Epilepsy in Suffolk: the facts

Although nearly half a million people in this country have epilepsy, far too often it remains a Cinderella condition –  closely hidden, inadequately recognised and poorly funded.

People are often anxious to keep this condition secret because they fear stigmatisation, ostracism and discrimination. Yet 70%  of people with epilepsy are seizure free and leading ‘normal ‘ lives.

So where are all those professionals, those sportsmen,  those artists, those a-list celebs with experience of epilepsy? those who have ‘made it’ despite their condition? the people could be role-molels, and destigmatisers? Keeping their heads down for the main part, in case people think the worse of them, I suppose. What a terrible pity!

Statistically, there should always have been  at least 4 MPs in the House of Commons with  epilepsy – and 30 more who will have/have had a seizure at some point in their lives.  Yet it was only in this current parliament that Paul Maynard became the first MP to be open about having epilepsy! It is as if it were rabies – or syphilis – or smallpox.

Suffolk has no specialist epilepsy care within the county – meaning that patients need to travel outside to specialist units. As a result simple changes and ‘tweaks’ to medication (ones that could make the difference between a person functioning and non-functioning in society) may need a six or seven month wait for an appointment to discuss. If the tweak or change is unsuccessful there will then be another wait  to report back, another wait before a new medication is assessed etc.

Gaining control of the condition may therefore take years without good cause, years in which the patient and those around them become prey to lower and lower expectations.  As a result local hospital doctors may then have an unduly limited expectation of outcome (suggesting social care solutions rather than addressing the health problems of patients with epilepsy).

And epilepsy impacts on more than just health.  50% of students with epilepsy fail to reach the academic level predicted by their IQ, with effects that can be life-long. This is because a good educational outcome for  students with epilepsy is not just about medical care and risk assessment, but also ensuring that schools and teachers manage the impact that the condition/ medication has on learning. As a family member’s education has suffered dreadfully from issues to do with teacher awareness for the last decade,  I’ve been trying to get Suffolk’s educational services to recognise this fact for the entire last year, after the NCYPE/Young Epilepsy, contacted me with information about their School Epilepsy Champions training scheme. So far with no success at all.  Low academic achievement  among Suffolk students with epilepsy is put down to the failure of that student, rather than the failure of the Suffolk school system to educate. And very convenient it is for the Suffolk educational system so to do!

And  it is not only failurte of tthe education system that impacts on work, it is also failure in the workplace. While some good employers accommodate an employee’s epilepsy – and let’s remember three things here:

  1. 70% of people with epilepsy are wholly controlled by medication
  2. epilepsy is a disability and people who have it should not be discriminated against
  3. a diagnosis of epilepsy per se has no impact on intellectual attainment or innate capacity

it is surprising how frequently epilepsy is linked with joblessness.

Indeed, when that same family member was due to do work experience in Y11, no workplace could be persuaded to offer her a placement– with the noble and notable exception of the Hospital Education Service at Ipswich Hospital. ( Since then she has been very fortunate that Marks and Spencers in Ipswich offered her a placement enabling her finally to experience a workplace environment  first hand.)

Yet how can anyone learn to support themselves unless they are ‘allowed’ to work? The Intolerant Press (you know who I mean) talk endlessly about the ‘work-shy’. For people with epilepsy it’s much more  a case of employers being ‘worker-shy’

It costs the NHS , central government and local authorities an extraordinary amount of money to support young people with epilepsy to an often extremely low level of attainment. Yet unless they are supported to improve on this they will cost the health service, central government and local authority a great deal more over subsequent years. This is a waste on many different levels and is no benefit to anybody in the equation.

Yet what is needed is actually, not more financing, but little more than greater awareness and more appropriately targeted support. Not a big ask, is it?

Please help me  get this message across to all the people who need to hear it!

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