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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Getting it right for a newly diagnosed asthmatic.

Having a conversation with a friend this evening and I was so shocked to hear about her recent experience being diagnosed with asthma. A prolonged cough, wheezing and breathlessness the GP was unable to get on top of things so she was referred on to the hospital to see what was going on. Lung function was not too bad but a very high exhaled nitric oxide test resulted in a diagnosis of asthma.

My first thought was that it was good as she had been started on a preventer and reliever. I didn’t think to ask anymore questions really. She was finding her chest much easier after using the preventer for a few weeks and had very little need for her reliever.

I had made the assumption that once diagnosed she would be given asthma education, told about what signs and symptoms to look out for, what to do should you feel unwell and above all be shown how to take the inhalers both of which are meter dose inhalers (MDI) or the skoosh down inhaler that most people will think of when they think inhaler.

Anyway tonight after a quick question I discovered how badly the diagnosis and management was done. I realised that no asthma education was done, no inhaler technique and she had to ask for a spacer to use her inhaler with as one was not prescribed in the first place. I was horrified that she had not been shown how to take the inhaler. It is an MDI notoriously the most difficult inhaler to get the correct technique and the correct dose into the lungs!

It is so shocking that still new people are being diagnosed with asthma and not given the correct education or support. I am more than happy for friends and anyone really to ask me questions about asthma but surely it should be the asthma nurses or GP’s that give this information when diagnosing. Asthma is in the press enough just now as the asthma death statistics in the UK seem to be getting worse not better and it is among the mild to moderate asthmatics who are dying and most likely due to one of a few factors:

  1. poor inhaler technique
  2. not regularly taking there inhaler as prescribed
  3. not knowing the signs to look out for and take action when asthma control is deteriorating.

I keep going that the research being done will soon filter down into actual practice and asthma management will change. Time spent at the start can help reduce work load in the long run.

Asthma UK has a variety of different documents that can be downloaded to help asthma management and there is no charge so really there is no excuse for people with asthma to not be given the asthma action plan personalised to their needs.

Basic asthma care is essential is we want to achieve the aim of zero tolerance to asthma attacks.

 

Asthma in the news

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Asthma has been in the news a lot recently, most of this has been reports on how awful the asthma care is for those with asthma in the UK.

It is not all negative and there has been the odd positive bit of reporting such as new drugs being developed or gaining approval for use from NICE or the Scottish Medicines Consortium.

Most written reports both negative and positive have one common theme which is the use of pictures. These pictures are not promoting good inhaler technique as there is a lack of spacer which is recommended in guidelines produced for asthma management. For anybody no matter how young or old when using a MDI (metered dose inhaler) inhaler also known as a puffer should be using a spacer device to ensure the medication in the inhaler gets into the airways and work where it is needed. Using an MDI without a spacer will often result in the medication being left on your tongue or the back of your throat and not in your lungs. The spacer will prevent this.

Asthma is so misunderstood as a condition. It is essential that media outlets use images which are in date and reflect the current recommendations made by SIGN, BTS or NICE who are the tasked with developing pathways for asthma management. The media using images which reflect correct technique won’t drastically improve the horrendous asthma statistics in the UK but it will make people more aware of the use of a spacer along with their inhaler rather than the inhaler on its own.

Small changes like this can help influence bigger changes in the future. If inhaler technique is correct then the lungs are getting the treatment they require to prevent the asthma from flaring up and therefore will in turn reduce asthma exacerbations, hospital admissions and even asthma death.

Please share this post as it is vital that the media start using new photographs with people using inhalers as recommended in current guidelines.

Having the support of your GP or Asthma Nurse

Having had asthma basically all my life one thing I have come to realise is the importance of your relationship with your GP or asthma nurse. For many they are the front line for you and your asthma care.

I am so fortunate to have a GP who is really understanding and although she finds my asthma baffling she will listen to me and help me when and where she can. Little things like making sure my medications are prescribed correctly, I get my flu jab etc. They also have various flags on their file on the system- this helps so much.

Many dread the phone call into the GP to try and get an appointment because their chest is not good but you have to get passed the gate keepers- the reception staff!!! Before the flags were on the system I used to have great difficulty trying to explain the importance of being seen promptly because my asthma goes off so quickly. It was a nightmare- I understand why they need to do it as appointments are short for the number of patients that need to be seen but when it is asthma it can be different.

After a bad experience not being able to get an appointment on the day because the reception staff thought it could wait, I ended up in hospital! During my follow up appointment with my GP which because I had been in hospital I was able to arrange via the reception staff, my GP was slightly irritated at me not being seen as it is important and could prevent hospital admissions.

Since that follow up appointment there is a flag which says if I am phoning in about my asthma I am to be seen by either my GP or one of the nurse practitioners who know my chest very well. There is also a flag that if I say I need antibiotics I can have a phone call rather than appointment and a final flag that if I feel I need to go to hospital they are to call the respiratory reg on call and arrange this.

Having these flags has made such a difference and offered a sense of security as I know if my asthma is bad then I will be dealt with urgently. Obviously if I call about something else I would need to wait just like everyone else.

I realise I am very fortunate to have all this set up. I wanted to highlight it so that others can ask their GP surgeries about this to help them manage their asthma better as it is a huge stressor when you asthma is bad and not able to get the help. Something so simple as a flag can make the world of difference.