When do you say enough is enough?

I'm relatively new to AUK, so i hope this is in the right place.

But i'm curious about when its time to put your foot down with your consultant/healthcare team?

so far this year i've had four intensive care admission...(and its only May) and not an awful lot seems to have been done about it.

I know that i'm on maximal therapy but i cant help feeling that i should be getting more out of my care.

(maximal therapy being, ciclesonide, salmeterol, fexofenadine, nasonex, adcal, pred (30mg down from 40mg for 6 months)theophylline, lansoprazol, spiriva respimat, accolate, and the old ventolin/bricanyl all titrated to embarrassingly high doses for my age)

i dont have home nebulisers because my consultant believes that 'if you need a neb, you need to be in hospital' so i ended up puffing through a canister of ventolin and bricanyl inhaler or two each week.

but what nerves me the most is that i spent my 18th birthday in hospital, x-mas and new years, not mention all the valuable term time that i've missed at school.

(and my GP then had the nerve to refuse all my prescriptions, telling me that i didn't have asthma because if i did i shouldn't be symptomatic on all this medication which of course lead my blood turning to battery acid resulting in another ICU stay three weeks before my exams)

so overall i guess i'm pretty fed up..

so have you ever put your foot down and stropped at your consultant or GP?

was wondering if anyone had any similar experience with Prof Corrigan? (Guys and st thomas's clinic)

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Yup, put my foot down several times before... Both with my GP and my old consultant, now seeing new consultant in tertiary care for approx 18 months and finding getting 100% better treatment. If you feel things are not right then you need to push to get things sorted out. If your GP has refused to issue asthma medcines then you ought to think about complaining to your GP practice manager.

I don't live in London, so do not know anything about your current consultant and his background but did wonder if you could get a referal to the Royal Brompton as they deal with more difficult cases of asthma.

Is it worth looking into what additional treatments or off licence treatments could be tried and taking a list with you and discussing them with your consultant. I am assuming you have allergy issues because you are taking fexofenadine has any one suggested that you meet the NICE criteria for xolair injections? I have problems regarding my asthma/allergies and I also take a second daily antihistamine. This might be something to ask about if allergies trigger your asthma.

Hope you get things sorted out...

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I think it's not at all a problem for you to raise this with your team and make it blatantly obvious to them that you are not happy with whats been happening or your overall asthma care.

You do have rights as a patient. Take a look at the department of health website which may give you some pointers on how to move things forward if you don't get a good response from your team.

I went to see my GP after being unhappy with the level of control that my then consultant was satisfied with, got referred to a specialist unit and it was the best thing I did (although it does appear you already have specialist care?) even so, you are entitled to be in partnership with your medical team.

Take care

Feejay

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Hi Sarah

I can totally relate to what you are going through but luckily, I got a referral to RBH just before I got really serious and possibly needing intensive care admission.

by the sounds of it, you need to make a complaint to your practise manager at the GP's for the way they have dealt with your symptoms and claiming that you are not asthmatic because your on maximum therapy which clearly is not working for you.

also you should be able to get referred to RBH through GP and from my personal experience I can honestly say that being a difficult, severe, brittle asthma patient in my local hospital didnt help me at all and I wish I knew about Royal Brompton before as they look after you so well and regardless of how busy they are and how much they got going on, they always make time to listen to you and take time out for you

I hope you get something sorted soon

Feel free to PM me anytime

Nimz

x x x

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Hey thanks for the replies

sadly i'm not eligible for xolair (my IGE is not high enough apparently)though it might be something that i bring up in my next appointment, as is it purely dependent on your IGE?

Though i'm already under specialist care and i've repeatedly been told that 'your consultant is one of the best in the country' and i end up thinking to myself (if he's soo good then why do i average an ICU per month?.. granted its down from fortnightly).

i do have an extremely helpful asthma nurse (embarrassingly enough her no. is on speed dial)however i find myself bickering with my consultant who seems rather nonchalant about my 48% lung function. but part of the problem is my age and when i kick up a fuss it gets treated more like 'she's a teenager being stroppy because things aren't going her way' (but its my healthcare..shouldnt it kinda go my way?)

i'm also partly worried about asking for a RBH referral...would it be asking too much? will i get kicked out of my GP surgery for being too pushy?

sarah

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Have you spoken to PALS? They will be able to help you out if you feel you want to make a complaint.

I can sympathise with feeling you aren't being taken seriously. I get that with another illness (not my asthma) and it's really frustrating, not to mention a little bit hurtful.

xx