HD_Hiddennomore
318 posts
This #MentalHealthAwarenessWeek focuses on moving more for well-being, yet many face barriers to participating in sports. @MamadOmar5, leading the #MyMovingBrain project, with @epilepsyireland & @naiireland, shares our aim to promote inclusion in sports for those with #Epilepsy.
We'd like to see Health Regions work for those with complex care needs typified by those living with #RareDiseases. A number of care pathways have been approved by HSE. Let's see these pathways implemented across Ireland NOW to "road test" Health Regions. @BernardGloster @CcoHse
👇150k views now of @ronancollins7 venting the anger and frustration felt by those in the Neuro care community. How are families living with neurological/neurodegenerative conditions supposed to feel seen when the beautiful, caring professionals we need aren’t seen? @HSELive
It's very difficult to be seen or heard when you are dealing with a rare neurodegenerative disease. Huntington's disease has one HD nurse in Ireland. Mental health services frequently say 'it's not a mental health illness'. Families are abandoned over generations.
It's very difficult to be seen or heard when you are dealing with a rare neurodegenerative disease. Huntington's disease has one HD nurse in Ireland. Mental health services frequently say 'it's not a mental health illness'. Families are abandoned over generations.
And disability services tell you they can't assist as the person was not born with it. Disgraceful waiting lists to even be assessed by an MDT and don't get me started on trying to see a neurologist. As if the journey is not bad enough to begin with.
