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John has uncontrolled seizures sometimes both day and night. Other times he can go epilepsy free for a few days.Often, he says, his life is hell - 'frightening, depressing and debilitating'. He asks why there is not more support for people with epilepsy in the evenings and at weekends and suggests the government should support initiatives such as Epilepsy Society Helpline's extended opening hours.
GPs are very good at dealing with our everyday illnesses. General hospitals are marvellous at coping with heart attacks, breathing problems and road traffic accidents patients, to name just a few.
However when it comes to dealing with epilepsy, I believe that only a small proportion of healthcare professionals really understand this very complex condition and the difficulties of coping with it, alone, both by day and night.
Seeking help during the day is difficult enough - I have a 20 minute appointment with my neurologist once a year - but what about in the evenings, at weekends, bank holidays, Christmas and Easter when our need is often greatest? Who do we turn to then?
It is bad enough for those who have a loved one or carer to help ease their burden - someone to talk to who may understand what they are going through. But what about those of us who live alone? These twilight and holiday periods when there is no one to call on for help, can become a horrific time.
John know can leave a message on the answerphone for my epilepsy nurse and usually, they respond to me the following week day. We have good old Epilepsy Society and Epilepsy Action's helplines where we can speak to a very good listener, telling them about our problems and fears. But alas they cannot give any advice. Helplines often only operate from 10am-4pm, although Epilepsy Society has now extended its hours from 9am-4pm on weekdays and from 9am-8pm on Wednesdays. In short we have no choice but to look after ourselves and our fears. This is wrong and enough is enough!
I would like to see prime minister David Cameron investigate how best to help people with epilepsy in their times of need, and to understand where services are lacking. We need members of both houses of parliament, along with Epilepsy Society and Epilepsy Action to discuss and find ways of supporting us all, not just at weekends, but also at Christmas, Easter and at all the bank holidays of the year.
To leave us with no means of communication at such times seems neglectful to say the least. Surely this must go against our human rights.
I would like to see parliament giving more funding to both of the aforementioned epilepsy help lines so that they could operate at limited periods at weekends and bank holidays.
This is just one of the ways that I can see this dilemma being resolved and would gladly welcome suggestions from others if they can come up with more or better solutions.