Help save Ariella's crucial care package and others around the uk
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What we are hoping to do with this petition is change the way the care package is approached and how much funding is put into it. Families are being made to suffer who need it the most around the uk and something needs to change more funding must be put into the health care! And more support must be offered to families who care for complex medical needs members! We cannot be denied our basic right to sleep!
We are not only doing this for ourselves and our situation but we are also doing this for other families who are forced to struggle daily with their basic right to sleep being taken away, could you imagine not being able to sleep for a certain period of time in order to keep your child safe and alive, this has a serious impact on these families health. We want to make a stand and show health panels and the government that this funding is essential and cannot be compromised.
Something needs to change for families who desperately need support, more funding instead of cuts need to be given in places where people need it the most. It's time to make a stand. More protection must be offered to families who are awarded care packages, our care package was cut without any assessment made, and almost cut in half with only a months notice.
This is our story
We are petitioning to save Ariella's crucial care package.
continuing health team and others across the country are cutting crucial care hours that are putting vulnerable children's lives at risk and the health and well being of the families. Families are being denied their basic right to sleep in order to keep their vulnerable children safe and to keep on top of their complex medical health needs and requirements.
My daughter Ariella was born on the 30th of may 2014, at 31weeks weighing 2lb 2oz and had to have a tracheostomy at two hours old. The conditions she was born with are congenital diaphragmatic hernia and nager syndrome, she spent 10 months in hospital from birth, and was only able to be discharged from hospital once the care package had been established in order to help us care for her high risk complex medical needs safely at home.
Ariella still has a tracheostomy with no plan in place to have it removed anytime in the near future, she is fully ventilated for humification over night and she is also gastrostomy fed periodically throughout the day and night. This means that there is a high risk of her becoming tangled with her tubes and potential removal of her tracheostomy and gastrostomy and possible strangulation and suffocation due to her being reliant on her tracheostomy. During the day Ariella's tracheostomy also requires a lot of care to ensure we maintain a safe airway for her.
The continuing care team put Ariella's care package to panel without informing us that they were doing so and therefore not giving us enough time to gather evidence and discuss with us regarding Ariella's care requirements. As a result of this Ariella's care package has been reduced from 7nights to 4nights, this means myself as her mum is now expected to spend 3 nights and 4 days continuously awake to meet Ariella's care requirements and keep her alive.
We are asking for your support to show that you are against this decision, and hopefully help other families across the country by making a stand.
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