"Long gaps in treatment"

I would just like to express my disappointment and anger over the way the headache service at Stonehouse Hospital is managing my case. I have had migraines for years and over the past 5 years it has become severe and enduring, with frequency of migraine days between 13 and 16 per month. These are the days I have pain, and excludes the days where I have prodromal or post-migraine symptoms.

From the very start I have found the nurse's approach overly pedantic and unhelpful, and I had to specifically ask for alternative treatments when botox treatment eventually failed, as they did not offer other treatment options.

I was put on Erenumab, and although it helped reduced the migraines, it caused too many side effects, and there was a joint decision made to stop it. I was then tried on Fremanezumab, received treatment for 3 months, and although I had side effects, these did seem to improve by month 3.

After I did not receive my usual phone call from the Home care service to arrange delivery, I was advised that no prescription had been received. I understood that a review after 3 months was necessary, but the review appointment I was offered was right before Christmas. This meant that there would be a treatment break of at least 6 weeks. I was advised that there was no way an appointment could be arranged sooner. Seeing all the information the nurse was interested in was sent via email and I could not see the reason for such a long treatment break, when the telephone appointment really could have been an email.

After 8 weeks, I restarted Fremanezumab. At the telephone appointment I was told the prescription would be for 9 months. After 3 months again no phone call from home care service to arrange delivery, and after phoning the headache service I was advised by the secretary that from what they can see on correspondence I was to send in some BP measurement. This was not discussed at appointment. A week after the BP readings were sent I phoned the service again, just to be told the nurse now required me to attend a face to face appointment to discuss side effects, and the secretary will get me appointed.

This means another break in treatment, a treatment that has worked, which did cause side effects at the start but got better over the 3 months. However, with the treatment breaks it feels as if I have to start over again. This drug only achieves a steady state after 6 months, so having these gaps in treatment means that the migraines frequency increases quickly again.

Without medication I am struggling to work. Additionally, I feel rotten the day after, meaning that I am less efficient at my job. Taking days off intermittently means I will be flagged up to HR again. I work in the NHS and am proud to do so, but honestly, I cannot relay the despondency I am feeling at the moment, I feel as if I am being sabotaged by the very service I am trying to work for.