OUCH(UK) Organisation for the Understanding of Cluster Headache


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Daughter 10

1 post / 0 new
#1 Mon, 13/03/2023 - 22:43
Last seen: 1 year 2 months ago
Joined: 13/03/2023 - 22:25

Daughter 10

Hello, daughter was diagnosed in November with CH by senior headache specialist at The Migraine Trust. They emailed my daughters GP surgery to sort out oxygen and nasal spray. The GP surgery did do this and oxygen was delivered to our home. I asked the GP surgery if they could please prescribe my daughter with small oxygen cylinder so she could attend school or when she's out the home. The surgery has refused this stating that just because someone at the migraine trust has a feeling my daughter has CH they will not prescribe any small oxygen cylinder now until she has seen a NHS paediatrician. We are due to see one in two weeks time. The migraine trust lady we dealt with is a senior headache specialist which I had to send over a diary and every symptom my daughter has. She's not been in school now since November due to not been able to have oxygen at school and also missed 12 weeks of education because the local authorities only started providing her with education and tuition at home a few weeks ago. I requested that we be referred to GOSH and the GP surgery said she needs to see the paediatrician first. I just feel like they have taken away months of education for my daughter and also her daily life as we've not been able to even go for a day out as we don't have small oxygen cylinders only big ones and oxygen concentrator 

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