Flogging a dead horse... when will they admit defeat?

[EmmaF91]

A really crappy Easter weekend... now feeling really frustrated (and very teary!). I’m fed up of being ignored by docs (and ashamed for feeling that way cause I know I was due a ‘bad’ admission so I feel guilty for feeling so upset).

To sum it up, I ended up in a&e last Thursday (17 days after my last discharge with a slow spiral in between managed at home but keeping ANs and GP in the loop) after calling ambo when PF hit 28% (180/630) and sats started to drop. There I got nebs nebs and more nebs until I finally got reviewed by a medic (a few hours after arrival) where I educated an F1 what I needed. After he royally mucked up 1 ABG (hit the tendon/nerve which still hurts now) and failed another he gave up and went for his senior, who supported ‘my’ treatment plan of a mag bag and 200 hydrocortisone (sans ABG! VBG was fine) - given in resus solely due to a lack of cardiac monitors/trolleys in majors 😅. Knowing I have a maintaining issue they then offered to prescribe a couple of days of hydrocortisone therapy, but hoping that the a&e treatment would be enough to stabilise (it usually is) and wanting to be out ASAP I turned it down. Something I deeply regret now!

In for the long weekend, understandably they’re working on reduced staffing levels, and have too many patients so contact time is hard to get... saw 1 con on Friday who said I had a forced expiratory wheeze (hadn’t had a wheeze the entire time I was in a&e) so reg nebs and review over weekend. Whilst hydro was in my system my PF increased and maintained, and I felt positive for release Sun/Mon. The hydro effect was over by Friday night. Since then I have been bouncing constantly... start to drop 3hrs after neb, if neb is ‘late’ (ie 6hrs med rounds rather than 4hr) I’m in mid red. With the mag still in my system (benefits usually last a week for me) my reversibility is excellent, so I’m bouncing from as low as 210 (33%) to as high as 550 (87%) (biggest change was 39% to 79%) but it doesn’t last. Sat/Sun I also had hayfever issues causing my lips to swell and then giving me hives (solved with additional antihistamines).

Sunday see a junior wanting to take me off reg nebs to just PRN... told him he could but wouldn’t make a difference as currently need them basically 4hrly, he agreed to leave me on them and get reviewed Mon.

Yesterday I got transferred from the resp ward to obs and gynae (emergency transfer), meaning I’m with people who don’t ‘know’ asthma, with patients without resp conditions (so don’t understand spray/window issues) and I’m easily forgotten about by the resp team. Despite still having issues on reg nebs the o&g CH1 I saw today wanted to send me home (I downright refused! Treatment needs escalating not me turfed out). He agrees to get resp reg to review as unfortunately my (brilliant) Cons in on annual leave.

8/9hrs after referral see the reg... ‘so we’ll keep on with the reg nebs and I’ll get a (crappy) Cons to review you in a day or 2...’ I try and suggest a day or 2 of hydrocortisone therapy (had it before and know it works well for me). I get told that hydrocortisone is only a short acting drug (so are nebs and hydro lasts longer!), and get told there aren’t many options for acute/chronic asthma (yes there are! Hydro therapy, amino therapy, iv salb...)

On this front I’ve also been told this weekend that pred only works on wheeze (which I don’t have) therefore I can wean pred as low as I like (wrong! - my Cons wants me no lower than 35/30 alternating - due to side effects I won’t go to 40 unless there is absolutely no other choice (and Cons agrees) plus I have been on pred since 2015...)

5 days of the same treatment (35 pred and neb neb nebs) with no real change and they won’t try something else! The horse is dead dude, time to buy another!

Very upset (blaming pred) and frustrated cause I know what I need to recover at this point but they are refusing to listen (and I know my Cons would!). I can’t wait til I can start Benralizumab!

Sorry for the rant! Anyone got any ideas on how to get them to listen?

I hope you all had a better weekend then me, whether that was in or out of hospital!

[emmasue]

I am sorry to hear this! I don't really know how to get them to listen. I struggle with this as well. I did go on a seminar recently about how to talk to professionals with regards to children with special needs (I have two children with ASD). I don't know if it will help, but sometimes it helps to reframe the way you say things so that the doctors feel like it was their idea or saying things (in a sweet voice) like, "We really want the best for me so how do you think we can achieve this?" Of course they don't want to say, "No, I don't want the best for you" so it kind of forces them to reframe their reply. Another option is to get your nurse on your side (if possible). I was in hospital for a week last March (year ago) and the junior consultant wanted to turf me out but the nurse told him that I wasn't going anywhere. I must admit that I ended up in tears with this nurse the day before, worried about how I would cope at home so that may have helped. It's a lesson I am only just beginning to learn so I can't say that I'm a professional in it. It just helps to rethink the way that we communicate with professionals, in whatever background.

I hope you feel better soon. Take care of yourself. x

[EmmaF91 Community Ambassador in reply to emmasue]

If I was still on the resp ward I know I’d have back up with the nurses (as I did the day the doc wanted to PRN nebs, they had already told him I wasn’t ready)... on this ward all the can do is listen to me cry (which 2 have already today).

Like the idea about treating them as if they have ODD 😅 not sure how to go about it tho cause the reg I had today was a definite ‘there’s nothing else but nebs you can have’ 😒

Thanks for your support. Gonna try calling AUK and my spec hosp helpline for advice tomorrow (maybe see if spec can call my local with ‘advice’)...

Stupid thing is usually I’m the one who wants to leave before they want to release... this time we’re in opposite roles!

[emmasue in reply to EmmaF91]

Yes, do call Asthma UK. They may be able to help give you better ideas. It's hard when you know your body best and the doctors don't seem to want to listen. I've had my share of weeping in hospital before. Once, a consultant actually told me that I don't have asthma and it's just anxiety. I've had asthma all my life! I think I would know the difference. Also, all the doctors who treated me for asthma over the years, you would think that more than one of the would decide that my asthma diagnosis was wrong if that were true? Anyway, I hope you get the treatment you need. It's so hard. Take care. xxx

[Wheezycat]

I am so sorry to hear you are having such a rough time! When is your usual consultant back? I hope very soon, and that you have people around with more of a clue now that the skeleton staff situation over the weekend is over.

[EmmaF91 Community Ambassador in reply to Wheezycat]

Thanks. My Cons isn’t back til next week (she’s on annual leave) 😫 - I want to be out before then! Main issue (other than no cons/reg not listening) is that I’m not on resp ward so staff aren’t as on the ball... some are great (ie I ask for a neb get it in 10 mins) others not so much (1+hrs to arrive)...

Need to get out of my mood funk (which tbh probs won’t happen til pred dose is lower)

[Wheezycat in reply to EmmaF91]

Back to Trolls film? I have watched it by now, by the way, last Christmas /New Hear when I was poorly.

[EmmaF91 Community Ambassador in reply to Wheezycat]

The mood I’m in atm I’d start sobbing loudly at it 😅... they were concerned enough and my silent watery eye tears 🙈

[Wheezycat in reply to EmmaF91]

Oh, dear. Hope you find something else to while away the time. May you be out - and lots better - soon!

[LDloveslattecoffe]

Hi EmmaF91 sorry you've had a frustrating weekend.

Do you have your consultant or secretary's email?

If so, could you email him (assuming it's a he as you don't say) your experience and ask him to put a course of action of the system so when A&E or his Dept when he is off have instructions for you.

Or he does you a letter you can laminate and photocopy. (laminate copy to show but you keep - photocopy to give them???

[EmmaF91 Community Ambassador in reply to LDloveslattecoffe]

Thanks

The main problem is I’m new to the area... I have 3 years at my old local and 18months at my old specialist, whereas my new place have only known me 4 months and only met specialist cons (he) once. My ‘normal’ local cons (she) is on annual leave so no help there and I don’t have email for the other.

I’ve rung my spec helpline and left a message so hoping they’ll call back from their ANs.

stupid thing is hopefully once I start Ben this won’t be a problem again, so there’s no real point getting things organised... a&e are usually fine once they admit that just nebs isn’t doing the job (and I know my local cons would listen to me if she was here)

I have an appt with her again next month so if I’m not back before I’ll talk to her then...

[Whitechinchilla]

So sorry to hear what rubbish treatment you have been subjected to.

I can’t offer any medical advice but at least you know you can come on here and get rid of the angst inside, stress ain’t helping on top of everything else you have going on.

I pray you get to the bottom of the problem quickly so you can get on with your life. Spring is finally here, so I pray you get to enjoy it very soon. Good wishes

[EmmaF91 Community Ambassador in reply to Whitechinchilla]

Thank you

Yes being able to rant helps 😅 - it’s just frustrating not being listened too (I’ve been in this situation a lot just never at this hosp... I know what will help!)

I hope you have a good spring!

[lucia_m]

Hey Emma, so sorry you’re having such a rubbish time. It’s awful when hospital staff don’t listen and don’t seem to know good practice. I really hope things improve soon.

[EmmaF91 Community Ambassador in reply to lucia_m]

Thanks... the nurses are basically fine - main problem is the docs really 😅🙈

hoping to persuade a Cons to try something different if I ever see one... just want to get out so I can earn my rent again (I’m self employed)

[twinkly29]

That sounds horrendous. Last time I went in, the I know best med reg ignored my plan. ITU came down and were really cross. "Why isn't she on back to back nebs?" "Well she's had 2...." (in 2 hours). Ooh generous. Anyway, when I got to resp ward, a nurse phoned my consultant and said I was in and they hadn't followed my plan. He simply said "wonderful!!". Makes their job harder as well as us feeling dreadful in the meantime.

Is it worth asking to speak to a bed manager or the matron in charge (not for the ward you're on but overall charge)? Explaining the issues you're having, particularly with having been moved out of the most appropriate ward (how on earth were you the one who was best to move?!) Sometimes them just knowing you're not happy to that level helps. Xxx

[EmmaF91 Community Ambassador in reply to twinkly29]

Unfortunately cause my issue is maintenance not reversibility I’m classed as non-urgent so it can be a fight to get escalated treatment. Cause I appear fine and can (and do) get up and out of the ward in the 3hr window... it’s the following 1-3hrs I start getting issues. Plus I compensate really well so unless at 35%PF my EWS is ok and I look normal at 50%PF.

These docs seem to be working on the premise of kicking me out with regular home nebs... My asthma in general is not at that level, I just havent had adequate treatment to gain stability yet... my 2 cons already dislike the fact I have an emergency neb (and that I do end up having to use it maintenance wise whilst time spiralling to next admission as I don’t see the point of a&e if a neb has lasted 4hrs... waste of time plus I’d be in almost every week/day if they didn’t give more treatment 😅)...

... just seen the reg again. Despite PF dropping to 38% last night and needing b2b to get it past 55% she wants me to try and stop all nebs see how I go with just my pump... asked about hydrocortisone therapy again... she said that they only do it for people who can’t take tablets cause they’re too bad... name dropped old spec hosp where I had it done and she spoke to her con who suddenly seemed to think review tomorrow and hydro if I need it... so I’m now being told to try stop using nebs (I’m stubborn and PO enough that I’ll not take til I’m really bad now) but they’ll review regarding hydro tomorrow 🤷‍♀️🤦‍♀️

[twinkly29]

Arrgghhh heads and brick walls for you!! Don't push it if you can't manage. If only to prove you're not stable ebough

[EmmaF91 Community Ambassador in reply to twinkly29]

Yup... mentally committed to the idea that if no hydro tomorrow I’m going home, cause there’s nought they’re doing what I can’t do there!

Ha - I’m the type where I’m fine and functional until I’m at 30%PF and suddenly drop... whilst mag is in my system reversibility is fine so I can do that and be ‘safe’...

[Oldandgray]

Write the above in a complaint letter to the hospital and to your consultant. Without it being writing there is deniability. If it’s written and in your notes they can’t say you did not make them aware of your needs.

Insist that whoever you send the letters to acknowledges the receipt within 48 hours,

[Smoggy1990Boggy]

Hi Emma. I wonder why some people go into a healthcare profession when they are incapable of listening to someone like yourself who knows your asthma. My suggestion as I’ve just seen your post is contact your consultant’s secretary and see if she can get in touch with your consultant explain the issues you are having. I contacted my old consultants secretary for advice and although she was offhand she did contact him. He was on annual leave he did formulate a plan. Also speak to PALS as well. I don’t feel very well myself this week and have no faith in healthcare professionals in general at the moment so just staying at home and hoping for the best. Asthma U.K. another good option too. It does annoy me that patients are told to take responsibility for their care but then when they do speak up they come up against too many healthcare professionals who think they know best based on their limited/ textbook knowledge.

[EmmaF91 Community Ambassador in reply to Smoggy1990Boggy]

Hi

If you haven’t seen my latest post - I ended up having a discussion with the consultant (not mine and CF/bronchiectasis speacialist) on Thursday. He had never heard about hydrocortisone therapy in the non-urgent setting for asthmatics but after a discussion he agreed to follow my self-prescribed treatment plan (3x100mg for 2 days). My (asthma specialist) Cons is running a seminar on asthma in a couple of weeks and he’s going to ask more info about it then (I gave him limited info as I dislike pharmaphysiology 😅). Up point was an almost instant improvement and I managed to get home today (had my last dose at 8.30am and was on the bus home at 9.15 😂). Haven’t had a neb since 4am thurs/fri night and only 6 vent since then 🎉🎉. Maintaining above 85% (from not maintaining and dropping to 40% wed/thurs night).

Happy that they finally listens to me (had to name drop old spec hosp to be listened to but 🤫🤫🤫) and I feel like they were interesting in learning more so I shouldn’t have this problem again! Also had the great news that I get to start Benralizumab on Thursday so hopefully I’ll not have this issue again!!!

I have an appt with my local cons on 16th so will chat with her when I see her about the situation

Thanks a lot of the reply

[warmlight]

Hello

How are you doing?

I was thinking along the same lines as getting a treatment plan written up by your consultant to keep in your hospital notes for emergency

admissions for all staff to follow. Make sure it’s up to date and signed and dated regularly to show it has been reviewed and still stands as the up to date instruction. I’d also have a copy tfor you to keep with your asthma plan and make sure it is signed and dated regularly to indicate still current advice.

Try saying you don’t feel safe as an outlier on a different ward and that you want to be on a respiratory ward as the safest place for you. Involve PALS if you have to.

Good luck pc ray you feeling better and are actually at home now xxx