We're working with a researcher who'd... - British Lung Foun...

British Lung Foundation

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We're working with a researcher who'd love to know; would you be interested in shared medical appointments for your COPD?

Carol_BLFHelpline profile imageCarol_BLFHelplineAdministrator202 Voters

Please select all that apply:

62 Replies
Carol_BLFHelpline profile image
Carol_BLFHelplineAdministrator

Shared medical appointments would involve meeting your doctor or nurse in a group, with 6 – 10 other people with COPD. You’d be able to ask questions, share and learn from others. Please select all that apply, or add any questions in the comments.

I cannot stop thinking that this is a cost cutting exercise. I cannot see any benefit for me, rather I see that I would need to shout louder in a group than individually. Groups have their own priorities, not always benign.

Carol_BLFHelpline profile image
Carol_BLFHelplineAdministrator in reply to ffederbompou

Thanks for the feedback really helpful

flo1 profile image
flo1 in reply to ffederbompou

Or another big experiment?

It gets you no farther ahead,and most GP's know less than l do. Several treatments for C.O.P.D. are available,or should l say out there,but we cannot get them.I have spent £12000 + on stem cell abroad,but because it was not introduced to my system as it is now,it has not worked.But there are things to keep our Trachea open for easier breathing,ways of removing the dead Areola to keep it from advancing these only a very few.Can we get the treatment can we nothing !!!

flo1 profile image
flo1 in reply to syntax

I have a genetic lung ..liver disease stage 4 diagnosis..they have been promising gene therapy CRISPR 9 for years we are still no nearer to the clinic care, in part why I never attempted stem cell therapy as nobody I know has ever had a successful outcome, its down to diagnostics and if we are left to late we are toast..the fact that gp's are mostly now doing call or zoom care (remote) we have ever less chance..of even survival..so thankfully I was at least diagnosed when we could be.

syntax profile image
syntax in reply to flo1

As l said,when l had Stem Cell it was done the wrong way,but now they have learnt more then there is more chance of it working.Just do not give up !! Look at natural medication this can be of great help.Build up your immune system it makes a lot of difference.Grape seed extract,vit's D3 & K2 are good,and of course Elderberry Pure Pressed Juice,which is much better than Blue Berries. You will need to spend lots of time on the PC but worth it.

I was given 5 years 13 years ago ????

flo1 profile image
flo1 in reply to syntax

I was given 2 yrs 15 yrs ago..I walk, I eat healthy and I intend to be around fighting for more years. Walking daily has effectively saved me in this..I have a great deal of support from my nearest and dearest and I have 3 wonderful small dogs..also live near the coast I did a lot of changing and it paid off...I try to keep fit and so far I am holding my own ..many with my condition are long gone all transplanted too...so I cant complain!

syntax profile image
syntax in reply to flo1

Yes most transplants last appx 3 yrs at most. Keep up the walking it does a good job,sadly because COPD all over lungs can only walk 20 ft at a time. Which means l am now 41/2 stone more than l have ever been. Not been drinking (Lager ) very little in the way of food,but without exercise bit of a loser.

DYellow profile image
DYellow in reply to syntax

I am unable to walk very far, it’s a real struggle and I need to keep stopping as I also have peripheral neuropathy. Even worse on return from shortish dog walk , and even worse than that if I try to carry something and walk, even my handbag,so yes struggling to lose weight or keep it off too.

My GP practice is not interested in my condition now, I hardly think this would improve things. If I am brutally honest, I find the whole concept discourteous and just reinforces how little people with COPD are thought of. Anything to save money comes to mind.

Debs_BLFHelpline profile image
Debs_BLFHelplineBritish Lung Foundation in reply to Wisper

Thank you for your comments

I get the impression your researchers are just trying to reinvent the wheel so to speak and that properly funded and readily avaiable pulmonary rehabilitation courses would adequately cover what they are tying to achieve?

I would love to but I am really too poorly to visit outdoors, and unable to participate, I really wish I could, but I will keep an eye on any results

Carol_BLFHelpline profile image
Carol_BLFHelplineAdministrator in reply to janet1944

Hi Janet1944, thanks for the feedback, if you would like to have a chat about your condition please call our helpline 03000 030 555

I can't think of any aspects which would require confidentiality.

My GP practice is still only doing telephone consults.

flo1 profile image
flo1 in reply to CDPO16

So is mine! Which is barbaric! We are very sick and we need monitoring and care neither of which I have received in over 2 yrs now...A double lung transplant deferred last April, I will expire outside of covid not in it as many lung patients as outlined here have shown we are treated with little to no regard..as it's still the 3rd biggest killer on planet earth we have to ask why? Also, the treatments which lag to date behind everything else outside of lung disease and expert centres are very hard to access for the vast majority so no I am not happy doing a sit-in with 10 people googling me thanks! I would like the chance to be seen face to face again, especially with the Consultant and GP I was recently informed that 18 months wait for a 6 min walk, can anyone explain that?

I don’t think Pete would be too keen to attend appointments with total strangers especially now. Individual appointments would suit him best due to his vulnerability. Thank you though Carol. Xxx

Debs_BLFHelpline profile image
Debs_BLFHelplineBritish Lung Foundation in reply to sassy59

Thanks sassy59 for your comments

Ha ha Carole,it's virtually impossible to meet my Gp on an individual basis,i somehow doubt they would interrupt their bridge or golfing afternoon to meet with another 9 people as well.😂 x

No and no again not much confidenciallity left as it is, I have Brochiectasis and all my ivs have been withdrawn, I have deteriated badly, Drs dont care they say they are unable to offer service any more. I did my own through a pic line and opat, feel so let down.

DYellow profile image
DYellow in reply to maggy12

Oh golly , now I’m worried for my future too!

I don’t feel shared appointments would be beneficial to anyone to be fair, everyone needing an appointment would most likely have specifics they wanted to discuss, depending how long the appointment was going to be for would depend if anyone managed to get any help , so I will stick to an appointment just for me when I can actually even manage to get one, 😊

Debs_BLFHelpline profile image
Debs_BLFHelplineBritish Lung Foundation in reply to Loopylorre

Thank you for taking the time to comment, very helpful

Why is the researcher looking at COPD and no other ILD?

Carol_BLFHelpline profile image
Carol_BLFHelplineAdministrator in reply to Walkwalkwalk

Thanks for your comment. The researcher that we’re working with on this project is applying for a grant from a research funder that specifically aims to support people with COPD. Here at the BLF, work with researchers across a range of lung diseases and will continue to support research in other areas for future funding calls. Please keep an eye out for future questions for other lung diseases, as your insight is really important to us and we love hearing from you.

HiI have questions to ask about COPD

The doctor they staff us. With madicine and yes with inhalers that's all rather saying that there is not cure for COPD and thàt is that so we have live and breathe with madicines and then it up to us to manage this and it says is a life chose ok but don't smoke don't drink eat healthy and never head health issue in my 50 years in my life and last year I had covid and after that I wos stragelling and I have been left with COPD that's my storie and I wos fit and exercising all time and look me now only I can go for walks and I need to stop and rest.

I haven't seen my GP for an Annual Review in nearly 2 years. When I am offered an appointment, it's usually with a Healthcare Assistant who refuses to share the results, because that has to be done by my GP! They are just not interested! Oh, and they always ask 'how is your ASTHMA?', knowing full well that I have very severe COPD!

flo1 profile image
flo1 in reply to KD55

I haven't seen a Consultant and I am on a double assessment plan for a double lung transplant! GP's are over down my part took decisions to continue down remote diagnostic route clever stuff as nobody can diagnose over a phone or zoom, but we surely knew that didn't we?

Hi Carol l have Chronic Bronchiectasis and Asthma does these conditions come under COPD l am on liquid antibiotics with the nebulizer and take Trimbow and easibreathe. If l can help other sufferers and medical research l would attend any appointments

In terms of support/general well-being sessions offering guidance and seasonal tips (on how to manage breathing in high humidity for example) it could be beneficial; in terms of personalised medical care - No, defeats the purpose. Impractical for both medical professionals and patients.

Debs_BLFHelpline profile image
Debs_BLFHelplineBritish Lung Foundation in reply to Ddm18

thank you for letting us know your views

Its like hens teeth trying to get an appointment where I am would be very difficult xx

Good idea

What about cross infection? I have Bronchiectasis and caught haemophilus influenzae from another patient in a waiting room 12 years ago, still struggling to clear it now, shared appointments for people with compromised lungs is not a good idea, why don’t they know this?

Charlie_G profile image
Charlie_G in reply to zube-UK

Current wisdom is that cross infection in COPD is not a concern. Recent studies have shown that bugs are not aerosolised and transmitted in the same way from patients with COPD as they are in other conditions where cross-infection is a known issue, and that any bacteria that are released when people with COPD cough actually die off much more quickly.

zube-UK profile image
zube-UK in reply to Charlie_G

Yes Charlie, Bronchiectasis and CF are very different conditions to COPD but some people unknowingly have both COPD and Bronchiectasis, often my gp says COPD and Bronchiectasis are the same, they are not the same, as we know. The studies you found are interesting but I do not want to share face to face group appointments.

I should have read what ‘shared medical appointments’ means before I answered questions! I can’t really see the benefit, particularly as my GP is only currently doing phone consultation, anything that needs personal contact your told to present yourself to hospital! I haven’t found GPs at my practise are very ‘on it’ or up to date with treatments etc for COPD! Had to ask for referral to respiratory clinic to be monitored annually, where my inhalers were immediately changed!

Debs_BLFHelpline profile image
Debs_BLFHelplineBritish Lung Foundation in reply to Yeo58

Thank you for taking the time to feedback, very useful

I don't know if group appointments would be any help although I might well try to see. My GP is only offering phone appointments and you have to be triaged for them by the so called patient advisors. I have been passed to the Respiratory Department at the local hospital and, although I have only had zoom appointments, I feel that they are more versed and interested in my condition. This is the second year that the surgery has not carried out the annual breathing tests and review but they did them at the hospital

Debs_BLFHelpline profile image
Debs_BLFHelplineBritish Lung Foundation in reply to Glenys12

Thank you for taking the time to feedback

Your welcome. if I can help any further just ask

I think the group therapy would be enormously valuable!

Debs_BLFHelpline profile image
Debs_BLFHelplineBritish Lung Foundation in reply to Sharp5Flat13

Thanks for letting us know your views

Is this a cost cutting exercise because appointments are so far behind because of COVID and long COVID ?

I must have misheard a few years ago when the BLF were spouting this great five year plan for lung health. I thought I heard the word ''improve'' but it must have been ''reduce''! Not that you could reduce the ''care'' we receive much further without it being non existent of course!

Carol_BLFHelpline profile image
Carol_BLFHelplineAdministrator in reply to Hoobs

Thank you for your comment and I’m sorry to hear that you feel care for people with lung disease has reduced over the last few years. The BLF continue campaigning to improve outcomes for people with lung disease through the Taskforce for Lung Health five-year plan and you can read what we’ve been up to on the Taskforce website: blf.org.uk/taskforce.

This research on shared medical appointments would not be intended to reduce the quality of care that you’d receive, but it is hoped that it might bring other benefits as you’d be able to speak to other people with lung disease. We’re always grateful to hear your feedback and we’ll pass this on to the research team to consider.

Interesting to see that so many other people are suffering from "GP Lockdown". Sad to say that I have switched from being a staunch defender of our local Health Centre and I am now highly critical of the procedures they have imposed which seem to have had the effect of making appointments impossible to obtain. Coupled with what seems to be a steadfast refusal to see patients face to face I am beginning to wonder what they do all day!

flo1 profile image
flo1 in reply to Sgt_Pepper

Busy enjoying life something very sick lung patients can't do of course! Our surgery serves around 7 thousand in the village in Devon they are going to take the covid opportunity to continue call or zoom appointments for the foreseeable in other words they are to remain this way!! This is not health care it's no care, primary care is a tool of diagnostics without it we are mustard! is this the plan? ...I lost a best friend to cancer last year a speedy one anaplastic, not one Doc visited her she died within 6 months. We are beyond boiling points down here ... I run 2 support groups both USA and Canadian patients are accessing gp's and consultants and have done throughout covid one lady had a double lung transplant as she informs me its biz as usual!!! I am awaiting an assessment for one! No sign yet with the variants being allowed into our Country to wreck lives and wreak havoc..we are being led to slaughter.

The BreatheEasy group I attend gives me the opportunity to ask questions of others with similar conditions and we occasionally have input from medical professionals who are willing to answer questions.I have a regular annual review with my resp consultant who is excellent (in my opinion) and who listens well to what I have to say and responds accordingly with any information I require.

I also attend a regular annual review with the respiratory nurse at my GP surgery who is also knowledgeable and helpful.

I consider myself extremely fortunate to have so much support.

I cannot really see how I would benefit from a shared medical appointment as it is likely that I would be selective about what information I shared.

The medical practitioners are bound by confidentiality and risk losing their jobs for a serious breach but fellow patients may be less careful with information given and this could be problematic, especially in smaller communities.

Debs_BLFHelpline profile image
Debs_BLFHelplineBritish Lung Foundation in reply to MoyB

Thank you for your reply, very helpful

I`m sorry, but would find this difficult, as I am not even keen on talking to my doc, let alone sharing my appointment, so very sorry

Carol_BLFHelpline profile image
Carol_BLFHelplineAdministrator in reply to ding_dong_bell

Thank you for taking the time to comment

I was only told I probably had COPD on the 1st March this year and it could not be confirmed because spirometry tests could not be undertaken due to Covid 19 restrictions. Since then I have been prescribed two inhalers, neither of which has made any difference and five days ago Carbocisteine. I also gave a sputum sample for analysis at this time. I am still awaiting a result. One day after finding difficulty in breathing after walking 300 yards a young doctor prescribed a five day course of Amoxicillin and Prednisolone. I felt wonderful the next day and for twelve other days. These were the only ones in five months when I did not wake during the night gasping for breath and coughing up huge amounts of mucus and of course my only full nights sleep. It all seems rather experimental and very hit and miss, as well as being expensive. I don't think having appointments with eight other people, all who may have the same illness, but with very different reactions to both it and medications would help. If the meeting was controlled to allow every attendee the same amount of time, almost impossible in my experience of meetings, each person would have to be there for ninety minutes to get ten minutes dedicated to their personal situation

Debs_BLFHelpline profile image
Debs_BLFHelplineBritish Lung Foundation in reply to Uresider

Thank you for taking the time to share your views. If you have any questions about your COPD or would like advice on general management of the condition, you are very welcome to call our nurses for a chat on 03000 030 555.

Take care

Debs

It is impossible to get an appointment and has been for the last 18 months even difficult to get a telephone consultation. I have had one face to face consultation with my consultant and several telephone consultations far more than GP practice. In light of current lack of care, I would not be interested in participating in shared medical appointments.

People's experience of their lung condition is so widely varied that I cannot see that there would be any value in joining up with others. I can imagine COPD treatment and appointments take up a lot of time for GP practice staff, but it is part of the condition.Flare-up's, annual review (not yet), face-to-face and phone consultations, side-effects from rescue meds - I must have had so many appointments this past year - and I'm barely more than 'moderate' asthma-COPD. I think I must have driven my poor GP to the brink as she has just accepted for me to have a referral to the respiratory specialists....!

What's happened to patient confidentiality. Can't see how this can work.

We have these shared questions and answers at pulmonary rehab ,personally as someone who has attended quite a few courses the same repetitive questions tend to make me disengage, in fact those running the course excluded quite a few people as they were of no use to us, I much prefer a one too one with a health care professional

Well we must be the lucky ones here in south west Wales. I will say from the start I have been diagnosed with terminal lung cancer with possibly two years left. But back to the point I see my consultant every three weeks face to face and yesterday I saw my GP in the health centre. We have an online APP. called ask your GP and that is the best thing that has ever happened in our health centre. You go on line and ask your GP any question about your health an d there are three options The GP will either email you back, Phone you back or give you an appointment to see him/her that day. Fabulous service.

I have bronchiectasis