Bronchiectasis doesn't have to be so frustrating

Andy was frustrated with the lack of information on his bronchiectasis. Now he's staying positive and making his voice heard by working together with Cochrane Airways. 

Andy is working with Cochrane to help other people with lung conditions

It took me a long time to get my bronchiectasis diagnosis. At one point I was going back and forth to my GP every two weeks! It was such a waste of resources. 

Every time I went, they would just give me more and more medication - it was a very reactive process. It wasn’t until I finally had some tests done, and saw a chest specialist at the Nelson Hospital, that I got my diagnosis. That was about 18 months ago.

A consultant was finally able to give me some structure for my treatment.

But it took such a long time to get to that point.

 

I want to save people from going through what I went through

Now I realise that everything I needed to know about my bronchiectasis was out there, but it just wasn't in one place. I feel like I wasted so much time. But I realised I had to stay positive.

I decided to get involved with Cochrane Airways, and join their patient steering group. Cochrane's reviews can be very influential in the way that people with lung conditions are treated. I tell them what I think, and help them work out what advice they should publish in their reviews. 

My experience could help someone else in my shoes get diagnosed and treated quicker

I want to save people from going through what I went through. By working with Cochrane, my experience could help someone else in my shoes get diagnosed and treated quicker. 

Working with Cochrane to make my voice heard

I went to an open meeting at St George’s Hospital in October, about six months after I was diagnosed, where I was asked if I if wanted to get involved with Cochrane’s patient voice group.

Since I joined, our group been asked to do some very fundamental, but very useful work. We had a meeting where we talked about a series of questions someone with COPD might be asked, and we had to say how we felt about the way they were written. 

I’m passionate about helping

I feel very passionate about the work I'm doing with Cochrane, because I suffer with a lung condition myself, so I know what it’s like, and I’ve experienced first hand what can happen when information isn’t distributed properly.

For instance, no one told me I was supposed to visit my GP surgery nurse every six months for an inhaler technique review. I also ended up accidentally developing an addiction to steroids, after misusing emergency packs that a nurse at my pulmonary rehab told me about, which could have easily been avoided. 

I now know that condition can be managed effectively, but really, it should have been managed earlier.

It’s been an eye-opening experience

I’ve not been involved with Cochrane that long, but it’s already been very eye-opening and beneficial for me. Working together with patient group, I find I’ve learned things I might not have otherwise.

I’m in my 60s, and although I’m no tech-whizz, I use the internet extensively - I think it’s a very effective way of getting information across. But in the patient group, I realised there are some in the older generations who are ambivalent about modern communication, or even negative about it. It shows that we need to make sure everyone with a lung condition has their needs accommodated.

I'm helping Cochrane bridge the gaps, so people don’t have to suffer the way I did

It’s given me a new perspective on life, and a new way to be positive about things.

I’m still a big fan of the NHS

The NHS is brilliant, but it’s a big animal, that must be cumbersome to manage - which is where information technology comes in. I think it’s really important to help develop a sensible set of guidelines that work for everyone, from GPs to surgeons and practice nurses. 

I’m so proud to be using my experience to help Cochrane to work towards this. I'm helping them bridge the gaps and coordinate information properly, so people don’t have to suffer the way I did.


Comments

I was diagnosed with COPD in Lewisham Hospital and that was it nothing else just carry on with life Tom
I have asthma so inhalers . Partner bronchiectasis I've often said to him he needs inhalers .he says dr.says not? ??
I was diagnosed some years ago with C.O.P.D. and it's gradually got worse. My Fev1is 21% and Fev is 16%. I also have bronchieitis (which I struggle to pronounce!) and recently discovered through reading a letter sent from a consultant to my local surgery (I have online access to my medical records) that I have pleuritic thickening, something nobody has mentioned! (I also have other illnesses unrelated to lungs) Nobody has really gave me any info about my lungs, it's just been a case of here's some inhalers, see you. I didn't even know about rescue packs until my sister told me a couple of years ago! GP's are so busy nowadays they have very little time for anyone.

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17 September 2018