Newsletter Issue 1 Spring 2015
Welcome to the first edition of our newsletter! We’ll try and keep you informed of the Group activities, and update you with the latest news from our clinical members.
Our second meeting was held on January 20th, at the Fleming Park Bowling Club ,and was well supported, with about 50 attendees. We learned what ILD is, and split into two groups in separate rooms (the ‘Cracklers’ and their Supporters) for a free discussion time, which was felt to be useful for both groups .After tea and cakes, we had a very interesting talk on travelling with ILD - made all the more interesting by the input of an intrepid patient/traveller ! It’s good to get the input of those with hands on experience...
Kate Sonpal, from the biomedical Research and WILD team told us about patient & public involvement in research and raising awareness. We completed the afternoon with a discussion on the way forward for WILD , registering as a charity, fund-raising, awareness raising etc - watch this space!
WILD goes to Westminster! February 25th 2015
And here we are, at the launch of the BLF’s new report on IPF
We had plenty of time to ‘mingle’ and talk with patients, carers, clinicians and MPs from all over the country; we had an inspirational talk from a patient, and heard from Alex Cunningham MP. It all adds to raising the awareness of IPF amongst MPs (Although we may have to start on another cohort after May’s elections......)
Our next meeting will be on Tuesday May 12th, 1pm - 4pm at the same venue in Kornwestheim Way, Eastleigh (behind the Holiday Inn, Passfield Avenue, SO50 9NL). The theme for this meeting will be ‘Staying active with ILD’, there will be a news round-up, relevant presentations and discussions, lots of time for tea (and cake) and a chat.
Breaking news:· Pulmonary rehab is now available for all IPF patients in the Southampton city area (postcodes SO14-19) · The BLF have launched a virtual ILD campaign, we are linked into this and our opinions have been sought · Nintedanib is licensed in Europe which means the new patients will no longer be able to have the drug from 01/04/15, but it is over a year from NICE approval - this means a gap in provision for new patients
Hope you can make it to the next meeting!