Monday 27 September 2010

Support our Specialist Nurses

We're supporting the Royal College of Nursing's Frontline First campaign against cuts to nursing jobs and services in the NHS.

The CF Nurse Specialists have such an important role in patients lives and are the glue that holds the CF service together. Without them, it would fall apart. Apart from their identified CF responsibility in outpatient clinics, attending to inpatients, training the ward nurses in CF, and supporting families coping with IVs at home, they fill innumerable gaps. They are the familiar, constant and reassuring presence for families or adults with CF.

Some CF Nurse Specialists have been asked to spend some of their time on general ward duties rather than caring for those with CF. Whilst we appreciate the ongoing need for efficiency
and cost savings, this should never be at the expense of the health of people with Cystic Fibrosis. CF nurses and teams are often already overstretched and reducing nursing time further is a grave concern, particularly as we understand that this has led to a reduction in the number of home visits that some CF nurses are now able to undertake.

We are keen to hear from parents/patients as to whether these issues have affected the care you/your child receives. Please do contact us with your experiences by emailing

You can find out more about Frontline First here and read our post on their blog here

Wednesday 15 September 2010

Sam and team take on epic cycle challenge

We get to hear about some fantastic people with CF doing some amazing challenges here at the CF Trust and Sam Tomson is no exception. On the 9th October he'll be starting a 1,200 mile bike ride from Calais in France to Barcelona in Spain, and hopes to raise £10,000 for the CF Trust. Here's more from the man himself....

My name is Sam Tomson, I’m 28 and I have Cystic Fibrosis. I am very lucky to be able to even consider undertaking a challenge of this nature, which will involve cycling about 100 miles a day for 2 weeks. My lungs are colonised with Pseudomonas, but I manage to keep up a good lung function with lots of exercise and a focus on keeping my chest clear.

A few years ago I cycled just over 1,000 miles from Land’s End to John O’Groats and really enjoyed the experience of seeing England, Wales and Scotland in its purest form, and the immense satisfaction of seeing our progress on the map! The daily routine for the upcoming trip will be similarly gruelling: wake up early and try to stuff down as much breakfast as possible, do my medications and hit the road for a 7 hour or so day of cycling. Throughout the day my biggest challenge is staying hydrated and keeping my energy reserves up, so constant banana, cereal bar, jelly babies and glucose drinks action! Yes, there will be days I’ll be feeling low on energy or struggling to keep a big meal down while out cycling, but I know I’ll enjoy it and will be thinking of all the money we’ve raised. With my parents driving the route to provide back-up and carry all my medication, and my two team mates forging ahead and keeping all of our spirits up, I know I’ll complete the trip.

The link to sponsor me and the team, or share with someone else is We’re quite a way behind our target so every little helps and those extra £ will help inspire us to keep those legs pumping up and down and up and down….

Thanks Sam and good luck!