27th September 2015, by Matt O’Neill
I think like many of you with narcolepsy, I have been “enjoying” the high temperatures of early summer to a mixed degree. I certainly struggle with my energy when the mercury rises along with my perspiration, inability to concentrate and general irritability!
It’s certainly been great hammock weather but only in the shade as sleeping in direct sunshine turns my head very pink and I’ve found it impossible to combine both hammock and a hat. It’s much more difficult than it sounds.
I struggle with the uphill battle to obtain fairness and consistency in the way we are treated by both the Dept of Health and Dept of Work & Pensions and have continued to work with solicitors to obtain recognition of the severity of narcolepsy as part of the claims under the Vaccine Damage Payments Act 1979.
Previous Trustees of the charity worked hard to have narcolepsy recognised as a disability in the UK and this is why we have protected rights under the Equality Act 2010. The current Board of Trustees is determined that we continue to raise awareness of our condition, it’s impact on us, our friends and families.
My priorities remain raising that awareness to ensure access to recommended medications, the appropriate level of benefits and generally protecting our rights in education, work and play.
Matt O’Neill
Chair Narcolepsy UK – from his hammock