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Tell us about your asthma care

Despite how serious asthma attacks can be, last year 8 out of 10 of you told us that people with asthma were not getting care that met the most basic clinical standard. We want you to tell us, has that changed?

Last year we used your results to help campaign for a national clinical audit in England and Wales, which will help improve care in all nations across the UK. We now need your help again.

Please tell us about your asthma care so we can use the results to raise awareness of how serious asthma is and continue to campaign for better care. Can you spare a few moments to complete our survey? It should only take around 2 minutes.

The survey can be found at this web address: surveymonkey.com/r/V7FX5GJ

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I have had asthma for around 4 years. I take pulmicort and bricanyl. I have been doing fine until recently when the flat got turned unside down to get it rewired. There was a lot of dust disturbed. I can't get rid of this cough and I keep having attacks which generally disperse but sometimes it takes hours before I feel better. I don't want to end up in hospital again as I am going on holiday soon. Is there any advice you could give me? I live with my partner who is also my carer. We live in Scotland. The doctors (glenburn health centre) have stopped giving me check-ups for some unknown reason. I feel neglected and abandoned. please help me get some fresh air. Not been out for 6 months. I also have diabetes and PA. I am obese which doesnt help. Always getting brethless. Last B12 injection was 11 months ago because they said the B12 count was 2000. Way too high.

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I have had Ashma most of my life (I'm 46 female ) .over the last year it has got gradually worse .

I have other health problems which I'm sure are related .I have IBS excema alergies and heartburn . These seem to flare up at same time but IBS c not good all the time .I take meds for heartburn and am also on blood pressure tablets . Last September I became ill with a horrible cough and it's still hanging around .I was rushed to hospital three times and have been on steroids and antibiotics on and off since which have not helped . I am constantly block red up with mucus and yuky stuff which I've always thought down to my alergies .

I'm constantly tired as Ashma keeps me awake .

The only time I feel well is if I've been on holiday near the sea and my asthma symptoms clear up

My doctors are great but feel they not understanding how unwell I feel with all things flaring up at once which is ongoing at this time 😃🌺🌻🐝

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Hi, The mucus etc. - I have it too. I started to get that after having one cold after the other about two years ago. I had a hip replacement operation not long before that and I think my bodily resistance was low but also my daughter and her family lived next door and passing on colds to us, especially when we looked after Robin our granddaughter.

Like you I feel tired all the time as when I lie down it is worse so it is never undisturbed sleep. Also like you I had a great time when on holiday near the sea and slept like a baby. That must be good for us and was interesting for me to read that you had the same experience.

I read you have had Asthma most of your life - very sorry for you as I have only had it a couple of years and feel bad enough with that, so can only imagine how it must be for you. You write you take meds but by what you write nothing seems to be really working for you? While elsewhere I read that people get the Asthma under control. Is it a hit and miss kind of thing to find out what is best for your own individual case? I am finding it very difficult to see through the jungle of medications etc.

I was born and grew up in London but have lived in Germany for 49 years so added to the difficulty of finding the right medical care is that most medications here are probably under a different name than the one in Britain. Although we have medics in our family both my son in law and my daughter specialized in other directions so not really a help to me in my case. And doctors here are not exactly the listening kind. You are in and out of there. I know they have up to five minutes each patient so you are kind of rushed through it, with little information coming from the other sides as to what your alternatives are. He just writes down something and the last time at the beginning of the year it was a medication which did not agree with me. I later read that it was relatively new and had taken the place of an old product. It was an inhaler but with a kind of powder in it and I had a few really bad fits of coughing after using it. So stopped, especially after reading here that it did not agree with most people who longed for the old form back (which apparently had no powder).

I want to find something that will stabilize it but nothing overdone. I am not at the wheezing stage yet, my lungs are still clear but as said my bronchial tract ( I do not even know the english term for that so hope that is right) is not working properly.

I am not eating anything after six in the evening and that helps a bit as find that with a fuller stomach it makes the chance of waking up with coughing even worse. I do have a bit of a feeling as if I have some weight on my chest sometimes and I can't sing well anymore as get out of breath. I was a singer in a band in the sixties and now do it as a hobby with like minded. But I think that singing is good for this disease. When I start again, despite problems at the beginning, the breathing seems to get a bit better after a time.

We are pensioned and thinking of leaving the country in a couple of years. Your writing about your experience of being near the sea - maybe that is the answer for people like us if it is possible. I am really sorry you feel so alone with it all.

Nica

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Hi everyone - we're just giving this post a Monday-morning bump in case anyone hasn't seen it. It will really help Asthma UK to raise awareness of how serious asthma is and campaign for better care if you fill out our 2015 Asthma Care Survey - surveymonkey.com/r/V7FX5GJ

It would be fantastic if you could share it with any friends, relatives or colleagues you know who also have asthma - every person who completes the survey will help us get a better picture of asthma care across the UK

surveymonkey.com/r/V7FX5GJ

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Salut,je demande si je peux participer avec mon expérience

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hi iam new to this site iam andrea from bradford and ive had asthma from 5months old , iam now 57

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Hi there. I was first given asthma diagnosis about twenty five tears. Followed on from a serious chest infection. Started on ventolin which worked well for some time. After an increase in symptoms becotide was added. Until about eighteen months ago didn't have too much of a problem, occasional steroids. More recently things have been stepped up so I now have ventolin, Seretide Montelukast and steroids every few weeks. My go is good, he knows me and listens and does what is needed. I have just been referred to a specialist, I do feel this should have been done earlier. As I have just finished steroids, on antibiotics for suspected chest infection. My asthma is completely out of whack. The asthma nurse last time I saw her said she couldn't write an action plan for me as I was too unstable. So I still don't have one. The main problem I have is if you don't see your own go, they don't know how I usually am, and ignore,it then escalates. Hope this helps

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Après avoir marre des médicaments j'ai suivis la respiration profonde

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Followed the link but looks like survey is now closed

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Had asthma for 40 years. Fed up with not being listened to by medical "professionals". Asthm nurses know less r

Than me and are not qualified to prescribe? I have led my own care by logging into thoracic society ....... GP. Stands for " generally poor". My asthma is under control for one reason!!!!!!! I educated myself and had to beg for the allergy medication I knew I needed to avoid attacks

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Hi I've had asthma since childhood and now 55. Never saw a specialist asthma nurse until I was 40. I worked all my life in the NHS as a psyche nurse and 5/6 years ago referred to respiratory consultant. He did some tests and positive for Aspergillus and I'd had tests in my 20s by an immunologist and allergy to foods. He put me oh Prednisolone permanent for 2.5 years as well as on am off most of my life. Started xolair and after 2 years and no improvement I came off it. I had to push for CT scan and found atelectasis and ground glass attenuation. I'm now coughing up small amounts of blood, can barely walk upstairs and 20ft and now pushing for referral to larger hospital ie RVI Newcastle or James Cook. Last test showed sensitivity to Aspergillus but had 2 lots pneumonia in 3 months and just had another infection possibly due to fungal as I was px 2 lots doxy and Pred which doesn't have effects so thought ill take the itraconazole and it is now in feeling slightly better. I won't go to hospital to be told to take 10 puffs blue when that's normal daily. I also don't really get wheezy just breathless and average peak flow 260 and sats 94 good day. As I know what to do I've managed myself but no one sees me really ill with temp 38.1*.

I feel Dr's and nurses don't use nice guidance and add on therapies or the likes of Omalizumab, Nucala and bronchial thermoplasty due to cost but there's an increase in deaths year on year.

1,468 people died from asthma attacks in the UK in 2015, an increase of 21 per cent compared with the previous year (1,212).

This equates to 117 people a month and despite brittle, severe, complex - we are not getting plans appropriate assessments by specialist nurses and the correct treatment but ultimately listened to. Spiriva respimat makes me cough badly and I've reacted to uniphyllin and its like no one believes you. So listen, hear and be in our shoes.

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I was only diagnosed with asthma a year ago. Unfortunately/lucky I had pneumonia and was in hospital so had to have follow up at the hospital.

I have been lucky that in the last 11 months I have a respiratory consultant twice and a respiratory nurse twice.

Respiratory consultant:

The consultant was not helpful, he did not ask me about my symptoms and on one occasion I had a chest infection and instead of giving me antibiotics told me to increase my fostair. I ended of work for a few days in the end. The only advice the consultant gave me was to stop working with people with COPD ( I'm a nurse specialist).

Respiratory nurse:

The nurse has been lovely, she has been the 1st that has gone through my symptoms with me however I have never been given an plan for my asthma. I was last seen in June and was struggling she wants me to see a Dr however my appointment for them isn't till the end of September.

GP:

Very kind but keeps asking me if I'm anxious at all as that may be what's making me unwell. I had a appointment yesterday with another gp becuase the last few days I haven't been well and using my fostair and salbutamol to the max . He told me the coughing isn't a sign of asthma !!! Coughing is my biggest issue!!!! He told me that I just had a viral infection and that I need to sleep it of (I wish I could sleep it off but I'm to busy couing non stop) He didn't check my peak flow and was trying to say goodbye and i asked what I should do about my inhalers and showed him my peak flow diary. Have one bee given prednisolone and he suddenly got concerned about me and said he wanted me to see me today.

As a nurse and as a patient I feel:

GP's and respiratory consultants dont't nescarly take people with mild asthma serious anough ( I have cared for 2 people who were only on salbutamol inhalers at home,that they rarely used then ended up having an asthma attack and needed to be on ECMO, ECMO is the resort.

I have seen the consequence of someone who asthma was poorly managed have a severe asthma attack that resulted in a respiratory arrest causing severe hypoxic brain injury leaving a 23 year old in a persistent vegative state.

There seems to be a lack of knowledge of the possible symptoms that people my experience I think these are really important.

I have never had my inhalers technique checked.

I strongly believe that anyone needing an ICS/LABA should not have their asthma managed by just a GP they should be seen by a specialist.

I also want to point out that people think that they see an asthma nurse at there GP practice the majority will not be see an actual asthma nurse they will be be seeing the practice nurse who runs an asthma clinic. The have knowledge in a range of conditions but are NOT respiratory nurse specialists.

I don't believe health professionals take into account the effects of asthma on a suffers life it is exhausting when your symtamatic and this can result in going off sick from work or effects template quality of your work as well as social isolation.

Getting Dr's appointments is impossible if your having an excerbation of asthma you can't wait to be seen by a Dr for a few days you need to be seen that day otherwise you will end up in hospital or dead.

I also believe that if you see a respiratory/asthma nurse you should always be given an action plan and that it clearly states what someone's symptoms are . It everyone gets breathless, chest tightness with a wheeze.

If your referred to see a respiratory Dr by the GP or respiratory/asthma nurse you shouldn't be waiting up to 3 months for an appointment, the are refering becuase you asthma isn't effectively managed. If you had been fined with cancer you would we see a oncologist with in a mandatory time period.

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Hallo, I was diagnosed with Asthma about two years ago. It was mild before but has got worse in this last year. It took them a long time to diagnose it as Asthma. My lungs are ok but they said something wrong with the bronchial tract - not working properly.

I have never smoked but grew up in a household of smokers so a lot of secondary smoke. Also at my grans home. But I think in my case the beginning or outbreak of my asthma had a lot to do with a period of one cold infection after the other. My daughters husband was a doctor working in a hospital and brought home a lot of colds and as they live in our house, in a self-contained flat, we had daily contact and the infection was usually passed on to us. Apart from that there is Robin, my granddaughter who was a test-tube baby and she gets everything going - not a good immune system poor little mite. We looked after her a lot while my daughter continued her studies so a lot of contact and I had one cold after the other, in summer and winter.

I take Salbutamol at the moment because I did not want to take anything with steroids if possible. I read about this sports person - a cyclist I believe it was, who uses this successfully. It does help but lately, I seem to have worsened especially at night when lying down. The coughing is so much that I usually get up until it subsides and take a puff of the Salbutamol. But am tired all the time.

At this point I would like to say that I do not live in Britain anymore. Am originally from St. Johns Wood in London but left home at the age of 21 to work for the French Consul in Berlin end of the sixties and met my future husband there and stayed. Have lived in this country for going on 49 years and speak German and sometimes French when visiting a cousin, on a daily basis, but hardly any English. I have forgotten a lot. Which makes it hard for me trying to understand a lot written on here and also all the abbreviations used. That make sense for someone who has had the experience of the disease a long time, but not so much for a relative newcomer like myself. Added to that I have a feeling that some of the medications mentioned have a different name in Germany.

I think that maybe Salbutamol is not enough anymore and that I need to find something else to relieve my symptoms. But it is hard to figure out the right medication for me. A doctor here prescribed a medication that had taken the place of one other before it, but they had changed it to a kind of powder in the inhaler and it aggravated more than it helped. I read at the beginning of the year that it did not agree with many people and someone wrote about people having worse asthma due to it and even someone dying or some dying. Excuse me for forgetting the name of it but not really important as would not take that one anyway.

I do not necessarily want to take something that is new on the market and has not been tested long enough yet. Many on here said they would have preferred to stay on the old product. I know through my daughter, who is a psychiatrist in Sidney, that Pharma often produces something more cheaply (but for us the same price) and not always best for the patient as while the main medication is the same it is often a different mix. They tell you the same, only it isn't really. I would like to try something that has been used for a long time and with success and if possible not the highest dose of it as I think that is not necessary yet. Sorry that I am explaining this so badly - I have forgotten a lot of my own language through lack of use.

It is like a jungle this finding the right treatment for oneself. As what is ok for one might not be for the other. Is it a trial and error thing that most have to go through until they find what is best for them? I have not heard of asthma nurses advising you here in Germany. There is only the doctor and a lot of them here do not really take it as seriously as they seem to in Britain. It is not as well organized. We here have about 5 minutes to explain our symptoms and then he writes something down with little else coming from his side. Little info. I am really at a loss what to do next.

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