Cinderella Condition?

[Alberta56]

I recently got a letter from a charity called Our Future Health, inviting people to join a research program which will eventually, hopefully, lead to improvements in the nation's health. Being a good citizen I joined up. I was a bit peeved to find how long it took me to fill in the questionnaire, which seemed more concerned about the history of my reproductive organs than any other bit of me. Eventually it got on to lungs and I was able to write that I had asthma and bronchiectasis. It asked me about the medications I took for asthma, but about bronchiectasis NOTHING. I was not happy. I don't think this survey is likely to do a lot to improve the lot of bronchiectasis sufferers.😡😡😡

[helenlw7]

I was diagnosed with bronchiectstasis and asthma in 2012. I regularly speak to my asthma man but he isn’t a brunch specialist. It was only last year that the nurse who did my asthma review gave me a leaflet explaining brunch.

[Swizzy in reply to helenlw7]

Hi helen You really need to be under the care of a true bronch specialist. Only they have the training and experience. Look on the website of your nearest large teaching hospital where you are most likely to find one. Take the name to your GP and insist on a referral. Don't take no for an answer. Don't leave it until you have a crisis or go downhill because GPs respiratory nurses and most general respiratory consultants know virtually nothing about it and whilst they are faffing about out of their depth your condition can go downhill.

[helenlw7 in reply to Swizzy]

Thank you. I’ve found on in my local hospital. Now to get an appointment with a gp! No doubt that will take longer!

[Jaybird19 in reply to helenlw7]

itried the same but didnt get a bronch specialist as . covid and he intervened he left in the meantime, and i was assigned to someone else so i gave up after that but stil go the wythtenshawe consultant

[Alberta56 in reply to helenlw7]

Grrr!

[Busybee57 in reply to helenlw7]

Hi All

I got disgnosed with bronch in 2017 after five years of coughing and recurring chest infections. Earlier this year I asked my gp if I could see a bronch specialist as I felt my condition was getting worse and the chest clinic had stopped my 6 month checks. My gp said I would need another ct scsn as. my results had been inconclusive 🤷‍♀️

This is after taking fostair, azithromycin, carbocistiene etc since 2017, which had in fairness stabilised things.!

The results have shown I have something at the top of the right lung which I knew and now nodules and I have been told my chest is clear 🤷‍♀️ I don’t have bronch, copd or anything to worry about yet still need to take the medication. I am back to where I was when my symptoms first started and non the wiser. That is my experience of asking for a bronch specialist. Probably not helpful but I hope you get the help you need xxx

[Alberta56 in reply to Busybee57]

Why are you prescribed medication for a condition you do not have? Inexplicable. An appointment with a bronc specialist would indicate whether your meds need tweaking. Persist if you have the energy. xxx

[Busybee57 in reply to Alberta56]

Thanks for the reply Alberta x Yes my thoughts exactly seems to be a blanket approach to copc, asthma and bronch here but I don’t have any of them apparently 🤷‍♀️. I thought the bronch specialist would be able to tell me if I have it or not in the first instance. I don’t trust the outcome but I’ll have another push when I’m ready xx Thanks again ❤️

[Alberta56 in reply to Busybee57]

It's wearisome to have to push and shove so to get sensible answers about our conditions. Best wishes.

[Swizzy]

After a lifetime with bronch (74 years) I can absolutely attest to the fact that we are the cinderella of lung conditions. I also had one of those letters but did not follow it up because I just knew that when it came to the crunch all that the researchers would be interested in would be asthma and copd. Over the decades there have been conferences and promises about new drugs and even our possible access to cystic fibrosis drugs but nothing ever comes of it. This is why I bang on and on that we have to be proactive in our own interests, often having to educate medics about our condition and vociferous in sourcing the appropriate treatment.

[Alberta56 in reply to Swizzy]

I did not respond to the first letter I got, but answered the second partly at least because my daughter had already joined up. She did not mention how longwinded the questionnaire was. Hope you and Lily are doing well. xxx

[Dottie11 in reply to Swizzy]

I threw two low positive CF sweat tests. Tests for most common 50 CF genes was negative. xx

[peege]

I got this too, possibly twice. I kept it for a couple of weeks before beginning the questionnaire, it was too nosey & and I decided there was too much personal data to be sold on so binned it.

I agree that bronchiectasis and some other lung diseases are the cinderellas of the health world & research institutions. Many have heard of cystic fibrosis, asthma & emphysema but others are left floundering in the dark grrrrrr. Thank g for this forum. ×××

[Jaybird19 in reply to peege]

yes i was not really happy about all the info and were it was going too so chickened out after thinking about it

[Seal59]

I joined up for Our Future Health. As I can no longer give blood due to bronchiectasis I thought I would do that instead. I can’t remember all the questions but it definitely sounds like I got a different set to you!

[Gwalltarian in reply to Seal59]

Are you an asthmatic? I was refused as a blood donor in my early 20s because I’m asthmatic.

[Seal59 in reply to Gwalltarian]

No I’m not asthmatic. I’ve done 75 donations but as soon as I was diagnosed with bronchiectasis I had to stop as it was on their list.

[Gwalltarian in reply to Seal59]

👍

[Alberta56 in reply to Seal59]

The form seemed to home in on some of my answers and ask more questions relating to them. A very clever clogs form. That's why I was cross that it wasn't interested in the lung condition that looms largest in my life. It didn't seem all that interested in my cardiac history come to that.

[Seal59 in reply to Alberta56]

I wasn’t asked any about lung conditions mine mostly seemed heart/diabetes related but I’m ok on both of those. I think the purpose of it is to get a general picture of the U.K.’s health so that in the future they can be proactive rather than reactive. Maybe with the blood samples and DNA analysis they will be able to help more people in the future. I certainly hope so.

[TDM2023]

Hello! It's not a charity. It's a collaborative NHS partnership with big pharmaceutical industry giants. To be part of it they have made, what is for them, a small financial contribution. This will help them in their pharmaceutical research and product development. "Our industry partners have agreed to make reasonable efforts to ensure that innovations developed using our resources are made available in the UK to benefit NHS patients". Note "reasonable"! It may well help NHS patients in the long run but you should be aware that it is also a data collection exercise for big pharmaceutical companies who exist to make money.

I always Google such initiatives before disclosing my private data.

Good luck with your bronchiectasis.

[Alberta56 in reply to TDM2023]

I assumed it was a charity because, at the end of the letter, it states that you can donate the £10 voucher they are offering to 'Our Future Health charity.' Not quite a con, but something very close to one. Thanks for the warning.

[peege in reply to TDM2023]

Ah that's what I thought too, thanks for the reminder. Cheeky beggars

[Ergendl]

I got something similar once, and it asked me how much alcohol I drink. When I said none (I've been TT for many years) it didn't believe me and chucked me out.

It's amazing how much research is limited be poor question choice.

[Nula2]

Grr typical😡. Bronch always gets lumped in with COPD! xxx

[Germantara]

That's disappointing

[Otto11]

Hi both myself & hubby signed up to My Future Health earlier this year. It is run by the NHS & is looking at statistics from the participants to help in earlier diagnosis of conditions like Diabetes etc. it’s preventative type of research. Ours was set up in Tesco car park so I was initially a bit dubious however I was pleasantly surprised to find it very well organised. I was seen by a Dr who first did BP weight & waist measurements & then a finger prick test for cholesterol & blood samples for DNA research. You are given the cholesterol result whilst there. He explained everything & was happy to answer any questions. It was very professional & well run. You can either keep the £10 or donate it. I donated mine as I feel the research into preventing certain conditions is a good thing.

[Ern007]

Is there any point in going on with this Chris, sounds very rum to me x

[Alberta56 in reply to Ern007]

My feeling too.

[Jaybird19]

yes i found the same asked me to go and giveblood for records butwould use up my taxi money as were based in carpark where had to pay also so didnt follow it up