Consultant appointment and biologics

[Filobabe]

I have seen my asthma consultant and found out that I have very high IGE levels. This wasnt really a surprise as I have lots of allergies and hayfever.This is alongside having brittle asthma with unpredictable attacks.

I currently have a chest infection too and am on another course of steroids.

He wants to refer me to see if I would be suitable for biologics. So I feel some progress has been made but I still feel frustrated because he said there is nothing he can do about my poor experiences with the ED/ paramedics.

Anyone got any advice about biologics or have a letter template about brittle asthma?

Filo x

[EmmaF91 Community Ambassador]

I’m glad you’ve been referred for Xolair (the anti-IgE biologic). I really hope it helps you.

Biologicals can take a while to build in the system, and xolair can be either fortnightly or monthly (depending on IgE levels etc). It can take about 3/4 months to be fully affective, but that being said some people have almost instant improvement. For me the main side effects when I was on it was headache, but the it started causing urticaria and angiodema flares so got stopped (I also discovered my eosinophilic asthma was worse than my allergic asthma as I had a much better response to mepo/benra than I did to xolair).

I have a form I made that I present to a&e/paras etc with all my details on which also has a ‘how I present/treatment plan’ area on it that’s been quite good for me. If you like I can send you a blank template for you to pay about with. I’m also getting an ‘offical’ letter from my con saying something along the lines of ‘severe/brittle asthma... if X happens do Y do not do Z’ (have only just asked for it but con was happy to do so). Just idea of something to ask for, and if it’s interrupting uni you need to tell the spec hosp your referred to so they can try and speed up your first appt.

Hope this helps and than you get seen soon

[Filobabe in reply to EmmaF91]

Thanks EmmaF91 that form would be useful as a starting point.

My consultant wouldn't give me a letter and said he had no control over what happens in ED for example.

[Kimmy132 in reply to EmmaF91]

Hi Emma would you be able to send me your blank form as well please xx

[twinkly29]

Ooh good EmmaF91 has replied - I was going to recommend her form.

Glad you've hopefully got a stage further for the longer term but 😳 at your consultant saying they can't do anything! I'm so lucky with mine, and was with my previous one where I used to live.

Sometimes doctors don't like non-official plans so if your A&E is like that it might be worth asking your consultant to sign a copy of Emma's plan (specific to you obviously) so it shows he agrees. But I suspect he'll be rubbish there too. Of course he can sway what goes on in a&e. Silly man.

But definitely try Emma's form. Having presentations written down is useful for a start. Then hopefully they'll just do what needs doing!

[K8ty25]

I have so many stories about bad A&E treatment I really could write a book. I understand why your consultant is reluctant to 'influence' your A&E care. Mine was too originally however after I was refused A&E treatment because 'you don't sound like an asthmatic' he wrote a letter stating that I was x type of asthmatic and needed to be treated as such even if symptoms were a little different.

None of my consultants have ever stated what treatment I should receive when I reach A&E but having the letter with my diagnosis on there with the consultants signature at leat stopped them sending me away without even attempting to help.

Maybe you could ask for something similar. Just a diagnosis letter rather than a treatment plan.

[Filobabe in reply to K8ty25]

I think he was reluctant to do anything except refer me for biologics.

I think I wouldnt feel so anxious about seeking emergency help if i could communicate my treatment needs/symptoms etc.

I will give EmmaF91 form a go although hope I dont need it so soon.

[K8ty25 in reply to Filobabe]

I get that. I hope Emma's form can help reduce some of the anxiety for you

[Lysistrata Administrator Community Ambassador in reply to Filobabe]

Hi Filobabe, I developed something similar to Emma's form for myself after some bad experiences and do find it helps. It can't make them do anything but it does alert them to the fact I am.a bit weird and they shouldn't go in assuming the normal rules of asthma apply. It says I am under a severe asthma clinic, have these tests showing I have asthma, X admissions in last year, don't wheeze, PF does xyz, these are regular meds etc and this is what helps during attacks and how I am getting better.

I often tinker with it after an admission if I can see a blind spot eg how they handle certain aspects or what they find useful. It's not official and I will happily tell them I created if they ask, but most drs and paramedics find it really helpful and will try to follow it (well except the discharge bit, the medics here are awful at listening to anyone about that!!)

I do often get asked if it's created by my asthma team - I laid it out and formatted it like my CV so it does look kind of formal but is all mine! I did it well before I got any help from clinic (and in fact used to make sure a previous consultant never saw it as she would have told me not to use it - not the best and kept telling me I was anxious and attention-seeking). I very nervously showed it to my asthma nurse here after they wanted to give me their 'asthma passport' (same thing but official version developed by the nurses). They said oh basically you already have one then so use either - your version is all the stuff we would include!

Hope you don't need it soon but I do know the feeling and with previous cons being worse than useless I found it did help when I just made my own guide to my weirdness and handed it over as soon as I can. Usually they ask about meds so I hand them the whole thing with meds list embedded and they start reading - or now I give it to paramedics and/or triage and drs without being asked and have a second copy if it goes awol - it often gets added to my notes. I got another comment this time from a dr on how useful it is and who made it? It gets called a plan a lot so they do seem to see it as something to try and use.

Good luck with the biologics too.

[twinkly29 in reply to Lysistrata]

I get that with mine, the "is it yours or from asthma team" thing. It's because if it's from a doctor they have to take notice of it (at least acknowledge it!) but if it's "made up" they can totally disregard it if they want. Infuriatingly it's when they want to make the point that it's not official that they seem to push against it - rather than it being based on medical need.l, although of course they spout all sorts to prove it is medical need when you just want to be able to talk enough (and be listened to) to explain why they're wrong!! The other infuriating thing is that yes it's mine but it's only containing info/procedures agreed with consultant. And, in my case, waiting for the official piece of paper.

I do totally understand why doctors don't want to do things differently to "the book", it's on their heads etc. But not doing so is likely to cause them more problems. Arghh

Anyway hopefully a form of some kind will be useful for Filobabe! When I've got my official one I'm changing mine so it's more for paramedics and says in massive letters to find plan on hospital system ASAP for when I get to A&E 😂

[Lysistrata Administrator Community Ambassador in reply to twinkly29]

Ugh infuriating!! I find A and E are pretty good with it mostly and often paramedics but the medics do what they like when it suits them (including ignoring the asthma team if it doesn't suit them, especially if the person who saw me isn't a doctor).

At least I don't mind asthma team seeing it ...not that they are without fault in not listening.

I am in at the moment and feeling like I need to do battle. Was discussed at an asthma MDT recently and can see I will have to have a discussion of my own on that one.

[twinkly29 in reply to Lysistrata]

Your first paragraph - yes that exactly! With me it's medical team "deciding things"! If I get a good med reg I know I'm ok. I have got my consultant to understand that it's the bit between leaving the care of a&e staff and being under his care/at least on my ward that's the problem.

Ugh to being in and double ugh to having to fight. It's hard enough when you're "well" (said in the loosest terms of course). Hope you find someone who will listen x

[Lysistrata Administrator Community Ambassador in reply to twinkly29]

Thanks! I just spent a month in limbo nebbing every day when I tried to semi have a life. I can go weeks without using it so I am NOT in the mood for being fobbed off with VCD diagnoses from years ago and dysfunctional breathing, nor with being sent home still struggling just to go back into limbo.

And yes getting good medics helps but is pot luck. Sometimes I get s good one first then the next one doesn't listen. Non-asthma resp are often the worst - a little knowledge is a dangerous thing.

Sorry for the rant/hijack Filobabe!

[Filobabe in reply to Lysistrata]

No problem! It's interesting to hear we are not alone in feeling frustrated.

[twinkly29 in reply to Filobabe]

I always feel pleased others understand while also feeling I've wished them to be unwell 🙈😂

[Filobabe in reply to twinkly29]

Lol

[Lysistrata Administrator Community Ambassador in reply to twinkly29]

Same! I don't want to wish bad things on others but it is nice to know it's not me, it's the drs/the system.

[Hidden]

I am also waiting to see if I am eligible for the injections after multiple amount of antibiotics and steroids each year, fingers crossed you manage to get sorted xx

[Filobabe in reply to Hidden]

Thanks. I hope it works out for you soon.

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With regards A&E and paramedics contact PALS which is available on the web site with your complaint