Obligatory Referendum Post

There are so many arguments, so much misinformation on both sides of this debate that I feel for a lot of people it comes down – at heart – to an emotional decision. Do you want to be part of Europe or not?

Now, I value sovereignty, and I love this country, and I can understand the view in favour of leaving Europe for that reason.

But at heart, I look at the UK and I see a nation which has never been closed. I see people from all walks of life; from all backgrounds. We havebeen a cultural melting pot since the Ice Age ended and the waters rose, and the “native” Celts were joined by Saxons, Angles, Jutes, Romans, Vikings, Normans. Waves of migrants since before the start of written history. It’s in our blood. It’s in our myths and legends. It’s in our NAME.

United. We’re stronger as group of four than we were alone. We’re better when we set aside our differences and work for a common cause. And I look at this debate and I see no difference between the United Kingdom and the European Union.

I see elected representatives from across Europe working together to unite disparate people and give us common safety and security. I see solidarity. I see hope for a peaceful future. I see cultural enrichment, as our traditions are passed on an explained to new generations, and have the freedom to grow and evolve with us.

I look at all of this and I think: What is patriorism? Is it a love of who I am and where I hail from? Is it a blind devotion to a set of laws and morals which would be anathema to generations past? What makes a person British? Is it Europhobia and distrust?

Or is it tea and crumpets, umbrellas on standby. Is it cream teas and castles. Green fields and rolling hills. Maypoles and country fairs. Cider, and beer, and ale, and wine. Freedom, and hope, and stubbornness and sarcasm, and a dry, endless pessimism which belies inner strength.

I don’t think any of those things will be lost to Europe. Rather, I believe they are the greatest treasure we hold; one which can only grow with the sharing. I am English. I am British. And I am European and I want to stay that way.

I’m voting Remain, because in my heart, I think that is the most patriotic thing I will ever do.

ESAendgame and Me.

So, I’m hauling myself back from the shadowy realms of the dead blog god’s domain. Not just for epilepsy this time either, though that is why I started this little space. Today though, I want to talk about a bigger issue.  A wider one which affects hundreds of thousands of people up and down the country and has led to hardship, despair, fear and even death. I’m going to be as impartial as I can in this blog despite that though, and lay out just what the system is that people are protesting.

For a long time now, I have been a recipient of Employment and Support Allowance, or ESA as I will refer to it from now on. This is the benefit that replaced the old Incapacity Benefit, and is a benefit for people who are too sick or disabled to go on Jobseekers Allowance.

That point is worth repeating. This is a benefit for people whose health prevents them from working as an able-bodied or fit person can. Obviously, this is a wide ranging bracket, so ESA is split into two groups. The “Support Group” is for people who are incapable of any kind of work, and who are highly unlikely to ever be able to. The other group is the “Work Related Activity Group” (WRAG), for people who probably could work, or whose health condition may not be permanent, but still, they’re not fit or able-bodied enough to look for a conventional job as would be required by Jobseekers Allowance claimants.

People in the WRAG (such as myself) are encouraged to participate in “work related activity” such as training programmes, voluntary work or work focused interviews – some of which are mandatory unless you are a lone parent with younger children.

By far the biggest hurdle people face, however, is getting placed into a group and then staying there. Claiming ESA is easy enough, at first. You go into the assessment phase and have to provide notes from your GP stating that you are not fit to work. And if your GP is willing to state that, then chances are, you aren’t. Because a doctor that knows you and your medical history (and all the back and forth between any specialists you see) can make that judgement, and is hardly going to lie. I see my GP a lot and he recognises me when I come in, but I can’t for the life of me imagine him or any other GP committing fraud on mine or anyone else’s behalf.*

However. When you apply for ESA, it’s not just a matter of providing doctor’s notes. You also get put on the list for a “Work Capability Assessment” or WCA. This is an interview process outsourced to a company called ATOS, wherein a “doctor” who has never met you before over the course of one interview decides whether or not you are as sick as you (and your GP) say you are. This would be problematic enough on its own, but ATOS has a track record for getting the decision wrong. (Note: that article is two years old and yet ATOS are still in charge of WCAs)

Terminally ill cancer patients have been found fit to work. People with severe epileptic seizures have been found fit to work only to die a few months later from those same seizures. Profoundly sick and disabled people have been left destitute, forced to appeal decisions which took away their only income, and 40% of those appeals against ATOS are being upheld. 16% of ATOS’s decisions overall are being found to be incorrect.

The principle behind ESA – to support the sick and disabled who cannot work, and provide the correct assistance to those who can work to help them find employment – is one that few disagree with. People want to work. I want to work. But I also don’t want to go through the stress and fear of waiting for a letter to arrive on the doorstep telling me that a stranger I have never met has decided that I don’t need that extra support.

WCAs are repeated. The “brown envelope” that comes through the door periodically can re-summon you to display your incapacities, or demand that you fill out an exceedingly long form with tickbox options to display how you are sick or disabled. This side of things is the other problem with ESA. Sickness and disability does not fall into neat little tickboxes. Yes, some people are demonstrably disabled or sick. Blindness, cancer, use of a wheelchair, the lack of motor control to pick up small items, these are all tangible ways in which some people can “prove” they are disabled.

What, then, about those with learning difficulties – those who spend their lives trying to appear normal, only to be forced to tell a stranger all the cannot do; those with autism or aspergers who are severely traumatised by having to talk to a person they have never met; those with mental health issues whose health rapidly deteriorates from the stress and fear of having to prove themselves and the prospect of losing everything if they can’t; those with conditions which vary, such as ME or fibromyalgia, with few “tickbox-worthy” symptoms but whose lives are dominated by these problems?

The answer is that many of them are found “fit to work” and shunted onto Jobseeker’s Allowance – only to be told by the jobcentre that they are too sick to work and therefore cannot claim that benefit either.

This is a system which is deeply and inherently flawed. It was flawed from the outset, too, because it was designed to save money, to reduce the welfare bill. Let me direct you to my asterix point below, and that 0.5% fraud rate. The only way to reduce the cost when there is a remarkably low fraud rate on a particular benefit is to take said benefit away from people who are entitled to it. This is what has happened. ESA has been taken away from deserving people so as to reduce the welfare bill. And as a direct result, people have died.

This is where the ESAendgame campaign is coming in. Such a system, which knowingly lets down society’s most vulnerable people, has to change. Has to be replaced with a system which supports and works with them, instead of against them. And to do that, we need everyone to work together, to stand up and make themselves heard, to say “Not In My Name”, and demand that change comes. Now.

*As it happens, the proportion of ESA and DLA claims which are fraudulent is around 0.5%

Why I want people to Take Epilepsy ACTION

Well, I do have news, but I’m afraid it’s going to take a back seat to the main thrust of this post. You see, today, Epilepsy Action launch a new campaign – Take Epilepsy ACTION – to promote awareness about the different types of seizure that exist, and what first aid is appropriate.

This is, obviously, something that is very important to me. Epilepsy Action commissioned a YouGov survey which showed that almost 9/10 people would not know the correct thing to do if they saw someone having a seizure. A significant portion of people would actually do something which could potentially harm the very person they were trying to help.

Now, given that Epilepsy is one of the most common neurological conditions in the world, that’s a pretty shocking statistic. It’s about time that the correct information was widely know, as people with epilepsy have had to face public misunderstanding and discrimination for a very long time.

The link above goes to the main campaign page for the Take Epilepsy ACTION page, and contains a short video demonstrating the correct first aid procedure, as well as how you can help. But I want to repost here the ACTION message to remember if you see someone having a tonic-clonic seizure (where the person is unconscious and convulses – the “typical” seizure):

A Assess
Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury 
C CushionCushion their head (with a jumper, for example) to protect them from head injury
T Time
Check the time – if the seizure lasts longer than five minutes you should call an ambulance
I IdentityLook for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do
O OverOnce the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round
N NeverNever restrain the person, put something in their mouth or try to give them food or drink

Remember ACTION, and call an ambulance if you have reason to believe this is the person’s first seizure (if you cannot find an ID/Medical card or jewellery, if the person has a second seizure without recovering from the first, or if the person is injured. 

Now, on to my news. I had my neurologist’s appointment yesterday, (finally!) and it has certainly given me food for thought. She thinks that the seizures I am having at the moment are all non-epileptiform attacks – in other words, they are all the dissociative seizures. This is because I have had video telemetry showing that I do have this form of attack, and the majority of EEG tests I have had show this pattern. In other words, all the drugs in the world aren’t going to fix my current problems.

I’m still not entirely sure how I feel about all this. I haven’t been told that I don’t have epilepsy – the first EEG I had did show unusual activity, and she has told me to carry on taking my medication for now. But it looks more and more like the Keppra is taking control of the epileptic seizures, and what I am left with are the dissociative ones, which are caused by, surprise surprise, stress. I’ve been referred to a different specialist, and will probably be referred again for some CBT.

I do feel a little up in the air about it all. While I am happy to go with the neurologist’s opinion, especially as there is some evidence to back it up and there’s a chance of “fixing” the problem a little, I’m not entirely convinced that all the seizures I’m having are dissociative. Many of them, yes, do fit that pattern. My non-convulsive seizures are all rather similar to each other, and these are the type that was captured on the video telemetry and recognised as dissociative. But I have never had one of my (much) more convulsive seizures while wired up to an EEG, so I’m left in limbo wondering which category they fall into. I guess time will tell. If the CBT doesn’t stop them, then I’ll know it’s more likely they are epileptic. Still, they are certainly the least common of my seizures now, so I don’t think they’re the priority at the moment.

Do I even need to say?

Yup. had a seizure again.

I mean, it’s not exactly shocking, but it is rather annoying. Just another reminder of all that is wrong with my brain. At least I managed to get out and vote.

I’m not going to get all preachy now, because the polls have closed and I’m too late to make a difference (too disorganised and forgetful, if I’m honest), but I do hope that if AV doesn’t win (which I guess it probably won’t) that it was close. I care about democracy, and having my voice heard. Mostly because I feel that right now it isn’t – that as far as the people in power are concerned, people like me don’t really exist; we’re just statistics. And it’s easy to dismiss numbers on a page, and a lot harder to dismiss names and faces, which is why no one ever comes looking for the names and faces when the hard decisions are being made.

Curses, that’s starting to get preachy. I’m going to call it a night before I start lecturing my opinions to the world wide void when it doesn’t really matter and I’m too late to make a difference. It’ll only disappoint me when I run out of air to wheeze.

And yes, I have been having a slightly rubbish few weeks. Haven’t we all?