Through our publications, Expert Patient Advisers and campaigning work, we speak with an authoritative voice for the CF community.

Our campaigning has led to the introduction of newborn screening for Cystic Fibrosis across the whole of the UK. The last area without this to bring it in did so in October 2007.

The CF Trust lobbies government, provides written evidence for health reviews, submits reports on CF health care and gives evidence to the Health Select Committee in Westminster.

You can find details here about our campaigns such as Fair Care for All, Prescription Charges, Transplantation and Home Oxygen Services.


Fair Care for All

The Cystic Fibrosis Trust has always campaigned for the best possible NHS care to be available to everyone with Cystic Fibrosis. There has been little planning, however, at Department of Health level to ensure this is the case until recently.

Thanks to Lord Warner and Professor Sir David Carter, a fair and clear system for delivering NHS care to those who have one of 35 or so specialised conditions has now been agreed.

As one of these conditions, we will be working hard with the new specialised commissioners to ensure that:

• All CF patients are given the opportunity to attend a CF Specialist centre
• The level of care given is of a very high quality and is equally available to all, irrespective of where they live
• Drugs are prescribed on the basis of need and potential benefit, and not on cost or postcode considerations

We will keep you informed of developments. Do let us know of any problems in your area.


Prescription Charges

The Cystic Fibrosis Trust submitted evidence to a Health Select Committee enquiry into NHS Charges in 2006.

As a result of the Health Select Committee's report, the Department of Health agreed to review prescription charges and in summer 2007 recommended to Parliament a public consultation into the issue. This is expected to be launched in early 2008.

We will keep you updated on further developments.

Transplantation

The first successful lung transplant was performed in 1985 and well over 300 transplants have been performed on people with CF since then.

However, recently we have become aware of the many people with CF who are on the transplant list, but who don't receive a transplant in time. We understand that this is not a problem in some other countries.

We recently investigated the situation thoroughly and wrote a paper which we submitted to Alan Johnson, Secretary of State for Health and Elisabeth Buggins, Chair of the Organ Donation Taskforce. You can read our paper here.




Home Oxygen Service

Rosie Barnes, Chief Executive of the Cystic Fibrosis Trust, and Oli Lewington, who has CF and is on oxygen, met with representatives of the Department of Health who are overseeing the home oxygen service to raise some of the concerns brought to our attention by people with CF on oxygen.

We had a very friendly and constructive discussion where all agreed things needed to improve. The main areas of concern were difficulty in getting through on the telephone, the lack of courtesy and good customer service from some of the service contractors, an inability on their part to deliver appropriate amounts of oxygen in the right form with particular difficulties in relation to liquid or portable oxygen and problems with tubing and connections.

All of these are being addressed and we do hope that there will be considerable improvements this year.

Here you can read a more detailed account of the meeting.