Happy Anniversary

You're Only Allowed to Die With A Smile On Your Face

So this is something that's really pissing me off lately. I guess it has become more of a prevalent topic for me to notice, and in turn analyse since I went active on the transplant list nearly a whole year ago (!) and it seems to be an issue that is constantly reoccurring. In a nutshell, it seems that you're only allowed to die if you're doing it in a super positive way. What do I mean? Let me go back to the beginning. I've always known that death was an intrinsic part of having Cystic Fibrosis. I think I was first exposed to it when I transferred from paediatric care to adult care at around the age of 16. Before that if you were in hospital and someone that you knew had passed away you were merely told that they had 'gone home' which I completely understand as it's really hard broaching the topic of death and mortality to a bunch of kids who spend long periods of time in hospital with as vicious a disease as CF. I think the first couple of times that I experienced death during the early years of my stay at my adult CF unit it was through conversation with other patients, some of them had lost siblings or other friends and it just kind of came out in conversation during the many late nights when we were all allowed to mix. I remember that it was generally just accepted by the hedonistic group of patients that I fitted in with who used to make their hospital stays as enjoyable as possible via whatever means that they could, none of which I can go into here as my lips are forever sealed. Let's just say that you wouldn't believe some of the stuff that we used to get up to. I just fitted into that mindset and attitude to life perfectly as it reflected my own personality and beliefs of just getting on with it and trying to enjoy every iota of being alive that I could, for as long as I could. There were other groups of patients at the unit who were insular, or complained about every aspect of hospital life and having CF and I just couldn't be arsed with those types, I still can't to this day so that's something that hasn't changed at all. People LOVE to complain, and some poorly people LOVE to complain a lot. Personally, I see those types as whiny cunts. Just my opinion. I don't think I every sat there thinking, ''oh shit, I'm actually going to die from CF one day'' as we all used to take the piss and mock it all, even death which is where my sick and un pc sense of humour developed. A lot of people with CF have this and I 100% believe that it has saved my life and their lives countless times. It's true that if you can crack a joke in the darkest of hours then you can pretty much get through everything. That's not to say that it doesn't take it's toll on you, believe me it does but it helps, it really helps as an outlet so you can release some stress and then refocus on making sure that you don't join the rest of the fallen. Well, try your best not to anyhow. One memory that does stand out from my formative years in hospital was when I needed a course of treatment and there wasn't any beds free on my specialist CF unit so I was given a bed on the outlier ward until one came up. This was probably the first time that I was properly exposed to death. One night I needed the toilet which was situated at each end of the ward so I left my room in the early hours and slowly walked down the ward glimpsing into each room as I passed. You'd often see some sights like old people crapping on the floor right next to their commodes, generally not giving a fuck and undertaking some kind of dirty protest at the fact that they didn't want to be there even if it was for the good of their own health. One even escaped once to buy some fish fingers in the local town centre and was brought back in their pajamas by the police but that's a whole other story to tell. Anyways, where was I? Oh yeah, so as I walked down to the toilet I looked into one room and saw a person with the sheet pulled right over them, I'd seen enough horror films to realise that they were dead and I felt a chill down my spine and just thought, ''oh fuck'' and nothing particularly profound. The worst bit was that their arm wasn't completely covered by the sheet and was slightly hanging out of the bed. Like I said I had seen enough horror films so rushed to the toilet and completed the quickest late night piss that I've ever had in my life whilst also trying hard to not shit myself and looking around in case some kind of pensioner zombie rolled up and attempted to bite my increasingly shrinking dick off. It wasn't a nice feeling at all. It was the reality that there was an actual bona fide dead body a few rooms away from me. It was chilling. I went back to my room and just thought about it logically for a bit, I was on a ward of predominantly old people and old people died. It was as simple as that for me. A few admissions later I was again on the outlier ward but had taken a stroll up to my unit to use the dayroom facilities that we had and shoot some pool. As I was waiting for the security door to open a trolley came out being pushed by a porter with a body bag on it, again covered by a sheet and again chilling me to the bone. I guess it was just unfortunate timing as I know that hospitals generally try to move the bodies of people who have passed during quieter times to cut down on these kind of incidents but it was around mid day and there wasn't really anything that they could do. I felt slightly different than I did about the old person passing away on the outlier ward as this was someone else with CF, a fellow patient, not one that I was close to thankfully but still someone with CF was dead and their lifeless body had just been wheeled right past me. The worst bit was seeing the sadness and pain on the faces of the staff as they are often all so super professional I had seen the real impact on them of doing such a difficult job as working on a specialist CF unit where unfortunately death was par for the course as part of the disease. I reckon those two experiences and the people that I had become friends with on the unit shaped my mindset of, ''well, there's not much that I can do so fuck it. I'll do my treatments, kick arse and see what happens'' which is all I could do really. I think I owe a lot of my mindset to how I was brought up too. My mother never really made a fuss of me having CF which helped loads, not in a bad way but I never used it as an excuse, or to think that I should be treated differently because I had it like LOADS of people with CF do these days. There's the whole 'i'm a precious little snowflake' mindset within a lot of people these days which I find nauseating, attention seeking and quite cunty to be honest. Back to this death thing then, over the following years as I grew up into adulthood I lost a lot of friends and fellow patients in hospital, 100s of them to be honest so death and dying became a really normal part of life for me. I think part of the problem is that most normal people lose an elderly relative, or a parent during the course of their life whereas a lot of people with CF lose countless people. These people are often the only ones who have any kind of insight into what living with the disease is truly like and so your mortality is constantly reflected back onto you. the unpredictability of CF is paramount to shaping your viewpoint of death as you could leave a friend in relatively good health after one admission only to return a few months later and find out that they've passed away after a particularly bad infection. The foundations with which you view life, death and everything are built on quicksand, often suddenly changing and reforming as a new landscape which you have to relearn how to navigate in order to keep sane. Unfortunately, there's nothing that you can do about your CF friends dying. One of my CF psychologists theorised that I subconsciously accepted this and just decided to get on with it all. I found myself over the years becoming numb to it happening as the group of friends that I made when I first joined the adult unit at 16 dwindled and dwindled. I guess I probably did it to survive as you can't let yourself get caught up in the emotion and upset of it all, being that it happens with such frequency that at times you'd be losing friends every couple of months. You have to put yourself first to survive so that's pretty much what I did. I'm nearly 38 now and I can probably name on one hand how many long term CF friends I have left that I've met and known since I was 16. I recently lost one of my oldest friends of 20 years and it crushed me but there's not many left at all now. Fast forward to the original point of this blog now though. When I was put on the active transplant list I let everyone know that this was the point of no return just as I always had as I've always tried my best to present an open and honest picture of what life with Cystic Fibrosis is like. I've never done this for myself, I've wanted to be as open and honest as possible to help others understand but I fear not many people got the memo on that one. I see a lot of people posting things on social media and a lot of their stories are ridiculously over the top and nauseatingly positive about end stage Cystic Fibrosis and being on the transplant list. It generally feels like nobody has the balls to show the real, hard hitting side and I find that incredibly frustrating and, if I'm being honest, a little bit cowardly too. End stage isn't called end stage because it's a fluffy part of life that is filled with rainbows and puppy dog tails. It's called end stage because if you don't get a transplant then you're going to fucking die. Simple as that. It's the cold hard truth and the clock is ticking. And yet, nobody really wants to talk about it or engage with you on the subject or even the fact that you have to consider your mortality now every single day. That seems wrong to me, yes? You even get the charities and organisations that are supposed to be there to support you ignoring or shying away from the subject. Again, that's wrong in my book. To ignore, or shy away from death is to ignore those of us fighting so incredibly hard every day to make it when the chances are stacked against us, like really fucking stacked against us too. Nobody wants to talk to you about how you're feeling about how long you may have left, or how incredibly hard it is for you and your loved ones every single day, nor the incredibly strain on your mental health, major depression and incredibly high levels of stress that are constant and a huge drain on you on top of an already gruelling regime that you're forced into. In the last year or so I've had to do a lot of deadwood clearing of people from my personal life, I can't afford to have shit people in it anymore so I've culled quite a few people for very good reasons but still a lot of people just don't get it. Not many people call or text anymore to see how you are, people seem to just assume that if you're showing a presence on social media then you're ok which really couldn't be further from the truth. I can totally understand people being upset by what's happening but really if you stand back and look at things, shouldn't the focus be on helping the person with the illness who is dying and not pandering to the feelings of those who don't have it that can go home and forget about it at the end of the day? You don't get a break from things at this point, the treatment burden is massive and all consuming running your life from morning until night. Inevitably you're left alone, or with very few people to be able to talk to about end stage life. It's made even harder by the fact that not many people make it to transplant stage or through one so there's not many others that can offer an understanding opinion on things and some empathy. There's no room for excuses anymore though. As a society we are fundamentally failing not just people with Cystic Fibrosis at end stage but also anyone who is faced with the end of their life. It's staggering to me that we spend so much time and effort of bringing people into this world but really seem to not give a flying fuck about those of us on our way out. We're all going to die too so just why is it that people can't man up and discuss death in a mature and understanding way? There are so many people suffering alone and things REALLY need to change. Fuck the overly positive people too, you're not helping anyone and you're lying to yourself living in cloud cuckoo land. NOBODY is super dooper positive 24/7 when they can't even breathe whilst having a poo. They're just not. I'm not saying be a miserable fuck about things if you're at end stage but at least be honest, and don't be scared of being REAL about it all. It's such a headfuck and emotional nightmare that people need to know. Since I've started speaking out about this I've had so many people tell me that they agree but they have no voice or representation. A lot of CF parents have said that they fully want to know what to expect in the future if things don't work out so the fact that The CF Trust and other organisations seem to focus solely on the young and not being more honest about end stage because they don't want to upset the CF parents is not cutting the mustard with me. As a community we're shite at supporting adults and those at end stage and it has to stop. I guess what I'm saying is that it is completely legitimate to be realistic and show just how awful things are at this point and I find it offensive that there's a real, palatable feeling off 'ooh, that's a bit grim let's ignore it and focus on being super happy alllll the time'. Case in point, when my close friend passed away recently the church was packed with people crying their eyes out at her passing. For the last two years of her life when she was isolated at home distressed very, very few of them made the effort to be there and visit. It disgusts me that this is a common occurrence. I'm living it myself so I know what I'm saying is true, In my opinion being like that doesn't help anyone at all. Awareness covers ALL aspects of life and death so let's start doing something about the latter. Talk about this shit, show people that you care and get involved with them - they might not be here for much longer and you'll only regret it when they're not. Peace out and don't die. Andy.

Yours Sincerely...

Hi I, Hi C! *waves* I'm so glad that you guys have found my blog and are continuing to stalk me up online, and all because you know that you've been very silly people indeed and are pissed that you've been both caught out, and called out on your disgusting views.

For anyone who isn't clear what's going on here regarding the comments on my previous blog then here are the facts, pure and simple which can all be backed up by screenshots.

So, a few weeks ago on Facebook I saw that I had posted a mind numbingly dumb and incredibly ignorant status mocking the plight of Syrian refugees not long after the horrific stories and images of dead children washing up on beaches and people attempting to flee to Europe for their lives were all over the world's media (and rightly so). I's comments were racially tinged and he often comments similar stuff on his Facebook. Now after seeing plenty of mindless stuff like this over the years I decided that my eyes could no longer be exposed to his stupidity so I deleted him. However, this wasn't before screencapping the aforementioned status and posting it on my main page.

Now, in his status he said something along the lines of ''why are people trying to come over here if they can afford HD brows doing'' and hinted that Syrian refugees fleeing from horrific circumstances were basically bullshitters and just trying to come to the UK and other countries 'for da benefits and jobs' suggesting that 'we' should 'look after our own first' and 'more people should die'. It's the same tired, thick and ignorant rhetoric that those decent minded members of society witness every single day and quite frankly makes my teeth itch.

Anyways, so yeah I posted his delightful status on my Facebook and captioned it asking anyone who held the same beliefs as this c*nt should delete myself from their Facebook. I also added that his wife (C) should sort her own eyebrows out before I mocked refugees in an attempt to validate his ignorance and hideous views. I added a photo of them both to the thread and people on my friends list looked at the evidence before them and made their own minds up that both of them were really very silly people indeed.

Laughter ensued and jokes were made, that was that. Nothing more, nothing less.

A few weeks later I had gotten word of my actions and then decided to take offense, posting his own status asking for people to let him know where I live or work so he could 'sort me out face to face' and calling me a fanny which was met with amusement and much laughter as I mean, really? You're going to go track someone down because they took the piss out of you and your wife's eyebrows but it's completely ok for you to mock and laugh at innocent people running for their lives?

Double standards much?

I then decided to start inboxing me in a threatening manner, telling me he knows where I live, he's going to come and 'sort me out' and 'make me apologise' and so on, and so on. He even attempted to track my location using Google and had his Navy friends try to add me. As if he thinks I'm dumb enough to do so. Please. When he eventually realised that I don't scare easily, or maybe he realised that being in HM's Navy that he really should conduct himself in a more appropriate manner as it is obvious that he needs to brush up on their equality and diversity guidelines he blocked me on Facebook and that I thought was that, until he started leaving comments on my blog like the one above and C decided to join him.

Also, I think that wishing that someone does not get a transplant is pretty much wishing death on them so by publicly posting that you've really just proved how hideous you are.

Here's hoping that you're not on the organ donor register I as it would be pretty ironic if I were to receive your lungs in the event of your death. Hmm. I'm sure that you'll both be reading this at some point guys so let me reiterate what I told I via inbox. I could not care less what threats you make, what supposed actions you think you can take. I have nothing to hide. I have evidence to back up everything that has been said. If you continue to spout your bile then I WILL email all of the screenshots to I's Commanding Officer in Yeovil.

Here are the Royal Navy's equality and diversity guidelines guys, I strongly suggest that you read them and think very carefully about what you post online in future. Ok? Oh, and I'm fully aware of the laws surrounding social media and nothing that I have done is illegal ok. Ta.

Thanks for the entertainment. Yours sincerely, Andrew. xoxo

HM Navy's Ethics and Diversity Guidelines: http://www.royalnavy.mod.uk/equality-and-diversity

National Transplant Week 2015 - A Day in the Life....

Hi everyone. As it's National Transplant Week 2015 here in the UK right now I thought I'd dust off the blog to try and help to raise some much needed awareness of organ donation and the transplant process. As some of you may know I am now active on the transplant waiting list so I thought I'd try and get across an average day in my life and exactly what it entails. If anyone has any questions about Cystic Fibrosis, organ donation, or the transplant process then please feel free to ask in the comments. I hope it helps people to understand things a little better.

09.00am - I wake up exhausted no matter how much sleep I have, which is usually a lot less since going on the list. Bedtime brings thoughts about being on the list, if you'll get a call, about your friends who have already died and just how long you will have left if you do get a transplant. As soon as you wake up you have to clear your chest of the sputum which has built up overnight so there's lots of coughing and hacking which adds to the tiredness. I'm usually in some kind of pain too, if you sleep in an awkward position or slip down your pillows (I use quite a few now to prop me up in bed and assist my breathing) whilst asleep then you'll wake up aching so you'll need to take some pain relief which leaves you doped up so already a great start to the day. 

09.50am - the carer comes to help get my nebulisers, tablets and anything else together whilst checking that I'm ok. Whilst I'm doing my nebulisers which have to be spaced out at 30 minute intervals she makes me breakfast which I have to eat no matter how sick and exhausted I may feel. It's massively important that you keep a good weight on when you're on the transplant list as it is vital to getting through the operation and recovering well afterwards. She helps get my clothes ready whilst I'm eating and then I get showered. 

10.45am - Showering isn't as simple as it used to be. I have to wear my oxygen whilst getting showered now as it makes me very tired and breathless. I know that sounds ridiculous and it makes me feel like an invalid at times and I now have a shower stool so I can sit down. The worst part is that I have to rest for 15 minutes after a shower too to let my oxygen saturation levels return to normal and I literally don't have the energy to do anything else. I haven't lost my dignity yet by being showered by my carer but that will come, eventually. 

11.05 - I'm exhausted and desperate for a sleep. I can't have one though as I need to complete my morning treatment regime by taking my steroid inhalers which help keep my damaged airways open. 

11.15 - I still can't rest. I have to do a morning physiotherapy session. 30 - 45 minutes of exhausting breathing and coughing using a PeP mask. It looks a little bit like an old fighter pilot mask and helps open your airways so you can cough up more of the thick sputum filling your lungs. 

12.00 - I finish my morning physiotherapy session and I'm shattered. I now have a little free time. I may nap. I may read. I may watch something or play video games. I'm limited as to what I can do now. I'll usually have calls to make to oxygen companies, chemists, arrange appointments and such like to make sure that I'm fully stocked up with all of the things that I need to keep stable. 

14.00 - my carer returns for my afternoon call. I only have one nebuliser to take which is a slight relief. Whilst I'm doing it she'll make me an afternoon snack and drink, you gotta' keep those calories going in! Then I have my pulmonary rehab exercises to do. These are designed to keep your strength up whilst you're on the transplant list so it's stuff like standing press-ups, weights, walking up and down a step for 5 minutes, core strengthening. All to keep your muscles strong so you can recover from the transplant procedure. At this point however, it adds to your exhaustion so is very, very difficult to maintain. 

15.15 - I'll try and sleep, or watch something but I'm usually overtired and don't have much success, or my mind will be wandering so I usually come on here or Twitter and piss people off. 

16.00 - 18.00 - I'll try and get up and about the house to do some chores, sitting on your arse because you're ill is not an excuse and I need to stay mobile too but again, this is now very difficult for me and going upstairs makes me breathless. This is usually the time that the family are due home as well so I like to help out and still have Dad duties to attend to. It's hard because you want to support your family but you're exhausted from your daily schedule. If I'm relatively stable then I will make the family meal but more often these days Helen has to do it after a long day at work which upsets me as I just want to support her and provide for my family because I love them. I couldn't ask for a better family though as we all pull together and support each other so everything gets done, with teamwork, and love. 

18.00 - time for my early evening nebuliser. Just the one to help keep my airways open along with my early evening oral antibiotics. 

20.00 - 21.00 - the nursing team will come and see me. They come in a pair, one healthcare assistant and one nurse. They'll help me get ready for bed and get me anything that I need plus make up and set up my NG feed which I have to insert down my nose and into my stomach. The calorie rich liquid slowly drips through the tube overnight and gives me 1,600 calories whilst I sleep. I usually have it 3-4 times a week but sometimes more if my weight has dropped. This is because CF also affects your digestion making it incredibly difficult to put on and maintain weight. It often leaves you feeling bloated and full though which isn't great when you're attempting breakfast the next morning. The nurses will also get my evening nebulisers, inhalers and tablets ready too and thus, the cycle continues. 

21.00 - 21.45 - evening physio. By this time I generally really can't be arsed but have to force myself to do it, or Helen has to bollock me. It feels like an endurance test as I just want to rest. I want a break from the daily regime of treatment, medication and exhaustion. It pisses me off but I know that once it is done then I will finally have peace. I'll be in pain again so will require more pain meds as you're constantly battering your already weakened lungs every day, desperate to keep them clear and free of infection. 

21.45 - 22.45 - now I have free time to spend with Helen. We'll usually curl up together in bed, with a brew and watch something to laugh at on tv to give us some respite before passing out to sleep, or she'll fall asleep before me so I'll try and read to reclaim something for me in the battle for normalcy, but not before I set my feed off, hooked up to two machines and two sets of tubes coming out of me. One for oxygen, and one for feeding. I'll usually fall asleep at midnight. 

This is a snapshot of my daily life and it's often much busier than this. I don't know how long this will continue for. I do know that it will get worse and much more complicated the longer that I'm on the transplant list. I'm tired of this now. I need a transplant. 

Please sign up to the organ donor register and inform your family of your decision.

#‎CysticFibrosis‬ ‪#‎OrganDonation‬ ‪#‎Transplant

Back Once Again with The Renegade Master!

It's been aggeesss since I've blogged on here! I keep feeling the urge to write and then, well, life just gets in the way really, or I'm too busy enjoying it to be arsed sitting at my laptop writing. A lot's happened since I last blogged though so I *promise* to start blogging again a bit more. I know, I know, I've said that I'd return to blogging more times than Christians have awaited the return of Jesus but you know, it's me so I'll get around to it eventually. Scout's honour and all that.




Anyways, here's a short video which focuses on the treatment regime of people with Cystic Fibrosis, have a watch.

This is Cystic Fibrosis from Aram Chalmet on Vimeo.

No Future?

So, yesterday was a pretty significant day in the Cystic Fibrosis community. Vertex pharmaceuticals in the USA announced very promising data from their phase three trials of a combination drug that will treat the genetic cause of Cystic Fibrosis directly. The data claims that if and when the drug should become available in the US and EU markets that it *could* offer suitable patients with the double delta DF508 gene mutation anywhere between a 6-10% (or maybe more) increase in their lung function and see a decrease in the amount of time spent in hospital as it seems to also reduce the amount of exacerbations of CF too.


People with the double DF508 gene mutation make up about 50% of the CF community.


What does this mean? Well, it's a bona fide scientific breakthrough as, since now, all medicines and treatments have been tailored towards treating the underlying symptoms of Cystic Fibrosis - this would be the first drug ever to attack the cause directly. The real world implications of this could be staggering indeed, young children born with CF could now take this drug and live a whole and normal life, requiring much less treatments and time in hospital and experiencing much less serious long term damage to their lungs, perhaps for some, none at all.


And yet, I'm not jumping around with happiness... I don't really feel anything about it. Should I?


Undoubtedly this is a major scientific breakthrough the likes of which have never been seen before and I'm glad that many people won't have to go through many of the horrible things that I did growing up. However, part of me feels angry too. There's a lot of people throwing the words 'miracle cure' around right now, people are elated with the news of the breakthrough, which is completely understandable. There's lots of hope and there's lots of optimism that this drug will lead to other drugs and new treatments and that this whole process could potentially be the first baby step towards an eventual cure for Cystic Fibrosis.


I guess, being the super dooper realist that I am I'm just deeply entrenched in cold, hard reality. If the FDA approves the drug in the US it will probably take between 8-12 months to do, then subsequent approval has to be sought in Europe too which will most likely take another year. Then there's the question of whether the already under strain budgets of the NHS can afford to purchase it. There's all kinds of cost quotes flying round right now, some say in the US it will cost anywhere between $160-250,000 dollars per course of treatment for each patient so it is likely to cost a shitload in the UK.


Another issue is one of what about the people who don't have the double DF508 gene mutation? They continue to wait and hope for a similar breakthrough as that's the problem with genetic diseases like CF - any breakthrough in treatments invariably denies another group within the community as it is just that complex to gain any ground on. Irritating bastard that it is.


My anger is for those of us who the drug offers very little for, the older people with CF who have struggled and fought their way into adulthood. Those of us close, or already on the transplant list, and yes, those of us who have already lost the battle.


Time is always against you when you have Cystic Fibrosis, and discoveries like this are too late for many. I can't help being angry about that. I'm not 100% sure if I qualify for this new treatment *should* it become available, my CF unit are busy attempting to categorise people's secondary mutations if they have them so I'm sure they will tell me once they have assessed the information. I'm more concerned that If I am viable then by the time the drug is approved and if the NHS can fund it what state will my health be in by then? 2-3 years is a lifetime away right now, despite me doing really well and busting my balls to stay that way with another transplant assessment coming up.


Don't get me wrong, I'm happy and recognize the massive importance of yesterday's breakthrough. I just wanted to share some thoughts about the harsh reality of how it will affect the CF community as a whole.


*throws gang sign with hands and struts away from laptop*

That Time When I Experienced Disability Discrimination

Hey guys,


So, as some of you Twitter and Facebook followers know, me and H went to the Kings of Leon concert at Sheffield Arena on the 18th June and things didn't go quite to plan. In a nutshell, we arrived at the arena to find that our pre-booked disabled seats had been given to a non-disabled couple who were claiming a 'bad back' after booking sto. After much explaining of my condition and state of health we were then forced to move allll the way around to the other side of the arena despite several further explanations that this would be potentially dangerous for me as my breathing wasn't great.


Still, we were forced to move.


I wrote this letter to the arena manager to complain:

Dear Mr O’ Shea,

I am regrettably writing to you to make a serious complaint about the way in which myself, my carer and partner, H were treated during our attendance at the Motorpoint Arena on Tuesday 18^th June 2014 for the Kings of Leon concert. On arrival at the concert we were greeted by friendly and helpful car park staff which lessened the extortionate blow of being charged £20 for a disabled parking space.   

On entry to the arena, friendly and helpful door staff showed us to the disabled access lift which led us to the level on which we had pre booked our disabled seats many months ago. On arrival at seating bay 116 which hosted our seats we were dismayed to find that our seats had been willingly given to a non-disabled couple. Myself and my partner explained to the Showsec steward that we had booked our tickets months ago and that the couple were wrongly seated in our seats. He apologised and called for a supervisor who turned up and we explained to them both about my disability, Cystic Fibrosis. If you have no knowledge of this disability then please allow me to explain. I was born with Cystic Fibrosis and it is an incredibly serious lifelong terminal lung disease which affects all of my major organs. It constantly fluctuates and I spend a huge amount of time every single day undertaking an invasive and exhaustive treatment regime which also results in frequent long hospital admissions. There is no cure for it and it will not get better. I am now clinically at the end stage of the disease meaning that I am not expected to live longer than the next 2-5 years without requiring a lifesaving double lung transplant that I am currently being annually assessed for. In short, I am dying.              

As a result of being at the end stage of Cystic Fibrosis I now have to wear a heavy portable oxygen backpack wherever I go, 24 hours a day as my lungs are seriously damaged and currently operating at 30% capacity which is equivalent to the air within 4 empty cans of fizzy drink. Once we had explained my health situation to the Showsec supervisor he left to arrange alternative seating and then returned and asked myself and my partner to move to seats on the opposite side of the arena in seating bay 107, directly opposite where our pre booked seats were. We explained again that I would find walking to the other side of the arena very difficult indeed as I had just walked into the arena from the disabled parking spaces which in itself for somebody in my condition is quite a considerable task and dangerous for me. We were still asked to move. The couple who were wrongly seated in our seats claimed that they had booked standard tickets and then as the male had ‘injured his back’ since booking they had been given our seats to sit in. The only solution that the Showsec supervisor offered before moving us was that were we to go and discuss the matter with the customer information staff who I believe were named Carol and Sam.                                                                                                                                        

This is completely unacceptable for a number of reasons. As we had spent the best part of 15 minutes explaining our situation to the Showsec stewards and supervisors, and then were forced to walk around to the other side of the arena which made me very breathless and requiring my medical treatment to be administered by H such as inhalers until my breathing calmed down some 15-20 minutes into the Kings of Leon’s set it incredibly soured and spoiled our first visit to the Motorpoint Arena. The whole thing had gone from being an event that I had paid great expense for and were very much looking forward to for months, to one of stress, disappointment and emotional upset - none of which were our fault. Once Helen had made sure that I was ok and that my breathing had returned to normal she had to leave me to deal with the staff at the customer information point that were initially cocky and frosty in demeanour towards her. Once she rightly explained the whole situation to them they were incredibly apologetic and admitted that the incident was a huge mistake and that it should never have happened in the first place, advising us to write an email which I will do alongside this letter. However, to add insult to the already soured evening, once we had been seated in our replacement seats which as I stated were directly opposite our original ones, I witnessed the male from the couple get up, walk around freely and go to the toilet unaided with my own eyes which made me doubt his ‘bad back’ story.                                                                   

It seems to me that your staff are not correctly trained in how to deal with disabled people, there seems to be a mind-set prevalent that ‘if you’re not in a wheelchair then you’re not disabled’ which is wrong and highly discriminatory in nature. This especially seems to be the case when you consider that we explained my very serious health situation several times over to all parties and not once were we neither offered seats nor was action taken on our behalf which would and should have been to move the couple who were wrongly seated out of our legitimately booked seats. The evening was very distressing for me and my partner and I very much doubt that we will be returning to the Motorpoint Arena in future as it was an experience that was in no way justified when considering my serious health condition and the fact that tickets and parking charges amounted to £141. I expect a better level of service for that amount of money as it is a lot indeed for someone to afford who is too ill to work and reliant on my disability benefits to survive. I also expect to be treated as equally as non-disabled customers are which as you can see me and my partner clearly weren’t. We have been to many different venues and gigs as it is one of the few things that we can do together which help us get through the toughest of times living with a terminal illness and we have visited Leeds Arena, o2 Apollo in Manchester, Bingley Festival and the Leeds o2. They have all been absolutely fantastic at supporting the needs of disabled people, provide friendly and helpful staff and the facilities are second to none. For instance, Bingley Festival offers a dedicated team of ‘Event Buddies’ who will collect drinks from the bar for you to avoid long queues and the Leeds o2 have their disabled seating area upstairs so it is nearer lift access and a quieter bar area. All the aforementioned establishments also offer free tickets for carers to be able to attend gigs and concerts with their disabled friend, family member or loved one too. Those may be areas of improvement that you may wish to review in future along with the extortionate £20 charge for a disabled parking space in the name of equality and fairer access to facilities for the disabled which you are legally required to do under the Disability Discrimination Act 2010. It is a shame that Sheffield’s Motorpoint Arena has not lived up to these high standards too.

I would like an explanation in writing of the above incident.

Regards,

Andrew Ward.


I emailed a copy of this to the customer services, and received this replay some 48 hours later:

Dear Mr Ward

 

Thank you for your email.  I was disappointed to read that you had cause for complaint.

 

We do not charge £20 for a disabled space.  All of our car parking spaces are £5.50 when bought in advance and £6 if bought on the day of the event.

 

I passed your email on to our Head of Security who has investigated and I have since had a report from the Showsec supervisor in the area.  It is true that we had relocated 2 people to the seating bay in which you were allocated 2 spaces.  This was a mistake by a member of our box office staff and may I take this opportunity to apologise on their behalf.  However, the Security Supervisor offered to move these 2 people to another bay, but says that you said you would go to the other bay instead.

 

We have to take people at face value.  If they say they have injured their back and ask if we can help them, then if it is possible we will help them.  On this occasion they should have been located in a different seating bay, but there were spaces available for anyone who had been injured since they purchased their seats.

 

It is incorrect to say that our staff are not trained to deal with the disabled.  They are trained in all aspects of customer service, including dealing with disabilities of all kinds, and not just wheelchair users.

 

Regarding seats for carers, prices for our shows are set by the show’s promoter, and the vast majority do not give free seats for carers.

 

I am sorry that you were disappointed with your evening at the arena.

 

Yours sincerely

 

Joe Waldron

As you can all see, their response was dismissive of my genuine complaint and eloquent explanation, and it comes across a tad arrogant and completely insincere. It's obvious that we have a 'you said/they said' situation now between myself and the arena staff and I expect that this is where they think the matter will end. They're wrong.

My grievance is as simple as this, pre-booked disabled tickets should not be given away to anybody else, no matter what the circumstances, and especially not when over £100 had been spent on them. It's disgusting enough that disabled people are charged more than the able bodied in the first place for access to cultural events such as this so why should we stand for that access to be denied because somebody claims that they have a 'bad back'.

I think my next course of action will be to take the matter to the higher ups at Live Nation - the promoters and if I get a similar response to this then I will have to contact the papers because, remember fellow disableds, nobody gives a shit about you if you're not wheelchair bound. I mean, that's the gist of what this disagreement is, am I right?

Let me know your thoughts, or possible advice for solutions below.

Cheers,

Andy.