With only days until my last camping festival of the year, I thought I’d write a blog post about how I prepare for a festival. Preparation is pretty much the busiest part of the whole process especially if you throw health needs or a disability into the mix. With my medical supplies, my load is at least doubled. I went in very unprepared to my first festival and still learn from mistakes each time. Here’s how I prepare, now I have five festivals under my belt.
I BOUGHT A PALACE
In total, I’ll have spent three weeks in a tent this summer and so I decided to look for a nicer tent. I’m hoping to take it to a campsite next year (and I’m open to recommendations). I found a few tent sales online but I was keen to see one in a shop before buying. I went to a local camping shop called Kool Camping in Blackpool where they had a good selection of tents on display. As what I wanted was generally out of my price range, they offered me a demo tent that was in my price range and I came home with the very luxurious Hayling 4. As it was a demo tent, I was able to have a walk round it in the warehouse and it was absolutely massive. I’m a girl that has suffered tent envy at every festival. Last year for Leeds we bought a cheap 6 man from Sainsburys that we could stand up in. And that seemed luxury when I bought it. But when we got to Leeds, all the other tents trumped even the six man. I still had tent envy. This time, I have a palace. It’s so lush that I’m taking an airbed because I want the full luxury camping experience. I am full on glamping.
Before each festival, I try and get the tent out and put it up to remind myself how it’s done, check it’s still alive, that it has all its poles, enough pegs and that there’s no old crisps surfing the bedrooms. I didn’t have to worry about crisps this time with my brand new tent, but it is the biggest tent that I’ve ever bought, so I had a go at putting it up in the garden. I was unsure whether it would fit in the garden with it being so big and although it was a squeeze, we managed. It was more cumbersome and heavy to put up, but it has the same amount of poles as my other tents and was simple enough. Here it is:
I am very excited to live in this next week!
MEDS AND FEED
At least a week before any festival I have to do an order of meds from the chemist and feed from my supplier – Abbott. I count up what I have in and calculate how much I need before I leave, whilst I’m away and when I get back. If there’s capacity then taking extra supplies is a good idea but it’s already a struggle with the bare minimum, from carrying it across the festival site to finding somewhere to store it all. I start at least week early because I have to make sure everything is there and packed in good time. I also need to put fresh extension sets on my button (I also pack spares) and change the water in my balloon.
I pack my feed in a cool-bag and hope that I can find a fridge or somewhere cold to store it when I get there. I left them in the tent at my first festival and they went a bit clumpy. It was so hot at Glastonbury that I even had to keep a cool-block on it as it was running in my bag and had to change it more frequently. When it’s hot, I conduct a regular sniff test of my feed to check it hasn’t gone off, and throw it out when it’s done. It might mean I get less calories if I can’t bring spares but I always bring dioralyte and enteral fluid bags which I can run for extra sugar/electrolytes and hydration. I’ve been looking at getting my own fridge for festivals but one that would fit all my feed in wouldn’t fit in my car. It can be a bit of a faff finding somewhere to put them when I get there, and somewhere big enough. Nowhere is ever as prepared as they say they are, even when I tell them in advance.
The last thing I do for medical prep is to charge my spare pump which I leave until the day before so that it doesn’t lose charge. When I’m at home, I charge my pump whilst I’m attached to it next to my bed but I can’t do that at a festival so I take a spare pump and whilst I use one, I charge the other and swap them over every night.
For me, a list is essential to make sure I have everything. There’s so much to remember and I have a very unorganised brain. After I make a list, I figure out what new bits I need to buy. I end up buying new torches each time but one packet of wipes has done me two festivals this year. I’m not a scruff, wipes go further than you think. I took three packets of wipes to my first festival – what a waste of bag space! Here’s my full list:
I pack the car up the day before I leave, just leaving out my feed and any food that I’m taking until I set off. I have a really small car so I have to make sure that everything fits in, and leave enough room for anyone else who’s coming along. Sometimes I end up having to take stuff out. I need a bigger car.
Bin liners are arguably the most useful item you will take. They are versatile – rubbish bag, welly mat, welly holder, laundry bag, waterproof liner for your bag contents, good for putting your hands inside them to touch muddy things. If you don’t have bin liners when you get to the festival gate, turn back (don’t, there’s probably a supermarket nearby).
MYTH: ‘You can never take too much toilet roll’. Yes, you can. Make sure you take some with you and keep some on you at all times because the majority of portaloos don’t have any in. But clutter is your enemy. Space is golden. Too much toilet roll ends up unravelled and muddy all over your tent. No-no.
Don’t take loads of money, but take enough and don’t leave any in your tent. I know it’s not the norm to walk around with £50+ on your person but it’s the safest way. Keep it in a tight, closed pocket or a bag that you can see such as a bum bag or a small over-the-shoulder bag.
Tips for tube feeders: take sterile water. If you don’t usually use it for hydration you can ask your pharmacy to order you some in. Don’t risk flushes with festival tap water especially if you’re a jejunal feeder like me. If you feed into your stomach you could probably use bottled water but sterile water is the safest. You don’t want to come home with an infection. Additional tips for tube feeders: don’t store feed in a tent, take an extra pump and charger, buy a waterproof back pack cover and also wrap your pump in a plastic bag if you take them out the tent.
UNPOPULAR OPINION ALERT! I know eating sausages round the campfire seems cute but it’s not really practical. Go and buy a sausage sandwich for £7 if you’re that desperate. £7 is definitely worth the fuss of keeping sausages fresh from home to campsite and then starting a fire and cooking and dealing with a messy pan/grid. Please be informed that I don’t eat sausages or rely on normal person food. But I still think I’m right. Food that can be kept in a tent include: long life milk, dried food such as cereals, crisps, biscuits, pretty much anything that you keep in the cupboard at home, fruit/salad will last a few days if it’s warm or the whole festival if it’s less warm, anything tinned. Unless you’re a professional with a camp fire or stove, stick to things that can be eaten cold. Many accessible campsites have hot water available, so check, and if they do pack plenty of pot noodles and pasta pots. Festival food is expensive but saves an awful lot of time and effort so weigh that up. There’s usually plenty of choice at most festivals. Glastonbury can serve whatever your heart desires.
HAVE FUN. Go and do stuff that isn’t music related – fair grounds, comedy, indulge in the roaming performers. And treat yourself to shit. When you’re at a festival you can throw responsibility out the window. Get a henna tattoo, or your face painted. Buy some over-priced merchandise to bring home with you. You don’t realise how fun those things are until you leave a festival. You don’t get to spend your money on such enjoyable and sentimental rubbish in everyday life.
I hope this is helpful. At the very least, I’ll be able to look back on this and take my own advice at the beginning of future festivals. See you on the flipside of Leeds!
Gullivers is situated on Manchester’s Oldham Street, right in the heart of the Northern Quarter. The 19th century ale house is bursting with a charm that is both distressed and charismatic. In previous lives, Gullivers has been a hotel, a brewery a jazz club and a transvestite bar, perhaps each leaving a ghost of character, creating an aesthetic that could well be a scrapbook of its history. The current owners have taken the pub back to its roots, restoring a green tiling that screams 19th century gothic. Like its sister pubs The Eagle and The Castle, Gullivers maintains a shabby traditional elegance, contrasting with the punk basement vibes emitted from its Northern Quarter neighbours. Gullivers is an atmospheric small venue space, great for catching exciting early intimate gigs with up and coming artists such as Weirds.
There are two venue spaces at Gullivers, the acoustic lounge and the ballroom. I’m going to assume that the space we visited was the ballroom, which was up a flight of stairs. However, the downstairs pub area does have step free access. There is no access or layout information on the Gullivers website and so I’m going to struggle to sell what they could potentially offer in terms of access. The week prior to this gig, I had headed out to Dot-to-Dot festival and attempted to find out a little more on access with Gullivers being one of the venues involved. I didn’t have much luck so I headed to the gig a little blindly.
The staff were friendly and approachable and I found a ledge to sit on in the venue space so I didn’t have to make any fuss. I think there is an advantage to having a few chairs available in all standing venue spaces, allowing customers with mobility needs to help themselves without making too much fuss.
It doesn’t seem like Gullivers have considered accessibility which is a shame – they could well have a lift or other accessible facilities but I have been unable to source info on their potential. Despite it being up a flight of stairs, it still had a lot to offer. A little online information and awareness of their potential and limitations would open it up to a lot more customers.
MUSIC WITHOUT BARRIERS
In the lead-up to the gig, I’d contacted the band to see if they would be interested in supporting Music Without Barriers. I was made up that they agreed. We met lead vocalist Aidan before the gig and spoke to him about accessibility for deaf and disabled people and the impact that artist support has. It’s always great to meet musicians that are so supportive and using their influence to break down barriers, raise awareness and make a real difference to their industry. Aidan was really pleased to do just that. The voice of the artist is so powerful in reaching both fans and industry professionals so that more people can enjoy live music without barriers. Not only do unnecessary access barriers mean that deaf and disabled people miss out on all that the live music industry has to offer, but the live music industry misses out on everything they have to offer to it. I recently wrote a post about why access to live music is so important to me, you can read it HERE. Nobody should be shut out or excluded from live music – it’s such an incredible and important thing to be a part of. It was great to meet Aidan and so cool of him to put his name and face to such an important campaign. Thank you so much Weirds – you are awesome!
Weirds performing on stage at Gullivers
Weirds performing on stage at Gullivers
If the Creature from the Black Lagoon made psychedelia, it might look and sound like this. As I’ve said before, each time I’ve seen this band I fear they set the bar too high. Each time they monumentally prove me wrong. I’ve written previous reviews of Weirds – the first time at The Ferret in Preston and the third time at Truck Festival. This was the second. I don’t do things in order. A prominent feature and highlight of a Weirds performance is their confidence to bring the performance to their people. Each time achieving communal wow. As someone who always stands at the back and has to avoid the main crowd, this an amazing way to connect with the music. It’s not classic mosh-pit involvement (ugh!) either. They bring their presence, aesthetic and spirit and effortlessly inject it through their physical selves. Gullivers saw the entire band and drum kit reassembled mid track amongst their audience for their finale.
They don’t really need to go to any lengths to make what they do good (and what they do is more than what you might call ‘going the extra mile’), the material is standalone brilliant. It’s hard to put into words what their style brings. Certainly nothing that has been imagined by existing alternative-psych bands. They are unreseverdly and in the most literal sense of the word, alternative. Weirds take risks in all aspects of their creativity and seem to exceed ‘getting it right’ each time. Highlights from their debut album Swarmculture would include ‘Old World Blues’ and ‘Things that Crawl’. Along with ‘Blood Test’ from their 2016 Weird Sun EP, they have the foundations for exceptional live translations. And it does. If they caught our attention at The Ferret, they had us hooked at Gullivers. They get better each time.
I can’t recommend the Weirds experience enough. You can stream their debut album through Spotify, or buy it at a gig! Go and catch them, they’re playing quite a few festivals in the UK and Europe before the season is out! You can tell them I sent you.
I am not sure if anyone has heard but I have spent the last 2 years harping on about the risks of doing my favourite thing – watching live music. The crowds, the dark, the drunkenness. I haven’t explained this part for a while, so for the sake of anyone new: I rely on a special formula (feed) delivered through a feeding tube, over 20-24 hours on average. It sits in my small intestine and exits my body through a hole in my stomach. I have a litre of feed and a pump in my back pack and then a longer tube (called a giving set) connects the pump to the tube in my stomach. The tube is anchored to my abdominal wall by a balloon in my stomach. Here is a visual which I have replaced with my own (better) labels:
Two years ago, in a field in Staffordshire, I was almost touching the front barrier during the sets of Calvin Harris and Sam Smith (for clarity, the musical choices of my friends). I clutched my tube, huddled up to the gals and prayed to the high heavens that me and my baggage would come out alive. And still connected to one another. I felt so battered and sore that I couldn’t stand up straight walking back to the tent. I thought I would never even make it back to the tent. It was genuinely terrifying. What if my tube did get ripped out? I’d be a heap buried within tens of thousands of people with a gaping hole in my stomach, probably bleeding, definitely messy and definitely exposed to infection. In addition to my feeding tube, I have a condition called Ehlers Danlos Syndrome which means I can dislocate any of my joints at the slightest knock and often struggle to stand for too long.
So in a slightly wordy nutshell, that is why my favourite thing to do is a risk.
As painful and terrifying as my experience in a field in Staffordshire was, I survived. But I decided that I would never do that again. Accepting some sort of help can be tricky, especially when you’re used to being independent. There was a time when doing things like everyone else meant a little bit too much to me. It’s probably something I will never completely let go of. I didn’t want to be seen as letting my differences get in the way. But I decided to ask for help, so that I could carry on doing what I loved. And that’s when everything got complicated. If I thought that accepting it in my own mind was tough, I was about to discover that the live music industry had even bigger issues. I’ve often described accessibility as a little bit like an exclusive club, and often, I’m ‘not disabled enough’ for it.
LIVE MUSIC AND THE BATTLE WITH DISABILITY POLITICS
What it means to ‘be disabled’ is a never-ending discussion with an infinite array of answers. I’d never considered myself to be disabled, but attending events like everyone else has serious implications for me. If that makes me disabled then I am undoubtedly that.
Don’t get me wrong, I’ve had some great experiences at some fantastic venues and events. People who have ‘made up’ protocols to allow me to attend and venues that already have everything in place for people with all manner of disabilities. But unfortunately, I’ve also had a lot of crap. Some people seem to think people with disabilities don’t exist. Some people don’t care. Some people go out of their way to make things as difficult as possible.
Sending emails to a venue is a big old game of Russian Roulette. Some people reply, some don’t. Some are helpful, some are rude, some are grey. Dot to Dot, Truck Festival and a list of other venues that I wanted to attend this year have left me feeling utterly deflated. The pre-event stress of finding information, of sending a million emails to multiple addresses and being passed from one phone number to another. The eventual stress of getting in and explaining yourself to 6 members of security on the way. It’s demeaning.
Lately, I admit that I have become lax. I’ve stopped sending emails, I’ve stopped asking. I’m doing something that I said I’d never do – winging it.
As well as the lead up to Truck festival being horrific, we encountered a really unpleasant member of staff on the platform on the first day which meant that I didn’t really want to use it. I was really looking forward to seeing Sundara Karma and since I’d struck the platform off, I’d decided to just join the back of the crowd. I’d watched Sundara Karma from the back of the crowd at Glastonbury and it was fine. Truck Festival turned out quite different. One minute I was stood at the back of the crowd and then quite quickly, people joined behind. And quite quickly I was squashed in. The most squashed in. Worse than Calvin Harris squashed in. We’d watched the Big Moon from down the front and when it started to get rowdy, we left to watch somewhere safer. But this time there was no way I could get out. The usual knocking and tube tugging ensued and although I made it out eventually I was pretty sore. But since everything seemed intact, I assumed I’d been lucky. Again.
However when I got changed at night I noticed it had been bleeding which wasn’t a particularly great sign.
It did not get any less sore as the week went on. It was getting worse and on Wednesday, I took my clothes off to find an explosive bleed. The out of hours helpline sent the district nurses out at 3am on Thursday morning who cleaned me up and I saw my GP later on in the day. He said it was bruised and agreed that it was probably displaced. On top of that, he diagnosed a Staph infection, initiated by the trauma. He did me an urgent referral up to the hospital and told me to go home and wait. On Sunday, my tube fell out.
This is where I now find myself, from doing the same thing that a thousand other people were doing just over two weeks ago. Honestly, sometimes I feel like I’m making a massive song and dance (pun intended) over nothing and now I feel a bit stupid for not being careful. There’s no winning this game! I haven’t had any feed for over 24 hours and my tube is scrunched up in my stomach in an attempt to keep my stoma tract open. I feel dehydrated, I have a headache and the pain is the same as when I’d had the stoma freshly created 5 years ago. My tube has broken and fallen out plenty of times before and waiting to get it replaced is the most frustrating thing. But waiting when I know this is partly my fault is even more frustrating.
I’ve spent the last two years kicking up a fuss about making music safe for everyone. It’s been undignified at times. I have recently toyed with the idea of packing in my gigging days. Constantly justifying my disability has made me notice my differences in a much more negative light. But being at a gig is the biggest distraction and my favourite feeling.
Leeds is in two weeks. I’m crossing my fingers to be fixed and healed in time. I hope to see Sundara Karma again at Leeds, and this time I will definitely be watching from the platform.
Ok so it wasn’t a complete disaster. I survived and despite it all, I had some fun. I’ve split this into two, a general review of Truck and a massive review of the weekend and multi-music review. Let’s hash out the good, the bad and the hideously ugly.
WHAT THE TRUCK?
If you follow me on social media then you’ll already have an idea of the absolute saga that I had in the lead up to Truck Festival. If I thought that was bad, the worst was yet to come. However, it wasn’t all bad and if it hadn’t been for the bad being so very bad, then Truck Festival could honestly have been the best festival I’d ever been to. The set up itself was great and the music was what my dreams are made of. Every let down was due to bad attitudes and what I felt was a frustrating lack of shits given. Here’s the pros and cons:
The campsite was small, so no long walks to the toilet. It was on a slight gradient but fairly flat and easy to get around.
We could park our car on the campsite which meant no long walks or travelling across site with our stuff.
On the way in, accessible campers followed a different route and collected their wristbands once on the campsite meaning less queuing.
The campsite had one ‘accessible’ shower and three or four accessible toilets (which was enough because there weren’t that many campers)
The toilets were clean and always had both toilet roll and hand sanitizer in. If you are a seasoned festival goer, I know you just won’t believe this. Have you ever heard such a thing?!
The whole festival site is also quite small – it took less than 5 minutes to walk from the tent to the arena and it was easy to stage hop between acts.
It was also well laid out and easy to navigate. Even for someone with my sense of direction, it was impossible to get lost.
They didn’t over-fill the festival – it sold out but the crowds were manageable and there seemed to be plenty of room on all the campsites and on all the stages.
The viewing platform on the main stage (Truck Stage) was ample size for everyone to stand on without being crowded and with enough room to have a dance.
The music was amazing. It had nearly every single one of my favourite bands on the bill. I will probably never go to another festival where the line-up is so tailored to me.
The stages were staggered with 30 minute slots and 30 minute gaps between acts in the day (with headliners and pre-headliners getting 90 minutes or an hour respectively). This meant that there was always music on. You could watch a 30 minute set on the Truck stage and then hop over to the Market Stage where another 30 minute set would start whilst the next act set up on the Truck Stage. Then as the act on the Market Stage ended the next act would start on the Truck Stage. It was impeccable coordination of music and set slots across the stages.
The food/beverage venders were all from charities. Our favourite was the wonderful chariTEA tent, for Ronald Macdonald Children’s Charity. An army style shelter complete with fairy lights, bunting, picnic benches and a mini pool table. The cosiest respite from the cold and torrential weather. They made a great brew and they were the friendliest bunch.
The organisation in the lead up to the festival was dreadful. Nobody answered emails in less than two weeks and that wasn’t without a bombardment of emails in the meantime. I emailed two different email addresses in an attempt to get a response (the access email and the general info email), and when they replied at all it was with conflicting information. It wasn’t until 6 days before that it was confirmed that they would be locating a fridge for my feed and that there would be facilities to charge my pump. I sent this information over to them before I booked tickets back in February and was told to book a ticket and someone would get in touch. They never did.
There seemed to be no uniformity to the tickets. My friend received two tickets together – one ticket labelled ‘accessible ticket + PA’ and one general adult ticket in the post – and I just received one general adult ticket in the post and then two separate PA tickets via email (I only took one PA!). The first PA ticket arrived via email 3 days before we set off for the festival and the second on the evening before we arrived (we’d already set off!). The difference between our tickets left me panicking as I had nothing confirming my need for a PA. I received a phone call telling me that Ant’s ticket did not exist and that everyone had tickets like mine. Whatever. It was then an anxious wait for my PA ticket to arrive in my inbox.
The ‘access pack’ (just a few pages of general information) didn’t land in my inbox until a couple of days beforehand either.
The access pack didn’t really give us any useful information. It told us there was limited accessible parking but not where and it told us to follow signs to ‘accessible camping’ when there wasn’t actually any signage. It didn’t really explain much about the campsite or access at the festival so we weren’t really sure what to expect.
When the access pack was sent out, the emails of all the access guests were leaked because they were cc’d and not bcc’d.
The ‘accessible shower’ had step free access but then a platform had been put in where the shower was, which seemed to defeat the purpose.
The festival opened two hours before the music started. It was ok for us because we got there early and drove straight onto our campsite, but apparently the queues to get in standard camping were long. We spoke to one person who queued for three hours. The first few acts only had one or two people watching which was a massive shame for them. We watched a band called Leader on the main stage. There wasn’t much of a crowd for them and their front man joked that he was planning on crowd surfing at some point.
There were 5 large stages (1 outside and 4 in tents) and 4 smaller venues (cinema tent, bars etc) but the Truck Stage was the only one which had a viewing platform.
There was an incident on the viewing platform on the Friday where a member of staff humiliated another customer in front of us and then attempted to verbally abuse and intimidate us for not joining in or agreeing with the public outing and embarrassment of this disabled customer.
I don’t often talk about the shitty side of live music on this blog, instead I try to promote the good practice when I see it. When I do come across something that doesn’t sit quite right, I have usually been able to engage with events or venues before or after. Engaging as opposed to complaining has mostly been a positive experience for me.
With Truck, I felt like I was banging my head against a brick wall. I’d paid for my ticket and they couldn’t confirm that my medical and access needs could be met without a bombardment of emails right up to days before the festival. It was so stressful that I swore I’d never go to another festival again. Whilst it’s good to promote good practice, it’s still important to talk about bad practice and the impact it has on an inclusive live music experience. If I only promote good practice, it may seem like there’s no work to be done. That just isn’t true and whilst the industry has come a long way, we’re far from a day when it’s fully welcoming and inclusive. The way that one member of staff (essentially, an employed bully) was allowed to treat disabled customers was beyond the pale. It’s incidents like this (though I’ve never witnessed anything to this degree before) that make me feel anxious about attending gigs at all. Nobody should feel like they aren’t welcome at live music. Live music is my escape and distraction. It should not be a place for anyone to feel vulnerable and humiliated. Since my attempts at engagement have already bordered on complaining in the lead up, I’ve decided not to put in any further complaints with the festival. I don’t think anyone would gain anything or benefit from it in this instance. Besides, I’ve seen complaints galore flying about the internet. This festival is an example that live music can still be a real unnecessary stress for people with access requirements.
At this point I will shamelessly plug the fact that Jonny and I are taking part in Parallel London for Attitude is Everything and we would really appreciate any donations. Attitude are working to create a more inclusive live music experience for deaf and disabled people. Please sponsor us make things better! You can sponsor us or share by clicking here.
RAIN IS JUST LIQUID SUNSHINE
As my first list points out, the festival wasn’t a complete let down. In fact, we all managed to have fun despite it! I found this festival the least physically demanding out of any that I’d been to, probably due to it’s size and being able to park on the campsite. I think, if we put the bad attitudes aside, this could have been a perfect festival to try for a first ‘taster festival’ (but don’t – it’s not worth the stress!).
As well as the music, there were rides, comedy and cabaret (great times were had!), a kids yard and a personal favourite – the free hammock ground! There were the usual festival shops (worryingly, none selling camping supplies!) as well as face painting and hair braiding stands.
There was also a merchandise tent, which sold a smashing collection of vinyl, CDs, books, posters and vinyl as well as official Truck merch. The merchandise tent also hosted several meet and greet sessions with many of the acts that were playing the festival over the weekend. After busting out a work-out with Mr Motivator first thing on a rainy Saturday morning (‘rain is just liquid sunshine!’), Katie and I were first in the queue to meet the man and buy his book. Mr Motivator’s workout was definitely one of the highlights of my weekend. It was SO FUN. I never laughed so hard (at myself). That said, we all know how unfit I am and 4 days post work out my body is still utterly unimpressed about those 35 minutes.
MUSIC + WEEKEND REVIEW
When we arrived on the Friday, the festival was incredibly windy but the ground was dry as a bone. It was so dry that we struggled to get our (now very bent) tent pegs in the ground. By the evening, things had changed dramatically. We were up to our ankles in mud and soaked through. Friday, was also my birthday and with the exceptional dampener of the platform incident it was the best birthday ever. Imagine: me, at a festival, not working and it’s my birthday. It’s the dream. Live music, comedy, a hammock and a ride on the helter-skelter. The full works.
After we’d swung about in the hammock, and experienced the intense thrills of the helter-skelter, we went to see some comedy in The Rockin’ Chair bar. First up was a musician called Filthy Phil who had written some hilarious originals and Disney spoofs. This was a family festival so he attempted to keep it clean but insisted that ‘filth is in the mind of the beholder’ anyway. We were creased. The second comedian we saw (unfortunately, I didn’t catch his name?) was a psychology and philosophy student who played a game called ‘Is this a quote from Kelly Clarkson or Nazi Nihilist Niecher?’ Tom competed in this one, against a 7 year old child and an art student. After a couple of rounds a theme emerged – the answer was always ‘both’.
Next we headed over to the Market Stage to watch Goat Girl. Jonny and I caught Goat Girl when they supported The Moonlandingz back in March. They were excellent and I was really excited to see them again. The stage was reasonably quiet so we headed to the front. When the act started it was quite obviously not Goat Girl, but quite an interesting synth band who didn’t tell us their name and only introduced themselves as ‘obviously, not Goat Girl’. They were very good but we didn’t stay for their full set because we decided to run to the main stage and try and get a good view for The Big Moon, who I am always very excited to see! This is the second time this year and my fourth time catching them live. We started off in the crowd, but it got a bit mad and I didn’t want my tube pulling out so we headed on to watch from the platform. They were excellent as ever. My favourite Big Moon song is still ‘Formidable’ which they smashed right out the park as always. I bloody love going from low key ‘oooommmmhh’ to 100% fierce in less than half a moment whilst belting out ‘SO LET ME HEAL YOUR BATTLE SCAAAARS!’ at a live show. Their cover of ‘Beautiful Stranger’ is also pretty special live and always gets a really good reaction from the crowd. In my opinion, these girls are the very best girl band right now. They have a great stage presence and have gone down very well each time I’ve seen them with both new and existing fans alike. Their debut album has just been nominated for a Mercury prize which would be very well deserved if won. I have tickets to go and see them in Preston later on in the year, so I’m pretty excited about that.
It was as we were heading off the platform back to The Market Stage that the first part of the ‘platform incident’ happened so I felt a little distracted as we watched Dream Wife. I just felt sad for the man because having your disability unwillingly broadcast is the most unpleasant thing. I knew how he felt and it’s horrible. Dream Wife were still amazing with at least 5 times as many people watching as the first time we saw them at Night and Day in Manchester (which I wrote about for Independent Venue Week). As we were delayed a little coming off the Truck Stage we walked in part way through ‘Lollita’ which, I assume (and hope) was their first. I love this band. 1/3 Icelandic, 2/3 London and 3/3 girls having a good time. There was an obvious ‘wow’ moment amongst Dream Wife virgins as they smashed out ‘Fuk U Up’ towards the end of their set and The Market Stage was the best place to be at that time. They are equal amounts joy and ferocity and it’s contagious. After that, I felt fierce again, because that’s live music for you!
After Dream Wife, it was back to The Truck Stage for the rest of the platform saga whilst we watched Hot 8 Brass Band, who I had never heard before but absolutely love. Like Rag n Bone Man but more upbeat and like Gregory Porter but with more ass shaking and communal dance moves. Spirits were brightened by another member of security treating us to his best twerking.
From then it was onto Hinds. I’ve been listening to this Spanish girl band for years and itching to see them. They performed last year at Leeds but it was whilst I was on shift somewhere else so I didn’t get to see them. After at least two years of waiting, they did not disappoint and despite the rain crashing down, their energy took us through. Highlights include periodic impromptu Natasha Bedingfield renditions of Unwritten, (‘feel the rain on your skin’) as the crowd licked rainwater tears from their cheeks and the best reaction to ‘OOOH JEREMY CORBYN’ that I’ve ever heard. It went like this:
Hinds: I can’t tell what you’re saying? Do it louder for me…
Hinds: I’m so sorry, I can’t tell what you’re saying.
[Crew member runs on to tell them]
*plays next track*
After Hinds, we went to the tent to try and dry off (unsuccessful). Tom and Katie sang me happy birthday and we huddled round three birthday candles for approximately 40 seconds in an effort to dry/thaw ourselves out.
We avoided the platform when we went back for the pre-headliners, which was Slaves. It rained harder than ever but Slaves gave us every opportunity to jump, dance and thrash our bodies about in a bid to keep warm. Despite the horrific conditions Slaves were one of the best bands of the whole weekend. It’s the first time I’ve seen them live and they put on a heavy performance with incredible energy. In between tracks they were funny and took some time part way through to deliver a sincere mosh pit safety announcement. They seemed to bounce off the crowd equally as much as the crowd bounced off them and went down equally as well between tracks as they did during them. Their set was an hour long but somehow seemed to flash by so quickly because all good things do. I have no pictures of Slaves because it rained so heavy that my phone stopped working for the rest of the night.
Between Slaves and the headliners, Franz Ferdinand we went to our favourite chariTEA tent to try and warm ourselves up. It was absolutely bucketing down.
Franz were our first headliner and whilst the rain continued they delivered a shit hot setlist with back to back hits and 100% noughties nostalgia. The mood and the energy was so high. The usual ‘Truck Fest, how are you feeling?’ was met with a unanimous ‘wet’ but they made it better. Everyone was dancing, jumping, bouncing and splashing themselves with mud. It was as good as it gets when you’re that cold and wet. About three quarters of the way through the set, we headed into the food tent (next to the stage) to try and get just a little bit of shelter from the rain because it had been so heavy and so stubborn for what seemed like forever. After Katie and Tom had grabbed a pizza we went back out to dance in the rain to the last few hits. They finished with ‘Take me Out’ followed by ‘This Fire’ (lyrics that went more like ‘this rain is out of control’ buzzed through my head).
In an attempt at being late night festival club animals, we headed over to The Temple to catch an Idris Elba DJ set but we decided that generic drum and base noise paired with strobe lighting was nothing to hang about in wet clothes for so we went back to the tent to peel said clothes off. I think I wore nearly every item of dry clothing in my bag in an attempt to warm up. I closed the face of my sleeping bag right up but I was too cold and wet to the bone to get proper sleep.
In the morning, we hung our clothes round the mirrors, hooks and seats in the car and turned it into a giant tumble drier with the hot air on. I sat inside to dry myself out and finally warmed up whilst belting Youth Is Only Ever Fun In Retrospect out through my CD player.
We did the Mr Motivator session at 12, followed by the meet and greet in the merch tent. I’d intended on watching The Night Café, Dead Pretties, Life, and Will Joseph Cook but it was just lashing it down heavy as ever and I’d only just dried my clothes out. I know that it’s bad festival spirit, but we went back to the tent, had a nap and listened to Will Joseph Cook from there since we were camped right behind the stage (Charlotte, just so you know, I would have definitely stood out in the rain if you were there). Also, had I seen these four bands, this already exceptionally long blog would have been at least four paragraphs longer.
Once it eased off, we headed back out and hung around the Truck Stage listening to a boy band called Vant, who were on before Sundara Karma. Vant had a decent sized crowd until they encouraged a mud fight and except for a few brave (read: smashed) souls, everyone fled the area pretty quickly. How to quickly lose your audience at a muddy festival.
As the stage was setting up for Sundara Karma, we headed in to the front since there was still plenty of room. When the rain came down heavier Katie and Tom wanted to head into the dry food tent. But I’d been looking forward to this since forever and at that moment I wouldn’t have left that spot for hell or high water (I can confirm it was the latter). The crowds were good for only one thing – sheltering a little from the rain. After Katie and Tom left, the crowd thickened and I couldn’t get out which was not a good situation to be in. It got really wild and I clung to my tube but it was still ragged left right and centre. When I got changed later on, it was bruised and had been bleeding. I’m just glad it stayed in. However much I like a band, I’ll try not to put myself in that situation again. I didn’t really want to go back on the platform after the incident of the previous day, but after this experience we did give it another go for the next act.
All this aside, I was still watching Sundara Karma and they were perfect as ever. They played flawlessly despite the horrific conditions, delivering on hit after hit. My heart bursts with happiness every time they play ‘Olympia’ and I was just ecstatic to be there. In the stressful lead-up to Truck festival, I had clung to the prospect of Sundara Karma’s set and told myself it would all be worth it. Despite the rain, despite my crowd beaten stomach it was all so worth it. Sundara Karma are as charismatic as they come. I doubt that they will ever lose their magic for me. I’ve played the hell out of Youth Is Only Ever Fun In Retrospect, both my vinyl and CD. Having the tracks brought to life when they’re played live is such a treat. The new songs are spectacular. ‘Explore’ was as well received at Truck as it was at Glastonbury and it was so exciting to hear ‘Lakhey’ live for the first time. I never wanted their set to end but equally, I was relieved to get out of the crush. As ‘Explore’ gathered momentum for finale, the crowds got really wild and I decided that it was probably as dangerous to stay as to fight my way out and so I attempted to escape. Lesson learned!
The next band we saw was Pumarosa back on the Market Stage. I am certain I saw Pumarosa at Glastonbury, but they either played a very different set or I remembered them wrong (probably the latter). Either way, at Truck I really liked them. They made some fun, danceworthy indie-synth music. Indietronica is a new term that I have discovered and I will use here because I enjoy it.
Next up, we headed over to The Nest to watch Yak. None of us had seen this band live before, but Katie and Tom have some tickets to go and see them again later on in the year. They were great. Quite heavy but at the same time… indietronica. I think The Nest was already running behind schedule but Yak also took an excessive amount of time sound checking. They took so long that people were leaving as they started their set which was a shame because they put on a really good show. Even as they started the set they were still tinkering with the sound. I’m no sound expert but it seemed pretty good and I suppose quite sharp after all the fine tuning. They were well received by the crowd that was remaining and gained a new fan in me.
The late stage time over on The Nest meant that The Wombats no longer completely clashed with The Moonlandingz. Instead, The Moonlandingz now clashed with The Libertines. We went back onto the platform for the first time since the previous afternoon and belted out ‘Techno Fan’, ‘Tokyo’ and ‘Let’s Dance to Joy Division’ which was potentially another highlight of the weekend. The Wombats were the first band that me and Katie saw live together so it brought back memories. That was also the night when we saw Sundara Karma for the first time!
With The Nest being behind schedule, this meant that we only caught half of The Moonlandingzset as we decided to head to the Truck Stage to watch The Libertines who were headlining that night. The Moonlandingz were smashing. I missed them at Glastonbury but apparently Lias fed bread to the crowd (also had a loaf cling filmed to his head) and he vomited all over the stage. He had an early set at Glasto and rock n roll don’t mix with early slots. He was much fresher this time, no bread, just poncho and sunglasses. The tent packed out so we had to watch from outside. Tom managed to stand inside and said it sounded better. I love how The Moonlandingz inject a theatrical twist on alt-indie without it becoming stupid and ‘try hard’. It works so well. It’s entertaining, charismatic and moreish. It’s surreal and whilst they don’t take themselves too seriously, their music is creative and meaningful. ‘Strangle of Anna’ remains my favourite track and it captivates me even more so live than recorded.
It was hard to prize myself away from The Nest, but we’d made a decision to go and catch TheLibertines. I’d seen The Moonlandingz before (and I’ll see them again!) but I’ve never caught The Libs. The rain had finally eased off and it wasn’t as cold so it was much easier to take in the show. I know it’s so basic of me but ‘Don’t Look Back Into The Sun’ is one of my favourite songs of all time. Not because it’s basic. I just know how predictable I sound. I was super excited to hear it live. I really thought they’d save ‘Can’t Stand Me Now’ until the end but they played this early-mid set and saved ‘Don’t Look Back Into The Sun’ until last. For a moment I thought they weren’t going to bother but it was a great way to end the second night! I’m really glad I got to see this band, they have such a massive catalogue of songs and so many albums. A few of the songs in their set I’d never even heard but lots that I’ve only ever heard on record were brought to life.
Appropriately named as at various points throughout the day, the sun did shine. It still rained. A lot. But we saw some music without our hoods up.
We stayed in the tent for most of the morning and early afternoon, resting and listening to whatever hit the main stage. We really enjoyed listening to Oxford Symphony Orchestrapresenting ‘Sunday Classics’. They were amazing and seemed to be getting an awesome audience reaction. They played an Abba medley and the crowd sang their hearts out. When they were finished, the crowd begged for more and they came back on and smashed the Abba medley out again. I kind of wished I was there but I also kind of liked being dry for a bit.
We caught some comedy in The Rockin’ Chair and then we headed over to The Nest to catch Weirds, our first band of the day. I wrote about our first time seeing Weirds supporting Wytches at a local indie venue The Ferret, and we saw them again at Gullivers in Manchester. They were cool enough to get involved with Music Without Barriers and took some time to talk drums with Jonny. There’s a blog pending for this. Since they’ve always been pretty creative in bringing their music into the audience, I did wonder what it would be like seeing them at a festival where that sort of thing is more restrictive. But music without barriers is, as music without barriers does. They smashed out a belting set on and off stage as usual, which, this time included Aidan, a mic lasso and a good portion of the audience. I think festivals can be a good test for all performers, old and new. Some can hold an audience and some can draw them in (without using their lasso). The tent was sparse to begin with and full after only a couple of songs. It’s no surprise to me. They don’t just produce quality sound and great material, they’re really creative performers. Weirds are an explosive and captivating psychedelic phenomenon. I’ve seen them three times now and each time I’ve been hooked. Each time I feel like they’ve set the bar too high and too soon and each time they prove me wrong. The audience always seem so excited in a way that I have never seen with any other band. It was nice to say a quick hello to half of Weirds after their show and lovely that they remembered us from Gullivers. They were looking incredibly fresh considering the effort they’d just given. If they’re playing near you, I highly recommend. And please invite me.
From Weirds, we saw Cabbage on the Truck Stage. I’d seen them at Old Trafford Cricket ground a couple of months ago for the first time. I enjoyed them more the second time round and ‘Terrorist Synthesizer’ has featured heavily on my playlist since getting back. I absolutely love this track! So often is the case that I hear something live and I just find a love for it. Cabbage seemed much livelier this time round and I think we all really enjoyed them. The weather had finally started clearing after Cabbage which meant we were able to watch Maximo Park in the sunshine!
I saw MaximoPark last year headlining The Festival Republic Stage at Leeds which had a much more underground vibe to the sunny Truck Stage. It seemed appropriate – their new album, ‘Risk to Exist’, has a quirky, bright, and bouncy feel. Or maybe the sunshine just brought that out. The new music is still very much Maximo Park. There’s no change of direction but that certainly does not make them a one trick pony. ‘Risk to Exist’ simply squeezes further goodness from the Maximo Park fruit that we all love. It still makes me feel nostalgic for their earlier work but at the same time, I have something new and fresh to enjoy. This is really exciting. They had a massive crowd – much bigger than Leeds and everyone was sharing a communal love. I am absolutely in love with ‘What Equals Love’, the single from their new album. Hearing it live was amazing. Apparently, they ran over and were told to cut a song out, which was unfortunate. But they finished with ‘Apply Some Pressure’ so we had absolutely no reason to go away disappointed. We rated the bands over the weekend (out of 9 apparently) and Maximo Park scored the highest collectively. 9’s all round. SO GOOD.
Whilst they set the stage up for The Vaccines, we nipped over to the Market Stage to watch Twin Atlantic. The tent was packed out – perhaps the only time when an act overfilled their stage. Due to this, we couldn’t really hear or see them properly so we headed back over to the Truck Stage. This was favourable anyway because I love watching The Vaccines crew set up. For the last couple of years they’ve had a red back drop with box lights. It gets me so excited to see that familiar set being built on the stage. This is what I was here for. In the stress of the last few weeks and months I’d forgotten to get excited for them and it happened all at once. Not only was this the finale but this was the highlight of my weekend. Last year in the lead up to Leeds Festival I didn’t have my shifts and I felt completely sick at the thought of having them clash with The Vaccines. As Megan put it ‘You didn’t even get this worried about your exams’. I had different stresses this time, but at least I knew if I survived then I’d be seeing The Vaccines at the end of it all.
The Vaccines played new material, which I’d been hoping for at Leeds and I had heard snippets through other fan videos at the very few shows they have played this year (they spent a lot of time previously touring like mad and lost a drummer, so they do have excuses). They never gave the name of their first new song but the second two were called ‘Your love is my favourite band’ and ‘Rolling Stone’. They were all shit hot and I am not bias. I know you think they could probably do no wrong for me but their new tracks are SO GOOD. Ya’ll going to love them. The Vaccines seem to have made very different music on each of their albums and this seems to follow the same pattern. Their new music is neither classic What Did You Expect, experimental Come of Age or radical English Graffiti. In my opinion though, it is probably the most universally catchy and loveable. Your Love is My Favourite Band is music to fall in love to. People complain about hearing unheard songs at gigs or festivals but quite happily, I would explode at a full set of new material from The Vaccines. They played a mixed setlist, which they seem to spice up every time they play. I’ve never heard the same combo twice. After they’d opened with a brand new song, they flew straight into ‘Wrecking Bar’. If you don’t scream with Arni on this one then you’re doing it wrong. They also played ‘Blow it Up’, ‘I Always Knew’, ‘Minimal Affection’, ‘Dream Lover’, ‘20/20’, ‘Handsome’, ‘If You Wanna’, ‘Teenage Icon’, ‘Bad Mood’, ‘Melody Calling’, ‘All In White’ and my life anthem and favourite song ever – ‘Wetsuit’. As always, they finished with ‘Norgaard’ which has an absolutely euphoric atmosphere every time. Norgaard always peaks the crowd’s energy which eases the pain of the knowing it is the end. What a setlist right? They finished ten minutes early but they were proceeded by a beautiful firework display to Undercover – the closing instrumental track to the English Graffiti A side. What an end to the weekend. Through Norgaard, The Vaccines let off confetti in their signature red and when we landed back at the tent, it sprinkled our tent and pitch.
In the horrible lead up to Truck festival I’d sworn to see out my remaining tickets and then put my live music days to bed for now. But seeing my favourite band and getting to hear their live music makes that incredibly difficult. I know if they decide to tour LP4 that keeping myself away would be at least as miserable as enduring the trauma of shitty music venues. We’ll see.
So. There we have it. 6022 words. Congrats if you made it this far. Truck Festival was all of the feels. The best of times and the worst of times. Thanks for the emotional rollercoaster!
Mostly, thanks to Katie and Tom for keeping me sane and giving me the best birthday ever!
The places I like best are those that are naturally accessible – as in, there’s no special arrangements that need to be made. The venue is already on a level surface, there’s already places to sit out of the way and anyone (disabled or otherwise) can watch safely from where they choose. This is rare but great because it means I don’t have to worry about explaining myself to anyone. The Ferret, a small indie pub in Preston city centre, ticked all the boxes. I’d been in the odd time on a night out years back, but never been to a proper gig.
The main venue space of The Ferret is all on a level floor from the entrance all the way through. It’s a very small venue space but a great shape and nice and open. There’s a couple of wooden beams in the room which on one hand may be considered obstructive but in terms of access, made useful gaps in the crowd (because nobody wants to stand behind a block of wood) so there’s no overly dense areas. It’s also great for the aesthetic. There are diner style booths to the left of the stage (great food also served!) and when we went, there were a couple of chairs and a table in the main venue space. The bar is easy to get to and there is an accessible toilet in the main venue space (regular toilets up a flight of stairs). I’d sent an email to the venue in advance as I hadn’t been for a few years and was told to ask at the bar on the night if I had any problems. I didn’t and everything worked out perfect. There’s no raised area, which would be difficult in a venue like this. It means it would be an obstructed view if you were sat at the back but people were pretty decent and respectful, letting wheelchairs go at the front. I sat at the side and could still see a good half of the stage when I was sat down. It’s obvious that a real effort has been made in terms of access at the Ferret from the layout of the room, positioning of the accessible toilet and level entrance. Such a find is a rarity and even more so for a small indie venue.
Wytches were headlining the night and were supported by a fantastic band from Leeds called Weirds and a local band called Psyblings. The Ferret is a cool venue to see any live music but aesthetically suited to punk/psychedelic bands. Weirds graced us with an incredible performance, delivering on and off the stage, dishing out psychedelic pie from on up the bar, up the staircase and on the furniture. It wasn’t just a performance, it was an experience. The crowd was pretty lively which kept me and my loose hanging tube well on our toes. They were so energetic and creative. The band injected epic vibes which continued to hang around long after they’d left the stage. Great first impression – Jonny and I both bought an EP from the merch stand and then booked to see them again! If you like heavier experimental psychedelic stuff I can’t recommend this band enough. Listen to their studio music (they have a new album called Swarmculture) but please go and experience them live.
Wytches then landed their performance in the Ferret, incorporating the venue projector for a classic horror montage. The visuals left us tripping. They were brilliantly bizarre and totally unique. I’m a fan of classic trashy horror so I thought this was a perfect way to back up the music. A well worked artistic twist that made for a multi-dimensional performance. It distracted a little from them as individual performers but it did not distract from them as a band. They used minimal lighting and their thrashing figures cast shadows across the stage which crept up to the montage. Their sound was edgy, raw and unfaltering with steady energy throughout. They had clearly put a fair bit of work and effort into this tour and it really paid off. Jonny has seen Wytches a few times before but it was my first time so it was very special. Gripping and tripping.
Apparantly I didn’t take any pictures because I was too into it or something. But look at this video Jonny caught for a glimpse into the amazing Wytches aesthetic.
All in all, The Ferret is seriously modest and underrated. Great access, great layout, friendly and helpful staff and excellent live music. I just had no faults with it. It was as good as it gets for a small venue. I can’t wait for my next experience! Wytches exceeded expectations and Weirds were incredible. Jonny and I went to see them headline at Gulliver’s in Manchester a month later. There’s a blog to follow, so I won’t spoil it but they had a bag of new tricks, a brilliant support act, and also got involved with Music Without Barriers. Watch this space!
I have great memories of wonderful nights at the arena – I was 10 when I went to my first event at the MEN and I’ve attended too many to count since then. At the end of every gig, I stand in the foyer waiting to regroup with friends who’ve stood or sat elsewhere. Moments after the lights are up I’ve been in the queue to buy merchandise in that same foyer, every time. But this really isn’t about me. I wasn’t there. Each time the lights have gone up I’ve grabbed my merchandise, met my friends and we’ve literally danced our way back to the car, then relived our gig all the way home. My memories of the MEN are so different to those who attended Monday night’s concert. It’s not that ‘it could have been me’, it’s more a case that those people are the same as me. They had the same story with a different ending. They counted down the days and then let their hair down. They soaked up the atmosphere like thirsty music-crazed sponges and when encore hit, they too probably willed it to last just a few moments longer. They did everything I did; they planned meticulously, talked about it almost every day and they were so excited. Their gig was everything to them as mine are to me.
These gig-goers were also young children, only just bursting into the wonderful world of live music. An arena as large as the MEN (that’s the largest indoor arena in Europe) can be overwhelming even when you’re having fun. I remember feeling overwhelmed the first time; so many people, so many loud noises, people shouting, things being thrown, darkness and flashing lights. Thousands of people making their way in and out and at the same time. So many doors, entrances, exits, a complete maize. Concerts are wild and crazy, people are noisy and weird. But that’s the beauty of it. Live music is a place where you can be yourself. Be loud and with confidence. Being a child attending a large venue as the MEN can be terrifying. But events like that are supposed to be their introduction to an amazing world.
Live music is such a beautiful thing. A place where you can congregate with people like you, or people completely not like you, and share something communally wonderful. Live music should be a safe place where you can escape the stresses of your reality, and be care free for a short time. Many of those young girls will have been amidst their GCSE’s and more than deserved a night to feel good again and relieve a bit of stress. Many of them will have been much younger and this may have been their first ever concert. They were supposed to discover a safe place and fun world, as I once did.
I hope the survivors of this awful event can find that world again and realise that live music is there for them and not against them. I hope they can find the beauty of live music because it will always be there and they don’t deserve to be shut out of it by one hideous man.
It’s so much easier for me to say keep going, because I wasn’t there and going back to an event after that requires serious courage. But I can’t will people enough to keep going out, keep supporting your live music scene and keep doing whatever it is that you love. It’s important now more than ever. I attended two events over the weekend and I’ll be going to another one on Wednesday – we will not be beaten. We also attended the vigil in Manchester on Tuesday and these events show that there are so many beautiful people to hold up the city, the country and the live music scene. Attending these events made me feel so much better. There’s so much good in the world – we can’t let ugly people cloud that.
So, try and be brave. Go and add your body and your face to whatever it is you love and make sure that you’re a part of keeping it alive.
* This is a slightly different post to usual. It’s a little more controversial and political. Understanding the ramifications of being ‘controversial’ and ‘political’, I’ve sat on this, and edited and re-edited it but tried to keep it honest. I was nervous about posting it but I felt it was important. I take a keen interest in the NHS because I am dependent on this service and at its mercy. My opinions are formed as a patient of 24+ years and my research of public data released by the NHS. *
The situation with the new American Healthcare Act (AHCA or ‘Trumpcare’) had me a little (a lot) riled. I’m a member of a couple of Facebook support groups for my conditions and some of them have quite a large following of Americans. These are Americans who depend on funding for their healthcare. They don’t just suffer from aches and pains that require a few prescription painkillers. Those things are important too, because for many of them, their pain leaves them bed ridden and on the sort of drug cocktails given to women birthing children. But they also rely on funding so that they will survive. To put it bluntly, this new health care act will kill them. They’ve just been told they are unnecessarily terminal. Not because modern medicine won’t save or improve their lives, but because some ignorant, selfish, and vile dick-heads have decided it so.
One of the big issues is that the health care act intends to allow insurers to discriminate against people for having pre-existing conditions. This means insurance companies can refuse to pay for the treatment that keeps them alive. Think of their insurance company as our NHS and take my condition for example. What if I walked into A&E with dehydration, or as was the case last year after a whole month without nutrition. Essentially these things would kill me. But what if I walked into A&E and they said ‘sorry we will not pay to save you because you have a pre-existing condition’. What they mean is, I have a diagnosis. People with Ehlers Danlos Syndrome and many chronic conditions fight tooth and nail to get a confirmed diagnosis. They fight so that doctors will test them and so that they have some results that say ‘this is what is wrong with me, now I can be placed on a treatment protocol that will save and/or improve my life’. With AHCA, a diagnosis will have the opposite effect. A detrimental effect. A diagnosis now blocks you from receiving treatment. If you have a diagnosis, this will be an excuse to be refused by insurers.
To put this in perspective, I read something in a Facebook support group last night that made me feel sick to my stomach. People were discussing how they could get their diagnosis removed from their medical records. Those diagnoses that they had fought so hard for. Because they desperately need to ensure that they can recieve help – to survive. Someone was cancelling an appointment for their young baby to prevent them from receiving a diagnosis. This one person represents an army of parents and the survival of hundreds of thousands of children in America.
In this country, we are sickened by it. The reaction I’m receiving is that of shock. People share posts on my social media about how lucky we are to have the NHS, and say things like ‘for all its faults at least it’s there.’ So let’s take a look at those faults and try and line this up with AHCA.
The NHS is seriously underfunded. It’s already working over capacity and yet funding cuts continue (http://www.bbc.co.uk/news/health-39031546). It may be free and it may technically still exist but what use is it if it doesn’t serve it’s primary purpose – ‘free healthcare for all’?
Let me first point out that I am not saying that the NHS doesn’t do amazing things. Quite frankly in my opinion, it does an incredible job. The people that work in the NHS are super-human. The NHS only functions because the people who work there really care. I know this because I’ve spent the past 3 years living with 3 nurses who never returned from shift on time. They were physically and mentally exhausted and frequently shell shocked by a days work. When we say NHS staff are special, we are seriously underselling them. The staff are amazing and special because they have to be. If they weren’t there would be no NHS at all. Nobody else would put up with that shit. They’re taken advantage of. Services are cut and staff are left with the same case-loads. I truly believe one person working in the NHS carries out the work load of three people in any other industry. I reiterate: they do this not because they are paid for it or ‘because it is their job’ because if they only did their job the NHS would not function. They do it because they care. Nobody else would take on the emotional burden and responsibility of complete strangers and their families. Bring it home with them. Skip lunches so patients can have theirs or stay late so they can hold the hand of a lonely old lady until she takes her last breath. They sacrifice their own lives and their own plans to keep this service running. Because if they didn’t, nobody else would. Not only nurses but doctors who fit extra patients into their clinics and who work back to back on call shifts, working longer hours than is healthy. Secretaries with more patients than they can balance in a day and receptionists who sit in over-run clinics long after they should have gone home.
The NHS is held up by the goodwill of wonderful people, and destroyed by a lack of funding. The NHS demonstrates the ultimate capacity of human commitment and dedication. It is essentially run by people who are in full time employment with part time volunteer jobs. In the same place.
With that being said, these wonderful people still have a physical capacity. Patients are left suffering, waiting hours for treatment or test results that never materialise. They are promised referral letters that don’t get written or spend weeks and months constantly chasing, getting passed from pillar to post. They put complaints in because they are frustrated and sick and tired and deserve more. The NHS promised free treatment for all – so why are they waiting, chasing and suffering? Those same doctors, nurses and secretaries receive the blow of these complaints yet they already cope with more than is humanly possible. Not only are they each working at 150% capacity but they are penalised for not reaching the 200% hand they are dealt. There are less hours in the day and minutes in an hour than there are people lining up, desperate for help. It’s essentially a very large-scale service run by skeleton staff. The NHS does not have the resources to provide for everyone. In my opinion and in my experience, we’re now at the stage where more people are being let down than those who are being supported. Theoretically, the NHS is a wonderful system. But if you can’t access treatment or wait so long that you severely deteriorate or die in the meantime then what good is it anyway?
Over the last couple of years, the people I know who have received appropriate healthcare have been an extreme minority (I’d go as far as saying rarity) compared to the number of my friends who sit on waiting lists or those who are crying out for help telling me they can’t cope or survive any longer. Really, if we can’t access healthcare then we’re essentially already in the same position as our friends across the pond.
Here is one article, but it represents the entire problem. A child died waiting for a small, yet urgent surgery. This little boy is not an exception to the rule. http://www.manchestereveningnews.co.uk/news/greater-manchester-news/toddler-died-manchester-childrens-hospital-12823045. The problems range from waiting 2 hours to see your consultant (note: the consultant has been on shift and call for 24 hours, with an overbooked clinic. But they endure this abuse of their employment because they care) to a child dying from a lack of theatre slots. But for some reason, both in the UK and over in the US, we are told that the patients are the problem. If we all ate healthy and went for more walks we wouldn’t need healthcare anyway. Apparently, the problem is not that we show a complete ignorance and disregard for the survival and well-being of the vulnerable and take for granted those who are kind and hardworking.
Last year I went a whole month surviving on around 100mls of feed a day due to a broken feeding tube because my service was too full. That’s 150 calories and less than 5% of my required fluid intake. When I see my consultant, my next appointment slip says ’12 weeks or next available’. It’s usually over 6 months before that ‘next available’. Last year this meant that I was seriously ill by the time I saw anyone. Time and time again I am told from the mouths of my consultants themselves that they don’t have slots or can’t access funding. The secretaries are so busy managing case-loads that their exhausted human brains cannot coordinate every needy patient having a serious flare. Call-backs cease and patients deteriorate. Because the NHS no longer has the capacity or the funds to help everyone.
We thank our lucky stars for the NHS and recoil in horror at the decision to repeal Obamacare. But (controversially) I ask – are both systems not beginning to merge into a horribly similar picture? In the US, the people cannot afford healthcare, in the UK the NHS cannot afford healthcare. Is it not the same problem with a different pot of money?