Earlier this month, I was incredibly saddened by the story of Jade Norton, a 10 year old girl from Blackpool. Jade, who had Rett Syndrome, a rare disorder, died tragically due to serious faults in her supposedly specialist bed.
Yes, Jade's untimely death was extremely saddening. It was not, however, surprising.
For most people, it is hard to even imagine the difficulties facing disabled children and their families. But for many children's nurses this is a significant part of working life. We see the hardships these families face, with children often unable to walk, talk or participate in the usual elements of daily life most of us take for granted.
These families should have access to any and all help or support that could ease their situation. But for far too many this simply isn't the case.
One in every three children with disabilities is living without the specialist equipment they need. This equates to 330,000 disabled children who are living at risk of increased pain and difficulty, further deterioration and premature death. Jade Norton was just one of thousands of children who pass away each year amid problems with their equipment.
You don't have to work with disabled children to realise what a shameful situation this is - particularly within one of the wealthiest countries in the world.
Families can rarely afford the equipment themselves - 40% of families with disabled children live in poverty due to the difficulties they are facing. Yet, according to policy, they shouldn't have to. In accordance with the Children's Act (1989) CCG's and Local Authorities have a statutory obligation to make provision for equipment prescribed to disabled children. So why is this not happening?
As with so many health issues, funding problems lie at its heart: in many cases Councils either don't have the money or have distributed it elsewhere. A lack of organisation is exacerbating the problem, with confusion over whether funding for equipment is the responsibility of health or social care services. With integration progressing at a snail's pace and NHS funds diminishing, we seem to falling deeper into the hole rather than climbing out of it.
As we have seen, the consequences can be catastrophic. From disabled children sleeping on mattresses on the floor to those being unable to communicate with their families without specialist speech equipment, it's simply unacceptable.
The way the situation currently stands, charities are the only hope for families living without the equipment they need, with numerous organisations making huge contributions to families across the UK. Many councils are indeed reliant on such support.
But we cannot rely on charities: this needs to be a top priority for our Government and we need to find ways of working together to address this issue. It's no good having policy in place if it is not put into practice. The system needs to be overhauled and fast, if we are to provide the care and support that all disabled children and their families deserve.