Hi l very rarely post but l am so low which is not like me. Finally gave in and was admitted to hospital as rescue pack not w working . It has been a catastrophe. I was initially refused my prednisone which l was reducing was not given morning salbutamol or saline news which ment more breathing and clearing problems was refused ambulant oxygen so have had to try to walk to ward toilet without. No chest physio given. I have tried to explain that to beat bronchiectasis you have to keep airways clear but they seem to have no idea. They are not sure if they have got right antibiotics. I feel so helpless l usually manage my condition so well and now for the first time l feel like giving in. Sorry to be a misery just had to let it out hope this is acceptable
Desperate : Hi l very rarely post but l... - Lung Conditions C...
Desperate
Oh dear it's sounds like you are really being put through the mill. I honestly don't know what to suggest, but I hope they get things sorted four you soon. Please let us know how you are doing. Have a good night and take care 😊 Bernadette and Jack 🐕 and
Yes it's acceptable! I think I would have either hit the roof with rage or been in floods of tears by now if I was you! I don't know what to suggest either - could your husband mediate for you - sounds to me like you need someone to put their foot down in your corner. Best wishes x
Thankyou Annie31. I am usually a very strong person l was a carer for 40 years and was well known for taking nonsense from nobody. However it is so different when you are dependent on others for your health. My poor husband had difficulty coping with me being poorly thankfully it doesn't happen very often. I have written a list of what l want to achieve from my stay in hospital and will discuss it with my consultant when l next see them .l will try again for physio support while l am here as l need help to clear my chest at the moment and we all know how important that is stay safe
Having read the other answers you have since received, I am in absolute agreement with them. I tend to be a little too much of a standback in these sort of situations and it does no good at all. I think it's a disgrace that you are being treated like this. Are you on a lung ward or just a general medical ward as this could be the reason why you are not getting the treatment you need?
Hi and welcome to the forum
When I have read your post a few things hit my mind to suggest.
1. Please run a diary in writing for clinicians to have a look at. Self care and management are most appreciated in nowadays by practitioners and health professionals. We never get unless we ask-remember?
2. Bullet point your own Qns in written notes. It is very useful to refer to them at any point later. Especially, when away from home and close circle is still adapting your new conditions and vulnerability. Notes are great to Re read when we are less emotional, however, bullet points rather essential so to speak.
3. Communication is a key. Whoever it is we talk to, please express your needs crystal clear where possible. Outcome is amazing by doing so.
Wishing you all the best in copings.
Be well.
Tanya
So sorry you are going through this Delamere. I would requested both consultation with respiratory consultant and respiratory physio. You be given oxygen unless your blood oxygen is low, but you should be given medication to help you clear the mucus and there is no reason why a sample cannot be tested while in the hospital. Hope you will see some improvement in your care needs, if not then request consultation with PALS at the hospital.
Hi Delamere you have every right to be miserable I would be screaming at everyone by now. I think you need to ask to speak to your consultant and calmly explain how you manage your health problems at home and keep yourself safe. Explain to him what’s going on since you have been admitted and it’s having a detrimental effect on your physical and mental health if that fails contact pals in your hospital and complain. Please don’t give up you know what’s best for you concentrate on demanding your rights to get well enough to get home. I will follow your thread and will be willing you on xx
You are going through a tough time, others have given good advise I would also speak to the ward sister and get your point across. Not easy I know
My last brief stay in Hosp was awful, 17 hours in a and e I was so cold which is unlike me and kept saying I was cold nothing was done til the day shift came on! Despite asking no hot drink again til day staff came on, awful. I did put a complaint in to PALs if nothing else made me feel better. This is the same Hosp which is being highlighted on a and e after dark!
I hope you feel better soon
Love and hugs
J
Sorry to hear you having such a rough time. Hearing this just makes me even more grateful to my gp surgery. Don’t get me wrong they can be a pain in the neck BUT when I am very unwell they do everything they can to avoid me being admitted to hospital! This means that I have appointments every 2-3 days until am more stable. Am certain that this means I will see an actual doctor more than if admitted to hospital.I really think you must speak with PALS at the hospital. They will be able to advocate for you and support you.
Wish you better soon.
I cannot believe that you are being treated like this. Are you not on a respiratory ward and have you not seen the respiratory team. Every time I have been on a resp ward for IV they have tried to throw saline and ventolin nebs at me 3 times each day even though with bronch I only need it once.Here again we have a respiratory patient who knows more than the nerds not looking after her.
Is your consultant at this hospital? If so DEMAND to see them on pain of emailing the head of the Trust directly. If not. Phone them and tell them what is happening to you. The doctors there should be liaising with your con about your treatment as those at Warwick hospital did with mine at Bham when I was recently admitted with a haemorrhage.
Quite frankly there is no point in your being there. They should at least have sputum tested to decide on the antibiotic and any hospital has a record of your usual meds or can easily get it from your GP or consultant.
If it was me I would take the line out, discharge myself by walking out and get in contact with my consultant as soon as I got home. Sometimes, however bad we feel we have to give them a good shake in our own interests.
Believe me if l had my oxygen with me l would have it is hard to storm out when you cant make it further than the end of the bed which is where the oxygen tube reaches. I have asked for a meeting in the morning. If l do not get the support l need l will phone home and get my husband to put my oxygen in the car and come and get me all l want from them is a supply of the correct if antibiotics and l will do it myself .This has really highlighted the ignorance surrounding bronchiectasis. When l am more stable l am going to write a report and forward it to pals is there anyone else you think l should send a copy to ?
Your consultant, your MP. Believe me you just reaffirm my despair at the ignorance and dire treatment of bronchiectasis. Even when I was in Warwick recently they insisted on giving me tazocin even though I told them that it had not worked the last time and gave me a rash. After two days bleeding I was too weak to argue. When I got home I was more breathless than ever and have just finished two weeks oral cipro. Hopefully beginning to feel more myself. I had a scan at bham yesterday because my con there wants to look for the cause of the bleed. She said to me on the phone ‘ I bet that tazocin did nothing’. It is very very scary. Mostly because these people speak to you with an attitude that they know things about your condition that you cannot possibly when actually they are talking through their a...s because they know nothing.
I was going to suggest that you get somebody to bring your oxygen. PALS are useless. We really need a big media campaign. However, unlike cystic fibrosis where ‘celebrities’ are only too happy to jump on the band wagon of their relatives who have it, bronchiectasis ( the same condition) is ignored by them because it is not thought to be associated with children and somehow ‘not nice’. Now you have got me going.
Do let me know how your meeting goes. If you are not going to get what you want go home and pester your consultant.
Will do we don't ask much just to be listened to would be a start.
You bet. Good luck.xx
I can be no help to Delamere since I don’t have Bronchiectasis but I’m curious as to why such ignorance about it exists. I’ve read many other posts from people despairing of their treatment or lack thereof. Is it very rare? Do I only think it’s common because this is a lung site so there are lots with it on here? Delamere’s experience is frightening. Standing up for yourself is great if you can stand up and if you’ve got the puff to argue.
Thankyou for your message. You are right about finding the puff
Your very simple question ‘why does such ignorance exist’, requires a long and complicated answer.Going way way back, children who developed it in the extensive form which some of us ‘lifers’ have it, tended to die due to a total lack of any effective drugs, namely antibiotics, to combat the overwhelming infections or knowledge of how to manage it on a daily basis. Children with cystic fibrosis were in the same position.
Other than that, when bronchiectasis was given a name it was largely presumed to be a disease of the old, brought about by a lifetime of infections. As a teenager I was told that ‘this disease is dying out as the older population dies off and younger people won’t get it due to antibiotics being available for chest infections’
Ha Ha Ha
How wrong can you get! More adults and children are being duagnosed with bronchiectasis than ever before.
Some of us who developed it in childhood through whooping cough, measles, or in my case, no known cause of six bouts of pneumonia before three years of age were lucky enough to survive. I had the good fortune for my parents to be told of a radical scottish doctor in Leicester who, having cleared England of TB, had turned his attention to this mystery condition, ignored by doctors because it baffled them.
At age six he started me on the management and treatment which basically bronchs have today. Clearance, exercise and penicillin inhaled through oxygen for six years and the new oral antibiotics. My GP was hauled up before the local committee because of the cost of this because they had never heard of it. He fought my corner and went on prescribing.
Nationally this form of treatment didn’t become accepted until a young doctor in Birmingham, Robert Stockley, became obsessed by the complete lack of effective management of bronch in the 1970s. He began researching, started a specialised bronch clinic at Burmingham and most importantly, spread the word amongst the medical establishment and internationally. Until 1986 when he gave a paper in Las Vegas, bronchiectasis was not accepted in the US as a condition in itself but described as cystic lungs. Due to his efforts we now have some excellent bronch specialists in the UK and worldwide and ongoing research projects.
Unfortunately, on the next level down widespread ignorance still exists ( when I coughed during my scan this week I was asked ‘ are you a smoker?’) and the training of general respiratory consultants and GPs is woefully inadequate.
I’m hoping that you are still with me - you did ask!
In the early 1970s a survey of lung conditions came up with a huge number of people with emphesyma and chronic bronchitis which had been put under the umbrella of copd in the US during the 1960s. This was due to the legacy of a population which contained many smokers plus some very bad environmental working conditions.Comparatively speaking, bronch was very rare, ( we know now due to vast under and wrong diagnosis), along with the other lesser known lung conditions.
When the Blair government was in power they used these numbers as the basis of a programne for copd sufferers. Widely publicised and endowed with cast amounts of money. The cynical could say, as a way of attracting voters. As money was poured into this, bronchiectasis, along with other conditions was simply pushed aside.
Cystic fibrosis patients attracted an enormous amount of money through high profile support and an influential organisation. Good for them but unfortunately they have always refused to share research with non cystic fibrosis bronchiectasis researchers and although we trial drugs for them NICE resolutely refuse to allow them for us, even though we know that they work - dramatically.
Through forums like this, patients are learning more about their condition than most of the medics whom they come up against and are slowly demanding to be treated by the few who are experts in the field.
Until training in bronch and public awareness is boosted considerably, we will continue to suffer this discrimination and failure to address our needs.
In the meantime we beat our fists on the wall in utter frustration and try to support each other.
Thankyou this is information which really helps. Every time l see a different dr they ask me if l smoke l have never smoked it makes me want to scream ! Still no luck with physio but l am going to try again this morning may be time for a hissy fit !!
Get your husband to bring your device in and don’t give it to them. I take my own drugs in as well and resolutely refuse to surrender anything. Fingers crossed you get a physio. They are probably all with the covid patients and therefore can’t come to a covid free ward.
Hi,Thank you for that, very interesting, I’ve learned something this morning! It really seems to be a Cinderella condition. Why are doctors and nurses always so defensive of their lack of knowledge? No one would judge them harshly for saying “ah, I don’t know much about this, tell me your history/experience.” Or “I don’t know but I’ll find someone who does”. Instead they confiscate meds and devices through ignorance. Crazy.
When you’re in hospital you feel very vulnerable for several reasons, the illness that put you there, being surrounded by strangers, being in bed, even just wearing your night clothes puts you at a disadvantage and making a fuss in those circumstances is not easy. We all need to lose our inbuilt deference to medics. Yes, they often do know what’s best, they have wide knowledge and they deserve our respect but not our unquestioning obedience.
Everything you say is so true. I am terrified of having another bleed and being catapulted back into what you describe. All power and control is taken from you.
So very true. It is very hard to get them to understand you are not criticising them just trying to explain your condition and how you manage it every day
Brilliant Littlepom, couldn't agree more. Thank you for banging the drum for bronchs, as you say there's little or no public awareness and no high profile public figures publicizing it.
You’ve had some great replies Delamere and I really hope you get help soon. The hospital should be doing all they can to help you not make things worse. I can only assume they are overwhelmed by covid.
Stay firm and strong. Thinking of you xxx
Thankyou. They just don't seem to understand bronchiectasis and the need for chest clearance .
They never do. Can you take yourself to the bathroom and spend twenty minutes doing it there yourself ? I always do that. I hate physios fiddling with me.
Not at the moment they winter give me ambulant oxygen so by the time l have made it to the bathroom l am good for nothing. Really needed physio at the moment as ribs very sore. Also had real issues when they decreased my oxygen input to 3ltres instead of my prescribed 4 they will not be doing that again
What a mess. Yes I can understand why you need a physio. Can your husband do it if you go home? Not using oxygen I don’t know how you do the cycle of breathing and expelling the mucus. It must be very difficult.
No bless him he is not very hands on .vl did have it down to a fine art. One of the reasons l agreed to be admitted this time was because l thought l would get help with my chest clearance.
Could I suggest you write to Dr Michael Moseley care of the BBC ? He doesn’t actually work for them full time now but he investigates and writes about all sorts of conditions. He may be able to get your condition some publicity and understanding . Just a thought . Hope you are out of hospital soon x
Thankyou
This is horrendous. You’re quite right to share your woes with us. A trouble shared might not be a trouble halved in this instance but at least you can know we’re all rooting for you. Sending you lots of good wishes and sheepy hugs 🐑🐑🐑🐑🐑🐑
Thankyou
Hi Hun, So Sorry your going through all this, Reading all the Replies everyone is so Right. I too am on Oxygen 24/7 with Nebulisers 3 times a Day I can decrease the Oxygen with Nebs, though I am an 02 Retainer. I have Palliative care nowadays, and if I need to phone them, they act immediately for me, So I Know I am very Lucky. I cannot understand them not giving you Oxygen, I always had it in Hospital, like you, Couldn't make it to the Loo without it. I know these days every " Bad Decision" is blamed on COVID, when as a Lung Patient, you should be treated immediately especially when You know your own Meds & Your Body. I wish you the Best of Luck, maybe Your Hubby could Complain for you To the Nurse in Charge? Let us know how you get on Hun. Sending Lots of Love. Carolina. XXX
Do ask for a commode if you are too breathless to go to the toilet,I know from personal experience how hot the toilets can be inside when you shut the door after struggling to get there and becoming more out of breath in the process.I remember also finding it a monumental effort to even pull out a paper towel or loo paper out of the dispensers which are by no means user friendly.
Rest up and do ask for what you need,I hope you get to see a consultant soon as they tend to listen to how you manage your condition at home.
I am unsure how long you have been in hospital but maybe still on an assessment ward ? not a respiratory ward and you should get more specialist nursing there.You should get physio soon.
I do also understand that it can be difficult asking for help for yourself when you are used to giving help to another.I still find it difficult but there are times when you need to be kind to yourself and this is one of them.Take it easy and i'm sure things will fall into place soon in your unfamiliar surroundings,I hope you feel better soon and get any help you need. xx
Oh what a mess everything is in at many hospitals with so much of the resources going to COVID patients. Please tell the doctor exactly what you’ve just mentioned and I would be repeating it to every ward sister/ manager on every shift. Very important things are being missed/ ignored at the moment. Do ask the next doctor you see if you can have your sputum tested so at least you can get the right abs.
Good luck.
Thankyou .
Feeling for you xx
I feel your frustration as I too had to try and sort out medcation wasn't prescribed correctly. If you feel strong enough ask to speak to Ward nursing Manager and if they don't help there are other people to contact. I saw posters on the ward walls I was on with names of staff like Clinical Excellence manager with a no. you ring to ask to see. Your husband could help ?I actually has a meltdown on my ward as was opposite confused patients in 2 different wards. They didnt want me to leave the ward to see my sister through a window and I just lost it ranting about how although I knew the ladies couldn't help their Dementia etc but having night after night of watching them try to get out of bed which ended up with me calling for the nurses before they fell.Not forgeting lady who got into bed with me regularly ( amusing as anecdotes bu tnot at the time )
. I never raise my usually but had had enough and sleep deprived. They relented to shut me up.
So please ask
Best Wishes
From Another Hospital Survivor
Hattie
I have just had the experience of being in a ward with dementia patients. So wrong for them, for us, especially when they tried to get into our beds, and for the poor nurses who had no time to give the other patients what they needed.
yes it was so sad as one lady was i believe had cancer secondaries in the brain. She would shout "Harriet can you help me" all night. She was 5ft 11 and I'm only small. The staff were unable to sit by her all night ( one night only one member of staff turned up for the whole ward 34 beds and Dialysis Unit till they moved staff from other wards. I waited 2 and half hrs for pain relief and was just sobbing on the bed by then) Back to the lady she continued to shout and try to get over the bed rails. In the end i took her to the toilet and seemed to become an unofficial member of staff.
The previous occupant of that bed was the lady I caught Covid from. A little 99yr old asian lady who developed and coughed incessantly over one night including spitting on the floor ( i gave her a box of tissues ) she also shouted out and tried to get out of bed over the bed rails ... Hattie buzzing for nurses time and time again. So they isolate her in side room in the morning and do C19 test and yes you guessed it she finally succeeded climbed out of bed and hit the floor face 1st breaking her nose !
They were supposed to be very carefully monitoring my fluid intake and urine output but after a day of leaving bedpans for them to measure and them still being there 12 hrs later and the Drs thought I hadnt passed any urine all day so told them give me the measuring jug that way at least I knew my charts were correct . If I hadn't been on the ball the Dr would have adjusted my diuretic and dehydrated me . There was 2.5 litres of wee sat in the loo not nice for the other ladies.
Saying all that the staff really were doing their best but I shiver to think what it's like now
Oh you are so right to feel that they are not doing enough for you and trying to get heard as you know what you need, being a bronchiectasis sufferer can really understand that being in hospital they are running around not knowing what is best for you going forward. I sneaked my clearance device into my wash bag to do it myself otherwise they locked it in the meds drawer.please don't give up on getting well for the future with your new doggy xxx
Well done you l wish l had thought of that. Been 3 days now and still haven't seen physio for help with chest clearance although they have been on the ward several times. Still today is another day. Thankyou for replying
Morning Delamere
Can you or someone not make direct contact with your consultant/secretary, I would ring/email and explain where you are and briefly explain how badly you are struggling and why and ask for their help and input.
Hope you can get this sorted very soon.
Of course it's acceptable, that's what this site is about, support. I'm so sorry to hear you going through such an awful time. I hope they soon realise and give you the correct medication, physio etc and get you home pronto, where you yourself can manage better than they are. Sending get well hugs.Trish
Oh dear, I am so sorry to read your post. As a fellow bilateral bronchie I totally understand, is it possible to see your own consultant for help? It is such a specialised subject, I do hope you get support and especially your much needed prendosoline x
Good Morning Delamere, I sincerely hope that things have gotten better and that explanations for treatment or should I say lack of, have been provided and rectified. I do not have your condition , but I struggle Big Time with the sticky stuff, I can only imagine what you go through. Best wishes xx
So sorry to hear of your dreadful experience in hospital. I used to be a complaints and litigation manager for a local NHS trust years ago. In our trust all written complaints had to be answered by the chief executive in writing with an acknowledgement within two days and a full response within 28 days, however once the complaint was received an investigation was commenced immediately. If complainants were unhappy with the reply they could ask for an independent review. I have no idea of the protocols now but would suggest you write to the Chief Executive of the trust and copy to the medical director and ask for a copy of how to make a formal complaint. PALS should be able to chase immediately but if any delay with how quickly they respond put it in writing to Chief executive. I hope you get this sorted out as fast as possible. However if you can contact your consultant, by phone if his ward rounds are due for a day or two, that's probably a good starting point. Best wishes
Sorry, should be if your consultant ward rounds aren't due for a day or two.
So sorry to hear you’re going through this My husband was in hospital earlier this year and it wasn’t the best experience. The staff were all very kind and we re eternally grateful that they pulled him back from the brink but they had no idea of his usual routine and self care plan and of course there was the usual lack of time . Hopefully you will be well and home soon , in the meantime I see you’ve been given some really good advice on other posts that I hope will help and make you feel better. Chin up and good luck xxx
I am so sorry to hear of your plight. Have you anyone else to fight your corner? You have more than enough to deal with. Writing it all down is a good idea if you are up to it...PALS is the organisation in hospitals to complain to. You just need someone to listen & take action. I assume they have taken blood & put a sputum sample in... Really hope things improve soon! Much love. X
I have nothing to add to what has already been said except to say that my thoughts are with you at this very distressing time. As I have said before, it is very hard to fight one's own corner when feeling so unwell and really shouldn't be necessary in today's NHS but sadly it all too often is. Sending you love and best wishes for things to improve soon. xx
Sounds like an awful time for you so no need to apologise as we all need to rant somewhere. Hope they sort you soon and you are put on the right meds x Anita
Sorry to hear you are suffering in hospital Delamere you would think they would know more about bronchiectasis. I would get your oxygen sorted out as quick as possible if it is on prescription you need it. Next time the consultant comes around tell him. I do hope you get this sorted out soon. Wish you a speedy recovery x
Very distressing. It’s also incredibly difficult to put your point across when you are struggling to breath. I despair for you. Does your husband have access to any correspondence from your respiratory consultant re: diagnosis and treatment plan to reaffirm how you should be treated? Or can he contact your respiratory consultant via their secretary to explain the situation so that they can intervene? When you are so poorly and struggling, the need for an advocate is essential to ensure you get the care that you need in a timely way. Some people have no idea what it’s like to fight for their breath. I hope you get the care you deserve and recover quickly
Poor old you. It sounds as if you really have fallen into the wrong hands. I hope they will start taking notice of you since you obviously know more than they do. The more knowledgeable people on this forum have given you some excellent advice. I hope things improve very soon.
Just wishing you strength to make use of all the good advice sent to you. I hope that you are able to get the attention and will to listen to you and you are well enough to go home.
Omg Delamere, no wonder you feel desperate, being treated so badly. I have had to shout quite a few times to get my mum the correct medicine/treatment when she was alive and afraid I became quite the sergeant major. I do think sometimes it is necessary before someone takes notice, sad times, but you need help and proper care. I do hope you get it x
Sorry to hear you are so low. I completely understand (I've experienced your issue by having to be the champion for my mum over the years and stay with her every day in hospital to make sure she does her physio and gets all the treatment she needs.)
A suggestion for when you get home for any future A&E need that I've found has worked, even when A&E initially tells me they are fine and don't need me to explain:
1) I have (many copies to hand out) of one sheet paper with a simple table/frame outlining easily outlining
a) all her medicines and times of medication
b) physio instructions and time (Active cycle of breathing )
c) any drugs that give side effects (or allergies)
d) Brief medical history - and any mobility things e.g. needs help walking, due to breathlessness etc. AND highlighting important things
2) Then I also attach something that LittlePom recommended: A recent NICE or BLF Antibiotics list with the duration needed - they often only wanted to give 5 days of antibiotics so this list shows you know a lot about your condition - I've even had junior doctors looking up the doses on the Nice website themselves to update their consultants )
Many nurses get Bronchiectasis mixed up with Bronchitis or can't pronounce it so by the time they've gone through all the list they and the doctors usually ask me to stay with my mum to help explain her situation and needs. Drs clearly make the decisions and diagnose (as it could be something other than a Bronch exacerbation and they are the highly qualified professionals but them knowing her needs/experiences has helped a lot in the past.
I hope you don't need to go in again (or soon) but this has helped my mum and hopefully help you transfer information clearly to them (and in writing so that people who haven't heard you say these things will see it in the notes.)
All the best - I hope you have the energy to be your own champion at this time. As a carer for so long you really deserve to have someone to help you get to the toilet etc. (I've always found it odd how patients are left to take care of themselves and drag themselves around, although they are really over worked at the moment. )
I've never had your experience, but want you to know my thoughts and prayers are with you to be home and comfortable as soon as possible.
Good luck, jct1
Do u have a pulmonary dr who can help with meds?? GPS don’t have that skill level to help..ask for a respiratory dr in Hosp..try to clear kungs the best u can for now..missing saline for a few days shouldn’t make a huge difference for now..can u get someone to bring your nebulizer and saline and hopefully you have an aeribika
Hi Delamere hope things will improve soon. Make your voice heard in a calm way.
Wow, so sorry you are experiencing this. Is it possible to request a meeting with a pulmonary doctor or as a last resort a hospital administrator. Wishing you better results. Stay strong 🐞
So hope you get help and get better . Just one of many wishing you betterX Helen
Thankyou x
Hi delamere.How r u doing today? I hope the situation has improved
Just a thought - ru on mau ward waiting for bed on respiratory x
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