Failed by asthma care

[RD23]

It’s been a while since I have posted on here as I’ve been trying to muddle along but after a really tough week with my asthma and trying to get the care I need, I felt I needed to post.

I did an event with work last week and on the Wednesday my chest felt tight but I cleared it myself with my Ventolin, on the Thursday at the same event I had an attack, they got St John’s Ambulance to me and two nebs later I was fine. Last Friday, I went to see my GP to see if they could refer me to the ‘hot clinic’ at my specialists so I can get seen sooner. I asked if there was anything else that could be done and was told I need to speak to my specialist.

Phoned the specialist to get an appointment, apparently she’s leaving in September and has no appointments and although I was told at my last appointment I would be followed up, according to her secretary, this can be 6 months or 12 (sorry, not good enough) they put me through to the nurses who have sent me an appointment for the end of July which I can’t go to because I will be on holiday and also by the end of July I’ll either be better again or I’ll have had another flare up!

I’ve had a&e treatment twice this week; Sunday and Wednesday, resulting in a total of 10 nebs, 3 lots of hydrocortisone, a potassium drip, magnesium and pred. I’m sick of this becoming a way of life and I can’t help but feel like I’m being failed by health care professionals. I know our NHS is doing the best it can but when Asthma UK publish reports about the number of preventable attacks and people dying as a result of their asthma, is it really any wonder when we’re left alone by GPS and specialists to just get on with it?! I am beyond annoyed with the system!

[green881]

I really feel for you this type of nonsense seems to be a thing on both sides of the pond! I got the wrong dose of the most basic ICS (QVAR) at one of the best medical centers in the world ... despite all the strong hints I gave them. Luckily for me my severity level is not currently anywhere near yours so it was more annoyance than anything, but still shaking head. I've been there long ago.

I don't know why it is so hard. Call an asthma nurse hotline if you have one, talking to someone that deals with asthma every day can make a big difference rather than randomized doctor.

In my book you need to go on QVAR max dose right away give it 1-2 weeks to work and be religious about not forgetting to take it. Your GP should be able to phone this in. Did the GP really not give you the basics and make you wait 6 months? Hopefully that will buy you time and space to figure things out.

Since your attacks were in the same place that is a good clue as to your triggers. Keep looking - avoidance really helps if you can nail it.

Good luck

[RD23]

Thank you. I think the frustration, the meds and the emotional side effects have really got to me this time!

I chatted to the helpline the other day and they were great, it’s the third time I’ve phoned them in total and the nurses are so understanding and do their best to try and suggest things that will help. Sometimes I think it just helps to feel like someone is on your side.

I’ve seen the pharmacist at our GP as he was the only person they could get me in with and he was great! He’s given me the name of a different inhaler to ask to try that will be better than my Seretide and he’s ordered me a spacer that has a mouthpiece on it that shows you if your technique is right. He said that my technique should be different depending on which inhaler I’m taking through my spacer and that only 8% of people who take inhalers know this! It’s a new one to me and I really don’t understand why the ‘specialist’ has never covered this! Thank goodness for the switched on pharmacist who has done a lot of research into asthma. Aerochamber Flow-vu is the spacer he’s ordered, it comes with or without a mouthpiece.

[GYPSYMITCH]

Good advice here, have you written to your MP? Also, a complaint to your practice manager and the NHS Board could help. And, to really get heard see if any of your local newspapers would be interested in how you are being failed .

[RD23 in reply to GYPSYMITCH]

Thank you. It just feels like I’m being passed from pillar to post and I know they have a lot of patients to see but I just don’t think it’s good enough.

I’m definitely tempted to write to my MP.

[hilary39]

So frustrating but keep advocating for yourself like you have been! Not all doctors understand or can identify severe asthma that isn't improving (and thus treat it accordingly). It's so scary to feel lost and overlooked when you have a potentially fatal disease!! Remember that and keep kindly but firmly demanding the care you need. That's the hardest thing about having health issues--you're the only one who can get yourself what you need which is really hard when you're feeling awful! I completely empathize. Take good care-