Update on Cystic Fibrosis Campaign

The Cystic Fibrosis Trust have received over 11,000 signatures to their e-petition regarding the cost and availability of Kalydeco for the treatment of some patients with CF.

This has now been sent with all your comments to Vertex and to the Clinical Priorities Advisory Group (CPAG, set up by the NHS to make recommendations on Kalydeco), ahead of their meeting to discuss the recommendations on the funding of Kalydeco.

The Cystic Fibrosis Trust  aim to keep the petition going until a decision on funding is made. They believe "that this transformational medicine should be made available to all those who need it as soon as possible"

You can read all latest news and read the submitted letter 

http://www.cftrust.org.uk/pressoffice/news/kalydeco_petition_sent

Getting involved

Often we are reluctant to get involved or speak out, but occasionally when something we feel passionate about comes along it can be worth while just taking a moment to state your case. The internet can make this so much easier and whatever your feelings about the internet one of the positives is that it can be so simple to get behind a campaign and the only thing that you need to exercise is your fingers.

The The Cystic Fibrosis Trust are currently asking us to sign their online petition concerning the transformational new treatment Kalydeco which can have significant clinical benefit for some Cystic Fibrosis suffers. The Cystic Fibrosis Trust are pushing for a swift resolution between the NHS and the treatment manufacturer over costing and availability so that all who would benefit from Kalydeco can receive treatment as soon as possible.

We have added our names to the petition and if you wish to find out more there is further information available here:

http://www.cftrust.org.uk/pressoffice/pressofficepo/kalydeco_updates/kalydecoqa#wiksf

Or you can sign simply sign their petition here:

http://www.ipetitions.com/petition/campaign-for-kalydeco

And if you want to find out more about the work of Cystic Fibrosis Trust or get in touch why not check out their website:

http://www.cftrust.org.uk

Help

If you are newly diagnosed and struggling to find information about your condition you may find our useful links can provide a little more detail. If you are struggling to negotiate the minefield that is the NHS then why not try NHS Direct NHS Choices or perhaps PALS can help.

As the weather is getting colder and the nights are drawing in, now may be the time to have a chat with our Kindred Spirits. They all have thriving on line communities. So if you just want to chat or need helpful advice they are warm, welcoming and waiting to hear from you. There you will find people just like yourself who are experiencing similar symptoms, hopes and frustrations.

You can link through this blog or on our website. Why not check out what they have to offer. We often hear feedback from you as to just how positive and supportive getting in touch can be. 

Seasonal nebuliser advice

Well doesn't time fly! Yes I'm afraid it's that time of year again.

Now is a good time for those of you who only nebulise occasionally to be dragging your unit from the cupboard, dusting it off and stocking up on spares and accessories. You can do that by clicking HERE. For those of you who have to use your nebuliser a little more often, then maybe it's time it had its annual M.O.T. You can ring us on 01942 701210 or if you prefer  to email and find out if you have one of the units that still requires an annual service or you can ring the manufacturer. There are lots of pages and clickable links throughout the blog about cleaning and caring for your nebuliser.

And what about your annual flu jab? You can find out more here just why it may be a good idea for you and if so why not book your appointment today and if you are still unsure why not chat to any one of our useful links.