Research at the British Lung Foundation - what matters most to you?

[BethanyBateman]

Hi all,

Did you know that since the British Lung Foundation was set up, we’ve spent over £30 million on research into lung conditions?

This year, we’re deciding on a new plan for our research and we’d like you to help.

You’re the best people to tell us what's the most important type of research for us to do. If you’d like to have a say, please go to surveymonkey.co.uk/r/Z3TGXYR.

It should only take you a few minutes. You just need to look at the different options and put them in order of how important they are to you.

And if you want to find out more about the research we’ve done already, you can go to blf.org.uk/research.

Thanks guys!

Bethany

[cofdrop-UK]

I would actually have liked to have put 1 for them all. Very difficult to put them in order.

Cx

[BSA-3 in reply to cofdrop-UK]

I did put 1 for them all. Have I missed something? 😁

[Dawnsunny]

Survey wouldn’t load.

[pegbl]

I like coughdrop would like to have put 1 to more but done my best xxx

[Badbessie]

Sorry for some reason survey would not download. I would like the BLF to carry out research into the affects of anxiety. Particularly in the area of the newly diagnosed. Often on this forum and on other sites you get the post "Just diagnosed, what's going to happen?". In many cases the person is already showing moderate to severe signs of anxiety. No sleep, unable to eat, many state they are overwhelmed.

Basically I feel that lack of education on diagnosis causes much of the ongoing anxiety in COPD patients. If left anxiety becomes much harder to treat and in some cases takes over the life of the sufferers. In my opinion this anxiety is preventable.

Is there any evidence to suggest that education into the condition prevents anxiety?Or how much anxiety prevents patients from reaching their true potential because they are frightened.

Anxiety as a number of implications to the health of COPD patients. Which in turn as cost implications to the NHS. Pulmonary Rehabilitation is fine but it is often given years after diagnosis surely education on diagnosis could reduce both the physical and psychological aspects of COPD in the long term.

[Symes in reply to Badbessie]

Maybe this will help? blf.org.uk/your-stories/men...

[BethanyBateman in reply to Badbessie]

You raise a really good point Badbessie. This would come under the category of "Find better ways to help people live well with lung disease..."

I know there's some great research that's been happening in the North of England, looking at the benefits of cognitive behavioural therapy and COPD. It would be great if we could do more like this though. I'll feed back your suggestions to our research team when they look at the results of the survey.

You may also be interested to know that we've nearly finished some new health information around anxiety and depression. It's being reviewed by one of our Breathe Easy groups at the moment, but hopefully we'll be ready to put it online at the end of April/beginning of May.

[Ergendl]

The survey wouldn't load for me either, using a laptop running Windows 10.

[BethanyBateman in reply to Ergendl]

Is it still a problem Ergendl?

[Ergendl in reply to BethanyBateman]

No: I've been able to complete it now, thanks. So difficult to prioritise so many important things

[BethanyBateman in reply to Ergendl]

I'm glad it's working now, but I know what you mean about how hard it is!

[Hidden]

All done

[undine]

There was one rather glaring omission on the survey choices and one which whilst, the most important, in my view is often it seems overlooked - the search for a CURE. To my knowledge we know the body has an innate capacity to repair itself, as we know the liver is capable of doing so and some other organs to a greater or lesser degree. Research appears to show that with the aid of certain stem cells the lungs too have this capacity - the ability to repair the damage and thus cure this awful disease seems to me the obvious research to prioritise - so why is this not mentioned or included. My cynical side would say that research by the multinational drug companies would, for pecuniary reasons, rather prioritise treatments they can sell over and over again rather than a one off cure - especially one they could not maybe patent viz. the patient's own stem cells. Whatever, whilst I do not think a cure will come in my lifetime - too near the end now - I would like to think that progress towards a cure was being made. NB. for all my criticism of the drug companies I would just add that I do not think I would be alive today if it were not for the advances made with the inhalers which I believe while they still work on me are helping to keep me alive. so my thanks to them for that but it is not enough a way to a cure is the only way. Thank you.

[jjnanna in reply to undine]

Well said x

[BethanyBateman in reply to undine]

Hi Undine. Finding a cure is so important, but it won't happen without a better understanding of what these conditions are doing to our bodies. That's why we put "Turning ideas from the laboratory into potential new treatments". But perhaps it should have been clearer that it includes cures too. Sorry about that!

[undine in reply to BethanyBateman]

How about doing some actual in depth case studies with real people outside the lab. Why for instance can I with this disease no longer seem to regulate my body temperature as I used to be able to. Why, when so much is left up to the patient in regard to self help, is no one exploring avenues be it supplements, or aides that patients themselves say help, either to rule them out or maybe in for further exploration. Why not look at the whole body effects of this disease as we all know it is not just our lungs effected but our heart our circulation etc. Let's have some in depth research of us - not some isolated cells in a lab - thank you. And while I am at it let us also have some new up to date advice, on the fine tuning of treatment - not the general on size fits all advice as in when to take emergency meds etc, (I speak as someone who does not cough nor bring up mucus and yet can have an infection which it has taken me a few years of fine tuning to realise when but who on the general advice would be dead by now). Also let us have some update on research such as the apparent correlation between taking aspirin and reducing exacerbations, including please the dose of aspirin required. Thank you.

[Hacienda in reply to undine]

You are so right, exactly how I feel about all of this.. I am on the Transplant list, just had an exacerbation, Know my own Body and Functiones, feel left to my own devices, although the meds keep me going. Going to see my Consultant on the 9th, my 4 monthly appointment and talk about LVR, which I have been put forward to have.. I write Down the Questions I put to her, but come away none the wiser, maybe she doesn't know the answers, maybe it's me and don't grasp what she says. Maybe she should Join Healthunlocked and read our Magnificent Members own Learn from real people with real COPD ............just a Thought.

[BethanyBateman in reply to Hacienda]

You're right, this is such a great place to learn! I'm always telling healthcare professionals about HealthUnlocked. And those who come on here always rave about it afterwards.

[BethanyBateman in reply to undine]

The idea of personalising treatment is something I hear about more and more. From healthcare professionals and researchers as well as people who have lung conditions themselves. It's really important that we get better at it, which is why it's on our list of priorities.

I'm glad that you've been able to work out what works with your lungs. I know how frustrating it is to get a one size fits all answer to your health problems that just doesn't work for you.

Setting our priorities will help us decide what research is most important when we're giving out research funding. Whether it's lab based research with cells in test tubes, a study looking at a group of people, or an in depth case study such as you described is another matter. Any of those could be funded as long as it fits with the priorities, (which you'll help us decide with this survey) and the researcher can show that it's a good study where the results will make a difference.

If you want to see more about the way our research is funded and the type of thing we're doing, you can always have a look at the research pages on our website here - blf.org.uk/research

[BethanyBateman]

I think it's both, not one or other.

Healthcare professionals are experts by education but you, and everyone else on here, are experts by experience.

[Gingeros]

Sorry, link keeps saying can't find page.

Will keep trying.🤔

[BethanyBateman in reply to Gingeros]

Sorry Gringeros, I think the poll has closed now. Our research team are looking at the evidence provided on the survey, and the comments here, and using them to help them decide on our new strategy. When it's been finalised, I'll see if I can share it on here.

[Gingeros]

Will have to remember to look at Date, before I reply to post.

Thanks for letting me know.😆