Category Archives: epilepsy

epilepsy, Epilepsy in Suffolk, Your councillor

Seizing Cinderella: Raising the Curtain on Epilepsy

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I’ve made a lot of fuss on these pages about the stigmatisation of epilepsy. Many people have it (1 in 30 will have a seizure at some time). You can develop it at any time in your life  for a variety of reasons (eg stroke, head injury, age, illness).  Few will mention it. Everyone ignores it. Society does not accommodate it.

It’s the elephant in the room, skeleton in the cupboard and all the rest of those cliches

Above all, epilepsy is not sexy. There are no brownie points to be gained by putting it on the stage, screen or page. While you’re having a seizure it’s hard to make you look look pale and interesting – frankly, sometimes it can be hard to make you look human. A seizure taps into folk-myths of transformations: werewolves, changelings, vampires. In short, a seizure looks scary, and it is hard for people to see beyond it: that underneath that (often) frightening transformation there is a person just like yourself but with a bum deal in the neuro-transmitter department.

No wonder that those with epilepsy do badly at school, are poorly served by health services, and find it hard to gain employment or form relationships.  They can be arrested in a street, turned off a bus or out of a pub – just for being ill.

And all these snubs have a huge impact on the life of the person with epilepsy

“You may only be put out of action for an hour every two weeks, but you’re always worrying, because you don’t know which hour it will be..”

Last Sunday, I went to Halesworth’s  Hightide festival to see a reading of Stephanie Street’s play Seizing Cinderella which tackles the issue head-on. Based on the true story of Ross (Brendan Coyle) it tell of the loss of his 26 year old daughter Karen (Louise Brealey) after years battling with the condition. It’s a double loss – first to the character-change that came with the merciless anti-epileptic medication, and then to SUDEP Sudden Unexplained Death in Epilepsy .

Ross doesn’t want this loss to happen to anyone else,  but discovers the biggest obstacle is ignorance, denial and stereotyping – and this results in deficient care. In the couple of years after Karen’s death, Ross learns more about epilepsy than in the 12 years she lived with it.

In counterpoint, the play also looks at the wonderful benefits an Epilepsy Support dog can bring to the life of a person with hard-to-control epilepsy – the 3 out of 10 whose seizures cannot be controlled by drugs.

The cast for the reading were excellent (see link for full details)  and supported this play fantastically. If I had a criticism, it was only that there was a facile link made between the poor public service response to epilepsy and the present government.

As if.

Amongst the shocking epilepsy statistics pointed out to – and ignored by – the last Labour government were: 400 avoidable deaths per year; 69,000 people living with unnecessary seizures; 74,000 people taking drugs they do not need; £189 million needlessly spent each year.  Nothing has got better since then, but it certainly hasn’t got any worse.  Those of us who cope with the appallingly deficient response of many services to epilepsy care across the board know only too well that it is not matter of current cuts, but long-term political lack of interest.

Let us hope that this play will break through some of the fear and prejudice behind this by reaching a wider audience. Everyone in this country needs to understand – and help change – what life is like for that 1 in 30.

After all, one day it could be you!

epilepsy, Epilepsy in Suffolk, PIP (ex-DLA), Uncategorized

Epilepsy and DLA: the application

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Many people end up at this blog having concerns about Epilepsy and DLA.

The underlying problem is that many people (medical professionals  included) have little or no understanding of how many different issues are encountered with epilepsy and what an impact it can have on trying to lead a ‘normal’ life. Would that it was just an occasional tonic clonic seizure, eh?

So for those with epilepsy, struggling to fill in a DLA form , and those who administer the DLA and haven’t realised how little they might know about epilepsy, here are some tips:

* Only claim if you actually need it.  DLA isn’t a reward for not being well – it is to help someone with a disability afford a life that mirrors more closely that of other people without that disability.  I have very mild epilepsy, my daughter has it very badly. If your life is pretty much the same as other peoples (like mine is) you probably aren’t eligible for DLA – but then you (I) don’t actually need it. There are plenty of people who really really do!

*The effects of epilepsy vary tremendously from person to person. Don’t think that the officials who look at the form will know what you are talking about: spell everything out. If the form doesn’t have a place for a problem, add it at the end.

* Remember that while most people know nothing about epilepsy, they carry a stereotype in their head (generally an actor acting a tonic clonic seizure  in a film or on tv). You must make sure that your application spells out the actuality as it is for you.

* ALWAYS maintain a full seizure chart  for each year, and keep them afterwards.  (I download a day by day year planner and fill it in online, with different colours and symbols for various seizures, interventions and outcomes. I note all changes of meds too. This means I can always print off a totally up-to-date one)  Use the chart to mark  not only seizures, but also the results (broken teeth, hospital admissions, episodes of status, period in intensive care). I have ten years worth now recording the appalling conditions in which my poor child has lived –  and wave them around at the slightest provocation.  I hand out updated ones at every doctors’ appointment so it appears on all the medical notes too. No-one can say that the information isn’t there!

* The DLA form doesn’t apply very accurately to Epilepsy. Spell out the effects of the epilepsy. For example:  Yes you can walk without difficulty for miles – unless you are having or recovering  from a seizure. However when you are walking you might suffer from an absence – crossing a road for example, or suffer a partial complex seizure and start behaving in a way that looks strange and might be dangerous.   Hazards are individual. Don’t forget to point them out if they exist.  Many people really won’t have any idea of the range of problems e brings with it..

* Estimate the time it takes to get over the effects of a seizure as well as the seizure – or all the different types of seizure you might have –  and the amount of looking after/out for that you require from others to try and ensure your safety.  If you’re ok in 5 mins, take two hours, or are not good for a day after a tonic clonic, make sure you point this out. If you fight to get up, but generally fall, mention it. If you have ten minute seizures at night, but this requires others to listen out for them, and  to check up on you during and for hours afterwards, make sure this is fully explained. If you can’t have a bath without an open door and someone in the house, or a shower without alerting people  to keep an ear out, or cannot go to a public toilet without making preparations for rescue if necessary, do point it out.  Many people would simply not realise this might be a problem.

*Save every piece of paperwork you are given because you can use them for supporting evidence: and my gosh, bad epilepsy gets you a lot of pieces of paper.  Prescriptions, appointments, letters from social workers/schools/ medical professionals etc , those never-ending bills for emergency dental work, discharge letters from hospital etc.

* Where they ask for names and contact details of all the professionals you have seen in connections with your epilepsy, make sure it really is all of them. We usually end up with eight or ten – and not by any means all medical. Take the time to track down accurate contact details: its worth it.When contacted, these are thye people who can tell it as it is!

* There can be awful and unexpected consequences of epilepsy . If you end up in a&e with broken bones and blackened eyes and a neck  brace because you fell;  or  in custody because your seizure was mistaken for the effects of drink or drugs; or end up lost and wandering because you have ‘missed’ some time, or even (god forbid) get attacked for looking odd, or behaving strangely, remember to photocopy the paperwork. It supports your statement -and makes people understand the range of dangers e brings with it.

* The same applies if you become aggressive or suicidal or incoherent with some meds. It is a tremendous inconvenience to put it mildly.

*Are your drugs time-sensitive? I have only recently realised this varies from person to person. Make sure you write down how many hours or days you can get away with after missing a dose/doses. I am not convinced that many people realise the RANGE of problems that can arise from missing meds.

* Similarly, if you need reminding, or pushing to  take your drugs, come clean. It adds to your proiblems

* Photocopy every page of your form  and every attachment and put it away for the future. If your claim is contested, and you think this is not reasonable,  you can then look and see if you have not been as clear as you thought

NB DLA is current until 2013/14. After this we will have to see how the new PIP support pans out. Currently I’m not believing either the “snatching the lifeblood from disabled children” brigade OR the “its safe in our hands” lot. Watch this space

epilepsy, Epilepsy in Suffolk, Ipswich Hospital, Uncategorized

Negligence, amnesia and epilepsy: remembering Labour’s NHS truthfully

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Lets start by saying I love, respect and am deeply grateful to the NHS.

I’ve watched one partner progress from medical student to senior consultant, other friends journey to many different medical destinations – and all of us ending up as NHS patients.  I’ve had three children (one by crash caesarean), and an arm reconstructed with 32 pieces of metal during the Winter of Discontent. I’ve supported most of my family in hospital one time or another. When my brother died of cancer, I’ve devoted time  to replacing the countless pints of blood he needed (currently 130plus donations, and rising).

So, yes, like 95% of the people in the UK I love, support and am deeply grateful to the NHS.

But this doesn’t mean I buy into the current myth being foisted by those who know better onto those who don’t. That there was a glorious golden age of unprivatised efficiency in the NHS, brutally drawn to a close by the last election. That the only people to be trusted to run the NHS are the Labour party. Oh no.

A good friend – a retired and leftward leaning hospital consultant -said to me last week,”there hasn’t been any time in the last 20 years when I haven’t been very depressed by where the NHS is heading”. He has a point.

These days the opposition, with consummate hypocrisy, bangs on about the prospective horrors of Tory privatisation. Do they think we’ve forgotten? Lets not talk about all the services that WERE privatised under the last Labour government (GP Out of Hours Services, and Sexual Health are two ones that come immediately to mind). Lets not talk about buildings in hock to PFI and how much they are used/how long they will take to pay back. Lets talk instead about the huge gap between rhetoric and reality that underpinned so much of this untruth.

In 2007, during a period of supposed national wealth, the All Party Parliamentary Group on Epilepsy published Wasted Money Wasted Lives: The human and economic cost of epilepsy in England.

The statistics they quoted were – and remain – shocking:

• 990 epilepsy related deaths annually (365 being children/young people). This does not include eg drowning and RTAs
• 400 avoidable deaths per year
• 69,000 people living with unnecessary seizures
• 74,000 people taking drugs they do not need
• £189 million needlessly spent supporting this tragic state of affairs each year.

Most shocking of all is that these statistics have not altered since this time. It as if that report never existed. So what did it say? (italics mine):

“ During the course of this Inquiry, it has become clear that the National Health Service (NHS) is failing people with epilepsy and that a much improved service can be delivered at the same time as making significant cost saving.  The All Party Parliamentary Group on Epilepsy therefore calls upon the [ then, Labour] Government to recognise the benefits of change, accept the political, administrative and ethical duty to implement these changes, and to take positive action for the benefit of both the patient and the taxpayer.
Government has devolved much decision making to local Primary Care Trusts. It was not the purpose of this Inquiry to examine that policy. It does, however, sometimes give rise to a gap between stated Government policy and actual delivery. It can also lead to a postcode lottery, abhorrent to Government, where patients in one part of the country receive a significantly worse service than elsewhere. Again, this will be clearly shown to exist in the case of epilepsy.
Government must take care to avoid the criticism that admirable policy developments on paper without targets for implementation or powers to roll out the policy are seen as no more than Government “wish-lists”, and of little use to patients facing critical service failures on the ground.

This report concluded

“ the numbers experiencing seizures unnecessarily and the numbers taking anti-epileptic drugs for which they have no need is a national scandal… It is about time that people with epilepsy received for the first time ever a health service that meets their needs, at least to the standard available to patients with other conditions. ”

Four years on, it is as if these words had never been written. It shocks me to the core that our current Labour opposition use every opportunity to imply that the NHS was safe till it left their hands and yet the ‘national scandal’ to which Health Secretary Alan Johnson was alerted and Andy Burnham inherited was as nothing to them. This was heralded as a time of economic prosperity – a time when government increased GP salaries to double their French equivalents’ while cutting their responsibilities. Clearly the notion – of decreasing cost while increasing the standard of care at least to the standard available to patients with other conditions – was unimportant to health secretary Alan Johnson, and his successor Andy Burnham.

Forgive me if I write about this bitterly. I feel very bitter. In the same year in which this report was published my adolescent child faced damage and death over and over again because she lived in a county with no specialist provision and no expertise or interest in managing difficult epilepsy. And no steer from a disengaged and totally uninterested central government to provide it. Epilepsy isn’t sexy, is it, Mr Johnson, Mr Burnham, you Labour amnesiacs and apologists one and all? And its not insurable either.

When I talk about facing damage and death this did not mean she fell over occasionally.

During 2007 she had 200 major (damaging) seizures, and innumerable minor seizures. On 90 occasions these developed into status epilepticus (results in brain damage/fatality if not stopped). Over 2007 she was taking 9 separate drugs in various suck-it-and-see combinations (many of them with toxic side effects) in an attempt to control her epilepsy or rescue her from status epilepticus.

(Can I repeat a sentence from the report ‘the numbers experiencing seizures unnecessarily and the numbers taking anti-epileptic drugs for which they have no need is a national scandal‘ . Quite).

Over 2007 she spent 45 whole days as emergency admission in 4 separate hospitals in 4 separate parts of the country. 67 further days were spent in a state of confusion so extreme she couldn’t string two words together.

Imagine what an effect this had on her life! On her social life! On her education! On her self esteem! On the life of me, her sole carer 24/7. On the life of her siblings.
And 2007 was a doozie in comparison with the horrors of 2008.
I cannot describe what it feels like to cope hourly, daily, monthly, yearly with this level of anxiety, difficulty and stress and then discover that those running the NHS – that was YOU Alan Johnson and YOU Andy Burnham knew about it, and just couldn’t be bothered to act.

So when I now hear you and your apologists complacently posing as the protectors of the NHS and those who use it, I have to remind you that you cannot expect to win the hearts or minds of those half million you failed. Or the families you wracked, and the education and careers you ruined in the process.

Alan Johnson, Andy Burnham, 他们的良心被狗吃了! (Though I don’t suppose you’ll think of checking out the meaning of this , either)