How do you keep going

[jhorsf]

I have heart disease, diabetes and bronchiectasis, everyone seems to box tick and pass you on to someone else's list . Bronchiectasis I cannot even get a consultant, just a phone call from hospital telling me I do not need to see anyone. Covid seems to be the excuse for everything .No wonder so many give up when they throw pills at you ,what happened to the NHS they use to care

[Alberta56]

I'm sorry you can't get proper care. Have you been referred for pulmonary rehab? The nurses who do these courses are very knowledgeable and helpful. Best wishes.

[jhorsf in reply to Alberta56]

Yes last year ,2 phone calls and they had mdt and discharged me without seeing me as physio who phoned me told them I was much better

[MMaud]

Does your clinic have a phone line you can call?

I'm very new to this life, but I have a number for the specialist nurses and pharmacist at the clinic. It's not usually picked up, but they respond to voicemail messages. I've been fortunate to get some useful information that route.

Fingers crossed.

[jhorsf in reply to MMaud]

I see no one other than gp well see lol telephone call

[Karenanne61]

A good consultant's secretary is worth her/his weight in gold. In my experience they act as a go between and have access to various helpful departments.

[peege]

If youre in England (I don't know about the rest of UK, it's in the NICE guidelines that you have to be under a consultant have access to winter antibiotics amongst other things if you have bronchiectasis . Check out the NICE guidelines so you can remind your GP.

Albeta56 mentioned Pulmonary Rehabilitation or PR, it's a 6 week course for people with lung disease of varying levels. Its two classes per week, 1st half beneficial exercise & 2nd half education on your conditions & how we can help ourselves. I found mine amazing

[Izb1 in reply to peege]

My consultant discharged me saying there was nothing more he could do for me Peege, he did very little to begin with other than connect me to ent which has been helpful and the only access i have to winter antibiotics is to contact my gp so I wonder where the NICE guidelines stand on this. I am lucky that the sinus op has cured alot of problems (although started another) x

[peege in reply to Izb1]

Similar situation here Izb1. When GP was informed by my new excellent respiratory nurse that under NICE guidelines what I was entitled to he promptly sent me for a simple scan. I say simple because it was nothing like the full, section by section CT I had in St George's under consultant in London which showed all the lung damage (I've since moved to Gloucestershire) . From result of scan my GP decided I don't have bronch thereforedo not need what nurse had ordered! Luckily he allowed me the winter abs so I've been reasonably ok (or perhaps thanks to cleaner air here). He also stopped my steroid nasal spray - ignoring or not seeing my chronic sinus history grrrr so I dislike him intensely, need to change surgery but haven't the energy. I know the proverbial will hit the fan at some stage but hanging on until after moving east in New year & will have to start again.

[Izb1 in reply to peege]

How awful for you Peege. I know what its like having a gp that just doesnt listen. My old gp wouldnt believe me when I told her the asthma meds were making me cough and continued with this for years, it wasnt until she left and I had details of a scan I had on Tescos car park that showed up bronchiectasis that they finally realised i dont have asthma. I know its a pain but change your gp asap x

[Damon1864 Volunteer]

So sorry to hear that you can't get better care, I don't think it's a case of the not caring, but the pressure they must be under not only from the medical side but also the government can't be easy for any of them. I'm sure you will get the help you need very soon. Please keep us updated have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx

[jhorsf]

First diagnosed with bronchiectasis in 2019 never had a consultant ,got diagnosed when in hospital with pneumonia I have no faith in doctors anymore

[Patk1 in reply to jhorsf]

Did u have ct scan?what treatments to on xq

[jhorsf]

Yes ct that is when they told me trimbow and nacsis and blue inhaler

[Patk1 in reply to jhorsf]

I hope yr well controlled on them

[jhorsf in reply to Patk1]

First 6 months of 2020 it was one chest infection after another and still no consultant covid is blamed for everything

[Patk1 in reply to jhorsf]

How's chest been since

[jhorsf in reply to Patk1]

Some days ok others not so

[Lfcpremier]

Not good enough. You need some help with your bronchiectasis if you keep getting infections. Find the name of a respiratory specialist at your local hospital & ask your GP for a referral to him or her. Insist. It is soul destroying when you have to fight your corner for treatment but sadly the system has been run into the ground.Good luck!

[Walkwalkwalk]

Oh I am sorry that you are feeling so low about this. It’s hard but pushing for a consultant referral, as advised here, will be a positive way forward. GP practices often have a nurse dedicated to lung conditions and that may be a good way to get started. I am sure that it all feels very difficult but if you can push that little bit more for a consultation it may help you get a programme in place.

My best wishes, Grace

[Otto11]

Bless you I’m so sorry & no wonder you are feeling so fed up. I can totally relate as I’m in a similar situation being diagnosed with Bronchiectasis on my last CT scan in Feb 2020 after being in hospital with Pneumonia. An appointment was arranged for March 2020 but was obviously cancelled & I still havnt been seen. I have had a phone call in October last year but consultant was vague. So no further forward yet. I was also diagnosed with Epilepsy in Nov 2020 GP had to refer me privately as up to a years wait on nhs & I havnt been seen since diagnosis either. I also have long standing RA which luckily isn’t too bad but waiting for foot surgery which has been cancelled now 5 or 6 times.

It’s hard to keep going some days I feel really down & others I’m ok but do understand. Now things are getting worse again with Covid where do we stand? Who would want to work for the nhs these days they must be under so much pressure I can’t imagine. Sending hugs here if you want to talk x

[Cloudancer]

So very sorry to read of the difficulties you are facing.It's no consolation that so many of us are in the same boat-would hate to be still working in the NHS now.

Years of poor management and cost cutting yet more stringent targets to achieve with no realistic prospect of improvement.

At the end of it all are us the patient -I have no idea of the answer.

However others have posted excellent advice which am sure will be of help to you.

As for your query how to keep going many of us live in the present moment as looking to the future is bleak

Very best wishes stay safe and I hope you get the treatment you need soon.

[siouxbecket]

I do sympathise, I feel like a rubber ball being kicked around from one healthcare adviser to another, all very nice but I don't get anywhere. The linchpin, whom I thought should be one's GP, is never available for comment.

[jhorsf in reply to siouxbecket]

100% agree exactly how I feel