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 gmatthews@cftrust.org.uk

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

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 www.justgiving.com/calbar2010. 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!

Team Racy Knickers hit the road!

Fundraisers Nicole Taylor, Sarah Kinloch and Carolyn McCall are preparing to embark on the adventure of a lifetime this September.

The girls, who have several friends with CF, will be driving from Calais to Split in Croatia in an organised car rally – a journey covering over 2000 kilometres.

Nicole said "This may not be an unusual leisure activity for some people. But for us 3 females who know very little about cars, this is a huge personal challenge to not only get to the finish line in Split but also get our car ready for the starting line!

There's also one other 'small' issue - the rules of the rally state that you must buy a car for under £150. So thankfully, we managed to source one from a friend for the grand sum of £0.43 - and a case of beer!"

You can sponsor the team here and follow their adventures on their blog

Southampton lads take on 980 mile cycle for the CF Trust

Southampton man Dan Doherty will be raising vital funds for the Cystic Fibrosis Trust this August by cycling from John O’Groats to Lands End.

29 year old Dan, who works for the engineering consultancy Mott MacDonald as an acoustic engineer, has chosen to raise money for the Cystic Fibrosis Trust because his younger brother Ben died of CF in 2008. He is taking part with three friends, Craig Bremner who also works for Mott MacDonald and his university friend Thomas Spenkuch. The team will cycle 100 miles a day for 10 days and will be riding without a support vehicle. Dan said “We are all avid cyclists and have been training but we’ve never cycled anything like the distance we’ll be covering during the challenge. I lost my brother, Ben, to Cystic Fibrosis when he was just 23 years old. We’re hoping to raise money to help fund research into a cure as well as treatment of the symptoms so that CF sufferers have brighter prospects and a longer life expectancy.”

The team leaves John O’ Groats on Sunday 22 August and you can sponsor them at www.justgiving.com/JoGLEforCF

Andrew walks Coast to Coast for the CF Trust

Congratulations to Andrew Horner who recently walked across northern England following Wainwright's Coast to Coast route - 12 days, 190 miles and three National Parks.

Andrew walked in memory of his friend Richard Grannell and has raised £1,250 for the CF Trust. You can find out more on his justgiving page.

Bon voyage to some fundraising friends

A sad farewell or perhaps au revoir to Michael Crouch and Tori Milner who are off on a round the world trip. Mike and Tori are friends of Catherine and Julian Sheahan who have 7 year old twins with CF. From when the children where first diagnosed Mike and Tori pledged to help in any way that they could and they have been great supporters of the CF Trust over the years.

Last year Michael completed Hadrian’s Wall on crutches despite being told by a physio that he was mad to do it. Not only did he finish it with energy and only one crutch, mastering the rugged pathways like a mountain goat, he did his part in raising nearly £20k for the CF Trust! Michael also is one of the top purchasers of the CF Trust's Mr Potato Head pin badges, as he was forced to buy one everytime he was late for a meeting with Julian. Needless to say, he has quite a collection!

To mark their farewell, before embarking on a round the world trip, the couple held a farewell party in aid of the Trust. This involved bowling, dressing up and karaoke, raising a further few thousand pounds. They have been dear friends and a real asset to the Trust, and will be sorely missed.

Sam takes Great Strides for the CF Trust

Well done to 11 year old Sam Haythornthwaite and family who took part in a sponsored walk at Itchen Valley Country Park in Hampshire to raise money for us.

Sam said: "I arrived on a beautiful day at the park with my Mum, Dad, sister and my dog Charlie. After bickering about where we were on the map, we set off to do the 5 kilometres through the country park. The walk took us through various trails past huge totem poles and thick forests. As we were the only family on the walk we were in no rush and eventually finished in 1 hour 40 minutes."

"We were amazed when we found out that altogether we had raised a total of £505 for the CF Trust. I'm very proud of raising this much. It means a lot to me because I have CF and it feels good because I know I've played a small part in helping to find a cure."

Thank you Sam and well done!