Parliamentary activity on IPF

[RFPM]

We held a parliamentary meeting earlier this month. MPs met people with IPF and their carers to talk to them about their experiences of living with IPF. After this meeting we've been driving awareness raising and have had 5 parliamentary questions answered as well as Alex, MP from County Durham, raising awareness alexcunninghammp.com/2014/0...

[simeon]

I had a look at what Alex Cunningham had to say but long experience tells me 'don't hold your breath...'. Not that I could hold my breath in the first place given that I suffer from IPF. But it reminds me of what I saw on the BLF website regarding the donations the BLF has given to research the various lung diseases. Now this may well be out of date by now but the information on your website seemed to indicate very substantially more was given to lung cancer research than was given for research into IPF. Obviously I am not against the lung cancer research but a lot of people and organisations are supporting cancer research while very few appear to support IPF research. I would love you to tell me I've got it wrong.

[RFPM in reply to simeon]

Hi Simeon, thanks for letting us know your thoughts. A lot of our funding for research is restricted by the donator for specific disease areas, so a lot of the time we have no option but to spend it on those specific areas. We are looking to try and influence this more in the future, and we are in the final stages of writing a research strategy which will focus more on our priority areas – one of these is ILD. You can find out more about our support and awareness raising work on IPF at blf.org.uk/ipf

[DozyDormouse]

Having read closely what has been said. Standard political waffle from all sides. No point in researching cures for something incurable. You can't uncook toast. We may have lost a few trillion brain cells but we are not stupid! Ugh, nasty lungs, lots to go wrong let's keep to removing and zapping those cancer growths. Cynical? Me? D

[RFPM in reply to DozyDormouse]

Hi, We're working hard to build up support from MPs, this is just the start. We will be writing a report and launching it in Parliament in Feb. We want to raise awareness amongst MPs, the general public and health care professionals. You can see our IPF resources and our project at blf.org.uk/ipf

[onamission in reply to RFPM]

I am pleased you are talking to MPs about this lung condition and I do hope they will continue to help after the next election. I feel people with lung conditions have had a real rough ride since Atos we have so many posts on this and people with lung conditions do not need the extra brought on by Atos.

[Offcut]

Firstly keep up the pressure, people need to know more of the affects lung disease has not only on the person but all of the people around them

I had 76% lung function in 2008 I now have 57% upright and 45% when flat and told they are sorry as they do not have a magic pill!

It is not only MP's but GP's that do not fully understand the life affects of lung disease.

Be Well

[RFPM]

Hi Flibberti, thanks for your interest. Sometimes large organisations who have an interest in a certain respiratory condition and want to fund research through us do make it a condition (e.g. the insurance industry may give us funding for mesothelioma research). Also people who set up a Breathe of Life fund can specify that they would like their fundraising to be spent on research ([e-mail] can tell you more). An independent panel made up of medical health experts, people with a lung condition, and our research experts at the BLF decide through a robust process who to give the actual research grants to, taking into account some of the conditions that may be attached to the funding. Hope that helps.