My disabled son needs 100,000 people

[helpingAsa]

Please help me find 100,000 friends for my disabled child

I registered a Government petition yesterday, to stop 41% of children in Hertfordshire being denied mental health services.

Hertfordshire has the highest referral rejection rate for childrens’ mental health services in England. 41% of Hertfordshire children are denied mental health support compared to 8% in Liverpool, Leeds and East Sussex.

My disabled 12 year old son is one of those left to suffer.

Asa has Autism and a learning disability (low IQ). He desperately needs medication. We have been asking for four years. He is in crisis.

He is struggling to eat, drink and sleep and cannot leave the house. He has been out of his special school for two weeks because he cannot eat, drink or use the toilet there due to his extreme germ phobia.

I have called, emailed and begged child mental health services locally. Asa is crying at mealtimes because he can’t eat for fear of exposing himself to germs. He is loosing weight.

While we wait for our petition application, I have set up a Twitter account @helpingAsa

Please help my child - follow Asa’s Twitter account @helpingAsa

Thanks and love,
Asa and Mum

Just some thoughts on this. Camhs are ridiculously stretched but the rejected referrals rates are misleading. I screened four referrals yesterday and rejected three of them. That would look like I rejected 75% of referrals but they were all for autism assessments which, as autism is not a mental illness, we do not accept these referrals in my area. Other referrals I have rejected have been where they clearly don't meet criteria or there are other services that are more appropriate eg specialist bereavement supports, low level anxiety management which can be done through other agencies, etc.

We don't want to be pushing for all referrals to be accepted because that just isn't sustainable and it means that the children who need to be seen are stuck in even longer waiting lists.

It's really upsetting that your son isn't being seen and I hope you are able to make progress with this but I imagine the majority of the 41% are not like your son.

Why can’t the GP prescribe anti-anxiety medication? Is it because he is a child?

When you have a link I'll sign.

I am sorry for your situation, and of course there should be appropriate services to support children in these circumstances. But with the best will in the world, what do you think the government can do? The criteria for petitions to the UK government include "Petitions must be about something that the Government or the House of Commons is directly responsible for." - neither the government nor the House of Commons is directly responsible for mental health services in Hertfordshire. So you are going to put a lot of energy into an activity that will not be debated. And even if it were debated (and I am certain it won't be) the "people in power" don't care really - they have been underfunding public services for over a decade. There's no secret that local services are now massively inadequate to the task.

You are far more likely to get a response if you look to your local newspapers and media. They often prioritise human interest stories especially where they are about local people being let down by services. You would be best focussing on your child and your child alone. Whilst it is awful that children (or adults) go without the help and support the need, highlighting the broad inadequacy of a service gets you lost in the big picture - the only picture you can afford to care about is the one your child is in. That may sound selfish, but I'm afraid that selfish works more often than not in these circumstances.

I agree with Quveas post. This is where your energy is best placed.

Have you tried PALS or your MP ?

Im happy to sign the petition, but don’t have high hopes anything would come of it. Trying to think of other ways for you to get help with your DS.

If you have a bit of money, a private consultation with a psychiatrist who then prescribes anti-anxiety medication on the NHS by sending a letter to your GP might be a quick way to get your DS help for only £100-£200 or so?

I’ve followed you and retweeted. You need to hashtag relevant words and phrases and tag relevant organisations/people in - that’s the beauty of Twitter - the inclusion of those that would really rather not be in a conversation they ought to be having! Who is the Health Secretary this week? Include them. Glad you made the adjustments suggested upthread; Twitter is a cruel place and it’s very very easy to be misunderstood @helpingAsa

I’ve worked in the adult equivalent of CAMHS and it is very tough knowing that you’re not able to offer adequate and timely support when that’s what you’ve set out to do. Lots of people are helped but too many are a victim of an under-funded system where so often people are discharged to satisfy the “recovery” targets so that the people with the purse strings will provide the ongoing funding. It becomes about fitting the people’s needs to the system, not fitting the system to peoples needs iyswim. That’s what happens when things are not adequately funded. It’s heartbreaking to know so many are really struggling to access the right help.

Exactly. I see the referrals for CAMHS in my job and we probably "reject" a similar amount as Herts due to not requiring specialist mental health treatment. But the amount "rejected" without signposting or advice given is tiny.

That's not to say CAMHS makes the right decisions all the time but I think "41% of children in Herts" is misleading

Well done @helpingAsa for starting this. I have followed and retweeted.