Save NHS Nascot Lawn

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 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.
Lennon has recently been discharged from Great Ormond St after he finally underwent surgery for an ileostomy after his colon completely failed and he become dangerously unwell from malnourishment. My continuing care package does not meet Lennon’s 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 37pence 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 Β£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 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? 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, and an worried about my families future.

We started a campaign to Save NHS Nascot Lawn 6 weeks ago, and so far we have had a lot of media coverage, and attended a lot of meetings! The only step forward we have made so far is getting Hertfordshire County Council to agree to fund Nascot Lawn until all 77 children have been reassessed by health and social care and given an alternative provision.

But we are desperate for a solution to this – we need Nascot Lawn to stay open indefinitely. Not just for our children, but the children and families who will need it in the future.
It is simply not fair on our children – who are some of 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.

We have a Facebook page
https://m.facebook.com/savenhsnascotlawnchildrensrespiteservices/

A twitter account
@SaveNHSNascot

And a petition with currently over 14,000 signatures
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

Previous blog post – MDT

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