Respiratory Care?

I have noticed through reading all the posts, that if you have COPD, you are kept "under surveillance", so to speak. Does any one else with the Resp problems I have (Asbestosis + Bronchiestasis ) are left to "get on with it"?

[sassy59]

Nobody should be left to get on with anything George as all lung problems are serious so maybe your medical professionals need a nudge. Xxxx

[stone-UK]

Hi

There is a presumption that if you rarely visit your GP or have not been admitted to Hospital , that you have your condition under control. So they is no need for further treatment.

If you have been admitted to hospital or make frequent visit to your GP, he/she may refer you to the consultant or respitory team at local hospital.

Upon discharge you may be given a direct phone number to connect if you have further problems which they can resolve without having to visit you GP.

Of course your GP may also offer this service where you can speak to a practice nurse.

For my self I have a landline number for the respitory team, they can decide on home visit, advice over the phone or recommend a trip to hospital, the same number puts me in touch with the oxygen team.

I also have a mobile number to use 9am/3pm which if required will put me in contact with a consultant.

I can also phone my medical centre and speak to practice nurse, or request a call back from my GP.

I presume a lot depends on your condition how advanced you are and sadly location.

National does not always mean national.

[Hidden in reply to stone-UK]

Brilliant and helpful reply from you stone-UK as always.

[Katinka46 in reply to stone-UK]

Sounds good, but, as you say, probably depends on where you live.

K x

[Hidden in reply to stone-UK]

I see, so because I'm old school, and don't believe in calling GP every time I feel bad (which is most days for me) that could be the reason? I have multiple health issues, am housebound, and on the two occasions in 5 yrs that Respiratory team and others (more recently) have been out to see me they tell me I had "fallen under the radar". Don't get me wrong, I don't want frequent visits, but I would have thought someone would occasionally either call and ask how I am, or pop out to see how I am coping, getting any worse etc. The last time I asked for help in some one bringing med equip/sundries to me, I was told by Resp team "we don't do house calls". Yet I have friends/relatives who are classed COPD, who either have regular visits to or from their clinics / GP to test lung capacity/function etc.

I have no way of knowing if I'm getting any worse, or if its another chest infection (I know myself when I'm getting them, I've had so many. I can't see that it's down to the area you live in, but what I am beginning to believe more and more (and I never thought I would ever say this) is the older your getting the less attention you get. I'm comparing things now as to way things were 5 yrs back. And I've always been an ardent fighter for our nhs, believe me I've had just course to praise over the course of my life ( coming up 76 now)

[Symes in reply to Hidden]

If you're housebound George, maybe you could ask for a district nurse to come out and see you maybe once a week?

[stone-UK in reply to Hidden]

Hi

Some reading for you. Turn to page 47/48 what to expect.

Seem far more than what you appear to be receiving.

bronchiectasishelp.org.uk./...

[Hidden]

Only copders who are more severe are taken seriously George. I am high moderate and apart from a once a year visit to a respiratory nurse am completely ignored. x

[Symes]

Hi George,

While I do have COPD, I also have Bronchiectasis, and trust me, I'm certainly not left to "get on with it". My GP is very good at seeing me on a regular basis, and I have 3-6 monthly respiatory check ups at the hospital and see my consultant there every 3 months too.

Sounds like you need to speak to your GP and hospital

[Watfordgirl]

Hello George, it must be miserable to feel that you're not being supported or cared for. I think it's difficult when we compare ourselves with others - we all have lung conditions here but they can have very different problems and treatments. I know that many with COPD have had it for years and its only when it progresses that they see hospital consultants etc, in other words when GPs need more expertise in treating them.

I also know that NHS provision has changed. GPs are busy and patients now have to be much more proactive in asking for treatment. If you think you have a chest infection, George, you need to ask for an appointment to be seen, armed with a sputum specimen if possible! There is help there but we have to seek it out and ask for it. I know that some here have had awful care from their surgeries, and that's bad, but there's also good care.

And you can always find help and have a bit of a chat about things here. We care!!

Sue xxx

[y_not]

George, After telling my GP that I wanted referring and a PR course did they turn round and ask "Why?" - I'd had no medical contact for nearly 3 threes and other than repeat prescriptions there was absolutely nothing!

As a result of my DEMAND I am on a PR course, under a consultant, had lung function checked, heart checked, waiting an 'environmental irritant' test soon and, at last, feel that someone is just keeping a watchful eye on me - they gave me a new inhaler and changed another (saying the old one is less effective) and trialling antihistamines to see the effectiveness.

Sad that we have to demand rather than be offered but I guess in today's cost-cutting atmosphere that's all we can expect.

Stand up to them and demand your rights!

Good luck

[Hidden in reply to y_not]

Thank you all for your replies to my post

[carolcorby]

I also feel that I am left to get on with it.

No support from docs. Diagnosed with severe COPD , Given inhalers and emergency rescue pack and told that is enough.

I have to return to work as do not qualify for sickness benefit as low paid.

Also feel let down