No-one is immune from a near fatal asthma attack.

Once again asthma has been in the press for all the wrong reasons. Despite the National Review of Asthma Deaths (NRAD) in 2014 it appears nothing has got much better. It was announced that asthma deaths in England and Wales (Scotland was not mentioned) are at their highest in over a decade. Over the years I have always asked why, why does asthma kill, why is asthma not well managed.

Well the other week I was reminded just how bad asthma can be and how it can never be under estimated. If asthma wants to win it will win despite all you do.

All the weather we have had recently has taken its toll on my asthma control. I tried so hard to ensure I was listening to my body, and make any changes that it required to ensure my lungs and asthma were stable. I found it very tricky to know what to do because unlike when you have a bad infection or cold you know roughly how long they will last and how much to step up medication to keep your asthma in check. This time it was different, it was the weather than was making life hard but it was not consistent. In the morning I was finding the weather was very muggy and humidity high making it feel like I was breathing through cotton wool but as the day went on the air cleared and I found it a lot easier to breath when the humidity dropped. It was like this for several days in a row and then perhaps there was a day where the humidity was ok. This made it a bit of a conundrum as to how to treat my breathing as I was not convinced an increase in steroids was going to help.

I reached out and spoke to my asthma nurse specialist at the hospital on the Monday. She gave me a plan which I followed however by Wednesday I was really struggling so I reached out to my consultant and spoke to his secretary to get some advice. I felt like I was in that limbo phase. I had increased my steroids on the Wednesday morning as per advice I got on Monday. I was finding it really hard going but was not at the stage of needing to call and ambulance and go to hospital but I need some help. Long story short I couldn’t get through to my consultant and then it was too late for me GP and there was no appointments so I was seen by the out of hours Dr who then sent me up to the hospital. From then it went downhill and went downhill very very quickly resulting in going to ITU.

I am going to do a separate post about the ins and outs of what happened when I deteriorated but with this post I wanted to focus on the importance of getting help.

Initially when I got better I was going over and over in my head trying to figure out what I missed or what went wrong for things to go downhill so quickly and escalate beyond measure. But there was nothing. I could not have tried to get any more help than I did, even getting help earlier would not have made a difference because the days before I spoke to the nurses the weather was ok and my breathing was not too bad (not great but not awful). The advice they would have given me would have been the same and that was to increase my prednisolone if my peak flow got to a certain level which I implemented when it did drop.

I consider myself to be some who has a good knowledge of asthma. I know about as much as I can about the condition. I take my medication religiously and don’t miss doses ever yet I was still able to have an asthma attack which was considered near fatal. There is a big push trying to ensure that people take their medications as prescribed and be vigilant with their asthma. Asthma is a disease that needs to be respected it does not stop and wait for anyone. It is important to remember that just taking your medication as prescribed does not make you immune from having asthma attacks. Getting to know your asthma, what triggers it, and what actions to take are so important. Had I not known all I do I am pretty sure that I would not be here.

I would urge everyone with asthma to make sure they take their medication as prescribed, know what triggers your asthma, have an asthma action plan and know when to get help and who to get help from. This really can save your life.

(I will be doing a further few posts about recent events. One which I will have password protected as it will go into detail about events in ICU etc and I know some may not want to read it. IF you want the password please do message me for it).

A year on monoclonal antibody treatment

I can’t believe it is a year since I started on mepolizumab (mepo) a monoclonal anti body treatment to suppress my eosinophils in a bid to help my asthma. The big question is as it helped?

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I am not sure. My consultant seems to think it has and I am to continue on it. My eosinophils have dropped dramatically however I am still on the same maintenance prednisolone dose and we have not been able to reduce it down and I am no longer working just now. I was in clinic last month speaking to my consultant as I was having second thoughts about staying on mepolizumab because I cant see a huge amount of improvement but he feels it is worth staying on it and I have been approved to stay on it for the following reasons:

  1. My blood eosinophil count has come down (I’m not sure of the exact figure just now but we are checking again next month)
  2. My peak flow although overall it is lower than it was the variation in peak flow readings is no longer there and it is a lot more consistent- I cant complain about this as now I know where I am each day compared with before where the diurnal variation was huge.
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  3. Although I have had a near fatal attack and several others requiring hospital I have been able to recover from them a lot quicker than before. My consultant described some of my attacks as spectacular (Im not sure how I feel about that).
  4. Chest infections and colds have not quite taken the hold that they were before and again recovering has been a lot quicker.
  5. My quality of life is better (although for me I am still really struggling with the idea of not being at work doing the job I love).

Looking at the reasons my consultant listed I really cannot complain and can see that the mepo has had an impact. It has not had the wonder drug impact that I hoped for and that I have read many have had but I am alive and have a great team behind me so really need to be thankful.

I did some work a good number of years ago for Astra Zeneca where I met some other asthma patients. One young lady I met had their life totally transformed by Xolair going form being intubated numbers times, not being able to work and very disabled by their asthma to having a full time job and minimal asthma issues. I think deep down part of me was desperate to have this effect. I remember thinking after I was told I would start mepo that I might be able to get back to the gym, start running again and playing lacrosse and golf but that has not been the case which is a bit disappointing for me but I was told not to get my hopes up too much.

Even though the mepo has not been the wonder drug that was going to transform my life I am so grateful to my consultant for being willing to try it and keeping me on it. Apart for the hopes of it transforming my life I was worried about the side effects it might have. On the whole I have really not had any significant side effects. I have been finding I get a bit of a local reaction for about 48-72 hours post injection where the skin is red and hot. Initially when I first started getting the injection I did get a really bad headache, backache and just a general feeling of being unwell. After about the 3rd injection this went away. I have found that if I am a bit under the weather in the days leading up to getting the mepo then I tend to get more side effects in terms of headache etc but nothing that has been so bad it is not worth getting the injection especially as I am not having to get up and work set hours etc.

I have come across different stories on social media about peoples experience of biologics but one thing I have found is the number of people weighing up the travel for these treatments. When you asthma gets to the severe end of the spectrum most are referred on to a tertiary centre where their care is managed and their local hospital is there as a support team but do not take the overall control of your management. There are not many tertiary centres so there is often a lot of travel involved. I am lucky that Id not have a huge distance to travel but I think even if I did I wouldn’t mind because I know the team are doing it in my best interests and the least I can do is travel although it may be more difficult when you factor in that you do have severe asthma which is already controlling your life but if there is a chance that this is going to help then the travel is worth it!!

Another discussion I had with my consultant was about new biologics that are coming out. He is hopeful that dupilumab may have its use altered and some asthmatics may qualify for it. Just now it is only used in adult eczema in the UK but in the States there have been people on it who have aspirin sensitive asthma which is what I have except that I am anaphylactic to aspirin and salicylic acid so fingers crossed this gets a green light at some point as we both think this might work well for me.

The use of these monoclonal anti body drugs is dependent on such specific criteria and the patient needs to meet them and the consultant needs to be able to provide evidence for it before you get the green light. Because of this many are not getting the opportunity to try it and see if it has an effect.

For me I did not match the criteria for blood eosinophils but my consultant was able to argue the case. He was able to show that the prednisolone I am on will be surpassing eosinophil production and if i was not on it then my count would be elevated but it is too dangerous to take me off them or down a significant amount just to get the blood result. I would say it is worth asking your consultant to see if there is potentially a way to justify why you need to try this treatment and then be approved for it. It is so frustrating that a drug you are trying to get off is the main factor to many not meeting the criteria, but if you came off it then it is so dangerous as your asthma can go so out of control without it. I can see why they have strict criteria because the drugs are really expensive as they are such targeted drugs but in time they will drop in price and hopefully the criteria for the drugs will also be more flexible too.

Overall I am glad I have had the chance to try mepolizumab and being able to stay on it. If I had not changed consultants I doubt I would even be considered for it which is a scary prospect as I have no idea where I would be with my health.

If anyone has questions about monoclonal antibody treatment please ask!!

Are asthmatics who post on social media one reason why asthma is considered as “just asthma”?

How often do we read or hear that asthma is “just asthma” and an inhaler will fix it all. Everyone knows someone who has asthma but not everyone knows how bad asthma can be and that it kills people. 3 people die each day in the UK compared to the 10 across the United States. I am not saying that 10 is acceptable but compared to the UK it is far better. In fact the UK has the worst asthma death rate for a developed country.

The big question is why do we have such bad statistics?

We have the National Health Service, Asthma UK, 2 dedicated research centres- the Asthma UK Centre for Applied Research and the Asthma UK Centre in Allergic Mechanisms in Asthma which is providing asthmatics with cutting edge technologies and trying to get a better understanding of asthma, the different types of asthma and best ways to manage it. Despite having all this, asthma as a condition is horrendously underfunded when you compare the funding given to cancer or heart disease. Asthma is way more prevalent yet still not fully understood. To begin to understand asthma, and the different phenotypes (types) there needs to be a huge input of money much like there is for other conditions.

Why is money not being given to improve outcomes of those with asthma? 

I believe that we as asthmatics have a role to play in this specifically the role that we play on social media. Over the last decade social media has exploded. Everyone (although there are some exceptions) uses social media of some sorts wether it is Facebook, Twitter, Instagram or LinkedIn. It is used for both social and professional use and although there are some restrictions in place you can post pretty much anything and it can be available to most who are looking for it.

I use social media in a number of different ways. Through Facebook, Instagram and my blog I can share my advocacy work and awareness about the condition, how I deal with it both the negatives and the positives, and also new medications that are coming out as well. Twitter is an excellent vehicle for knowledge exchange specifically for research as you can share snap shots of what is happening and not need to search a website and read through screeds of stuff.

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On Facebook one of my roles is that I moderate and administrate several support groups for those with asthma, severe asthma, difficult to control asthma etc. I feel very honoured that I have been asked to become a member of the admin team for these groups however it is tricky. Many of these groups can be accessible to anyone who wants and people can post what they want, equally they can post what they want on their own pages too. I believe this is where asthma or more specifically asthmatics get a bad reputation and unfortunately when someone reads something in one place then an entire groups can be tarnished with the same brush.

What am I actually talking about? I often get into trouble or arguments with people because they are not acting responsibly and not taking their condition seriously. This would be fine if they were keeping this to themselves but many are not, instead it is being shared on social media. For example:

“my breathing is really bad and having to use way more nebulisers than I should so need to go to hospital but I have stuff to do first”

This type of thing I come across on just about a daily basis and it makes my blood boil. We have a role wether we like it or not to take our asthma seriously and get help when we need it. Part of me feels that anyone on the outside seeing this would think why should be invest lots of money in asthma when those with asthma are not being sensible with it.

I firmly believe if you need to get help you need to get help, a shower, shopping, housework etc can wait. If you don’t wait you might not be there to do it in the future. No one likes going to hospital and many with severe asthma spend a lot of time going to hospital resulting in admissions and plans changing. It is not ideal but it is what it is.

I have had 2 friends die from asthma and know of many others through my work with Asthma UK and being involved in support groups that have also died. For some of them the reason they died most likely could have been avoided had they got help when they first started feeling unwell. I am sure if I was able to ask them they would say they wished they got help sooner as they might still be here now.

I use the examples of these 2 friends in response to comments people leave like above. This will often cause many to get angry with me but if you are unwell you need help there and then. People do not see this and expect sympathy and attention but if you do not act responsibly then you are not going to get sympathy. If you really want to live then you need to go and get help. There have been times when I have just wanted to pretend asthma is fine and I don’t need help because I have something on and don’t want to miss it but then I think of Dawn and it jolts me back to earth forcing me to get help.

Wether we like it or not we are ambassadors for the condition. The outward projection we give I think has a large part of why asthma is not taken seriously. I am blunt and will say to people that if they want their asthma to kill them then they are going about it the right way. It is very blunt but it is the reality.

I know for sure there will be people who read this and have posted irresponsibly  who will be angry. I do care that they will be angry but at the same time I don’t because what we post on social media can influence others with asthma who may be new to the condition and they don’t know any better and think what they read is ok to do. Remember asthma can kill anyone not just those with severe asthma so those new to the condition may see stuff and think because someone who has had asthma longer than they have must know best and it is ok but it is not. We must lead by example and if we are not going to then we must keep this private and to ourselves.

So how much is social media playing a role in the reputation that asthma has. I will continue to try and get people to understand why asthma must be taken seriously and that when you need help for your breathing you need help and should not go and have a shower etc first because you think this is the priority.

I am an ambassador for asthma as we all are. Asthma needs to be respected much like other chronic health conditions are and it is not acceptable to post irresponsibly on social media for others to see and be influenced by. We desperately need more funding to understand asthma better and if we can do our part to help achieve this we might get there quicker than we are now.

Rant over but bottom line is: social media can be toxic in how people view asthma because of what those with asthma post for the public to see.

RIP Dawn

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Pollution and its effect on my asthma

It is well known that pollution makes asthma worse. There has been a lot of information in the press about this and how there needs to be low emission zones in major cities to try and increase the air quality. Recently an inquest ruled that the death of a young girl from asthma was due to pollution exacerbating her asthma which resulted in an attack that killed her. It is scary to see just what pollution can do.

I can see the effects of pollution on my own asthma. Since getting my smart peak flow meter I have been able to track my peak flow for a prolonged period of time. Previously I have always done my peak flow but did not record it (mainly because I am lazy and printing off a peak flow chart on paper was a faff and when I did print it off it would get wet as I keep my peak flow etc in the bathroom with my medication so I just gave up) so having the result blue tooth to my phone has been great.

I have had to ability to print off the charts month at a time or even week at a time if I want. The most useful thing I have found by doing this is the ability to identify points where my peak flow may have dropped or increased and then refer to my diary and see if there was anything that may have caused the dip.

For example the picture below shows my peak flow. The 2 yellow arrows mark when I went to London which shows a significant drop in my peak flow which then increased again once I returned home to Edinburgh. This drop was despite wearing a carbon filter mask to try and protect myself as much as possible.

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I am not sure what else I can do to try and protect my lungs from the pollution in London other than not travel there. The mask I use is high grade, I take my medication, I also try to make sure the windows are shut and I am outside as little as possible so I am not breathing in too much toxic air.

Conversely to this I was recently up in Thurso- just about as far north in mainland Scotland that you can go (except Dunnet Head) where pollution levels are very low I noticed my peak flow actually increased. Perhaps a combination of being at the far north of Scotland, away from major roads, away from major cities with large amounts of traffic and being right on the coast with sea air (sea air has historically been promoted as good for the lungs- it might be an old wives tale).

The chart below is my peak flow and the yellow arrow is when I was up in Thurso.

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I think from this I can clearly see the impact of air quality on my lungs. Edinburgh is a real mixed city as there are some areas which have horrific levels of pollution and other areas that are not so bad. I am fortunate in that I live fairly near the coast and not right in the city centre but it is still fairly polluted where I am.

What steps can I take to improve my lung health and avoid pollution?

  1. I would love to move away to the country somewhere near Loch Tay as I love it up there and the clean air would really benefit me. There is little traffic and no big industrial sites near by. Unfortunately due to the nature of my asthma this would not be feasible as there is no major hospital near me so if I was to have an attack it would be a long wait/trip to get help and to a hpspital
  2. Try and ensure I wear my mask when I need to so I am breathing the best air I can. Despite having a complex about wearing my mask I need to protect my lungs at all costs and if this means wearing a mask then I must.
  3. Keep an eye on the pollution levels and act accordingly. If I know the pollution levels are rising I should perhaps increase my inhalers to counter act the symptoms I may get (I will check this with my team before acting on this).
  4. Get out and about as much as possible down to the coast to breath in good clean air and not stay stuck in the city all the time.

Essentially there is no easy way to avoid pollution but I can see the detrimental effect pollution has on my lungs via my peak flow results. It would be wrong of me to recognise this and not act on it. I must get a plan and put it in place to protect my lungs from more damage which breathing in toxic air might do.

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(Me on the left wearing my Cambridge mask while in London at the Asthma UK Centre for Applied Research Annual Scientific Meeting)

SMC approves Benralizumab (Fasenra)

Today was a big day for many Scottish people living with severe asthma. Many of us live day to day taking medications that do not fully help relieve our asthma symptoms and keep our asthma under control. It can be very frustrating and scary to live day to day not knowing how you will be.

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In the UK medication approval is not universal. England and Scotland have different groups which approve or reject medications which could become part of the NHS formulary making it available to patients.

England have NICE- the National Institute of Clinical Excellence. NICE approved Fasenra earlier this year meaning it was available to patients who fit the criteria for it. However in Scotland we had a longer wait meaning many with severe asthma have been able to see the positive effects this drug has had on people in England knowing that they are not guaranteed it because the Scottish Medicines Consortium (SMC) has to approve it. The last monoclonal antibody Reslizumab was approved by NICE but rejected by the SMC so many were waiting with baited breath today to see what the SMC would do.

It was a huge relief today when I got a phonemail from Asthma UK to say it has been approved. This means there is one more drug out there for those with severe asthma to try and hope that it will be their wonder drug. The weird thing with monoclonal antibody treatments (aka the mabs) is that they work for some and not for others. Just because you qualify for them through your IgE or eosinophil count does not mean that it will make a difference. This leaves many feeling lost and wondering if there will ever be a break for them from living with daily symptoms struggling to breath something no one should ever have to do.

The below is part of the press release from Asthma UK which I contributed to about the impact that severe asthma has had only life and what the approval by the SMC means:

“My severe asthma leaves me gasping for breath, exhausted and unable to even walk down the road. While I’ve had asthma all my life, it worsened as I got older. I had no choice but to take long-term oral steroids at a high dose which has left me with terrible side effects including osteoporosis. I used to be sporty and had my dream job as a nurse but my asthma got so bad I had to give it up. This new drug could transform my life allowing me to get back into work and regain my independence. It’s high time that severe asthma was taken seriously and that everyone who needs this kind of drug is able to get it.”

I was also interviewed for the radio which went out across Global Radio Networks this evening which was also focused on living with severe asthma, the effects medications to date have had on me and what Fasenra could mean for me and many others like me.

I am really proud to have been able to share my story but also that there is light at the end of the tunnel for others. It finally feels like severe asthma is being recognised. It seems that asthma only makes the headlines when a young person dies from an attack which is catastrophic but asthma should not be in the headlines for this, this should not even be occurring but it is. Despite this asthma is not being recognised. Hopefully there will be enough coverage about the approval of Fasenra in Scotland and how many people it may benefit from it that asthma may get taken more seriously and there will be more funding available to help those with severe asthma whose lives are being dictated by a condition that is so misunderstood despite their own and their medical teams best efforts to control it.

For me I had hoped mepolizumab would be my wonder drug. I still hope that it will be but I am not sure. I am still reliant on oral steroids and not able to reduce my maintenance dose, I have had to give up work, have also recently decided to step back from some of my lacrosse commitments all because of my asthma. My best efforts to control it are not enough but there are limited medications available to me that I have not tried which could help me. With each new drug that is approved there is that little bit more hope that one day my asthma will no longer dictate my life and just be a part of my life that does not cause me any problems.

My HealtheVoices19 experience!

Last night I was catching up on reading some blogs and came across one that was written by one of the other people who attended HealtheVoices (HeV) who opened her blog post with my exact thoughts. She had been drafting and redrafting posts about her experiences of HealtheVoices and not knowing quite how to write it. She came down to the point of just getting it out and putting it down in a post. So this is what I am going to do as well because like her I have been going over how to write my experience and then rewriting it and never being happy or knowing quite how to word it.

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So here goes…

Leaving the UK to go to Dallas was a mix of nerves and excitement. The lead up to the HeV event was so positive and the support from everyone was there right from the start so I was feeling at ease but also felt a little is this really going to be like this once I am there too. A small hiccup at the airport but I was soon at the hotel and getting ready to settle in.

There was no real plans for the Thursday night. There was dinner but it was a buffet and you could just go down and eat when you wanted. I am never very good at these things and went downstairs several times with the intention of going in to the dinner room but I kept bottling it so would head back up to my room. I was too nervous, and tired because I was still on UK time and had been up for about 24 hours at this point, but I needed to get over jet lag so I could enjoy the conference without crashing, so I forced myself to go in and join a table. I am so glad I did go down. The slight awkwardness of plating my food and all the time thinking which table should I ask to sit at, who won’t mind if I join them, there was 101 things flying through my head but actually some of those who I had my first meal with in Dallas are also the ones I had my last lunch with as well. I did have that bit of security with me at dinner though- I had my name badge/lable/neck thing so anyone I met knew my name, knew I was speaking but also knew that it was my first time attending the conference.

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When I have attended conferences in the past I have felt at ease, and with each conference I attend and speak at I feel more confident but this was different. When I have spoken at conferences I have been there and what I am speaking about is my specialist interest and my experience, I tended to be the patient giving my opinion of essentially being an expert patient. This was a different ball game. Everyone there was like me, we are all experts at living with our own conditions and doing our own thing to raise the profile and difficulties we face trying to live a functional life.

I have never really thought of the work I do with asthma as advocacy, I actually didn’t like the word advocacy but attending HeV I came away feeling that maybe it was and I was an asthma advocate. People often ask me what drives me to do what I do, how do I come up with content, ideas etc. I never really know how to answer because I have never thought about why I do these things. I just do it because I hope that by sharing my story maybe people or even just one person might be able to take something from it and their experience will be a bit easier.

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It sounds cliche but after my initial nerves everyone was so welcoming at the meeting. Wether you were a first timer or had been at all the HeV meetings in the past everyone was on the same level- we were all there for one reason. Everyone there is motivated to help make a change. There was a variety of people who have had a condition all their life, then some with conditions that vary, go into remission or are cured from it but through their experience they are sharing knowledge gained, experiences which were good or bad.

I still really am struggling to put into words all my emotions from the meeting but I think the photos speak for themselves.

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So where do I go from here??

I have a few projects that I would like to pursue the most pressing one is to try and get rid of all the stock images media outlets are using which are subconsciously promoting poor inhaler technique. Almost every day I see a photo being used on a media article which shows a child or adult using a MDI (metered dose inhaler) with no spacer and even though there is no spacer the technique is not good either. In the UK there is an inherent problem with asthma management and self management resulting in high death levels from asthma attacks which can be prevented. One of these preventions is correct inhaler technique.

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And a last disclaimer:

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Just use appropriate pictures!!!

I really can’t believe its been a week since I got back to the UK and Healthevoices is over. I still can’t put into words how I feel about it. It was nothing I could ever imagine and really can’t put it in words. It was truly fantastic.

Before I settle to write about the HealtheVoices experience there is something that was posted recently which has really caused a lot of uproar.

Asthma hits the headlines for all the wrong reasons all the time. Normally it is the number of asthma deaths that are occurring hits the headlines which shockingly is at 3 every day in the UK and 11 in the US everyday. Way way to high for a condition that is fairly common but equally under funded.

One of the reasons given to the poor asthma death rate is poor asthma management and poor inhaler technique. There has been a massive push recently in primary care and secondary care to ensure that patients are taking their inhalers when they need to but not only when they need to we need to make sure they are being taken correctly. Unlike tablets which can only really betaken on way, or injections again which when subcutaneous you can’t go massively wrong however inhalers is a whole new board game. The sheer number of different types of inhalers then the need for multi tasking when taking them as you need to breath in, spray inhaler, then take it and hold your breath. There is not enough time given to assessing the type of inhaler which will be best for the patient and suit their needs. Especially the younger people and again older people due to dexterity issues. Even being young, fit and with it taking an inhaler correctly can be hard.

I like to think my inhaler technique is pretty good. I do and have been told on occasion that my technique specifically using my MDI (the traditional spray) inhaler is not quite right. I was even told at an asthma research meeting by one of the Dr’s there my technique was questionable but he said he let me away with it as I was about to go on stage to speak in front of about 150 people. But it shows that even those who can have good technique can slip when not concentrating 100% on what they are doing.

Asthma nurses, dr’s, patients and researchers on twitter were in uproar after the below photo was posted by the National Institute for Clinical Excellence (NICE).

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This picture is a complete 101 on how not to take your inhaler. Everything about it is wrong. Quite rightly everyone has been very annoyed by the main centre of excellence for health in the UK getting a photo so wrong. They have clearly not taken any time over selecting a picture or thought about the impression it is going to have on anyone that sees it.

This is not a new issue. Every week there are photos printed/posted relating to asthma which do not show good inhaler technique or even a technique which is relating to the current guidelines. It seems that everyone has their image bank and go to that, select a nice photo and that’s the one that is used.

I have and I am sure many others have come to the conclusion that the image banks have not been updated and are all out of date and not in keeping with current best practice.

As a result of this I have decided to try and make a change. I want to update these image banks and have a wide range of photos, some of older people using their inhaler, some younger people, a mix of devices as well but the key thing is to have the photos which display the current best practice.

I have been very fortunate to have so many people come forward to help with this so I am keen to get started. I have never done anything like this before but the hope is there will be more photos like the one below and zero photos appearing similar to the above.

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