By Lucy Shipston and Amy Gleeson, Epilepsy Team, Adult Learning Disability Team, Oxleas NHS Foundation Trust
I have a gentleman on my case load, he is a young man and has lived with his parents since a baby. He accesses day service and respite.
He does not have seizures often (approximately 1-2 per year) but when he does have a seizure, they are extremely severe and usually end up in an ambulance being called due to severe cyanosis and lack of oxygen. He has been known in the past to be rushed to hospital and be intubated. He has also been induced in to a coma previously.
The biggest question I had when I first assessed this gentleman was "why is he not on an emergency rescue medication?". His neurology team hadn't considered it, nor did his GP.
I liaised with neurology to make the suggestion of Buccal Midazolam but also questioned if there was any obvious reason he was not prescribed it i.e a previous adverse reaction. No history of an adverse reaction to it and no obvious reason as to why he wasn't prescribed it.
Long story cut short, we managed as a team to get him Buccal Midazolam prescribed and I requested if we could go slightly outside of the ordinary BNF guidance (usually Buccal Midazolam to be given at 5 minutes of a continuous seizure) and for it to be administered at the onset of a seizure. Both parents and day service said they feel Buccal Midazolam needs to be given at the start because waiting 5 mins would be too long, given how unwell his seizures can make him.
I wrote up the guidelines, discussed it with family (after sharing with neurology) and asked all the relevant people involved to sign. Amy Gleeson played a huge role as Epilepsy Support Worker to ensure that everyone involved, signed the guidelines and hand delivered a set of guidelines to day service and respite.
Once shared, Buccal Midazolam training was provided to parents and I double checked to make sure day service and respite are also trained (and confident and competent) which they already are.
Yesterday evening, this young gentleman had a seizure. Parents administered Buccal Midazolam for the first time since the plan has been put in to place and they followed the protocol exactly as they should have done. An ambulance was called immediately post administration and his obs were taken etc. He stopped convulsing after 3 minutes which is unheard of for him. Within about 10 minutes he opened his eyes and recovered well. Ambulance crew felt it was not necessary for him to be admitted to hospital (which again is unheard of for him!).
I was so over the moon to receive a telephone call from foster mum this morning who said "you have saved my son's life". She reiterated that prior to ALD epilepsy input, Buccal Midazolam had never really been questioned or pushed for by anyone. She was extremely thankful and grateful to which I responded "It's a pleasure, it's my job"
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