NHS funding for treatment

[AlwaysQuestioningReality]

Hi everyone,

my daughter is 17 and has been under CAMHS for anorexia for 2 years.

She is autistic, suffers from anxiety and debilitating OCD.

she has been hospitalised twice - last time a year ago.

we were told at this time that there is no residential treatment suitable for her because of the autism.

she came home where I have been struggling to care for her.

we have an hour of CAMHs input a week which obviously is never going to aid recovery.

we have found a clinic abroad willing to take her but don’t have insurance.

has anyone had experience of securing funding from the nhs to pay for something similar given they have openly stated that options for her treatment don’t exist.

many thanks

Are you/the treatment team aware of the PEACE pathway (Pathway for Eating disorders and Autism developed from Clinical Experience)? peacepathway.org/

We're in a similar position (not an ED though) and submitted an Individual Funding Request (IFR) for private treatment that isn't available on the NHS because the NHS don't treat it at all. It got turned down.

You have to demonstrate that your DC is an exceptional situation, not simply that the treatment will work and improve your DC's life. I really have no idea what would constitute that.

My DD is bedbound and has the poorest quality of life you can imagine. She self harms and bites herself and pulls out her hair with boredom. But the CCG decided it would be absolutely fine to leave her in that state indefinitely with no treatment. Bastards!

So it's a hard thing to do. To ask for help from the NHS and for them to turn you down, because what you hear is them telling you your DC doesn't matter at all.

Fwiw I'd beg borrow and steal the money to pay for it yourself.

Thank you both for your comments.

I will look at Peace pathway.

bonnesvacances I am so sorry to hear about your daughter. Unfortunately what once would have shocked me just doesn’t anymore. Everything just appears to be broken. Should people really have to be fighting for help when they’re obviously exhausted from their predicament. 😔

it Was an IFR to the CCG I was thinking of but wouldn’t know where to begin and as I suspected May not be worth the effort.

I think we’re starting with the borrow. Likely progress to beg then steal.

I wish you a rest and some progress.

I’m so sorry there is no help