The Asthma UK and British Lung Foundation Partnership

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Back on 10th December the news hit the headlines that Asthma UK  are to merge with the British Lung Foundation (BLF). It was met online with mixed reviews particularly by fellow asthmatics. I think there was a concern that asthma as a condition might get lost because the BLF covers such a wide range of conditions but this is where the partnership comes in. Asthma UK will still be just that for asthma and the BLF will still very much focus on its conditions. The partnership will mean that some costs can be merged and each charity can release that money approx. £2million each year to go where it matters most- to help us who have lung conditions.

I was a member of Asthma UK in its previous incarnation “The National Asthma Campaign” and was part of the “Junior Asthma Club” (JAC). I remember getting the news that The National Asthma Campaign was to change to Asthma UK and wondering what it would be like. Would the children and young person’s part of AUK be as good as the JAC (bearing in mind to me the perk of the JAC was the balloon, pencil and newsletter you got quarterly as this was pre social media)? Kick Asthma was just as good- if not better, there was a message board and kick asthma residential camps!! When I first heard of the planned partnership I did wonder what this would be mean but have been reassured that it is going to be a good step.

From what I have read so far the following will remain: the nurse helpline, the research programs and the website. The nurse helpline and Whats App service is a huge asset to Asthma UK that really sets them apart from others. I have used the helpline and found the nurses so helpful and reassuring. At first I thought maybe my reason for phoning was stupid but was put at ease and was glad I called and spoke to someone instead of googling!! Things like this will remain.

What benefits other than releasing money will the partnership bring? Due to soaring costs and being a relatively small charity Asthma UK could not sustain running their main office and then satellite offices in Scotland, Wales and Northern Ireland as well as funding the research and support for those with or affected by asthma. It was a hard time hearing that the satellite offices were to close but this new partnership offers the opportunity for bases to be built in Scotland and Wales again through infrastructure already established by the BLF.

It is a really exciting time and I am really pleased to be involved in so many projects with AUK and separately with the BLF too (I joined their patient involvement group quite a while back). Everyone knows someone who has asthma or lung disease yet both charities are chronically under funded. If only we had the same money that Cancer Research UK or the British Heart Foundation has then we might be able to make headway in conquering lung disease but this partnership is a step forward to save some more money that can go back into helping us.

What is going to happen next?? We will need to watch this space but in the mean time I need to prepare and think about what I am going to do for my first week of The Blow It Away Challenges.

 

 

2019 the good, the bad & the ugly

With the new year fast approaching I like to reflect back on how the year has been and what I have achieved. Last years post can be found here .

My thought for 2019 was:

2019 is going to be a great year, a year to focus on achieving the best health I can and enjoy life again. There will be hiccups, there will be hospital admissions but rather than feeling defeated by this I will accept them as part of my life and ongoing management!

Well I guess some of it is correct but I am pretty sure when I wrote that I did not think I would be in the position I am now in, it has not been all bad though!

I have focused on trying to improve my health. I made decisions and took steps I never thought I would to really put my body first. I gave up working in the hospital to try and get my breathing better. To start with this was going well but after a few very traumatic asthma attacks my life has been changed and Ia have been left with more permanent damage and had to come of biologic treatment as a result. I am working hard though to over come this. I am determined I will get my independence back and be able to walk without a stick. I may not get the feeling back in my leg but I can work with this. Along with work I decided to not travel to various things mainly lacrosse because I felt I would not be supported and I would not be able to prioritise myself.

I have continued coaching lacrosse at schools, universities and with Scotland. I gave up working with the senior team and focus on working with the goalkeepers in the U19 set up which has been so rewarding. The U19 also brought me all sorts of things back from their World Cup which I was gutted I couldn’t go to- mainly due to poor communication from the seniors letting me think something different but then it turned out I was in hospital too for it. I am looking forward to this year and being back with the U19 Scotland team. I am still coaching at schools and picked up a 2nd team at Edinburgh University so now coach the 2nd’s and the 3rd’s. I am loving coaching and find it so rewarding.

Research and advocacy as always has been a big part of the year. In fact travelling to a huge advocacy conference in Dallas was life changing. The HealtheVoices event was something else. I loved every minute of it. I made so many friends and realised that I am not alone in what I am trying to achieve. Speaking about your own experiences and how to navigate living life with a chronic health condition is beneficial for others. You can make changes even if they are small. I will be forever grateful for my time in Dallas. I also had other events where I was presenting including some pharmacuetical internal events, wider NHS events where I made some great friends and we are going to try and pull off some great things this year, went to Madrid for the European Respiratory Society Congress where I had a poster accepted for the patient day, presented a poster at the AUKCAR ASM as well as some other virtual events too. It has been busy and I think will only get busier this year. I have been able to write for a pharma company who have a website called Life Effects where I can write articles about my experience of living with severe asthma. Off the back of HealtheVoices I became a PEARLS Ambassador through the work of Rick Guidotti which has been great and have got to know some of the other ambassadors too.  So far I have several events planned for 2020 that I am speaking at and I am sure there will be more as the year goes on.

The biggest part of this year has been getting Ghillie. Ghillie has been life changing. I cannot believe that I got him in April. I cant imagine life without him now. He is achieving so much and is always there for me. I will do a post just for him to update on how he is and what he is doing. I never thought he would be as good as he is now. He can be a total monkey but then when I am not feeling good or am struggling he is there to comfort me and help me with things. Topping the year off with him being a feature in a newspaper article all about what his role is as my assistance dog.

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What are my hopes and aspirations for 2020. I want to continue as I have with 2019. Focus on my health and do what I need to do to ensure it can be the best it can be. I am sure like with 2019 there will be hospital admissions, hard times, illness, frustrations but I can over come them. I just need to be patient and work my way through things. I want to grow my toolbox of skills that I can use to better myself and use my experiences to help others. My friendships this year have suffered a lot- mainly because I have struggled so much and been so unwell that I cant attend things so I end up bailing on friends and they get bored with me always cancelling so don’t invite me to things anymore. I want to try and change this and make a real effort to go to things. I value my friendships so much and don’t want to lose anymore.

2020 is going to be a year of positivity, focusing on finding my best self and feeling content with life.

I hope everyone has a fantastic 2020.

Live the life you want to live.

Why does a journalist want to do a feature on his sister with asthma??

Recently I shared a link to a story my brother wrote. It was about me living my life with severe asthma.  He is a journalist with the Daily Record and is doing some pieces on asthma, smoking on hospital sites (one of my hobby horses) and some other things.

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(I apparently don’t have many photos of us together so this will have to do. Taking me off the ward when in hospital. I was lucky to get back to the ward alive with his driving of the hospital wheelchair!!)

I wanted to ask him a few questions (it turned out to literally be a few) on why he wanted to do a piece about me and my story of living with severe asthma. I am really proud of him for doing this especially as asthma is destroying so many peoples lives yet asthma is dismissed and not thought to be that serious by the majority of the population.

Below is his answers to my questions!

Why did you want to do the piece?

Without a doubt it was from seeing what you have gone through over the years, particularly in the last few when I have been around it more. It’s really not a well-understood condition from a layman’s point of view. People just think it’s ‘a bad cough’ or getting out of breathe when you play sport, but nobody sees the sinister way it can affect someone’s life.

Health stories are such a massive and important part of the media, particularly in how it can help activism and help push the conversation surrounding policy. I don’t think asthma gets the coverage it deserves. Talking to people who face a daily struggle with illness and putting their journeys in the public eye helps others open up and deal with their own conditions. But asthma suffers don’t have that voice like other illnesses like cancer or MS. Obviously as your annoying wee brother I have seen you at your best and worst with asthma, and it’s so inspiring. I wanted your journey to help others above all else.

On the other hand, it was so important to include the work you do behind the scenes for Asthma UK and other charities. Covering topics like correct techniques for taking medication and attitudes towards asthma help stimulate conversation, even on a day-to-day basis, from a light natter over Sunday lunch to discussions between health professionals.

How did covering the story affect your understanding of asthma?

Without a shadow of a doubt the amount of medication someone with severe asthma – and knock-on conditions – must take on a daily basis. I knew your asthma was bad through years of hospital visits and attacks, as well as using it to my advantage to beat you at golf (still not sorry). That hit home in a big way when you were placed on a ventilator recently – it was actually what prompted me to want to do the story. So I guess you could say that I knew how bad it could get before doing the piece, but only just before I sat down to write it.

But the medication routine was what really hit me hard. The sheer volume of treatments you have to take every single day was staggering, and shocked many of my colleagues. Knowing how you still get on with your life, throw yourself into activism and sport wherever you can, makes that even more staggering. To be taking 38 treatments daily at the age of 33 is mind blowing. I think getting that across to people really helps them to take it just as seriously as other, more talked about conditions

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.

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 a rare disease??

On the 29th February there was an awareness day for rare diseases. Asthma is one of the most common rare diseases out there. Its rare in its own very special way. It is not in the same category as some of the obscure disease like EB or Battens which are rare due to so few people suffering from them.

You may think asthma is not rare.

One in twelve people suffer from it, every day 3 people die from it, every hour someone is admitted to hospital having a severe asthma attack…so how can it be rare.

I class asthma as rare because despite the prevalence of asthma it is the most complex and poorly understood condition around. Academics spend careers trying to find a cure for asthma, or a new medication to help in the management of asthma but they often never fulfil those ambitions. It is not through lack of trying but due to a lack of funding and awareness of what actually is asthma and what can it do to people.

The common misconception is that a blue inhaler is all you need and all will go away but this is so wrong. Attitudes need to change. Despite the huge numbers of people who suffer from asthma there is the least amount of funding for it. In the research world it is not a sexy enough condition to warrant huge funding grants yet it can be just as devastating as someone who has cancer. The difference being that with cancer there is the option of surgery, chemo or radiation but for asthma there is none of these things. There is nothing that could potentially make it go away. I am not trivialising cancer as it too is devastating but from the outside there are some options to some patients but for asthma it is all about management not cure.

For many with asthma fortunately they will go large periods of their life without much bother from their asthma but there are those who fight each day, have a strict regime if medication to keep well, have to avoid certain things and adapt their lives to fit their asthma.

What is it that needs to happen to make asthma be noticed, and the general public take note and start fundraising, or insititues allocate as much money to asthma research as they do cancer, stroke or cardiac issues.

I long for the day where people stop saying I know someone with asthma they just have a blue inhaler and thats all you need. I get frustrated with people who drown themselves in perfume and then say they are feel asthmatic, they have no idea but sadly until even those with asthma take steps things are never going to change and how can we expect them to.

I guess this is why I think asthma is rare because it is so complex and so poorly understood. I submerse myself in all information I can find yet I still don’t fully understand my condition- a condition I have had for 28 years.

 

In other news I have been back to work now and managing ok. I feel exhausted at the end of the day but enjoying being back around my colleagues and having a purpose to my day again. I have found it tough but onwards and upwards and I am sure all will be ok.

Next week there is the Cross Party Group meeting at the Scottish Parliament for Asthma which will be good to go to. It will be nice to see people from Asthma UK again as well as listen to speakers from the FARR Institute and listen to Aziz from AUKCAR and Sam from Asthma UK. I am looking forward to seeing the MacDonald’s again. I met them at the end of last year after their daughter tragically died from an asthma attack in her sleep leaving her wee boy in their house. he is now looked after by her parents his grandparents. I am looking forward to seeing them although I did find it hard last time listening to their story about Lydia and her asthma attacks as they are so like my own. I am not sure how I will be at the CPG as still coming to terms with the attacks from the start of this year but I must be strong and think I am still here and they don’t need to see me upset.

Anyway here is a photo from today with a wee chappy who never fails to make me smile!!!

 

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#aukcarASM15

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The last few days I have been down in Manchester at the Annual Scientific Meeting for the Asthma UK Centre for Applied Research. It was a great few days. all kicked off by an entertaining dinner with the centre director and post grad and network co-ordinator who learnt the value of Twitter and what you can do with it. It was with delight that one member found they were my top media tweet and wanted to retain this title for the whole meeting. (no one really knew what top media tweet was but battle had commenced).

I was particularly excited about the meeting for two main reasons because I was co presenting about @SPEAKAsthma and also I was going to hear Prof Iain Pavord talk who is in my eyes the asthma guru and brought Bronchial Thermoplasty to the UK. Listening to him talk was amazing. It gave me a renewed sense of hope that there were different treatments coming out for asthma, namely Mepolizumab. His different views on the use of oral steroids was interesting as I had always thought steroids would treat all aspects of asthma but now I know otherwise. It does make me question the role of oral steroids for myself. I have never been convinced that they are as good as medics make out. It will be interesting when I am next in clinic brining this information I have learned. Prof Pavord also knows my consultant and spoke highly of her. I think highly of her but that is because she has helped me so much, but when you get the top guy in asthma saying your consultant is good, she must be good.

Our talk about @SPEAKAsthma and a new project was great and we were able to show our recruitment video and a flipagram that we put together. I did get a bit nervous and stumbled over my words sometimes but I think the PPI Research Fellow I was presenting with caught my bad bits and saved me.

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Otherwise the meeting was good. It was different this year from last year in Oxford. I was very new last year and really didnt know many people but this year I have had the chance to work with a lot of people and met them over the year. This year we also had a big PPI presence as there were 7 of us attending. The great thing about the meeting and the centre is that they value PPI input so much and are really inclusive of it. There is no one who didnt make us feel welcome. Even at breakfast and  other meals they would stop conversation and welcome us and speak to us wanting out advice and input on their various projects.

There is so much to talk about in the meeting and way too much to put down on paper but my titter feed sums up the meeting as I tweeted throughout it. If you want to see go to @just_TUX to see my tweets.

The second day was really frustrating for me. It was really interesting but I couldn’t contribute as much as I wanted because I was up most of the night coughing and feeling really tight chested. It was horrible. I was determined not to let people know I didnt feel great but by the end of the day I felt exhausted and the effort of breathing was so much. I am really annoyed at myself for pushing through and not just excusing myself and resting somewhere. I have this bad mentality where I won’t let my health stop me doing things at any cost. By the end of the day at the train station on the way home I didnt have the energy to hide how I felt anymore and had to just sit on a bench and try catch my breathe. Once on the train it was impossible I felt slumped and had my neb. I must have appeared so anti social but I was spent and on empty. It was such a shame as the end of the last meeting was such a high and the train journey on the way back was full of chatting and discussing different things we were going to be doing in the near future.

I am really looking forward to the next few months. There have been lots of different projects that people want PPI input for and also the SPEAKAsthma group to which is exciting as they are still really new so the group is only just starting out but it bodes well if people are keen to speak with them and also have a group set up in London too!!! The future is looking good for SPEAKAsthma and PPI!!!