Does anyone know if there are specialist epilepsy nurses covering petersfield area?

[newlife4us]

Hi

We will shortly be moving to Petersfield. Does anyone know if there are paediatric epilepsy nurses covering this area?

Have searched the internet but not found an answer.

I know there is a paed epilepsy nurse who covers winchester. Perhaps phone the hospital?

Many thanks. I did phone Portsmouth but the community nurses were in a meeting and someone was going to call me back - but didn't (no surprise!) I will try again.

Are you in Hants?Saw on another thread that you'd managed to get a statement for an epileptic child. Its impossible where we live now (even IPSEA said my LEA were probably the most difficult) but am hoping for better luck elsewhere. Am so desperate to get some help for DD.

Hi, newlife4us, yes we are in Hants. I have found them to be very efficient, and statementing for DD1 took from Sept 1st (Letter requesting Stat Assessment posted by me) to January 20th (Final Statement received by me), so 20 weeks and 1 day total, with Christmas in there too.

The best advice I could give you is get your DD's difficulties documented as thoroughly as possible. THen you have evidence.

DD1 does have epilepsy, but it is well controlled, and so far she has only had drop attacks and occasional absences, but since December has only had 2 drops. However, she does have SEN in lots of areas, motor, social, speech and language, etc.

Thanks so much lou031205 for coming back to me.

Such a relief to know we're moving to an area that's a little more understanding and efficient.

My DD has uncontrolled epilepsy (between 5 and 30 absence type seizures per day and tonic-clonic/myoclonic seizures at night). She's had a lot of issues since birth but was developmentally normal until the epilepsy and AEDs (age 4). She now has significant cognitive issues, problems with concentration and memory, has a number of dyspraxic traits and poor motor skills etc. She also has an underlying viral/immunological problem which G.O.S still investigating.

I've got letters from GP's, G.O.S and local paeds verifying her issues as well as report from community paediatrician stating that she has a number of issues requiring an urgent ed psyche assessment (following a developmental assessment in Jan this year).

I have got a letter ready from IPSEA but know that its a bit futile here. I've got a friend who's currently going through statementing process at the school, but its only by virtue of the fact that she's got outside agencies (ie SALT and OT) attending meetings with the school and disputing ed psyche assessment that she's getting anywhere. Don't think DD's neurologist at G.O.S has time to go to school or dispute ed psyche! Hence really want to be in an area with specialist epilepsy nurse.

Sorry rambling away!