Missing in Action Minister for Commo... - British Lung Foun...

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Missing in Action Minister for Common Sense !

Delamere profile image

Let me just put this case before all you wise folks . Had call from respiratory nurse who had managed to source 30 doses of nebulised antibiotics for me to trial which would hopefully help to reduce need for iv antibiotics and therefore avoid 14 day stay in hospital and all that entails. Needs to be started now as l have just come out of hospital for iv so lungs are as clear as they can be giving neb antibiotics best chance to work.Brilliant light at end of tunnel. Oh no not on your Nellie. She then had memo saying all outpatient appointments were to be cancelled due to sharp rise in covid infections !!! So instead of a 30min trial and skipping home with my new best friends it's wait for next infection which will come her words then drive myself to hospital as no transport available because l am on 24/7 oxygen and need 2 people to take me which they haven't got. Another 14 days stay with all the side effects from that. Then at least another 2wks at home trying not to lose the will to live and recover well enough for the trial to be considered again !!! Utter madness. One 30min trial could save NHS money staff hours free beds up for those who desperately need them. Is it me or has Common Sense become extinct

44 Replies

That is unbelievable. It's shameful all round and makes no sense for your well-being or that of the NHS. Can you not plead with them to see sense? Not that you should have to. ☹️

My respiratory nurse and her secretary are working on it but don't hold out much hope. My GP has offered to carry out trial at surgery but apparently she is not qualified heaven help us . My understanding is that if you struggle with trial you simply administer nebulised salbutamol which is what l have at home anyway !

Let’s hope your respiratory nurse and her secretary are successful 🤞

Littlepom profile image
Littlepom in reply to Delamere

This is hilarious and insulting to the GPs! For those who impose this to presume that a GP is incapable of recognising that a drug is causing spasm whilst being administered and give a dose of nebbed salbutamol to reverse it is ridiculous.

Badbessie profile image
Badbessie in reply to Littlepom

What happens if that does not work? The GP as no specialist medications on hand. No means of intubation or venting. Bronchospasm can be life threatening very quickly.

Littlepom profile image
Littlepom in reply to Badbessie

You are talking about asthma/copd problems. Not at all the same as a bronch. Any reaction is a wheeze and small drop in sats. Pull back on the over reaction. Goodness me! Intubation for a spasm reaction to an antibiotic? My daughter refused it for me when Warwick hospital recently caused me to go into respiratory failure by puncturing my lung and she saved my life in doing so. My damaged lungs wd never have survived it.

Delamere profile image
Delamere in reply to Littlepom

I know this is what l don't understand my understanding from last trial was that it would be an immediate reaction rectified by salbutamol news given immediately problem solved why do things have to be made more complicated bronchiectasis is different in so many ways which is why you were lucky your daughter was so well informed

Littlepom profile image
Littlepom in reply to Delamere

You are so right but hey what do you know compared to those who make up this nonsense and have the power to make our lives difficult. I have been nebbing since 1982 and I have lost count of the amount of times that the 'rules' have changed. I have yet to start on my arguments with physios over the years on how and particularly when I do my clearance. We now have a bronch nurse who started to tell me this week that I do it all wrong and wanted to re time my nebbing to fit in with when the books say I should clear. I politely told her that I have been having this argument since I was old enough to refuse their bullying ( previous to that forced to spend scarce energy and time trying to clear early in the morning when there is nothing to move until at least midday ) and at 71 I had kept myself alive with only 4 episides of IV. She clamped her jaw shut poor thing, having seen the furious genie beginning to climb out of the bottle.We ARE all different. There is no one rule fits all for bronch and those of us who have learned to manage our own and know our own bodies shd be allowed and trusted to do so in the best way for us. My con knows this with me.

Common sense has long since flown away I think Delamere taking joined up thinking with it! Unbelievable and really short sighted. I hope something can quickly be sorted out for you. It just makes sense. Xxx💜

To be honest I am a little confused by the word trial. Normally on a trial you are monitored throughout to see the effects .Obviously if they are just giving you a trial with nebulizer antibiotics to see if that they prevent further infection you would to be examined pre intermediate and post course. I can understand your frustration but you are at risk if they cannot follow you up or even take you through procedures at the start.

Delamere profile image
Delamere in reply to Badbessie

Last time l had a trial they did initial one at hospital then sent me home to monitor myself saying to get in touch if l had any problems

Badbessie profile image
Badbessie in reply to Delamere

Sadly the side effects of inhaled antibiotics can vary from antibiotic to antibiotic. Spasm is only one. I have seen a patient develope heamoptysis which required urgent care. Guidelines and protocols for trials are there for a reason to ensure safety. If they ignored the trial gave the antibiotics and something went wrong who would be responsible?

Littlepom profile image
Littlepom in reply to Badbessie

I had a major haemoptisis last nov caused by an oral heart drug. Although blue lighted to hispital had no treatment. They just waited for it to stop.

Littlepom profile image
Littlepom in reply to Badbessie

The trial is to establish whether the drug is going to cause the lungs to spasm. Longer furious explanation below.

I cannot think of a polite response to this. The words that came to mind were ones I only normally use in front of my husband.

Personally I have maintained for many years now that common sense has been genetically selected from the human race. . . ! Sorry that you have been put into such a ridiculous position!

I sometimes wonder if some medical personnel actually understand what it is to be constantly ill. 🤔

Take care

Delamere profile image
Delamere in reply to TomTitTot

I have often wondered that myself

It makes me steam! Whoever invented this trial doesn't live in the real world of nebulusing antibiotics. A violent reaction to the first dose is so rare and I have never heard of it happening to anyone. If it does happen they give salbutamol to reverse any spasm of the airways. A drug which most of us nebulise before the antibiotic anyway. An adverse reaction ( if it is going to happen) usually comes on gradually after a week to ten days and as patients who know our bodies we recognise tightness and wheeziness and stop the drug. In these times and your condition the chance to have the benefit of the drug is obviously the most important thing. But no! The rules say there must be a trial, even if that proves impossible right now and the mutton heads don't trust us to look after ourselves. (and don't start me on the pantomime when I had a trial of meropenem 2 wks ago and took my own hi tech nebuliser!)Excuse me whilst I go and stick pins in my eyes.

Delamere profile image
Delamere in reply to Littlepom

Got any spare pins 📌 x

Littlepom profile image
Littlepom in reply to Delamere

🤣

Alberta56 profile image
Alberta56 in reply to Littlepom

I wish the professionals had half, even a quarter, of your knowledge, Littlepom.

I hope that some solution that is in your favour can be found. You have had enough stress and upset already.

How unbelievably maddening! Is there anyone you can appeal to? It is soooo utterly crazy and illogical.So sorry.

K xx

Insurance ?

Unbelievably ridiculous!

That’s so frustrating for you.It doesn’t make any sense,I’m thinking of you x

You need publicityfrom someone who needs a new line. Everyone in NHS is so scared of doing wrong so just step back. But even if it worked it would take time . Medical journalists? Even local paper?So sorry cannot help.

Delamere profile image
Delamere in reply to Jaybird19

Just knowing that there are people out there who understand really helps. Especially when you get comments like what makes you so special xx

Surprised that with all the righteous indignation on here no one has suggested contacting PALS at the hospital! They are best placed to advocate for you and may well be able to help.

Delamere profile image
Delamere in reply to Bevvy

Will give them a try thankyou

Damon1864 profile image
Damon1864Volunteer

That's awful commons sense would tell them to reconsider, as you say it would free up beds save money. I hope they reconsider. Have a good day and take care 😊 Bernadette and Jack 🐕 xxxxxx

Delamere profile image
Delamere in reply to Damon1864

Thank you so much for taking the time to reply xx

Hi there Delamere and i really feel how upset and demoralised you are what with the totally ridiculous situation the NHS has put you in. It's a shame we're not allowed to encourage the Resp Nurse to overlook her last minute instructions and just let you collect the neb a/bio's ☹️. Hoping you manage to get something sorted. 🐿🥜

Thankyou believe me l really wanted to beg her but she was feeling so bad l couldn't put any more pressure on her. The poor nurses who see patients face to face are really having a hard time of it x

I can understand your frustration and anger, but I can also understand why the hospital has had to cancel because of the sharp rise in covid. You are being kept safe. I’m not sure why you need two people to transport you? I am oxygen 24/7 and patient transport just provides a driver. Good luck.

Delamere profile image
Delamere in reply to Millyboo710

Thank you for taking the time to reply. The policy about transporting patients who require oxygen while travelling in Grampian changed. This is a recent change which was made after a patient was sent home on hospital transport with an empty oxygen cylinder. Now patients need to be escorted by grade 5 staff or transported by ambulance l also understand that people are trying to keep me safe. However a 30 min one to one appointment feels safer to me than 14 days in a hospital ward with all the different contacts that involves without the deterioration in my overall health which is a consequence of this. Thank you for your best wishes x

Millyboo710 profile image
Millyboo710 in reply to Delamere

Oh goodness! It must be different in different health authorities. That’s shocking. I suppose your hospital has to have a blanket policy or other patients would make the same case as you are. Very frustrating. x

Delamere profile image
Delamere in reply to Millyboo710

It certainly is !! x

No its not you Delamere, common sense does seem to have got lost these days. Heres another one I got a letter to ring radioligy for an Xray on my replacement joint . I duly rang and booked , a letter then came asking to ring again and confirm I am attending. At which stage she put a note on my records to say I am attending. Never heard of the doctor who has ordered it. So thats another example of money waste on routine follow up which could be spent elsewhere on more urgent need. Like in my case I need my chest investigated due to worsening symptoms but no chance. Of course in my case I would also like an orthopeadic reveiw as to the cause of the pain that has not been resolved by major joinrt replacement last year and reqiures me to still walk with a crutch or walking stick. Every best wish and good luck with getting the best treatment .

Delamere profile image
Delamere in reply to katieoxo60

Thankyou .Your words are so true. I dead to think how many of our valuable NHS resources have been wasted with never ending repetitive paper work.

Yes common sense does seem to have little influence over decision making when it applies to individuals. I do hope that your nurse manages to sort this for you and that it doesn’t get you down too much and interfere with the work you are already doing to get over that last hospital stay.

Keep moving, find a mirror to give yourself a smile of encouragement and take a breath. Just to reassure yourself that some things are still O.K.

I will send out vibes for common sense to prevail.

Grace

Thankyou so much Grace for your kind words it means a lot.Had a good chat with myself yesterday and told me to get big girl pants out once more (going to need a new pair soon) So will battle on have to send sputum sample in on Monday but it's not looking good still on wards and upwards x

Id email the consultant,as its a legal document so they usually respond.Either that or ring tomoz.ell them u have thought it over & arent happy about this.its your lungs being exposed to another damaging infection.good luck Delamere xx

Its extinct!

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