Cystic Fibrosis is a complex disease requiring considerable specialist treatment. Over many years, the CF Trust has helped to set up and staff 45 specialist CF treatment centres throughout the UK. Since 1997, the Cystic Fibrosis Trust has invested well over £10 million in the NHS to improve the care of the 8,500 people in the UK with CF; helping fund doctors, nurses and multidisciplinary teams. We continue to fund the training of the CF specialists of tomorrow.

In the last financial year, we spent over £1.1 million on care and campaigning, to help us fulfil our aim to ensure the best possible care for those with Cystic Fibrosis.

Training the CF specialists of tomorrow
The Cystic Fibrosis Trust recognises the importance of ensuring a high level of CF care, not just now, but in the future as well. Each year we offer training grants in CF care to doctors, who will then go on to become specialist CF Consultants. The scheme has seen the appointment of four CF consultants since it began in 2005.

Peer Reviews
The Cystic Fibrosis Trust started a process of reviewing CF Centres and Clinics several years ago. In 2006, the current programme of peer reviews was established. The aim is to help improve the level of care that specialist CF Centres and networked clinics in the UK can offer to their patients. During a peer review, an independent panel of experts in CF care spend a day visiting a CF Centre or Clinic. They discuss with CF teams how they manage their service and identify any problem areas such as staff shortages. A detailed report is then sent to hospital managers and commissioners, highlighting what is being done well and any areas that need attention.

We have already carried out over 60 reviews, and some Centres have already received significant funding increases for their CF service as a result, showing that the time and effort required from all parties to coordinate and carry out these reviews is extremely worthwhile.

You can read further details of our peer reviews here.

Food for Thought
We are currently working to improve the level of dietetic support available for people with CF in the UK. It has long been known that a good nutritional status is linked strongly with favourable outcomes in CF, yet it became clear to us that some people with CF did not have access to appropriate nutritional guidance and support; indeed some had never seen a specialist CF dietitian.

In 2008 we conducted a survey among adults with CF and parents and carers of children with CF in the UK, to find out their views about the dietetic care they receive and how they handle the nutritional challenges of Cystic Fibrosis. Our report Food for Thought: Patients' and Carers' views on dietetic care in Cystic Fibrosis showed that there is still much to be done in this area. We have worked hard to gain some significant pledges to improve the situation, and the contents of the report will help us to push for further funding and increased services where needed. We are now repeating this survey for physiotherapy and next year hope to address psycho-social services, which have also been identified as lacking or inadequate in some Centres and Clinics. Having the relevant information will enable us to make an effective case to NHS managers for improvements.

Payment by Results (PbR)
Our work on Payment by Results, an initiative with the Department of Health to agree the proper cost of good CF care and ensure that CF clinical teams are properly resourced, continued to make steady progress. A detailed costing/banding information was submitted to the Department of Health for detailed analysis in March 2009, and it is hoped that a mandatory national tariff based on an annual/banded package of care will be implemented by the start of financial period in 2011/2012.

Clinical Care Pathway
We're in the process of creating an exciting new online resource for both patients and clinical teams - a comprehensive care pathway which emphasise the importance of Specialist CF Centres and Clinics for the delivery of CF care, as well as the specific care that should be expected. This pathway will be launched in 2010.

The UK CF Registry
The UK CF Registry, a database of all those with CF in the UK, continued to provide invaluable data about CF, enabling us to identify patterns and anomalies in CF care and outcomes across the UK, and tailor our campaigning and clinical care programmes more effectively. This year, the Registry revealed the very encouraging news that the median predicted survival for people with CF in the UK now stands at 38.8 years, compared to 31 in 2000, and we expect it to rise further year on year.

We set national standards on clinical care, provide and fund a UK CF Clinical Database and measure levels of service provision. Our Expert Patient Advisers (who all have CF) work with health providers and government to influence and improve the care of those with CF across the UK.