My son George contracted meningitis at 11 months old. He was left brain damaged, with cerebral palsy, deaf, hydrocephalus, severe scoliosis, dislocated hips, epileptic, non-verbal and having to be peg fed by a gastrostomy peg – this peg is what keeps him alive. He requires 24/7 care. Sadly his life was turned upside down by a dreadful illness and through no fault of his own.
Despite his problems he’s a very happy boy who is constantly smiling and enjoys being around others, especially his teachers and class friends at Mount Joy School in Beaminster.
It’s a very stressful time in the mornings getting George ready for school as he has so many different medications and fully depends on his parents to get him ready. His morning involves being hoisted and wearing pads as he is incontinent. Some mornings things run smoothly other mornings things can become a little difficult.
George may have a seizure or his gastrostomy button may come out of his tummy. I am trained to treat both situations, on many occasions George’s button has come away right before transport has arrived, when this happens we have 20 minutes to put this button back in before the hole in his tummy closes over, if this does not happen George will find himself in Southampton hospital. When this happens just before the taxi arrives as it has on many occasions, the PA and driver has always been understanding and will wait for me to attach it so he can then get on the transport for school. If George had to go to a pick up point on mornings like this we would constantly be missing transport and we would then find ourselves having to explain to social care as to why our son has missed so much school.
I also have two other children who attended schools in Dorchester and I do not drive, so getting George to school in Beaminster is impossible as bus services are cut and the buses from Bridport to Beaminster do not carry wheelchairs. I found it very patronising reading the Dorset Echo, to see that you want to introduce independent living to children like mine by making them go to a nearest pick up point. I’ve explained how George sadly has no independence as this was ripped away from him aged 11 months by an illness, it clearly shows this proposal has been carried out by someone with no medical knowledge whatsoever. I then spoke to my son’s consultant who had many concerns and I know he’s written to Nick Jarman to state his concerns not just about my son’s situation but many other children’s situations. This shows the medical teams, teachers, parents and myself, have not been consulted at all and can be very damaging to everyone involved. The report in the Echo even states that Nick Jarman knows this as he’d be prepared for parents to take out legal action and expects judicial reviews from this outcome.
I do not understand why a council would be prepared to use tax payers money to fight parents through judicial reviews as this can cost a lot of money to everyone. Surly the best way to go about this is to vote this proposal down and work with parents, health professionals and teachers to find a better outcome in which can save money rather then causing a high level of anxiety to parents who are already struggling on a daily basis just to get their children to school. Parents like myself would love nothing more than to see our children be independent as possible and going off to school by themselves or even leading a normal life like other children, but sadly this is not to be. Why are they being punished for having medical conditions and disabilities? Please can we ask that the council officers and councillors be reasonable in their decision making of this issue.
We are setting up a demo for Wednesday morning (5th December 2018) at County Hall, Dorchester from 9.30am ahead of the meeting and vote at 10am