How do you get a good review?! General moan...

[annabradford]

Hi all,

I've had asthma for about 10 years and have never had a good review. The worst include being sent away because it was a computer error and being told to lose weight to cure asthma (I had a BMI of 17 at the time....).

Anyway, I had a review yesterday after waiting 2 months for an appt and running out of inhalers! It took 5 mins. The nurse started by asking how well controlled I was. I said not very because my Symbicort had been switched to DuoResp and I was getting such horrendous side effects that I'd given up using it. She's the third nurse I've begged to switch it back and she finally agreed, but has only given me half the dose of budesonide. She then did my PF, said it was fine because it was 400 despite me telling her that my best is about 490-500 so I'm getting down the 80% cut off. I asked for a written plan but she said I didn't need one. I asked about alternative methods of treatment e.g. montelukast and she just told me to stop googling! I'm a medical student and know from our teaching that montelkast would make a massive difference to me! I asked about allergy testing because foods have started to trigger asthma and make my mouth swell but she just said I have a high IgE with hayfever. I had to beg her not to remove the antihistamines I spent years asking for because nothing OTC helps.

To make things worse, I looked at my online record and she's made things up. She written that I get no night symtoms, am fine with exercise etc. I told her I wake up every night and can't run 1k at the moment despite my normal being 10k!

I know I have a very mild version compared to most asthmatics, but I just feel so ignored. Every review makes me feel stupid for asking for things. How do you get what you want out of a review?! I don't mind them turning down my suggestions, but I'd like a reason as to why. I'd like to be able to discuss my triggers and treatments. I'd like to feel in control. I'd like to know how to manage exacerbations.

Half of me wants to go back and discusss allergies with the doctor. Half of me thinks that's cheeky and I shouldn't waste appointments!

Sorry for the long read.

[Lysistrata Administrator Community Ambassador]

That's really frustrating- no wonder we have such bad stats in the UK for asthma when people aren't getting good advice in primary care! It seems as though the people you see have no idea what Asthma UK are advising. I have an idea that not all surgeries actually train anyone in asthma care so it can be pot luck - may be that the nurses have never had any proper training on it and don't know.

I think it would be completely legitimate to see the GP and have a proper discussion - you are trying to manage your health and they're not actually letting you. It may even be worth putting in a complaint to the practice manager as frankly the way they are doing reviews and advising people is dangerous. You are confused and lacking advice and you're a medical student which most of the asthmatics there won't be - they may not be as aware they're getting poor advice!

May also be worth ringing the AUK nurses but I definitely think finding a good GP to do a review is worth it, as they've not actually done a proper one at all and you clearly have specific concerns at the moment and don't have ideal control.

[Hidden]

You need to be much more assertive, you have had asthma for 10 years so your view are very valid as you will know your symptoms and how your body reacts better that the nurse or doctor.

As Lysistrata says make and appointment with your GP.

[Lizzie1956]

Hi Anna

That all sounds thoroughly unsupportive and unhelpful - I think you're going to need to be far more assertive. When you talk about a 'review' I take it you mean one with your GP practiced Nurse?? or Sister?? Many are not specialists and I think given your history, whether you think its mild or not, you should be referred to a Consultant or specialist unit. It sounds like it may not be so mild if you're clearly not able to run so easily or so far???

It is not good enough to have inhalers messed about, you need a full and proper diagnosis with the testing that this involves. In my opinion.

Good Luck

[Griffon]

Sorry , I can't see what your complaint is .

If you have never had a good review , perhaps it is your expectations that are too high ?

[Lysistrata Administrator Community Ambassador]

I don't think that expecting useful advice and accurate records from a healthcare professional is setting your expectations too high. AnnaBradford's surgery and their approach to reviews may be why the UK has so many preventable deaths from asthma, and why this has got worse even after the.report was published outlining where the problems were. I doubt hers is the only one like this though I know there are good ones too.

One person and one surgery can't change this overnight, but if everyone knew what they should be getting ie had reasonable expectations that they would have someone trained or at least who can use Asthma UK's resources, and pushed their surgery to provide this, perhaps things would improve.