Save Nascot!

Nikki Lancaster - 19 Jun 17

As a Carer providing 24 hour high dependency, round the clock care to my son I get paid 37pence per hour. Most nights are waking nights, or spent getting up every other hour.
I have been told If we were to put my son 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 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.

So when I heard that NHS Nascot Lawn Children’s Services – my 10 year sons respite centre where he stays 3 nights a month has had its funding cut, and is subsequently closing on 31st October 2017 I was distraught.
There is no other similar provision in place in our county.
No Nascot Lawn means no more holidays for me and my 2 other children, no fun weekends doing activities that most families take for granted, like swimming, bowling and eating out. No more guaranteed sleep, no more full nights sleep for that matter! No more weekends of not being responsible for running a medical high dependency unit from my sons bedroom.

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 24hour 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? Tiredness causes accidents, sometimes fatal accidents.

Nascot Lawn is a home for home for Lennon. He loves his weekends there, it’s like a holiday for him! He doesn’t have much in his life – how is it fair for him to have this taken away?

I am truly not sure how my family will cope without Nascot Lawn and I can’t even explain to Lennon that he won’t be going back as he has no communication or understanding.

I need to get this decision turned around. Please help me by signing our Facebook petition. Thank you.

https://www.change.org/p/save-nhs-nascot-lawn-children-s-respite-services?recruiter=224336991&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition

Nikki Lancaster

Mummy to 3. Lennon, Isla and Florence. Campaigning to Save NHS Nascot Lawn children's respite and change perceptions on children's end of life care.

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