My new motto is what can go wrong will go wrong ! Finally got all clear to go home after last IV on Thursday. Too late to go home Thursday evening. Not allowed to be transported by volunteers any more as apparently l need grade 5 medical staff to escort me as l am on 24/7 oxygen !!! So no staff available so no transport. Hubby is not supposed to be driving as he is waiting for Knee opp delayed by covid and can hardly walk. SO desperate measures he was going drive in early Friday morning and then lvwould drive back problem solved. Consultant was to write discharge letter and all meds would be ready Thursday evening so l could leave early. Asked night staff for letter and meds they couldn't find them ! Asked again Friday morning still no sign. Had to leave when hubby came or stay in until Monday!!! So left asking them to sort it out when Dr came on duty and l would pick them up Saturday morning. Tried phoning Friday afternoon and Saturday morning no answer. Drove my self to hospital l needed my meds. Meds were on ward but no discharge letter apparently Consultant still hadn't done it 24hrs later So l am now home with no discharge letter therefore no information for gp about on going treatment. Yet again l feel that l am totally on my own to manage my condition as best l can. All my hospital stay resulted in was total loss of confidence in medical team terrible swollen ankles constipation bruising and skin tears from being given too strong a dose of blood thiners. Build up of mucus from being unable to do chest clearance. Lack of fresh air minor l know but so important to me. A feeling that this is never worth it. Have a real fear of chest infection coming straight back without follow up treatment. Last but by no means least reduction in mobility probably caused by being tethered to the bed by a 4ft piece of tubing for 9 days no ambulant oxygen allowed on wards Sorry l know l have gone on and on they very nearly broke me this time.
Paradise regained (eventually) - Lung Conditions C...
Paradise regained (eventually)
What an awful experience for you Delamere. It really rocks your faith in the medical profession doesn’t it. They bang on about patients being mobile, eating well etc. but it just doesn’t happen. I’m so sorry you’ve had to go through this and hope against hope that the meds and discharge letter are forthcoming. I’d get in touch with PALS as it’s just not good enough. Xxxxx💜
What a nightmare. The whole thing is just a catalogue of errors. A series of mistakes, and indifference at best. I’m so glad you’re home. Sending you lots of sheepy hugs 🐑🐑🐑🐑🐑🐑
Thankyou your Sheepy hugs have kept me going x
I have followed your story but not always replied to each post. I am glad to know that you are home after your nightmare experience of being in hospital. Maybe if you contact you GP he/she will be able to contact the consultant or his secretary with regard to your ongoing treatment. I sincerely hope that you never have to return to the hospital you were in. The lack of care you received was appalling and, as sassy said, a complaint to PALS would be in order. Sending you my very best wishes xxx
Thankyou. I have contacted my GP about ongoing treatment and l have also emailed my respiratory team who are based in another hospital. My last stay in this hospital resulted in my GP putting in a complaint about my treatment which l then discussed with their director of nursing who assured me it would not happen again. It looks like a complaint to PALS is the only option left to me. Thankyou again for your support and advice
You have already been pro active but it's such a pity that you have had such a battle on your hands when so unwell.Lots of love Carole xx
You should email your experience to MP Javid and ask him if he thinks he would like to continue being the face for his lot!....or better still send it to the media! You just wouldn't believe they've got peoples lives in their hands!
It is so tempting to go to the local paper but when l think of how hard the staff on the ward work it feels like stabbing them in the back x
I would have been a lot less restrained in my description of such a catalogue of downright lack of care! I am so pleased you are at home, even if you are having to fend for yourself. Please make sure you get in touch with PALS, maybe when you feel a little stronger ;)Take lots of care, Laurie xx
Oh goodness Delamere, such an ordeal you have been through and still dealing with, not good at all, the best of it being you are now back home, so next best is to get those meds, keep chasing up the hospital or get any one will to chase it for you. A nightmare when trying to sort things and no one answers the phone.
I am wishing you a day of discovery where everything begins to unfold in your favour. For now, sit back with a cup of tea and feet up relax and then having another go at achieving all that you need.
My own motto is - everything is working out perfectly 
xox
🌺💖🍎🍇🍭🍫🍰🍮
I'm speechless! My heart goes out to you!😱 So scary and the only good thing to come out of this debacle is that you're back home with those who do care about you! My very best wishes to you xc
What an absolute shambles as others have said put in a complaint to PALS the sort of treatment you’ve had is unacceptable total lack of care.
Pleased you are home back with your loved ones
J
It sounds to have gone from bad to worse but at least you are now home, safely. No one should have to put up with the treatment you experienced. Does make you wonder what happened to the promise of the previous complaint you made!! I live in Scotland, as I think you do, and spent 11 days back in June, for the same reason as you, IV therapy, but I was allowed to take my ambulatory oxygen in, otherwise i couldn't have made it to the bathroom. I can't understand your hospital's reasoning? But heyho Delamere, I hope you get some answers to your complaints. Wishing you all the best for the outcome. Take care and hope your hubby gets word soon for his op. xxx😊
Thankyou .Yes l do live in Scotland and until my last 2 hospital visits have felt very supported by the health service. My GP and respiratory team have both been in touch and are looking into my treatment during my latest stay. I was told for health and safety reasons l was not allowed to have a cylinder on the ward. Who knows who makes these rules up. Thankyou for taking the time to reply
Oh that has all been so difficult for you. The deconditioning that comes in from a time like that takes up such a lot of energy to recover it. It’s so sad that we get the lip service to the value of maintaining our own well-being yet it’s undermined like you describe. I am glad that you are home and you certainly don’t seem to accept that things going wrong are going to stop you despite your new motto .Or has that already been superseded?
Remember to rest with your feet up between your activities.
Recover well.
Grace
It has been replaced with what doesn't kill you cures you !! Have spent time in my garden giving myself a good talking to and the wheels are back on the wagon. Thankyou for your support
What a shambles! I’m so sorry for you. I hope your Dr is sent/emailed that discharge letter ASAP. You must be so wound up I hope your able to relax a bit by now. 🍀🦋
Have been lucky enough to spend some time in my beautiful garden on the mend now thanks
You have been well and truly messed about. I hope things get better from now on. xxxxx
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