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, with no choice but to carry on. 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. The anticipatory grief is so hard (visit the blog section where I talk about this!)
We were failed on a large scale in 2016/2017 when we tried to get help, which resulted in my Dad having a period of exhaustion and depression, bed bound for 2-3 weeks. This was completely unlike him, but he was pushed to complete carer burnout. 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 won, however it took over a year of stress to do so and feeling like a lawyer leading a court case. How can this be the case when someone has something so awful as Huntington’s disease?
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’. It is time that neurology care was as incredible as cancer care in the UK!
I’ve been a qualified paramedic since 2011, after starting my course in 2009. I’ve worked in the care sector since I was 18. Prior to that I had volunteered at a day centre for disabled people for several years after doing work experience at 15 years old. 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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