The State of Access Report 2016

If you follow me on Twitter or have me on Facebook or know me in person or read the Independent newspaper, then you may be aware that today is the publication of Attitude is Everything’s 2016 State of Access Report. I've been getting involved in every way I can with this excellent charity of late and I love the platform that it gives to an issue that's so important to me personally.

I appreciate that many people may not want to read the full State of Access Report – it’s 40 pages long - but as a disabled gig-goer I found the report extremely relatable and incredibly self-validating. So I read it all. When I go to a gig and I explain myself (which, as you know, I simply HATE doing) it's often met with complete puzzlement at best. Nobody seems quite sure what to do – am I the only disabled person who goes to gigs? This is what it felt like, until this charity came along. The report says that 280 ‘Mystery Shoppers’ faced similar or exactly the same issues as me in both attitude and physical barriers to music. Apparently some people feel that the inclusion of disabled people in live music is not that important. It’s not the end of the world if we don’t go, right? Perhaps this is why the issue receives so little attention and awareness. But why should we miss out on the buzz, fulfilment and culture of live music? Not that any of us want a pity party but most, if not all, disabled people go through enough crap in their lives already. Asides from being an issue of absolute equality, we deserve some fun in our lives as much as anyone.

‘Mystery Shoppers’ are disabled people who take voluntary surveys for events that they attend at various venues throughout the UK. The information used from these surveys is used in the State of Access Report and these bring together common themes and issues faced by disabled people. It would be all well and good going round asking venues if they provide accessible facilities and they would point out some wheelchair ramps and a disabled toilet and get a nice big tick. But accessibility isn't there for the venue owners, it's there for the disabled people that use it. Only disabled people can judge what makes a venue accessible to them (and it’s different for everyone – many disabled people don’t need ramps and disabled toilets) so therefore … Mystery Shopping.

Asking everyone to read the full report would be a little ambitious of me, but if you do want to, it can be found here. The executive summary rounds up some of the main points and I also spoke to the Independent newspaper for an excellent article that they featured. The online version is here. And the print version is below.

The report is all about picking out areas that matter to disabled people and exposing the areas of bad practice that are really not acceptable when striving for equality. I have written a short blog for Attitude is Everything, which should hopefully be published at some point this week but I also thought I'd do a piece on my own blog about the issues in the State of Access Report that jumped out at me.

A key theme throughout the report, as in the last report is that over a third of venues provided no access information at all on their website. Only 17% of websites provided good information and the rest were either poor or adequate. Some shoppers even reported that staff were completely ignorant of the facilities they provided and weren't able to tell them whether or not the venue was accessible at all! This is something that I too have had a problem with and it’s so frustrating. It’s like banging your head against a brick wall.

 Due to the general inaccessibility of the world, most disabled people have to meticulously plan everything they do. If they can’t get hold of access information, they can’t plan and therefore they either take a very risky leap into already seemingly untrustworthy waters or miss out on seeing their favourite bands.  It’s also really important to raise awareness of the fact that access information needs to be tailored to all disabilities – is there a ramp? Is there a toilet? Is there a sign interpreter? Hearing loops? Large crowds? Seats for non-wheelchair disabilities? Strobe lighting? Will there be medics onsight? Something that is important to me is whether the staff are knowledgeable on disability and accessibility so I don’t have to keep explaining myself. Do the staff know the appropriate policies and procedures to follow when I come in with my unconventional disability? I hate asking for information and being met with ‘don’t know, sorry’ – well… find out? Solving this problem really is largely dependent on employing helpful, polite staff with a bit of a can-do attitude. The benefits of informed staff can be found on page 29 of the report – a really important part. I wish all venues would read this section!

Another issue raised by the Mystery Shoppers was that ‘normal’ people can book online, and choose where they are sat. Disabled people often have to ring up, spend time in queues, speak to robots and still can’t choose where they sit. This isn't really equality and it's not a fun way to spend hours of your time!

The report states that accessible toilets are only accessible if they are fit for purpose. You can't just take a room and put a disabled sticker on it. When we went to see Kodaline, Becca (whose wheelchair isn't actually that big) only JUST fit in the toilet. The wheelchair took up the whole room with little room for Becs to get in and out and it meant that we didn't know when she was ready because she was so squashed up she couldn't open the door from the inside. So psychic friend powers and guesswork had to be employed. I've spoken to friends with bigger wheelchairs, who need a carer who have actually had to use facilities with the door open!

Only 38% of bars were lowered for wheelchairs but this is a slight improvement since the last State of Access Report (22% 2 years ago). Personally, at the venues that I have visited, I've never come across a lowered bar. 38% is still pretty shoddy.

An issue that I personally found very sad was that only 18% of venues had a dedicated viewing platform. Often, when I ask if I can go somewhere with seats and not in a crowd, the latter need isn't met. We just end up somewhere really busy, with seats and often have to share it with able bodied people who stand up in front of us. If seats are taken you either have to explain to able-bodied (often drunk) people (who are stood on the chairs) that you need a seat because you’re disabled, or sit on the floor, or go home. It's not really appropriate to put disabled people in these situations. Especially when they have come out to have a good time. Dedicated veiwing platforms are an area just for disabled people. They are not only raised so that people in wheelchairs can see above the crowd, but they are a space where individual accessibility needs can be met.

Sticking with the theme of a viewing platform, the report raises the issue of obstructive staff telling disabled customers that they aren't disabled enough to access the platform. I don’t know how to explain how upsetting and demoralising this is. It just makes you feel like you don’t deserve the experience. It makes me want to curl up in a hole and never attend an event again. It’s truly awful. If I could highlight one area of the report that is most distressing for me, it’s this. Again, benefits of informed staff. Page 29. My favourite page.

Whilst music is an activity that largely involves listening, only 38% of the venues shopped were fitted with a hearing loop. In my opinion, this just makes the venue entirely unfit for purpose at all. The report raises awareness for the need for more hearing loops, signers and access lyrics/live subtitling so that deaf people are able to enjoy the experience too.

It also found that most people assumed that venues provided this service which leads me onto a popular misconception. Most people just assume that accessibility has to be met. We assume that discrimination is illegal. Discrimination sounds illegal. My friends are always shocked when we go out somewhere and there isn't a lift. I do believe that most people just assume that disabilities have to be catered for and that it isn't optional. They think that there are provisions for everything everywhere, because there has to be!

Most people assume that the goal we are trying to achieve (accessibility for all) has already been reached. There’s so much need for awareness to demonstrate that this is quite far from being reached and there are still so many areas for improvement. This is what the report does, it highlights these areas and this is why it’s such an important (and not boring!) piece of work!

This turned out way longer than I intended. There is lots more I could have said, but please read some of the documents and articles and educate yourself. When you are at a gig, or if you work and at a venue, keep a look out for those who are struggling and do what you can to make a difference. J

Let's talk about my feeding tube....

This week is feeding tube awareness week! Before dismissing the need for awareness of feeding tubes, please read this entire post, or at the very least, scroll down to find out why I feel awareness of feeding tubes is so necessary!

I've seen several blogs and posts this week that have focused on and made some excellent points about various aspects of feeding tubes and living on artificial nutrition. Technically, enteral formulas aren't 'artificial' - they're made up of all the nutrients taken from real edible solution and put into various forms to suit the medical/nutritional needs of the individual consuming it. True artificial nutrition is TPN (Total Parenteral Nutrition) which bypasses the digestive tract completely and is delivered directly into the vein either through a canula or PICC (peripherally inserted central catheter) line if it is short term or through one of the many different types of central line if it is needed long term.

I am an enteral feeder - this means that my feed goes into a part of my digestive tract. My tube is a transgastric jejunal tube, or a PEGJ. It enters my body through a stoma (an open tract from the outside of my body to an internal organ) in my stomach. My main tube contains two smaller tubes. One leaves the main tube in my stomach and is used to drain my stomach of gastric build up or vent excess air that I can't get rid of. The other one continues on to the end of the main tube which goes through my stomach, through my duodenum (the first part of the small bowel) and into my jejunum (the second part of my small bowel). I've been with a broken tube for over a month and it has been hell! I usually feed over 24 hours and as my tube has been leaking, it's meant that I haven't been able to feed very much and haven't been able to take my feed out the house with me. I lost a lot of weight and I felt so dehydrated. I was ready to drop the day before it was fixed, but on Monday (the start of Feeding Tube Awareness Week!) it was finally replaced with a new tube! Here is my lovely new tube!

The tube that looks a yellow colour, plugged into the top leads to my jejunumm (that yellow colour is my feed running through it!) and the clear tube on the side, hooked up to the syringe is my gastric tube that I use to vent and drain.

Probably because of my Ehlers Danlos Syndrome (which affects collagen and the way the body holds itself together), the nerves and muscles in my digestive system do not respond and contract as they should. They produce sluggish and uncoordinated movements meaning that food cannot make it's way through my digestive system as it does in a healthy digestive system. This means that food sits inside my system, moves in the wrong direction and causes spasms or hold ups. This causes a lot of sickness and pain and can often leave me very dehydrated and undernourished. My feeding tube does a few things to help tackle these problems. Firstly, it bypasses the first section of my gut meaning that less of my gut has to handle the digestion. If I'm not putting food into the first part of my stomach and bowel then it is more likely to stay down and means that I don't vomit it or reflux it or drain it out my gastric tube. Secondly, my pump pushes formula through at a very slow and constant rate meaning that my gut doesn't have too much to deal with at once. Thirdly my gastric port drains and vents my stomach to stop me from being sick. But fourth and most importantly, it delivers the nutrition and hydration that I need to keep my body alive. Whilst it might seem and look a little bit scary, isn't that an incredible thing?

There are many different types of formula and it depends on the needs of the individual which one is used in which case. It's often a case of trial and error to find the ones that agree with you best. I think I've been through pretty much every feed even with separate feed providers to try and find one that works the best. The feed that I am on right now is called Vital 1.5 and looks like this:

Mine comes in the larger bottle, the smaller one is the drinkable version - yum!

If you want to read more about the type of feed I'm on and have a read about other types of enteral feed and what they are used for you can have a look here on the Abbott Nutrition Website! My Vital 1.5 feed contains 1.5 calories per 1ml of formula. I run my feed somewhere between 20mls per hour and 50mls per hour, depending on how I'm feeling. I run it all day, as much as I can but have to turn it off when it gets too painful or I'm feeling too sickly otherwise it just makes me sick and that is not the aim of the game! If I run it at 20mls an hour all day, without turning it off, I will get 720 calories. If I run it at 50mls an hour all day then I will get 1800 calories. My calorie intake varies so much from day to day. Vital is semi-elemental which means it is already partly digested making it gentler on my bowel and easier to absorb. It is also completely fibre free because fibre is not very good for most people with digestive tract impairments as it leaves a lot of residue in the digestive tract, meaning more work for the gut.

I've been tube feeding for 4 and a half years and had various different types of tube. My first tube was a nasograstric (NG) tube which went up my nose, down my throat, through my oesophagus and into my stomach. Then when that one made me poorly, I moved onto a nasojejunal (NJ) tube which went the same way as my NG tube but carried on into my jejunum in my small bowel. From the outside, both these tubes look pretty much the same! Here I am with my NG back in 2011:

These tubes are usually only used short term, either because a patient only needs short term nutritional therapy (for example, if they are going through chemotherapy or another treatment that suppresses the appetite), whilst someone waits to have a surgical tube fitted or even just to see if nutritional therapy works for them before committing to a surgical hole in their abdomen. Some people do have nasal tubes long term though because that works well/best for them or because surgery is too risky for them. Some people with NG tubes (into the stomach) do overnight or bolus feeds (large quick feeds) and put a tube in for the feed and then take it straight out afterwards. They do this on a daily basis so that they don't always have to have a tube hanging out their nose all the time. This isn't possible with NJ tubes (into the bowel) though as these need to be placed through xray or endoscopy (a 'remote control' guided camera tool down the throat and oesophagus).

I had a lot of problems with my nasal tubes as they gave me regular blisters in my throat which was the most painful thing ever. In the end, they were getting pulled and replaced on a weekly basis which was really disruptive whilst I was in the last year of my A-Levels!

My next tube was a PEG which went directly into my stomach through a stoma in my abdominal wall. My first tube was enormous but the best one I've ever had in terms of practicality. This was just for whilst the stoma healed and then it was replaced with a button style tube which is much smaller and discrete. With this tube, I fed over 10-12 hours overnight and for a time this worked really well for me. This meant that during the day I wasn't connected to anything and nobody could see my tube because it was hidden beneath my clothes.

The PEG tube started giving me reflux and making me sick through the night which meant that I had to start feeding in the day again. This wasn't really convenient because it was still giving me a degree of reflux and sickness, just to a lesser extent because I wasn't led down. So in July 2013, my PEG was replaced with a PEGJ, which is what I have now! This is the tube that I discussed earlier in the post which has two tubes inside it - one which exits into my stomach and one which exits into my small bowel. With this tube I went back to feeding overnight and for a time this worked really well. I gained a really healthy amount of weight and reached my highest BMI of 22! However in late 2014 I started to get really poorly again and I really struggled tolerating my feeds. I was getting a lot of pain and sickness and lost a lot of weight. I was admitted to hospital for a month whilst they tried to get my feed back up and going again. Unfortunately I have never really recovered from that and I now run my feed over 24 hours at as a high rate as my bowel will tolerate so that I can get as many calories as possible.

I think that is about everything I can tell you in terms of information about actual feeding tubes themselves. So why is it important to raise awareness of feeding tubes? I've heard people say that feeding tubes don't need awareness and that they aren't an illness and awareness won't save lives. That's true, it won't save lives but if you're a regular reader of my blog then you'll know how much I've struggled with ignorance and bad attitudes towards my tube and this is why I think it is so so important that the implications of living with a feeding tube are recognised. I think positive awareness about any issues that affect you is a good thing and those who say otherwise... well, some people always need something to moan about. Feeding tube awareness, in my eyes is positive and is very much needed.

How are people ever going to understand what my needs are if they don't understand what a feeding tube is? I would love nothing more than to never again have to explain to someone what my feeding tube is and what my needs are. I don't want this to sound like I don't want people to ask me questions - if you have a question ask away! I just really don't like having to justify myself. Questions are fine but don't challenge what my needs are. Don't challenge whether or not I need my tube. I do and that's that. Don't tell me I'll be fine doing something when I'm the one carrying the heavy bag and I'm the one that gets hurt when it gets pulled. I'm experienced at this and I found out the limits and risks of my feeding tube the hard way. My tube is at risk of being pulled everywhere I go and every time I move. My bag which carries my feed and my pump is at risk of getting bashed which means that the feed might explode or my pump might break and all of these things have happened to me. Where possible I like my feeding tube to be discrete. I don't like looking out of place and often people don't notice I have my tube. Unless you look carefully at the tube coming out from under my clothes, then I just look like I'm carrying a regular back pack and that suits me. I've briefly considered wearing a sign on my bag alerting people to be careful of it, but how much negative attention would that bring to me? I don't want that! I just want to be like everyone else. When people are polite and understanding, I am like everyone else.

Questions: 

There's also another aspect for awareness - that people find feeding tubes are really scary and they really aren't. I liken my stoma to an earring. It doesn't hurt any more unless it gets tugged and pulled - much the same as your ear piercings won't hurt unless I tug them or pull at them. Then they'll hurt! 'Does it hurt?' is the question that I get asked most often.

Another question I get asked a lot  is 'Can you feel stuff going in?' - If I plunge something quickly into my stomach I can feel it in the same was as you can feel taking a big drink. If I feed too fast I get pain in my bowel because it can't hold or process large volumes. If I've had too much feed I feel really sick, or am physically sick. When my pump whirrs can I feel each individual projection of 1 or 2mls going in? No.

'Can I see it?' Yes! Literally, just ask! You can't see my hole, all you can see is a button on top of my skin. I don't go round flashing it to people because people might not want to see it and I don't want to gross people out if they don't like that sort of thing. I'm not embarrassed about showing my feeding tube though and it probably looks way less scary than you imagine.

'Will you have to have it forever?' I don't know. Unless a miracle cure comes along to fix my bowel then yes. I'm always trying new drugs and treatments to try and improve things though.

'Can you eat?' Certain things, sometimes. Food does make me sick and so often when I'm out and about, I don't eat. I only eat at home when I'm near a bed and my toilet. I usually eat soft food or food that mushes up easily once I've chewed it because that's easier for my system to digest, and if it doesn't digest it's easier to drain it out of my gastric tube. I can't digest milk or wheat (celiac disease) and I'm allergic to onions and garlic so that limits things anyway. Onions and garlic are in pretty much everything so I can't eat anything ready made from the shop. I don't eat solid meats because they don't break down enough but I do have things with meat in them like chicken or beef stock. I mostly stick to liquids, toast, plain crisps, eggs and mash potato.

I can't think of any more questions right now, but I absolutely welcome you on here, Facebook, Twitter or in person to ask me anything that you might want to know about my feeding tube. No question is rude or silly! One of the aims of raising awareness is answering any niggling curiosities.

If you have made it this far, thank you so much for reading. I hope that I have helped you learn something new about feeding tubes.

The Happiness Project

I saw this idea on Jenny's blog just after Christmas or early on in the New Year and thought it was such a great idea. I've tried to find a good way of explaining this online and I just can't find anything so I'll try my best to use my own words and I'm maybe best just doing it and showing you as I go along.

Each month of the year has a 'theme' or a big main goal. You can pick different themes depending on what you want to achieve to make you happy each month. For mine, I tried to think of things that I already had planned each month and how I could use The Happiness Project to either incorporate them or help get me through things each month. Once you have your main theme or goal, you start picking little goals, tasks or pieces of advice to follow for that month. I have my themes and goals all written out, but I'm not going to put my year plan up all at once (not that I'm going to change it!). I'll talk about my big goal and little goals at the end of each month and then I'll say what my next months big goal is going to be without releasing the little goals that I've set until the end of that month.

Also, the Happiness Project have some books and journals that you can use if you visit:  http://gretchenrubin.com/bookstore/ - Becca bought me a journal a few years ago for my birthday and it's so cute and organised but I'm yet to start filling it in! I didn't start planning this until a few days into the New Year, so I will start using it next year for another Happiness Project. I might invest in one of the books as well at some point, to give me a bit of inspiration.

My January goal is unfortunately a bit boring but I thought it best come before anything else as it's probably the most important. The main goal was:

"Be healthy - look after your body"

The here's my little goals and how I got on with them:

• Be strict - I don't think I completely achieved this if I'm honest but I have been so much improved. I'm really bad at doing things and eating things that I'm not allowed. I'm always strict with onions and garlic and will never knowingly put anything with those in, in my mouth but in terms of my celiac and lactose intolerance I do sometimes have a little nibble. I've definitely had more restraint than usual this month and I've tried really hard but I've made the odd poor decision and still had nibblings of naughty food. It's really hard as well when I don't fancy anything but maybe I do fancy something I shouldn't be eating so sometimes I think "well, it's better than nothing and maybe it's giving me some calories." Since it usually just makes me ill though or ends up coming out of my drain... it isn't really calories. So although I've been better, I'm still working on 'being strict'. 
• Drink lots of fluids - I do struggle a little bit with drinking because it makes me sick if I have too many big volumes but I think I've definitely achieved this one. I'm quite a big tea drinker and so I've been trying my best to have a cup of tea on me as much as I can, and just keep sipping it all the time and taking breaks if I've gone too far. With having a broken tube I've had even less feed this month so this one has been double important!
• Packet check - Yes! I've definitely achieved this one even if I've still been a little bit naughty on occasion. I'm a bugger for not checking packets because I think if I don't check, it doesn't count as being naughty. I always check anything that might have onions or garlic in but I will turn a blind eye and not check the box if it might have wheat or dairy in. Checking packets more has lead to me being stricter though, as in my first little goal.
• Exercise - This one has been really tough on limited feed because I've had so little energy. I went in the swimming pool once with Little Meg and did do a few lengths but I was so dizzy when I got out and had to take a minute to sit on the side of the pool. Then I spent most of the time in the steam room. But... I've been going on a walk every night before bed with Hannah which has been good exercise, kept me moving and got me out the house when I hadn't really moved out of bed all day. So, with the limitations in place I still think I achieved this one as best as I could this month!
• Rest - I really struggle to discriminate between rest and being lazy. I also struggle a bit with mental rest - for example I might stay in bed, or sat at my desk all day so I'm not physically doing anything but I'll be doing loads of uni work or paper work which is quite heavy on the brain. Since I'm only in uni two half days a week, I have certainly done plenty more rest than I was doing when I was working and doing uni before I went into Salford. Also, since I'm only in uni two days a week and have no work commitments my sleep pattern has been a bit messed up so I've been working on that one. Sometimes I find that the more I sleep the more I want to sleep so I've been trying to set alarms even when I have nothing on just to wake me up early.
• Go to pilates - Pilates always made me feel better and I've been once with Hannah this month and I found it so tough. I just didn't have the energy and all my muscles are shaky because of my lack of nutrition. I'm going to say I achieved this one still because I still went to pilates and gave it my best shot. Once I've got a few more nutrients inside me I will be back on the pilates bandwagon.
• Take tablets - Improvement but still not great. I struggle with this for many reasons - I'm just not in a routine and I'm also always out or busy and don't get chance to take them (which is NOT an excuse). I've tried the little tablet organisers but they don't fit all my tablets in and so I just end up taking what's in them and then forgetting to take the rest. Can anyone recommend any where the compartments hold lots of tablets/fit big bazooka sized tablets in? But at the same time, aren't so enormous that they aren't portable? 
• Be honest - This one was partly about listening to my body - not telling myself I'm ok and not denying that I'm overdoing it because I want to do something. The other half was about being honest after I'd either overdone it or done something I know I shouldn't, rather than denying that I've ever done anything to make myself feel ill. For example I might eat something that I know I shouldn't and then later I'll be ill, but when someone asks me if I know what's caused it (or when I ask myself!) = 'No. no idea!' Also, at appointments I leave out details of not taking tablets and doing things wrong. Which is bad. So, I guess this one is about being a bit more accepting of everything and not being in denial? I've tried really hard to work on this one, and although I've done things wrong I've admitted them and not tried to hide them, and also, I've admitted them in this blog post!

That's all my goals for this month! Obviously not I'm not perfect but I'm not too disappointed because improvement is better than nothing and I'm going to try and continue to make progress in all these areas for the rest of the year (which reminds me - it's almost midday and I still haven't taken any tablets.)

My goal for February is going to be "Stay busy and be creative".

Thank you so much to all my hardy regulars and hello to loads of new readers. My last blog post had the biggest number of views out of all my posts which felt great because it was on a subject that means so much to me. I've also had an influx of follows since then which I'm putting down to the amount of awesome people who tweeted or re-tweeted it for me. Thank you! I have a couple more blog posts lined up I just need to get round to finishing them, and also an update on what's been going on with me because it has been quite a hectic month. Watch this space.

Lots of love to you all.