Brain Campaigner! Campaign Creator…
Ever since my Mum entered the more advanced stages of Huntington’s Disease, we have struggled with every avenue of help. Some weeks I have felt like my Mum’s doctor, social worker, mental health nurse, carer, on top of trying to work full time shifts and be a Mum myself to my little girl, Rosa. It is like being a care coordinator, but you’re unpaid, and utterly exhausted. On top of all that I am coming to terms with the gradual deterioration day to day in my Mum, which is no easy watch.
We were failed on a large scale by social services in 2016/2017, which resulted in my Dad having a period of exhaustion and depression, bed bound for 2-3 weeks. During those weeks I had to be at home to care for my Mum, and Rosa, going off to my night shifts in between with barely any sleep. A year on from that when we thought the fight was over, we had to battle for NHS Healthcare Funding (CHC). A battle I recently won, however it took over a year of stress to do so.
I want to close the gap between services and sufferers of degenerative neurological conditions. I want to raise awareness in every way so that sufferers don’t feel alone anymore. I want appropriate assessments for those with complex conditions, in particular, Huntington’s Disease. Families across the county are being failed by antique ways of assessing that don’t fit this disease. It is time that care was truly patient centred and not ‘one size fits all’.
I’ve been a qualified paramedic since 2011, and worked in the care sector for the last 11 years. Prior to that I had volunteered at a day centre for disabled people for several years. I have a lot of experience and I want to combine that with my personal circumstance to make a difference.
I have been fortunate enough to make an amazing friend, Catrin, my partner in crime. Together we will be running a series of projects, big and small, to make a difference.
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