King's College Hospital NHS Foundation Trust Survey

[Carol_ALUK]

Comparing disability in activities of daily living over time among adults with advanced lung cancer or respiratory disease during the COVID-19 pandemic (DIScOVER)

We invite you to take part in a survey about your experience of managing your daily activities at home during the COVID-19 pandemic.

During the Coronavirus (COVID-19) pandemic, clear guidance on social isolation has been set by the government. This has enforced strict changes to the everyday lives of people with advanced respiratory conditions, including self-isolation or social shielding. These restrictions may affect a persons’ ability to carry out usual daily activities and the support needed to stay independent at home.

This survey study aims to understand how you are managing your daily activities during this time. It includes questions about any symptoms you experience, caring for yourself, services or support you have been accessing, and how you have been affected during the COVID-19 pandemic.

If you have a diagnosis of any advanced respiratory disease, including lung cancer, and would like further information about how to take part and what the study involves, please contact:

Ms Lucy Fettes

Physiotherapist and Research Assistant

King’s College London

Email [e-mail]

[Hidden]

Just a warning. I responded to lucy fettes, registering my interest in the research.

Her response was to tell me that I only qualified if I had a diagnosis of an advanced condition such as advanced copd, cancer or ild.

She did not appear to know that bronchiectasis exists, let alone that it is serious and in many of us, advanced.

They are completely excluding bronchiectasis.

We with this condition struggle on a daily basis with our condition, living, and the living through covid as much as those with their chosen conditions do.

The exculsion of bronchiectasis is not only an insult to those who have it, the gaping hole in the data which they collect will render their research inaccurate.

So think twice before you waste your time participating.

[cofdrop-UK in reply to Hidden]

Am I surprised following years of non cf bronchiectasis being neglected within trials and studies regarding respiratory conditions, even from a Physiotherapist belonging to a prestigious college as Kings College London - well no actually. Like you, and I expect many others, I too find the exclusion of BE to be an insult.

The daily management of this condition in normal times is a huge burden for those with advanced BE. Nebulising bronchodilators, saline and antibiotics and lung clearance several times a day. Some also do their own IVs at home and eg I have a midline in which has to be flushed every day. This would have been changed to a port in April had it not been for the lockdown.

We have been very much affected with regard to isolation and social shielding as those deemed suitable for inclusion during these difficult times.

Again figures will be skewed or non existent when it comes to those struggling with BE.

Thanks LP for the heads up.

Cx

[Hidden in reply to cofdrop-UK]

Thank you for saying your piece. It really is time that this ignorance and discrimination stopped!

[zube-UK in reply to Hidden]

I spoke to Lucy too, she said bronchiectasis should be included in any study of this nature, she agreed it was a very debilitating progressive condition which would be greatly affected by the pandemic. She was almost apologetic that bronchiectasis was not included, saying she would certainly take it into account in ongoing research. I smiled because it sounded to me like lucy had recently learnt quite a lot about bronchiectasis probably from you pom !. anyway, she will be asking questions now and also sent me a PPI link, so on it goes..

[Hidden in reply to zube-UK]

Yes she sent me the link too. Maybe if you are better with these things than me ( and you just must be!) You could put it on HU. I think that it could be of interest to many members with all lung conditions.

Thank you so much for getting involved and helping to increase knowledge of bronch in the people who really need to take notice of us.

I sometimes feel like the mad woman shouting in the wilderness.

[zube-UK in reply to Hidden]

Maddening it certainly is, specially for those of us 'lifers', you are not alone in this wilderness, we are all baffled why bronchiectasis is so often dismissed, not worthy of sf studies/treatments when copd etc are??

I will try and put the link up later, I've borrowed an iPad which has to go back to my neighbour today, will get a new one for myself soon.

Think I will go out the backdoor and kick something now 💥⚠️