Nascot Lawn is a respite centre in Watford and currently provides respite to the most medically complex children in Hertfordshire.
As parents we have been informed that Herts 3 valleys CCG have ceased their funding, with Nascot Lawn set to close on 31st October 2017.
As you can imagine we are devastated. There is no other option for overnight/weekend respite for our Children in county, due to the complexity of care they require.
This decision will be the breaking point for most families who are already hanging on by a short thread - including my own.
My son has recently been discharged from Great Ormond St after major bowel surgery and is requiring 24 hour care around the clock.
My continuing care package does not meet my sons ever growing needs and we were relying on our allocated nights at Nascot Lawn to enable Lennon to stay at home with us.
Without the support of Nascot Lawn we may be forced to put Lennon into care as we will not be able cope.
As a Carer providing 24 hour high dependency, round the clock care to my son I get paid 37 pence per hour.
Most nights are waking nights, or spent getting up every other hour.
I have been told If we put lennon into care it would cost on average of £750 per day! (Mainly because his medical care is so complex)
I'm a nurse for 24 hours a day 7 days a week, would that be allowed in any hospital??!
Even when my my son is in hospital I am still providing him with all the medical care he needs.
I don't get a break as I'm not allowed to leave him alone on the ward in the care of the nursing team as he is too complex.
Yet I have no nursing or medical degree or training.
I am responsible for a severely Autistic child who cannot walk, self harms, has no sense of danger and understands nothing.
A gastrostomy, a jejunostomy, an ileostomy, a 24 hour feed, making up extra fluids, a ton of medications including controlled drugs and injections, strict fluid input and output measuring and charting, seizure management, restraining and suctioning, and deciding what is a medical emergency and what isn't.
Ordering in and managing supplies from 6 different companies. I have to remember appointments, deal with professionals, fill out untold amount of forms, attend meetings.
I also have to be my child's eyes, ears and communication aid. He communicates through me.
I have to be on the top of my game always. I cannot take my eye of the ball ever, not for one second.
How can I do that safely with no overnight respite care out of the house? No weekends off.
Tiredness causes accidents, sometimes fatal accidents.
I have 2 other children who also deserve my time, and to have weekends where they get to live a 'normal' life - go to the cinema, bowling, swimming and out for dinner.
All of which we cannot do with Lennon.
We cannot take Lennon on holiday - he sleeps in a 6ft high padded cot as he has no sense of danger and throws himself head first out of a normal bed.
So we used our Nascot Lawn nights to take our other children on much needed holidays.
Without Nascot Lawn they will go with out holidays - how do I explain all of this to them?!
Our house is effectively a high dependency unit and in all honesty I don't think our family will be able to cope without Nascot Lawn, it puts a huge strain on the whole family. Especially my relationship with my partner.
Without Nascot Lawn, we could be forced to put Lennon into care.
Please help us. We are desperate for a solution to this.
It is simply not fair on our children - who are the most needy and deserving children in the county.
Or on the Parents, who like us have given up their whole lives (careers, jobs, friends, holidays) to care for their children.
3 weeks ago we started to campaign to Save NHS Nascot Lawn.
We have news reports on BBC London news, ITV London news and channel 5 news.
BBC 3 counties radio have featured us in a number of their shows, and I have recently done an interview for Heart radio.
Please help us fight for Nascot Lawn, our children need us.