copd and no help

[starglitzy]

11 years ago i went for spiromtry, i cant spell it, i got told i was moderate, they would send for me in 12months for another, this time they never sent for, so i have seen nobody in 10 years, in june i went to holiday to turkey, and i just could not breathe, they took me to hospital and was placed on oxygen for 4 days, since i have come back to uk, i have in touch with my drs, and go in to see them 31st july, in turkey they could not believe i was on no inhalers at all

[Bingo88]

That's disgusting treatment. Once the year had passed and you had not heard from them you should have requested another check up. Sadly we have to look after ourselves more now and chase appointments up. Hope they put you on Inhalers to help you. Brian

[sassy59]

Hoping you get the help and support you need and be clear to your doctors that you need regular check ups. Good luck to you. X

[teddyd]

That does not sound good. Did you not visit your GP or respiratory nurse in 10 years?

[starglitzy in reply to teddyd]

i did visit in 2016 with a chest infection

[teddyd in reply to starglitzy]

Hindsight is an amazing thing but maybe if you felt things had been getting worse an appointment with your Gp or respiratory nurse at your practice would have been beneficial . If I feel things have changed I make an appointment for a review . I am aware different surgeries and different health boards have different systems etc.

[kev60]

Hi, I was diagnosed in 2017 and a year later the GP called me in for a spirometry but they couldn’t understand why I had no inhaler, they got me one and had test then a week later they told me that I didn’t have emphysema (so no free flu jab). I had to prove that I had emphysema as luck would have it I still had the letter from the consultant and as he was very senior they jumped through hoops to get me re- tested and gave me a rescue pack and an action plan. I had a review over the phone this year and when I checked my medical records it gave a score of 6/40 , when I called they about it my score went to 16/40 . You just have to be aware of your problems and speak to them when you feel it’s wrong and get your records corrected this is important as other doctors check your medical records and if there lis a mistake it can take awhile to get changed. Good luck in the future. Kevin

[Izb1]

Hi Starglitzy and welcome to the site. You must have dropped out of the system, although this shouldn't happen it often does. I can't believe you haven't needed to see your doctor in 10 years which must mean your condition has been mild. When you go to see you doctor on 31st July make sure you ask to be referred to the hospital, you need to be under a consultant who can diagnose and monitor your condition. Good luck x

[ilos in reply to Izb1]

It's probably the post code lottery but I've had COPD (now severe emphysema) for 13 years and I've never had an appointment with a hospital consultant.

[Izb1 in reply to ilos]

Sounds more like neglect from your gp. I would get a referral from your gp so your condition can be monitored and ensure you are on the right medication x

[Germantara in reply to ilos]

I was diagnosed copd 5 years ago never being ta hospital ta see anyone but most peaple who get diagnosed do so I asked could I be referred ta make sure I'm on right meds for it so forth nurse said ooo no we don't need to do that we see to it all so never been I was told not ta see docter about copd mess I've never seen a doctor about bout it even my rescue steroid tablets let us know when you're taking them I don't if I need them I take them

[katieoxo60]

Well starglitzy, that sounds good in one sense that you have been well for the past ten years without inhalers, however since your last experience in Turkey I agree with others you need to chase this up with your GP. I have an annual check at GPs but I do take three inhalers. But have not seen a consultant for this for over ten years, have been to a course on how to manage living with breathing problems recently. So hope this gives you hope ,there are treatments and it is not very nice trying to breath when you have a flare up is it so don't be put off there is help available plus groups who meet to share experiences now the pandemic is over . Best Wishes, in an emergency a hand held fan near to face can help ease the breathing

[peege]

Hi, welcome to this great lung patient's forum starglitzy.I'm afraid we've had to be extremely proactive in getting nhs support for whatever lung ailment we have, that's been so since I joined this forum over ten years ago.

Some members are very lucky in that they have excellent care from their GP surgery however, it seems many many of us don't so it's up to us to ensure that promised follow ups are chased - by ourselves.

It's a shame, when you were diagnosed 10 years ago with simple adjustments to your lifestyle you could have remained moderate or reduced to mild.

Perhaps its not too late to make some changes 🤞🤞🤞

[bobbyfloyd]

The same old story of people who are ill got to fight for help, most of the time we have got to look after ourselves which to me is so wrong, hope you get the help you need.

[Alberta56]

Welcome to he forum. Others have said it all. We have to ask loud and clear for the help we need. You don't want a repeat of the Turkish experience.

[JulyAugust]

Hi, unfortunately you probably got overlooked by your GP surgery. I have found you have to follow up on health matters otherwise things don’t progress. I hope your appointment on 31st July goes well and you get some medication which will help your breathing. Jan

[PaulineHM]

I feel you and things in the NHS are particularly difficult at the moment.

The I manage my ACOS/ COPD is to learn all I can about the condition, work out what I need to do to keep me well and be assertive when I need to see Health Care Professionals to help me.

Can you ask your surgery for a COPD review? If they tell they don’t do it anymore! Simply stand your ground politely and tell them you need one. Don’t go away until they offer your an appointment.

The British Lung Foundation/Asthma + Lung U.K. website have a self management plan on their website. Have you taken a look at that ?

Have you been offered a Pulmonary Rehabilitation course ?

The better your general health, nutrition and exercise levels are, then the better your lung health will be.

Be well.

Pauline