cystic Fibrosis by completing a house to house collection during CF Week (17-23 May). Please contact the events team at events@cftrust.org.uk to order all the resources you require if you would like to take part. If alternative weeks would be more convenient for you, please get in touch as we can arrange permits for any time of year.
The Big Cake Bake
The theme for this year's CF Fundraising Week 17-23 May is The Big Cake Bake. Why not have a coffee morning, cake sale or afternoon tea party to help raise funds for the CF Trust? Tell us what your favourite cake is in our online poll.
Check the expiry date on your Epi-pen
Some of you may have an epi-pen and we have been asked to remind you to check the expiry date. If you epi-pen has or is about to expire its efficacy will be reduced. You can find out more and register for a free expiry alert on this website.
Dance Aid
We're thrilled that the Dance Aid event at Pacha London raised £2510 for the CF Trust. The next event is at Amadeus Rochester on April 1st. Find out more on their website or facebook group.
National Pandemic Flu Service
The National Pandemic Flu Service (NPFS) will close from 1am on Thursday 11 February 2010. This closure is in response to a steady reduction in the estimated number of swine flu cases and reflects an appropriate response to the level of threat that the virus now poses.This will apply to both the telephone and online services.
Northern Ireland Raffle
If you're in Northern Ireland and have received your raffle tickets please check them as a small amount of tickets were sent out dated 2009. Please contact Linda Alexander on lalexander@cftrust.org.uk or 0845 859 1021 if this is the case.
January Conference
Thank you to all of you who came to this event. For those of you who weren't able to attend there is a update on gene therapy in the latest issue of
CF Today.
Oxygen charges on flights
New research from PHA-UK reveals bewildering lottery of charges faced by those who need supplementary oxygen in order to fly. Sign their petition.
Research into CFTR protein
Researchers have made an important discovery about the defective protein that causes cystic fibrosis. Read the press release from the University of Bristol.
Reconditioned lungs transplant breakthrough
The CF Trust has helped to fund research which 'reconditions' damaged lungs in a labaratory making them suitable for transplant. Read more about this in The Times.
Vicks Sinex Spray
A batch of Vicks Sinex spray may be contaminated with Burkholderia Cepacia, and is being recalled by Procter & Gamble. Patients with Cystic Fibrosis who have been using Vicks Sinex Micromist Aqueous Nasal Spray Solution, 15ml should call 0800 555 515 to see if their batch has been affected. If it has we recommend they contact their CF consultant. There have been no reports to date of anyone falling ill from the sprays.
The CF Trust has worked with the Department of Health to produce these
swine flu guidelines for people with CF. These are being updated regularly and the document is dated when it was last checked.Behind the headlines
Our response to some recent issues that have hit the headlines can be found in the Behind the Headlines section.
