Katie Skene Multiple Sclerosis Interview A gathering of Australia's peak Neurological organisations has resolved to launch a campaign to ensure people living with progressive neurological diseases are not left out of the proposed National Disability Insurance Scheme (NDIS).
Known as Neurological Alliance Australia (NAA), the group represents Australians living with conditions like multiple sclerosis (MS), Parkinsons disease, motor neurone disease (MND), Muscular Dystrophy and Alzheimer's disease
This follows a summit held in Melbourne which focused on what needs to be done to make the NDIS work for people living with these incurable progressive neurological and neuromuscular diseases.
NAA spokesperson Carol Birks said the introduction of the NDIS presents a once-in-a-generation opportunity that shouldn't be wasted.
"The NDIS has the potential to transform the lives of people living with neurodegenerative diseases whose needs will change throughout their lifetime - we need to get the scheme right." Ms Birks said.
"These diseases are unpredictable and progressive. The government must ensure that people with progressive neurological and neuromuscular conditions are eligible to NDIS services from their diagnosis and can access regular reviews based on their needs throughout their lifetimes."
In addition to this, Ms Birks said the meeting discussed the NDIS as a chance to get the disability, health and aged care sectors working better together, as people with these diseases regularly need to access care from all three sectors.
"People living with progressive disabilities around the country are being let down by a system where Government programs don't work together.
"People with disabilities are facing family breakdown and diminished health and independence all because the different sectors don't sing from the same song sheet."
The NAA has resolved the campaign to influence government to focus on the following:
1. Eligibility starting at diagnosis using specialist assessment and quality assessment tools.
2. Ongoing reviews for individuals throughout their disease course.
The NAA represents the following organisations:
Friedreich Ataxia Research Association Australasia
Huntington's Disease Australia
Muscular Dystrophy Foundation Australia
Multiple Sclerosis Australia
Spinal Muscular Atrophy Australia
Interview with Katie SkeneKatie was just 19 and in the second year of a Bachelor of Early Childhood degree at Melbourne University, when she was diagnosed with multiple sclerosis.
Despite the shock and devastation of her diagnosis, Katie graduated, married and began a professional career in early childhood care.
But significant deterioration in her health saw Katie's marriage crumble and her career come to an early end when she was just 24.
Over the next few years, further exacerbation of her MS together with a lack of suitable accommodation and individual support funding for her to return home saw Katie admitted to a nursing home when she was just 31 years old.
With most residents suffering from dementia and unable to converse with her, Katie says the 15 months she resided in the nursing home were the darkest of her life. Now 35 and as a result of the advocacy and effort of the Young People In Nursing Homes Alliance and MS Australia, Katie is living in the community with 9 other young people and, despite the debilitation of her MS, loving life once again.
Question: Can you talk about how you initially were diagnosed with Multiple Sclerosis?
Katie Skene: I was initially diagnosed when I was 19. When I was 18, I was in my second year of Bachelor of Early Childhood and I had my first incident which is when I lost sensation in my hands and I used that as an excuse for locking my keys in my car (because we've always got to have some excuse); I dropped my keys as I was getting out of the car but I still had the sensation that the keys were in my hands. I had difficulties with holding a pen ect.
Question: How long did it take to diagnose and what test confirmed your MS?
Katie Skene: I went to a GP who sent me to a Neurologist and they said that you needed to have two episodes of MS before you were diagnosed and I felt as if he had said "there is nothing wrong with you".
About six to twelve months later my eyesight started to play up and that's when I had an MRI and I was diagnosed with MS.
Question: How did you initially react to the diagnoses?
Katie Skene: I didn't know what MS was, all I knew about was the read-a-thon because I had done that as a kid. I thought MS was something that old people got and I was diagnosed at 19 when I was studying to become a Kinder teacher.
I went into denial for a good three to five years - I had my bean bag setup and I was comfortable in denial. It wasn't for at least five years that I went to a newly diagnosed MS group which is when I first found out what MS was.
I still completed my study and went onto teach, I had to give up teaching at 24 years of age because the discrimination got way too bad.
Question: What types of symptoms were you experience from MS at 24?
Katie Skene: My legs were giving way and I had to start using a walking stick and fatigue is a very big issue with MS and I was getting too tired. I started using the walking stick, when I was teaching and that is when the discrimination got way out of control because I was sacked because 'I could fall on a child'. When I was fighting discrimination, it became too hard and I decided to give up teaching.
Whether you call it stubborn or determined I wasn't going to sit around and do nothing, so I went back to school to do my Masters in Education.
I was 31 years old when I got really sick with a UTI because a UTI is people with MS' worst nightmare.
Question: How does MS affect you on a daily basis?
Katie Skene: Now, I am in a wheelchair but I am so blessed because basically that's my main symptom. I work with a Physio once a week and the other day I took 115 steps because as a Hawthorn supporter I was determined to walk as many steps as Hawthorn had beaten North Melbourne by, in points.
Question: What type of therapy and treatment do you have?
Katie Skene: I'm taking a new drug called Gilenya and its amazing. I am in a wheelchair, but I have begun walking, small steps, with my frame at Physio. Touch wood but I haven't been in hospital for 12 months and my quality of life is awesome. MS can affect you in so many different ways.
Some of the treatment was injections into tissue which is how I started; I was injecting myself every third day but the treatment options are progressing now with new drugs because injecting yourself is no fun. We can see there is progress being made for MS but it's not being made anywhere near fast enough. I believe there will be a cure for MS just not in my lifetime; I like to think that we're fighting for the next generation. I do want to be a little bit selfish and say 'what about our generation'?
Question: What advice would you give someone who has recently been diagnosed with MS?
Katie Skene: My motto with MS has always been that I can't control the MS but it won't break my spirit. We can control our spirit and headspace because the mind is stronger than the body. Do not let MS break your spirit and don't look at what you can't do, look at what you can do.
I don't want people to feel sorry for me; I have a great quality of life now and shi*t happens to everybody!
Question: Why did you decide to be a case study for the National Disability Insurance Scheme?
Katie Skene: I want to get the message across because at 31 I had been in hospital for a couple of months and I was put in the 'too hard basket'. If the health sectors had talked to each other they may have known what to do with me and it may have been easier because I wasn't sick enough to be in a hospital, I wasn't able to be cared for at home and I wasn't given an option and I was put into a nursing home. If the Young People In Nursing Homes Alliance had been around then, I may have not needed to spend time in the nursing home and I would have the individual support package, I have now.
Having young people in Nursing Homes is a disgrace which is why the health sectors need to be communicating to provide options and awareness.
I live in an SSA now which is brilliant; it's a residential care community for people with MS with two different houses, side-by-side, with five people in each house. We're actually asked what we want for dinner and we eat at normal time, not at 4:30pm!
My quality of life is amazing and I am studying again, I am doing an Arts degree in writing.
Interview by Brooke Hunter