I failed an appointment but all is not that it seems.

I am a strong advocate if the National Health Service (mainly because it has kept me alive this long), however last weekend my patience was tested to the limit. It was not a one off either. This is the second time something like this has happened.

Wales played Australia on Saturday in what I have come to believe is now just a ceremonial display of the same game of rugby replaying itself over and over again, and we actually pay money to endure this misery. As I walked through the front door, I was greeted with the ever familiar postmark of my local health board. I was actually quite excited as I was waiting for an MRI scan date as part of brain surgery investigations, exciting stuff. So I opened the letter. But all was not was not as it first appeared. Not so exciting stuff.

I did recognise the letter as it is a format that I come across in work. It was a failure to attend letter. This is where I started to smell a rat, mainly because in order to warrant receipt of a letter such as this. I would have needed to have received and appointment on the first place, which I didn’t. I had been waiting for the letter for MONTHS and MONTHS so as you can imagine my surprise when I saw the you are no longer invited to my party, letter it came as quite a shock.

Following my steaming hell rage I read the letter in its entirety and established that, there was no accountability being taken for the letter. As it wanted me to go back to the Dr that referred me in order to correct their mistake. I thought on this for a moment, and was somewhat unsatisfied. I then thought, maybe I can improve on their procedures… If I made a mess in your house (lets say at a party), how would you feel if I said, yes, in order to fix this you need to get the guy in charge of organising the entertainment to clean it up. As you can imagine, he would not be happy with this, and the home owner would be somewhat bemused by the arrangement.

So I called the Radiography department. Not my Dr (it’s not’s their mess to clean up).

Firstly, I found out that the phone number on the top of the letter was for the WRONG department…. Brilliant, smoke and mirrors. Luckily a helpful person gave me a bundle of numbers to call if I didn’t have any luck. I still have these numbers :).

When I got through to them, they were very helpful. However, something screamed MANAGEMENT FAILURE. The lady I spoke to told me a number of letters had gone missing. These were not acted on, however they did send out the failure to attend letters for those appointments, and push the people who had been waiting months to the bottom of the queue as well as make their figures look swell. This an incredibly cynical statement and may be wildly inaccurate when applied to waiting lists (please excuse my imagination making ideal world statistics, if this is the case). But it is accurate in representing how I felt at the time. The fact remains that the the letters were never sent, and that then becomes the patients worry. As if we haven’t got enough to worry about.

Incidentally, I wanted an appointment so I did’t say any of these things. My appointment was very quickly remade, however I do not like how administrative decisions could drastically impact clinical decisions and timing.

The moral of the story, go route 1. Go back to the place who wrote to you. Try not to let them move you on or back, especially if they made the mistake.

I had my scan last night. Which like always was handled with military precision and world class care. It’s as if the NHS functions despite the horrendously flabby layers that have been put upon it. Well done NHS. :) You still nailed it, but just send letters properly.

Holiday insurance… debacle

It was just about time that I booked some holiday leave and go on away. I didn’t go on holiday at all last year and to be honest I could do with a break or an enforced stop. So I went online and booked myself a holiday away for 10 days.

So with the flights and the hotel booked there is one important thing that I had to remember to do before I could go away. That was to book holiday insurance.

Now I’ve done this before and in the pass this hasn’t been a problem; so why would there be this time?

In fact I would go as far as to say as it was a doddle. An absolute doddle!

For the record my epilepsy is well controlled, I do not lose consciousness, it is caused by a DNET tumour which was removed partially in order not to damage my vital brain function (you know, little things like spacial awareness, moving, looking in the right direction this will turn out to be a crucial detail). I have not been hospitalised since I was 7 years old. I am 31 now.

So I began my search.

Try 1. Confused.com’s pre existing condition insurance search (I have to admit, it is a bit of a mouthful).

The questions covered the basics, what was the nature of my pre existing condition and the details of it. The quotes ranged £1200.00 £1600.00.

This is 10% more than the cost of my holiday. Needless to say I did not walk through door number 1.

Try 2. Insure nGo. Epilepsy Action do offer a discount with this company however epilepsy action make it clear that members are subject to Insure n Go’s policy’s, and the two are very much separate companies.

I found that (after a bit of probing) Insure n Go would not cover me for travel insurance. I went through all their questions. Answering honestly, because I can’t afford not to. When they sent me their quote they had not marked an answer to a question as I had stated. So I called them back. After receiving a quote of £256.00

The question was. Was all of your tumour removed. They only had the choice of yes or no. So in my case I answered; “no, as much was removed as could have been done in a safe manner”. They marked it yes. The last time that I checked, yes was the opposite of no. This was an important detail for me because I wanted cover for a brain tumour.

On speaking to them they told be that if I answered no, then they would not be able to cover epilepsy. To which I replied, “you won’t be covering a lot of people with epilepsy then”. The scary thing was we both knew that this insurance salesman would have been quite happy to send me off on holiday with what was effectively a void policy and meaningless piece of paper. But hey, he would have got his commission and I would have been left responsible for the inaccurate (I am being kind here) questionnaire marking.

To his credit and my persistence they sent it off to the underwriters. No doubt for them to come back with an astronomical quote for a low risk person. The message that they will be trying to tell me with the quote will be, go away! So my search continued.

Try 3. AllClear travel – Full cover £247.00 :) N0 fuss. Seriously it was that easy for me. I filled in the online form and I got a realistic cover for someone who has a brain tumour sat in their head. I was happy with that, very happy in fact.

From my experience of finding travel insurance I am genuinely concerned about the possible number of people who have existing conditions and taken the time to get appropriate cover. Yet they are sold inappropriate coverage simply because a yes or no answer is interpreted in favour of the salesman’s monthly quota. Also there could be a number of people who travel abroad not even knowing that their insurance is inappropriate.So my advice would be ALWAYS re read your quotation questions and how the questions have been answered, even if this means you have to pay a admin fee to get a copy. Without doing this I would not have spotted sneaky Joe’s “mistake”.

Also, the git from one company said “its your choice of you take the policy”. I thought about this as was I was on the phone to him and told him quite directly that it wasn’t a choice if the company’s policy is to cover all or nothing. So by looking at the definition of a choice we certainly do not have one. Oddly the twerp did not have an answer for that. Maybe his computer said no.

Dear driver…Incidents on buses happen all too often!

Letter to a bus driver… AGAIN.

I read this week the disturbingly familiar story of the young girl who tried to use her bus pass but was refused because a bus driver who must be working for ATOS on the side decided she didn’t deserve it.

Here is the Sun’s article.

http://www.thesun.co.uk/sol/homepage/news/4560177/Bus-driver-tells-teenage-epilepsy-sufferer-Youre-pass-is-a-p-take.html

I had a similar experience, well to be honest I’ve had similar experiences. As a person with a disability that you can not easily see, you seem to be on the end of challenges from people who have become instant experts.

Oddly my most memorable experience happened on the bus too. I wrote about it in April have a read…

http://wp.me/p2lUGl-Q


When I was talking about this young woman’s experience to my Dad he jokingly said that we should have something written on our heads so that dick head bus drivers can’t miss it. This got me thinking…

Not being able to see epilepsy is a bit of a double edged sword. For example, When I am not having a seizure I don’t look like the type of person who might need a little help from time to time. So it catches people off guard when I do. Or better, people think I am drunk and ignore me… nice.

On the other hand I can disappear into a crowd or mingle into a group and no body knows that I have a busy brain going on. Here lies the problem, when it comes to disability, many people who do not have some mild understanding of disabilities and chronic conditions live by the cruddy mantra “seeing is believing”. I will not be carrying MRI scans and a neurologist in my coat pocket to prove to some tool on the bus that I am entitled to something that is none of his or her business. I do hope people start suing for this blind ignorance and soon!

My plan of action has, like on the current brilliantly high profile recent incident, has always been to be open and go at them with a good offence. This hasn’t always been the case, I used to look at my pass and almost, limp on the bus. I’m embarrassed to type this. A person should not have to feel that they should do that, to hide what is normal to them is wrong.

It is however, a bizarre situation when you want to travel on a bus and your authenticity is being questioned, anb all the while I/you are questioning their own hygiene practices (this is based on MY experience). However, I do not do this, I would not do this! Because we are humane, maybe this person has some reason or condition that needs some understanding, so it is given… Should this not be mutual?

I have written a short letter to the bus driver, however he/she is more of a metaphor for general ignorance. I am hoping that he/she will read it and understand a few thoughts of mine…

Dear Driver,

I am writing to you to see how things are going. Anyway enough of the disingenuous small talk I think you should hear a few things. READ!

People with disabilities should not have to prove their disability continuously, this seems to be more and more the case these days. The nature of the term implies that the condition isn’t going anywhere anytime soon. This has been defined by the equality act, should you wish to read it for yourself it is WIDLEY available. However, there is a growing number of people who are mistaking people with disabilities, for people who are signed off work as being un fit for work, when really they have just learned how to say the correct answers to the Doctor in the test in order to get what they want. These people will always exist. So will people with genuine need. Ignorance doesn’t need to.

Back to you driver, possibly you thought that this young person person was ANOTHER benefit scrounger getting on your bus for a free ride, and that day was going to be different. Maybe the spirit of Robin Hood entered you and you were going to kick off the bus, pass bearers 1 by 1. (I am being really quite creative there but you are getting the idea).

The simple fact is, that people need to know that firstly just because you have a condition/disability/ilness which entitles you certain reasonable adjustments does not mean that the hospital in response issue people with a cane or a chair as a sign to people who question their authenticity, they are provided to make the world more accessable, they are not for your benefit Secondly, you can’t see a lot of conditions and disabilities not because they are small or far away either and thirdly if your job description doesn’t say something along the lines of ‘person who knows something about being an all disability, genius’, please keep all thoughts, prejudices and general ignorance to yourself. I promise, you will have far fewer newspapers, tv crews, and many more friends and probably live longer. If it sounds like tripe when you say it in your head. It will sound worse when it is repeated ALL OVER THE WORLD!

Thanks,

Ant

Oh this message will self distruct in… some seconds…

Please leave a comment and I’ll be glad to get back to you. Cheers. Ant

Side effects, they are never super powers…ever!

I am sure that you are familiar with the tragic beginnings of some of our most famous super heroes. Take Wolverine for example; he was injected with the metal adamantium and left with the power to heal, in addition to this some quite treacherous nails, oh and a mood problem. I can relate to the mood problem.

Then we have Spiderman who was bitten by a toxic spider, only to find out that he has all the powers of the said spider. In theUKwe have/had a superhero called banana man… He was just a man that ate bananas and got strong (subtle subliminal messages… :-S). However nobody every mentioned the dangers of a banana induced potassium overdose!

In my mind these are all side effects of a situation, condition, or dose of medication. In their cases they work out as something that can be advantageous. However I doubt the X-Men would take me, my ability being an uncanny knack of being able to sleep whenever I like for as long as others will let me, or that I can make the room spin (in my head). Or that I can get moody at ANYTHING!

I know that to some degree that the comic book heroes were made to celebrate difference, (apart from batman, he came off badly) but my side effects are sometimes pretty poor.

Honestly, there would be no complaints if the side effects listed infinite strength or the ability to fly or x-ray vision. Drug companies, would not no where to look. I’m pretty sure that the police would give me a job then…

Also if you think about the term, side effect… side effect. It sounds almost like a throw away comment. As if they are something that you could dismiss altogether; like side dish or after thought ah, if only it was that simple. If only they were banal as that mini question “would you like onion rings with your whopper meal sir?” I get asked it every time, I’m sure, but I don’t remember it. This is because it is a side dish. Not the main thing.

The odd comparisons continue.

However, when it comes to anti-epilepsy medication we balance out our main meal (the anti-epileptic qualities) with some side orders that we didn’t ask for. So before you know it, your whopper meal becomes… Fries, onion rings, dohnuts, large drink, ice-cream and a whopper on the side.

But, and it is a BIG but. If I look at it all, I would much rather have all those side orders if it meant that my whopper was doing me some good. However I know people have their limit and it is all about what we as individuals can tolerate.

Please leave a comment, or ask a question. I will get back to you. Cheers.

Ant :)

I hear music before my seizure… Do I owe anyone royalties?

Following years of weird auras before my seizures there has been one which makes me laugh every time. I am quite lucky in that I have quite a complex collection of auras that happen prior to my seizure, it gives me time to prepare and what not. The one I am writing about today is far from unpleasant. Well it depends how you look at it ;).

I hear, in the seconds before my seizure music. Music of varying kinds , but it is indeed actual music. Last time I heard it, my brain played me some Tenacious D (it was from the good album with the blue cover, I’d have to wash my mouth out if I told you the title). I haven’t listened to them since I was young enough to openly admit that I listened to them. I played t to my dad once, it was greeted with an open mouth and stunned silence. That truly was a first.

It’s taken me years to identify this as part of my aura mainly because it is incredibly quiet, normal background noise drowns it out. I even think the Dr thinks that is one aura trait too far to believe. However it isn’t like I’m going in his office and telling him that in the moments before my seizures I become fluent in maderin, although that would be useful!

The first time I made the connection I was in bed and I heard it, clear as day (odd song, I know), Franky Goes To Hollywood-Relax. The cheek of it! My was my brain mocking me? What happened must have happened in a 30 second time frame but I was almost dreaming so time was all wrong.

Sometimes I wish I could choose the music, I could take the jukebox approach to it mostly because the most recent of occurrences haven’t been that enjoyable aside from the highly amusing evening of Franky says relax! Incidentally the first word of Franky’s advice (relax) is worth taking at that particular point in time, so it became a sort of mantra. I make no apologies for the song choice, it chose me ;).

Incidentally My ‘ears’ have been spared the torture of offensive music. However I have been hearing the music from Wicked non-stop (its better not to ask). So I am half expecting to hear that. I lie down, just about doze off then, all of a sudden, I hear her the blonde one from pushing daisies singing ‘popular’ like her life depended on it.

Or even worse… Annie Lenox. :( That would be terrifying, I couldn’t cope! I have said enough about that . Or even…more worse.:S Sting, when he was doing that thing on a lute. I still think that he should apologise for that.

Most recently I have even heard dialogue from television shows, Alice Tinker from the Vicar of Dibley made an appearance one evening, as I heard the words “get away from her you bitch!” over and over. I knew it was her, I narrowed it down to the episode when she is proposed to by Hugo. Alice then quotes the film Alien… As you do!?

The amount of music that I do hear if other people could hear them, could amount to copyright theft… Hang on do I owe anyone money for thinking? There could be a amnesty box to click on my itunes account ;).

I am glad this happens to me, mainly because I consider myself lucky to have auras at all. Believe it or not they make it possible, even safe for me to do the job I do. I don’t know if people will feel the same but I am grateful to have this with me. But in an ideal world, I would prefer it not to interrupt from time to time.

When I disclosed this to my Neurologist he did give me the, “are you sure?” look. Which, to be fair, I don’t blame him for thinking that. But we are all different, and the word epilepsy is an all encompassing term for a vast collection of often different symptoms. No wonder they don’t really have an answer. But things change daily, if not weekly. New things are always popping up. It’s that, that keeps me curious and interested in it.

Thanks for reading and dropping by, please leave a comment and I’ll do my best to get back to you.

Cheers, Ant

Peanut Butter? Really Mum, you think it is a trigger!?

 

I know the things that trigger my seizures. I also know the things that don’t. However that doesn’t stop you suspecting almost anything as a trigger. I’ve talked about the theories that I have at the moment past post, I talk about how I feel worse on days that there is thunder in this post http://wp.me/p2FmVr-1D . So we all have our oddities, food is my second love so from an early age I defended. By that I meant I really didn’t like having it taken away from me. This is all about what I did to defend the rights of the lowly peanut against persecution… I guess.

My list of epilepsy triggers have always been based on a semi science crossed with hear say crossed with down right coincidence.  Today’s blog post is an example of how hindsight can be really useless…

On the list of my favourite things, high up there on my list of things that are amazing is proper peanut butter. Not low fat organic peanut butter, but full fat shamelessly bad for you peanut butter. If you ever asked me to recall a moment of pure happiness from my childhood, I would not speak nostalgically about my family holidays to America (which were always excellent). No, I would take you all to the bizarre day that we spent at my Nanna’s house, delirious from gluttonous peanut butter consumption.

Her plan was to get us to eat some celery (this is my best guess). Just so you know, I despise celery, it is pointless just as meaningless as wasps, don’t get me started on them! Sadly  and predictably it became a stand off between me and my parents, to get me to eat vegetables. We came to a… pleasing compromise. In order to do this Nanna told us to use the celery as a scoop for peanut butter, from the jar! I may as well have been about to just sit there with a jar, a spoon and a smile.  Pure buttery peanut-ness. Nanna and I both had objectives, hers was for me to eat celery, mine was to eat peanut butter!  With eacch mouthfull the celery went in my mouth, but I wasn’t biting that foul stringy mess. Job done.

Despite this childhood love of peanut butter which has extended into adulthood, but all good things must come to an end. For what now appears to be no reason whatsoever. From the age of 6 peanuts became the food that I was thought to be “allergic” to, as it “caused my seizures”, how could my only food love, in life be so evil!?No body tested this, it turned out that I was about allergic to it as I was to cabbage, letting the truth be told I hated cabbage like I hate bus stops that face into the rain.

However, despite my “allergy” of peanuts which for many years remained a mystery, my love of it did not dwindle. The memory of it was enough to harbour a life long obsession with it.  For me, peanut butter became the forbidden fruit that I would munch into under a cloak of mystery and wonder. My parents thought that my evil peanut trigger was irradiated from my life but the humble peanut and I found ourselves thrust together. Some might say it was fate ;), however I know I used to seek it out at ALL COSTS!  So it has progressed from there. Like I said, my Mother used to insist that I was allergic to the buttery bad stuff but I knew that we would be reunited again, once the truth was revealed…  Some day…

Now the truth turned out not to be an allergy, it was epilepsy caused by a tumour, I thought immediately that may unhealthy obsession with peanut butter could continue forever. However the joy was short lived. Immediately after my initial love affair with peanut butter (which co-incidentally  happened about the same time as my surgery) became a genuine fear of my former lotus fruit. Something changed, I was beyond mortified, my life would never be the same again. I had no base for this fear other than the fact my mum had had a theory, which now is disproved, and somehow the peanut was still to blame. You can only imagine how I felt ;).

But when I was 7 what my mum said was ABSOLUTE TRUTH.

I see this blind trust every day in work. I have had children arguing that 2×2=6 because the child’s parent said it was. It is the immediate vito of all that comes before it.Now my grown fear of the lowly peanut continued right up until I had surgery to remove my tumour. So, just to recap, I needed and MRI to prove that peanuts were the least of my problems. In fact there really was no problem with them at all. How could I doubly my nutty buddy? Never again!

Since that rocky start to our relationship, the peanut and I have enjoyed a varied relationship. We gained a mutual trust for each other… Over time of course :).

I have enjoyed in many different forms and and I see this as a stand in solidarity with the peanut.

I take all opportunities to ingest the fatty morsel; I eat  it… salted, crushed, in brittle, in ANY chocolate bar, in butter and in their husks. Now my parents were obviously covering all bases when they asked me to stay away from the peanut. I am making sure that I make up for lost time ;).This was a bit of a random post, but it was a thing in my life that by fear of the unknown, linked to epilepsy. If you have or had any random suspicions that link to epilepsy, please feel free to share them. Thanks.

Ant :)

Advertising an AED…now that just doesn’t work!

I haven’t posted for a couple of weeks, mainly because I have a few on the burner but I am unable to finish them. They are neatly filed away in my meh file.

I’m in the middle of the school holidays and the return of daytime tv has brought back fond memories of university and Jeremy Kyle.

With watching daytime television have come scores of adverts for almost everything, however I am always cheered up by the vomit inducing optimism if medication adverts. The amazingly sunny dispositions that these newly medicated people get following their medication, it is bizarre! Especially because one of the symptoms was an exaggerated frown, just in case we weren’t sure that there was something wrong with these otherwise ordinary people.

Something like this guy…

20120814-202013.jpg

Now, the reason that I am going about this is I am more that curious to know how an AED (anti epilepsy drugs) advert would answer the following questions.

1. How does it work?

2. What are the side effects?

3. Will it work?

4. Will you have the amazing sunny disposition that poisons all other adverts ?

First of all, I can’t imagine seeing an AED advert on tv, for many reasons. One being there would be no need, it isn’t really about choice most of the time. So there isn’t really a place for them, in the UK at least.

Anyway, let’s pretend.

Let me try to answer these questions in the guise of an advertising… Guy.

How does it work?
Now in the role of advertising guru. Well, here we go… Using wildly patronising language that directly offends the watcher I am going to use childish metaphors, such as that red fireman on the well known antacid advert. I’m imagining a teddy hugging my brain…that is the extent of the science that really needs to be included. Let’s be realistic, we only have 30 seconds for the advert.

The side effects, I don’t think this will fit into a thirty second advert. In a nutshell, there is a fair chance, you’ll feel, in some way, crap-ish… Possibly.

Wether it will work will depend on the professionals that would endorse it. It really isn’t like a toothpaste where the advertisers can throw in at the end something like, 9 out of 10 dentists have teeth or dental professionals think it is great (dental professionals are defined as tooth brush sales people). And many more meaningless and painfully patronising statistics and claims. In this case, I am certain that sweeping claims would lead to MAHOOSIVE lawsuits. They just couldn’t do it. They would need to say something like. Neurologists (hang on that might be too specific), health professionals… erm, think, that erm, (insert medication here) could work… Possibly, maybe not with everyone. But we think it is swell (queue fore mentioned, sickening optimism and jazz hands).
You would need to market it like ‘sex panther’ the aftershave from Anchorman ‘60%of the time, it works everytime’. Weirdly this is amazingly accurate ;).

The chirpy disposition, sadly is an important lie in order for adverts to work. Plus, it gives it extra comedy value.

In conclusion anti epileptic drugs, in my opinion can not be advertised with the confidence seen on adverts today. The sweeping claims, disney manner surely would be replaced with one simple expression in answer to this question. Do they work?

20120815-111454.jpg
Maybe.

Thanks for reading, please pop by again… Oh if you have something you would like to add, please comment.
Thanks,
Ant