Tomorrow, Wednesday 24th, there will be a 10 Minute Bill about Epilepsy care and education, straight after Prime Minister’s Questions

There is still time to write to your MP and urge them to attend and support this bill. It would only take ten minutes of their time. You can find and contact your mp here: http://www.writetothem.com/

I wrote to my own MP, Therese Coffey, as follows:

Dear Therese,

his is  Caroline Page,  Woodbridge County Councillor here. I’m contacting you as my MP about an issue in which I have I have both a personal and a campaigning interest  – the care and  education of people with Epilepsy.

You may be  aware that there is going to be a reading of the Ten Minute Rule Bill on Epilepsy and Related Conditions (Education and Health Services) Bill straight after Prime Minister’s Questions on Wednesday 24th November.

I don’t know if  you are attending PMQ this week? If so, I would be grateful if you would stay stay in the chamber for an extra 10 minutes afterwards  to support the bill.
Although nearly half a million people in this country have epilepsy, it remains a Cinderella condition – kept 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.

Statistically, there should be at least 4 MPs currently in the House of Commons who have it -and 30 more who will have/have had a seizure at some point in their lives. Yet only one MP has mentioned that they have epilepsy!

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 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.

Indeed I have known for years a 17-year-old who has severe epilepsy, a high IQ, a good work ethic, and a supportive family  yet has managed has only one GCSE despite going to one of the best state schools in Suffolk.

It has cost the health service, central government and SCC an extraordinary amount of money to support her to this low level of attainment. And unless she can improve on this she will cost the health service, central government and SCC a great deal more over subsequent years. This is a waste on many different levels and is no benefit to anybody in the equation.

(I must point out here, that this situation is shared by many other students with other chronic conditions reliant on powerful medication – all of whom can also be added to  this failure.)

Yet this failure is by no means inevitable. Recently the National Centre for Young People with Epilepsy  have discovered it’s neither expensive nor unduly challenging to turn this situation around via a training programme for schools. The charity is currently rolling out an intervention programme to improve the dire educational outcome of young people with epilepsy (Here’s a link to their successful education pilot study in Surrey: http://www.ncype.org.uk/dmdocuments/EpilepsyChampionsPilotReport.pdf )

The impact – and cost to us all – of poorly addressed epilepsy has been raised in parliament recently by MP Paul Maynard.  I gather also that neighbouring MP and doctor Dan Poulter has recently put in writing his concerns about (specifically) Suffolk provision .

Can I urge you to add your voice to his at parliamentary level – whilst I campaign  more locally –  to ensure a significant slice of our population is able to achieve their potential contribution to our society (and, indeed to this economy)

Best wishes