did an interesting exercise yesterday!

[Tiggertheterrier]

So, while I wait ( oh so very patiently) for my Respiratory O/P appointment to arrive ( original referral sent by GP on 31 August 2022) I decided, in the hope that I get to see a more enlightened Consultant than my old one, to write out the saga of my dealings with their department since I first saw them in 2009.

All the appointments, who I had seen, all the tests, Xrays, scans, medication, what my current lung health was like ( deteriorating due to their laxity in seeing me when asked!), other ongoing health conditions. The last paragraph I wrote was something along the lines of 'what I hope the consultant can do for me at my next visit'.

I have 5 sides of A4 scribbled down, which I will type up later today.

Found it really helpful, and interesting too, as I looked back on my progression through umpteen different inhalers🙄.

With my memory being like a sieve these days, having everything in writing is invaluable.

postman has just arrived....as usual I will open the hall door in hopes that there is a white envelope with the healthboard stamp on it lying on the doormat!

[Patk1]

I'd ring the appointments booking line,see where yr referral is up to x

[Tiggertheterrier in reply to Patk1]

Hi Patk1, I tried thar to be told that she couldn't see the referral on her computer screen, and to ask my GP to send another one - which GP did on 22nd Sept last year( with a strongly worded letter in with it!), am still waiting. Wales very badly let down by nhs here. In South Wales hundreds of people were 'accidentally' removed from surgery waiting lists!!!! That was on the main bbc news. This is, personally, the third time my appointments have mysteriously been ignored or bungled.

[Patk1 in reply to Tiggertheterrier]

That's awful! Is it worth going thro hospital switchboard & ask to be put through to respiratory secretary.i can't think of another way.failing that,ask gp secretary to chase it up. Good luck x

[Alberta56 in reply to Tiggertheterrier]

Grrr!

[warwickstag in reply to Tiggertheterrier]

It is not the NHS which is failing you but a government systematically dismantling a treasure bestowed on the less well off among us. It will all be gone if we do nothing at the next election.

[Tiggertheterrier in reply to warwickstag]

oh couldn't agree more! I once paid for an mri scan as the nearest nhs scanner kept breaking down......it was eventually replaced, but they now seem to prefer 'hiring' scanners put into temporary buildings in car parks. Couldn't organise a bun fight in a bakery!!

[Alberta56]

Would the hospital PALS be any help?

It really is disgraceful that so many of our members have to fight and badger to get treatment. Is Respiratory uniquely bad, or are all patients subjected to this treatment?

[Tiggertheterrier in reply to Alberta56]

Hi Alberta56, waiting lists are appalling across all departments. I still haven't been seen by a specialist Respiratory Physio or been to Pulmonary Rehab since bronch was confirmed by a ct scan inApril 2021.

will be getting in touch with PALS next week. Last year I couldn't chase anything up as my Dad died in May, then my husband died in September.

[Alberta56 in reply to Tiggertheterrier]

I'm sorry you're having such a bad time at the moment. I hope 2024 will be a better year for you.

[50shadesofgrey in reply to Tiggertheterrier]

I’m looking at sorting my own pulmonary rehab, I’ve looked online and there’s a few local to me. It’s terrible how we’re not fully informed, I didn’t know anything about this help you could get until I joined this group x

[Patk1 in reply to Tiggertheterrier]

So sorry you've lost dad & hubby so close together.Lots of us have found we really have to be proactive to get help we need.pals may help.id ring local pulmonary rehab to see if can self refer. Lung physio is a must with bronchiectasis - if u haven't already,go to ALUK website & learn basics of lung clearance incl huffing technique.all the best x

[knitter]

I too used to watch the post for my hospital appointment in England .

Every day nothing …I contacted my gp as my condition was getting worse ….turned out she sent the letter to wrong hospital .

[Tiggertheterrier in reply to knitter]

my referrals now go to something called the 'pool', which means, in theory, we will be seen wherever the shortest waiting list is in either North Wales or over ththe border. Its just over complicated the system as you can't phone a consultant's secretary anymore as you may not be on his/her list!! Madness.

[Numptybrain]

It’s such a shame this is happening to you and so many. How do people manage without an NHS I wonder, perhaps we are still lucky to have it even though it has its faults and buckling with our ever growing country with minimal resources.

Wendy

[Izb1]

I am so sorry to hear you lost both your Dad and then husband last year, what a terrible time you must have had. This referral service now going into a pool is really crazy and causing more delays. Alot of people like myself dont have transport so cant get to other hospitals miles away. I suppose you could chase up the referral service direct and see if they can help. Fingers crossed you hear something soon x

[Germantara]

I myself have never been to to hospital to see a consultant or for any issue relating to my c o p d I've asked my docters keep saying no we can manage you from hear and never being to any breathing classes anything and I was diagnosed coming up 6 years

[Osha in reply to Germantara]

Sorry to disagree with your doctors but you definitely need to be referred to a respirator doctor in hospital. There’s a lot more to be gained from the experts

[Patk1 in reply to Germantara]

Insist on referral to pulmonary rehab,u will learn so much; or get local no. & see if they take self referrals.lots of videos on ALUK WEBSITE X