Tag Archives: Alan Johnson

Epilepsy and GCSEs: built-in injustice

So today we hear that Michael Gove would like to abolish the GCSE system and go back to old fashioned O-levels and GCEs?  Maybe. (Though the Lib Dems  think otherwise)

In the interim let us hope he looks at whether he can find a system that will be any more fit for purpose  than the existing (GCSE) system  in assessing young people with  consciousness-fluctuating conditions such as as epilepsy. That is,  the very small percentage of the youth population who toggle between being ‘perfectly well’ and briefly ‘incapable’ without warning and at a moment’s notice. That bunch of young people whose gifts and capacities have  been so ruthlessly ignored  by our current inflexible educational system with teaching shifting between  ‘special needs’ and ‘failing mainstream’ without any acknowledgement of their actual abilities. People who could be easily become a Julius Caesar, an Edward Lear, a  Dostoievsky, a Socrates..

Here is  the case of modern-day  Ms X.

Ms X has no mental impairment except for that caused by the effects of bad epilepsy and the heavy-duty medications she has to take to try and control it. Ms X is sitting GCSEs for the Nth time. This is rather a tragedy for Ms X who studies up to seven hours a day, and has done so for six years to little practical purpose.

This is because if you have a catastrophic tonic clonic seizure before or during  a GCSE  exam, you are not able to put it off till a better time. ‘Use it or lose it‘ as they say – and lose it is often the result. Ms X’s seizures are so frequent it  is pretty unlikely she will ever go through the period GCSE exams take without one or two fairly substantial tonic clonic seizures on exam-days.

Sure enough, last week her parents  were woken by a loud crash at 6am in the morning of the longest Maths GCSE exam. On rushing into her room, they found that – apart from the ongoing tonic clonic seizure itself- she’d managed to drop from a standing position, hitting her head extremely hard, and cutting both her mouth and tongue.

She was lucky. She had no more seizures that morning  and so didn’t have to take the heavy barbiturate required  to prevent her going into status epilepticus and the hospital (as had already happened for her English exam two weeks previously). In fact, she was lucky enough to  ‘come round’ – well, at least regain consciousness – two hours later. Sixty minutes before her 2 hour Maths GCSE paper. Which naturally  could not be put off or rearranged for such minor trivialities as an early morning seizure.

Yet Ms X had had the equivalent of a knock-out blow to the head. I suspect that once again, she will not fulfil her potential.

What a different outcome there might have been for Ms X and for this exam if she were sitting it in the state of health she was in the day before – or the day after.

Successive ministers and education departments have not chosen to recognise the full extent of the difficulties of a student with epilepsy. Ms X has sat the same exams under Michael Gove’s, under Alan Johnson’s, under Ed Ball’s watch. All have talked about a world-class exam system.  None has recognised the injustice of insisting on a fixed-date one-off exam for those students with a serious yet fluctuating health condition.

Ms X is either bright, alert and mentally competent, or she incapable of remembering a thing. Is a GCSE exam instituted to discover what she knows – or merely what she is capable of remembering on one specific date?

If only Mr Gove, Mr Johnson, Mr Balls – if only every education minister that has ignored the exam issue had some recognition of the condition… If one day they were woken by having live electrodes attached to their brain for 5 mins and then were punched hard in the face without means of defence or a gum-shield (causing considerable pain and disorientation, broken teeth, split lips, bitten  tongue) and then were asked to prove all their last two years of knowledge in an exam paper 2 hours afterwards, would they consider this to be a reasonable test of their own abilities?

I suspect not!

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

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)