Craigmillar Park Charity Golf Day 14th August

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On Friday Craigmillar Park Golf Club hosted a charity golf day to raise money for Asthma UK. Golf club Captain Karen wanted to host a charity day and the fact that she chose Asthma UK was brilliant. She had said she never knew how bad asthma could be until she met me. I still can’t quite believe that the chosen charity chosen was Asthma UK.

Despite some very wet weather the day went ahead and it was very successful. With players arriving at 8am for bacon rolls before taking to the course to compete in a variety of different challenges- ranging from closest to the wiggly line to beat the pro. Raffle tickets were purchased by the dozen and the mulligans on offer were a very successful sale with just about every player buying them (only 3 per player and not to be used on the green!!). Golf was followed by a balloon raffle, lunch and presentation of prizes.

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For me the day was a real mix of emotion. I was so proud of my club hosting the charity golf day, proud of my captain for choosing Asthma UK and all the help which members of the club put in either by setting up the night before, rules official, manning desks, selling raffle tickets, car parking attendant, entering teams, getting prizes the list is endless and there are not enough thank you’s I can give to let you know how grateful I am.

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The day also brought sadness. After the lunch a video was shown about a young girl who died of an asthma attack and why it is vital to raise money for new treatments and the potential to find a cure. The video brought back my own experiences of life threatening asthma attacks, ending up in intensive care and fearing I have no more energy to continue breathing. It not only brought back my own fears but the memories of friends who I have made but have then died of asthma attacks or the consequences of. One particular person Dawn (pictured below) who taught me to follow my dreams and gave me so much encouragement when times were not great and I had long spells in hospital. She sadly died and it was such a waste of such a caring, charming, compassionate person. Asthma should not have killed her but it did and it is people like her I do all I can to raise awareness of asthma and just how much destruction it can do.

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I briefly spoke about my relationship with Asthma UK and asthma. I find it easier to show my relationship in pictures. You don’t always look ill with asthma unless in an attack. You can’t see diminished lung capacity and function, or the medications needed to keep you going. Instead I showed it in pictures. A collection of pictures from being in hospital, being at home and also my medication. Its a side of asthma that is kept behind a closed door. I think this is the most powerful way to show just what asthma can do.

When setting out the host a charity golf day we had a target of about £4000-£5000 and part of me didn’t want to put my hopes high. Asthma is not one the “sexy” diseases which gets loads of funding from donations. The lack of money in asthma research has meant that in my lifetime there has only been 2 new medications developed which I take but I still end up in hospital. No one really knows how serious it can be unless you know someone or have witnessed someone suffer a severe attack. I don’t think it has sunk in just how much money everyone donated on the day. It was not only the monetary donations but also the time put in by everyone. The total amount raised has not yet been calculated but we have superseded our target.

 

 

 

 

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(setting the balloon with AUK sticker smiley face into the air (not successfully) but I thought of those who I know who have died from asthma attacks and wished something too!)

The emotions from the day have been playing on my mind a lot. It has brought up a lot of memories I had intentionally buried and not want to deal with as they are too scary and also bring the reality of my situation to the forefront. My asthma is so much better now but is it better because I am not doing anything anymore or is it better because it is actually better and I can start pushing my body. It is like testing the water and seeing what I can and cannot manage.

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I owe a huge thanks to Janet (pictured left) and her PA who went above and beyond with entering teams, printing flyers, getting prizes donated. Thank you Janet!!

 

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Me and Captain KB at the end of a very successful day.

Thank you all once again. Look out for the final total raised.

A cure would be great but control would be better.

Anyone with asthma or even any long term condition wants a cure to be found for their condition. A cure would mean so much, less medication, no hospital appointments, less time miss off work, ability to get travel insurance, do the work you want, play the sport you want, sleep a full night, not feel isolated, be independent, no hospital admissions, able to not live in fear, have no fear of dying or friends dying, being able to have a life again.

However, as anyone with a complex long term condition knows a cure is not just around the corner. In my lifetime there has been one asthma specific new drug and another which can be used for asthma and allergies. That is 2 medications in 29 years. On average it takes 17 years just now to produce a new medication to treat asthma.

Yesterday I was at the Cross Party Group meeting for Asthma with Asthma UK at the Scottish Parliament which was a great meeting. It was focusing on the need for more research into asthma. It has been chronically underfunded for years and years. However after the NRAD report into asthma deaths there have been some fantastic opportunities for Asthma Research. The Asthma UK Centre for Applied Research was launched, Asthma UK is involved in the European Asthma Research and Innovation Partnership (EARIP) and asthma has become a condition which the FARR Institute is going to use as a blueprint for the way in which long term conditions are diagnosed, monitored and treated.

It is fantastic that there are some world leading researchers wanting to make a difference to lives of people with asthma. One thing I did notice yesterday was the focus on a cure which was talked about by one speaker. I would love for there to be a cure and for a reason to be found of why asthma is so complex and difficult to treat in some people. The more pressing thing is to find a better way to manage asthma. By managing asthma better the quality of many asthmatics life is greatly improved.

This is what I love about AUKCAR. I may be biased but they recognise the immediate need for asthmatics rather than focusing on discovering a cure. The need for better management, reducing hospital admissions due to asthma and the most important reducing asthma deaths.

By being part of the CPG and AUKCAR I can help make a difference. It may be small but small is better than nothing!

Botched asthma diagnosis…

Nothing like the sun newspaper to come up with a good headline:

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I may not be totally accurate in my view that for a long time asthma was a bit of a buzz word within the medical world. From reading and talking to different people it appeared that often people would go to their Dr because of a prolonged cough of some viral wheeze and come home with an inhaler and asthma diagnosis. I admit this is a huge assumption and there will have been more supporting evidence but it almost seems over recent years there has been an epidemic of asthma diagnosis

However last week NICE (National Institute for health and Care Excellence) published a draft report suggesting that over 1 million people in the UK had been wrongly diagnosed with asthma. That is 1/5 of the 5.4 million people who have asthma could actually not have asthma. I feel that if asthma statistics are not shocking enough lets just add some more stats and make it even worse.

The problem with asthma is that there are so many sub types, different phenotypes, different symptoms, triggers and so on and so forth. There is also no hard and fast rule of how to diagnose asthma. There are rough outlines for example recording a peak flow diary for a few weeks to see patterns and changes and depending on the result of this an asthma diagnosis can be made. However many people will present acutely with breathing difficulties which need to be treated first and not wait to do a peak flow diary. Due to the pressures on GP’s they do not have the time to spend with a patient making regular appointments to monitor them over a period of time before coming to the conclusion that the patient has asthma. You can read a small bit about this in one of my guest blogs by Laura (can be found in left side tab under Guest blogs) where she talks briefly about being diagnosed with asthma.

When I heard about the draft report from NICE part of me thought perhaps I could be one of those wrongly diagnose but that is very much wishful thinking. I think after 27 years of asthma, 11 years of brittle asthma, countless hospital and critical care admissions they would have worked out if I did not have asthma. But one can dream in the hope of one day not having asthma!!!

I can’t imagine the emotion and thoughts going through some peoples mind about wether they have asthma or not. I worry that many who are not particularly symptomatic and use inhalers regularly will stop using their inhalers because they may assume they don’t have asthma. This could potentially cause a huge problem and the aim of reducing hospital admissions due to asthma and deaths due to asthma may not decrease but might in fact increase as a result of many people hearing or reading shock headlines such as the Sun produced.

Asthma is such a difficult condition to have and to monitor because of the sheer numbers of people who have asthma.  My thoughts about why statistics surrounding asthma are so bad because it is a condition which does not cause a immediate deterioration if medication is not taken. To pick another condition such as diabetes, there is a very measurable way to see impact of medication. If a diabetic does not take insulin they will see very quickly their blood sugars increase and develop unwanted symptoms whereas with asthma if someone who is well controlled stops taking their inhaler there is no immediate effect which I believe could contribute to poor compliance as the effects of the inhaler would only be seen if the patient was subjected to a trigger.

When NICE put out the draft report about the possibility of so many people being wrongly diagnosed with asthma I was called by Asthma UK to do a radio interview about it. I was not able to participate in this unfortunately as it would be a chance to emphasise the importance of continuing medication even if you are not bothered by your asthma as the reason you are not bothered by it is because you are taking inhalers. I am glad in a way I was not able to participate in the interview because once I gave the report some thought it dawned on me that here in Scotland we do not use NICE guidelines for conditions and management but instead use SIGN who have not issued any reports about the possibility of inaccurate asthma diagnosis.

There does need to be a more robust and universal method of diagnosing asthma but I think this is a very difficult task to succeed on. Due to the nature of asthma as I said before there would need to be numerous different guides depending on the subtype, triggers or symptoms an individual suffered from.

in the meantime I can only hope that those who are in two minds about their asthma seek medical advice before stopping taking their treatment. It is a huge fear that this report will cause a lot of people to become unwell and possibly end up needing hospital treatment due to not taking their medication. It will be interesting to see in the future the impact that this has had.

Friends lost and why change is needed so desperately

It is this time of year where we are so grateful for our families and friends. We can celebrate Christmas and see in the New Year surrounded by those we love and cherish. That being said it is also a time for many families to remember those who are not with them. Those who have been taken too soon or those who have passed away due to old age.

I come from a very big extended family and have so many surrounding me but I still do not forget those who are missing. My uncle who sadly died far too young in a tragic accident and other members of the family gone to.

It is not only family that I think about but those friends I have made over the years that have lost their battle. That battle with asthma which kills roughly 3 people every day. To me people don’t die from asthma, they are killed by asthma. Why do I think like this?? because no-one should suffer such a bad attack or have their asthma so poorly managed that their life is cut short and taken because of an asthma attack and often the consequences there of.

When I spoke in Oxford at the first scientific meeting of AUKCAR in the PPI session, I closed rather emotionally saying that the centre would succeed in my eyes if after its first 5 years the number of people I personally knew who had died of asthma remained at 6. I am 28 (soon to be 29) and know 6 people who have died as a result of an asthma attack or the consequences of a poorly managed asthma attack. These 6 people all had asthma as a cause of death on their death certificate. This should never have been the case. Those 6 should still be living their life. Enjoying their family and friends as I am able to do. This is why I fight and volunteer for the Asthma UK Centre of Applied Research and Asthma UK to make sure everyone understands that asthma is so often mismanaged and poorly understood resulting in far too many hospital admissions and deaths.

My first experience of someone dying from Asthma was 8 years ago and it sticks so vividly in my head the day I heard the news. When I was living in Winchester I was often a patient on Shawford Ward at the Royal Hampshire County Hospital. This was where I first met Jeanette and her family. Her family adopted me so too speak as my family were up in Scotland and not able to come and see me very often. Me and Jeanette spent about 3 weeks in the same bay in the ward and I got to know her very well. We became firm friends. She was much older than me. She had her own kids and grand children but we got on so well. She made that hospital stay so much easier. I was in hospital that admission for 13 weeks. Even once she was discharged her husband would drive her in to see me every week. Once I was discharged I would often go round to her house and watch DVD’s and have afternoon tea. Her husband was the most amazing baker. (He would bring his cakes into hospital for me!!). Jeanette’e health slowly declined as her asthma became harder to control and more infections caused lung damage. I moved back to Edinburgh but when down visiting friends I would always arrange to see Jeanette and her family. The last time I saw Jeanette I was so shocked. She was in hospital- on Shawford Ward and very poorly. Her breathing was so bad and they just could not get it under control. Due to such a long period of poorly controlled asthma her heart struggled and eventually her body could not cope and she salt died. They did so much for me and it was such a pleasure to be able to repay those visits with my own visits.

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(The photo above was taken during that long 13 week admission. My friends on the rugby team were about to leave university. When joining the rugby we had initiations to the team. The members of the team not leaving decided to do initiations to life for the leavers. So as part of it the nurses allowed them to come in and visit me on the ward in fancy dress to cheer me up!!!)

The day I found out Jeanette died I was up in Edinburgh. I didnt tell anybody at first. I dent know how to. I almost couldn’t believe that she had died and it was because of asthma. Part of me was scared because I have asthma, I have poorly controlled asthma. I was asking myself could this be me, could I die? I could not make sense of what had happened. I was meant to be caddying for my step mum in a golf competition. I couldn’t focus. I forgot my golf shoes and had to buy new ones. I dealt with it the only way I knew how. I just didnt talk. When I don’t talk my step mum talks more and asks questions about why I am not talking- knowing something is wrong. I ended up snapping at her over something so small and insignificant I can’t remember what it was but i just came out with “Jeanette died and I don’t want to talk about it”. I don’t think I ever actually have spoken about it or how I felt. This is probably the most I have ever opened up about my first experience of someone I know dying from asthma.

I draw comfort in knowing that Jeanette will have died with those around her who loved her but also in a hospital ward which to this day I can not praise highly enough. Shawford Ward in Royal Hampshire County Hospital is one of the best respiratory wards I have ever been in. The staff are so caring and highly skilled. Even when they are stressed and run off their feet they make time for you as a patient. I remember countless nights struggling to breath and nurses would sit with me to make sure I was ok. The care assistants would come and chat and help me learn how to do my sub cut infusions myself. When I was getting better and on that long road of recovery to discharge they would get me helping them out doing the menus and the teas as this was the time many patients had visitors but being at university my friends would come in the day but my family were so far away the nights were hard. I don’t think I have ever really thanked them in person for all the did for me. So knowing that Jeanette was being looked after by them brings comfort. Rest in peace Jeanette.

There are 5 others along with Jeanette. They did not impact on me quite as profoundly as Jeanette’s death did and I don’t know why. I think it is to do with all she did for me and what her family did for me. I grieved for the other 5 as you would for anyone. From my own experience of severe asthma and uncontrolled asthma I did not feel particularly shocked that I had 6 friends who have all died from asthma. I think because 4 of them had asthma much like my own. I have had that feeling of not knowing if I can take another breath, or have the energy to continue to fight to breath and wondering if I will survive. It was not until May this year that I really took notice that I should not have so many friends who have died of asthma wether it be very severe or mild. The publication of the National Review of Asthma Deaths shocked me. I was gobsmacked. I knew asthma effected a lot of people but seeing in writing just how many people had died and how many had died needlessly made me sit up and listen so to speak. I realised that my 6 friends who make up the NRAD statistics should not be part of those statistics but should be pursuing their careers or enjoying their grand children. They should not be a memory or that person missing from a family.

I hope that in some small way I can help to make a change. Make people stand up and notice asthma. Promote good asthma management. I know that by telling all those at the meeting in Oxford that I had six friends die from asthma hit home. They took notice and saw the real life emotion and impact it has. Researchers can read statistics and know percentages but hearing from someone with asthma who knows what it is like to fight for breath makes so much more impact and hopefully will drive researchers to find ways of understanding asthma better and ways to manage it more effectively.

In the meantime I will continue to do my bit. Raise awareness, support research, be part of PPI for AUKCAR and do anything I can to help make the change that is so desperately needed.

I leave you with this poem written to me by a friend when I was in ITU after an asthma attack.