Making asthma visible

Today my youngest brother published an article for the Daily Record. Out of all my siblings he has probably seen me at my worst. He has been there when I have been in tears because registrars cant get an arterial blood gas and they are getting stroppy because I kept flinching when they hit the nerve or worse the bone or visited me when I was in hospital down south and he was still a school boy. He has known about my passion for the issue of smoking on hospital sites as it has caused me so many issues and latterly when my asthma has stopped me doing more he has taken an interested in the work I have been doing to try and raise awareness about asthma and how severe it can be.

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It is a really hard read. Seeing everything down in black and white in one place about how asthma has controlled so much of my life. I feel bad that this article has upset so many. I know my mum was fairly upset as she has obviously been through it all with me and then Nick as well. He has lived with me and yet he didnt know or understand just how bad it can get.

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I know others who have asthma just like mine and have asked if it is ok for them to share this article. I want everyone to share it. If it can show people just how serious asthma can get then I want everyone to see it.

I have kept this blog for so long and written about how asthma has affected me, what being in hospital has been like etc but I never read back over my posts. Not one post has been proof read and thats how I like it. It keeps the emotion real and honest.

I am really proud that my brother has decided to take this on and try to help people realise how serious asthma is and that you cant always see the true effects that asthma has on someones life. It is sad that it takes shocking stories to highlight the devastation that asthma can cause.

 

Severe asthma- family and friends misconceptions.

I was asked to write this blog post by Asthma UK as their report about severe and difficult asthma has just been published and the statistics are shocking. Asthma is not taken seriously or respected, some people don’t take their medication as they are meant to for a variety of reasons but this can be fatal. Those with asthma and those who know people with asthma need to understand just how serious it can be.

I consider myself very up to date with the latest asthma treatments, ensure I taken my medication as I am meant to and when I am meant to. I ensure I step up and step down my medication as my symptoms ebb and flow according to my personal asthma action plan. Even with my diligence to treatment and keeping myself well it is sometimes no where near enough and asthma wins over you, leaving devastating consequences such as death, the need for life support machine, very toxic drugs to relax the smooth muscle int he airways.

I have lived with asthma almost all my life. Over the years it has progressively become more difficult to control and severe which has impacted my own life and also my families lives as well.

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To manage my asthma I am in the very fortunate to have a team of specialists at the hospital who work hard to ensure I am on the best medication and most appropriate treatment aiming to control my severe asthma as best as possible. Despite this support and regular contact with the team my asthma remains severe to the extent I was put in a medically induced coma and was on a life support machine just under a month ago. I am sure if I did not have the team of specialists then there is a high chance my life would be very different if I was to have a life at all.

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Having severe asthma has resulted in many life changing circumstances from the sheer number of medications I require to control my severe asthma but then also medications to treat or prevent the side effects caused by the medication required to help my breathing. I currently take a total of 37 different medications, 14 of them are for asthma and 23 are for the side effects mainly caused by years of oral corticosteroids. I have also had to give up playing sport, change my career and now have had to give up my career, but the biggest impact has been on my family and close friends.

Living with severe asthma most of my life also means my friends and family have also lived with it too. They see how I try to manage my condition day to day, witness asthma attacks, call 999 for me when I don’t have the puff to call them myself, watch as helpless onlookers while an ambulance, with lights flashing and siren going, takes me to hospital as quickly as possible to stabilise the attack and make my breathing easier and then finally visiting me either in hospital or once I am discharged home. They see all this as well as my determination to manage my asthma desperately trying to ensure it does not take over and dictate my life. Despite witnessing all the above they accepted that this is what my asthma is like and that is that. An assumption was made that my asthma is as bad as it would get and my breathing wouldn’t get any worse than they have all witnessed. They thought this because I am under the care of a specialist asthma team who I can phone for advice whenever I am struggling which in my family and friend’s eyes means my asthma cannot get so bad that I may have a near fatal asthma attack.

My brother commented that he had become used to my asthma and almost complacent about how bad it could be. He said he has heard me speak recently of others who have died from asthma or friends who have been in a very serious condition but because I now have such a specialist team then I would be ok. It was everyday life me having severe asthma with the potential for requiring hospitalisation. He had taken this as normal and accepted it. So events earlier in the month were a huge shock and wake up call for the whole family because they had assumed I was safe with my asthma because I have some of the best people in the country looking after me and my asthma.

I look back now and see how my family normalised me being in hospital and me going to ICU so often which is really shocking. Going to hospital often should not occur let alone going to HDU or ICU that often. In any other health situation or if this was one of my siblings then it would not be just run of the mill and would be a life-altering event for the entire family.

My best friend who has known me my entire life and has been through thick and thin with me, seen me have asthma attacks and visited me in hospital never thought asthma could get as serious as it did during my last admission because I was under the care of specialists. She could not understand how asthma could get so bad when you are taking the latest medication that is available and have access to a team of specialists. She said she had never seen me look so unwell and vulnerable, not being able to do anything for myself reliant on others for everything.

The new report about severe and difficult asthma, which has launched by Asthma UK, makes me feel so fortunate to have such a good team and access to specialist asthma services to manage my asthma. Even with everything I have available my friends and family don’t fully understand how severe and life threatening asthma can be. I am sure if I did not have access to the specialists then asthma would have killed me. Everyone who may have severe asthma or difficult to control asthma needs to have access to specialists to help them live the lives they deserve to.

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).

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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Smoking on NHS sites- it is STILL happening!!

I know many of you will think I sound like a broken record particularly as I have written several blog posts around the issue of the smoking ban on NHS premises. The first of my posts was back in 2015 on April 2nd. written after legislation was passed by the Scottish Government to implement a ban on smoking on NHS hospital sites. This came into force on the 1st April and must have been an april fool as it is still not been addressed. The links to other posts surrounding smoking on NHS sites are:

Over the course of time I have been in touch with various different outlets and services to try and get action taken on the issue of continued smoking on NHS sites. The situation for me has only go worse. It appeared that every day there were more and more people congregating outside the main doors of the hospital smoking. This could be a mix of patients, visitors and most shockingly people who worked in the hospital.

For me it got to the point that even coming to work half an hour early was not enough to avoid the people smoking. Eventually it made the choice on stopping doing clinical work easy as it meant I would not be putting my life at risk just to get into work. In fact the other week I had to go to the Royal for a ECHO of my heart, I called to have this rearranged because already feeling very chesty and unsure if I was going to need to be admitted, I saw this huge group of people smoking right outside the doors. I couldn’t risk going past. It may have cost the NHS some money by me cancelling last minute my appointment but it is far less money than the amount of money that would be required for me to go to A&E, +/- ICU, and the ward all because I tried to get into the hospital (a plan of safety I might add) to attend an appointment. In an extreme view the select patients that are smoking are preventing a group of patients accessing healthcare safely. What will it cost for this to be addressed.

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(Photo above was me after having an attack trying to get in to work a few years back)

Clearly legislation being passed in the Scottish Government is not enough. I am unsure why the issue is so much worse at the Royal Infirmary of Edinburgh than other sites in Edinburgh.

If the smoke did not have such a bad effect on my lungs physically I would go up to people and tell them they cant smoke there and they need to move off hospital property but that is just asking for a hospital admission for me. I think what makes me really angry and disappointed is that no one is willing to address the smoking issue.

I took the opportunity when there was uproar about parking and parking provision to use this to voice my concerns about the smoking. I got in touch with various MSP’s and had some great feedback from them and help from them however I am totally disgusted by NHS Lothians response. They wrote a letter to my MSP which basically says what they do just now is enough and no more can be done. What they said they have done is:

  1. Provision of support for patients, staff and visitors who wish to give up smoking
  2. Provision of advice regarding medication which helps manage nicotine withdrawal
  3. Promotion of education and training for managers and front line staff in the implementation of the policy

What strikes me with these actions is that it is all about what they are doing to help those that smoke nothing is there to help those who do not smoke and are being affected by those smoking. The actions are also leaving it up to the smokers to get the help. They are not actually doing anything to stop the smoking in places that are meant to be no smoking. The letter also sited the design of the hospital means that people are likely to congregate at the doors to smoke.

To say I was shocked, appalled at the letter is an understatement. The over riding emotion though was disappointment. My MSP had put that one of the reasons for me not working at the hospital just now was due to the issue of people smoking but this was not even mentioned in the response. There was a line that said they were sorry I felt the need to report this complaint and they apologise for the distress and inconvenience this has caused. Distress and inconvenience is an understatement- they clearly have no idea about what going to intensive care is like, what fighting for your life is like and knowing that the very place that saves your life is also the very place that could take your life too.

I have no idea what to do now. Will I be able to return to work in the hospital if this issue is not resolved? I don’t think so. I love my job, but I love my life (most of the time) and if doing my job is going to kill me can I really justify going back to work.

I will spend as much time as possible to try and get this situation the attention it deserves because there is no way it can only be me that is suffering. There must be hundreds if not thousands of other people being bothered by this.

Below are links to some posts I have written around about the issues I have dealt with to do with smoking and people smoking on NHS sites.

23 days on and its only got worse is a post I wrote 23 days after the so called smoking ban came into force. It appears to have only made things worse. I am not one for advocating smoking but the removal of the smoking shelters has made things so bad.

Returning to work in a fog of smoke is about returning to work after having an asthma attack as a result of second hand smoke. Reading it back I get quite emotional as I was struggling to accept that I had done nothing to myself to end up with lungs like this- often I wish I had done something like smoked as then at least there is a reason for my lungs being so bad.

Smoking on hospital sites reflecting back and just finding the issue getting worse and worse. Also thinking of ideas of things I could do that would maybe have some effect on those smoking that they would not like much like their smoke has on others.

Bad weather makes smoking worse

Passive smoking what does it mean

The NHS long term plan

Parking is not the only issue at the RIE

 

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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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.