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"Let down by epilepsy team"

About: Forth Valley Royal Hospital / Neurology

(as a parent/guardian),

My daughter was diagnosed with absence seizure epilepsy in 2015 following an EEG. At first she was under the care of a consultant within the NHS Forth Valley Epilepsy Team and they were brilliant. We feel they listened to us, they explained the different medications to us and they even took time out of their holiday to call us when we were having trouble with the right dosage of Ethosuximide for my daughter. 

Sadly the consultant retired and we were put under the care of another consultant . Since being under their care I feel we have had no support whatsoever. I expressed concerns to the consultant that I thought my daughter may be having seizures in her sleep as she was very restless, smacking her mouth and even at one point fell out of bed. The consultant didn't think this was seizure activity and nothing else was done.

I would have thought that maybe an overnight EEG would be a more appropriate course of action but we were just told to try and video these episodes but this is easier said than done given I have another child and my husband and myself both work full time.  My daughter then had her first tonic clonic seizure in February 2020. Following this I spoke with the consultant who advised us to introduce a new medication, Lamotrigine along with the Ethosuximide which we duly did and everything seemed to be fine for a bit.

My daughter was then slowly weaned off Ethosuximide as we were not seeing any absences. I then expressed concerns to the consultant that my daughter kept touching her face when the sun was shining in her eyes, again this was dismissed and I was told this was not seizure activity. I even managed to get videos of this and uploaded these to the nhs portal. We are now under the care of new consultant as I understand the previous one is on leave.

We first met the new consultant in August 2021 and found them really nice and felt she listened to us and my daughter. I again mentioned about my daughter touching her face when the sun shone in her eyes and the consultant looked at the clips which I uploaded (these had not been looked at at all since I uploaded them several months prior to this). The consultant was unsure and so asked for another EEG to be carried out given that my daughter had not had one since 2015. Unfortunately my daughter had another tonic clonic seizure the morning of her EEG.

After getting her checked out at A&E we were advised by the doctor in A&E to still get her EEG done. The practitioner who carried out the EEG was a bit reluctant to carry out the EEG given my daughter had only just had a seizure that morning and advised we might not get a true reading. They wired my daughter up to the machine but advised they would not give her the photosensitive part of the EEG as she could see there was still something going on in the background in my daughter's brain. I was very happy at that as I didn't want her going through anymore and she was extremely tired.

After we got home I contacted the Children's Community Team and spoke to someone who asked if I had administered a Buccal given the seizure had lasted more than 5 mins. I told her we were not given any emergency medication and after reading more about this I am extremely disappointed and angry that this was never mentioned to us after her first seizure as this also lasted more than 5 mins.

The nurse at the Community Children's Team and the practitioner who carried out the EEG both advised that they would contact the consultant and the epilepsy nurse to let them know what has happened and that someone would be back in touch with me. This is now days later and I have not spoken to anyone. We have had no support whatsoever. Do we increase my daughter's medication? Should we now be receiving training to administer the emergency medication?

I feel totally let down by the whole epilepsy team and feel we have just been left to get on with things ourselves and that any concerns fall on deaf ears. I cannot believe we are three days after my daughter having the seizure and no-one has called us to talk through a plan from here on in. 

Responses

Response from NHS Forth Valley 4 days ago
Submitted on 14/10/2021 at 12:29
Published on Care Opinion at 12:29


Dear FVconcernedmum

Thank you for taking the time to get in touch, I am sorry to hear of some the difficulties you have been experiencing recently within NHS Forth Valley. I am keen to look into your experience but would need some more information, can I please ask you to contact me via email to allow me to progress this. My email address is karen.macfarlane@nhs.scot

I look forward to hearing from you.

Kindest regards

Karen Macfarlane

Department Manager for Paediatrics/Senior Nurse

NHS Forth Valley

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