LETTER: Raising epilepsy awareness is helping, but more needs to be done

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Re epilepsy - I did notice in the article on the 4th June that the leading consultant that made comments on epilepsy is one of the two neurologists I saw at Lincoln County and I’m not going to comment the thoughts he had on my epilepsy while the other neurologist was on holiday.

First all saying they have a first fit clinic is not considered politically correct as the word fit had got misused and some with epilepsy find it offensive, which I don’t having grown up with varying terminology regarding epilepsy.

The referral time is ridiculous, as if it is a first seizure you must call an ambulance as if there is nothing visibly wrong you cannot tell what has caused the seizure as it could be more serious such as a brain tumour or other triggers.

The clinic that they are saying is in place has to have a epilepsy nurse specialist as epilepsy is such a complex medical condition, that’s why we need this in place.

One incorrect info in the newspaper was it said one in 10 people have epilepsy and it is one in 100 people.

Susan Fox commented on the article saying about the lack of services in other areas, which I agree there is and she is obviously passionate about admiral nurses for dementia and I have attended NHS meetings and there are people trying their hardest to get those in place and they need more people to help them get the help they need.

I’ve got friends and family who are and have been nurses and I respect them and also doctors, but with epilepsy being so complex a neurologist should not diagnose you until you have seen a specialist, as a neurologist with an interest in epilepsy is completely different to a epilepsy specialist.

ULHT had gone over budget by £26 million pounds and that means there is possibly very little chance of getting these services which us taxpayers deserve.

In Lincolnshire we should be asking how other hospital trusts are getting it right and we are not.

One kind lady in Horncastle made a very generous donation to Epilepsy Action and I was gobsmacked when she told me and said about time someone told them how it is as her father had epilepsy and since the article more people have said they have epilepsy and I won’t give in.

Thank you and I hope you can publish this especially to show how kind and generous the people of Horncastle are.

Andrew Jackson