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

Of course you don't and I'm not saying that. I'm saying research first, get advice from knowledgable people, then start a campaign. Campaigns like this need a clear, steady start, not a load of miss steps and deleted posts.

Ah yes I agree with this. As the petition isn't live yet there's time to research and work out next steps. No harm in not tweeting anymore and get some advice etc

Thank you @Cactuslove

I am learning really fast. Nothing I could experience on Twitter is worse than watching my son slowing fade away.

He is suffering because of where we live. Life was never going to be easy but he used to love his special school and junk modelling.

Now he sits in his room.

I want him to live and be part of this world. He is so loved.

Op. I honestly support your campaign but wouldn't it be better to pause and wait until you've a strategy designed?

Even your opening post here - you don't want 100,000 friends for your son do you?

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

www.whtimes.co.uk/news/23109073.childrens-mental-health-referrals-41-closed-care/

Your statement is inaccurate?

Got it - it had slid to the bottom.

I worked for 20 years in communications so I can run a campaign. Admittedly this one is not very planned because of the urgency to draw attention to the situation.

I am old school though so a social media duff, but am learning everything I can from these posts.

Hi op. I'll definitely sign petition when you post the link.

In 2019 my dd hit a serious mental health crisis. I couldn't access any mental health support for her. I got a referral through our gp but was refused by camhs on the basis that she's autistic and in their exact words " she's autistic so it's normal for her to be anxious" WTF! She was self harming, swinging from not eating at all to purging so much she was in pain and vomiting, she pulled her hair out, her teeth, couldn't sleep and wasn't attending school.

It took my dd trying to take her life to finally be offered any help. She was 12.

Even once it was accepted she needed help we still had to fight for it. Took ten months. We poured everything we had into private therapy in the end. Lost everything to get her better.

She's doing ok now. Back at school and coping ok. Still has her moments but she knows how to deal with it better and can communicate her distress better.

Best of luck I'll keep coming back to see how it's going x

If a referral is closed before the child has been seen, then that child has been denied access to mental health care.

The figures are correct.

I think the advice to plan this out properly before you put anything else out there is really good - and I’m not sure I’d use Twitter as it’s primary home right now, given everything that is happening there. I’ve used it professionally and personally didn’t the beginning and I hope it pulls through, but right now, I wouldn’t bank on it.

I’m sorry that your son is being failed. I really hope he can access some help soon.

This was in the linked article:

Doctor Jane Halpin, chief executive of the Hertfordshire and West Essex Integrated Care Board (ICB), which commissions our health services, said: “The Children’s Commissioner’s figures for our area include children whose cases have been marked as ‘closed’ because they did not require specialist treatment, chose not to have further treatment, or were referred to other services for treatment.

I'm not saying that mental health services aren't awful. I know they are from personal experience, but not all children would have just been abandoned.

I definitely do have a plan. I know that starting a petition to get this debated is the only way to bring the situation to the attention of people in power.

I need 100,000 people to sign it to achieve that goal. It is a serious issue and the parents I know in Herts who are watching their child suffer agree we need better access to child MH services.

I have to start somewhere and there is no more time left to wait patiently for help to arrive.

This is important OP. Your figures need to be accurate.

My son's referral to CAHMS was closed before he was ever seen... because from the report they were give on him, they referred him onto 2 other services and he received the help he needed.

@knittingaddict Jane Halpin's comments were debunked in the newspaper article because all the other health authorities had included the same figures.

She was either confused or lying.

@helpingAsa it's not 41% of children in Hertfordshire denied access to MH services. It's 41% of children who need access denied. There's a difference.

Or 41% of those who are referred.

It's not 41% of children in Hertfordshire who are denied access to MH services.

This is what I meant about reseach. That article is a starting point, but you really need to gather some information yourself and look behind the headlines. It is vital to get your facts straight first.

You can't say it was debunked as that's not entirely accurate. This was also said in the article:

Dr Halpin continued: "Other ICB areas may have different processes and a smaller range of service providers – so children will not follow the same referral processes or access treatments in the same ways in different areas."

It's a fair point. It may be right or wrong, but do you even know for sure?

Ok, well I'm happy with the progress of my campaign.

I have 35 followers which I didn't have before I started this thread.

Most campaigns fail but that is not a reason not to try.

And time is a luxury Asa and I don't have.

I'm signing off this thread but I will be back if the petition gets approved with a link.

Heartfelt thanks to all those who have given advice and followed me.

I never said the figures were inaccurate. I said your statement was inaccurate. Which it is.

If you're going to present statements as facts they need to be correctly phrased.

What kind of medication are you trying to access?

I am learning really fast

You really are! I admire you for the way you've listened to everyone and made changes so quickly!

You'll still get some people posting here who've only read your OP and will come on and be a bit snippy because they haven't read your updates. Just ignore them and carry on listening to the people who have great advice and really want to help. Good luck!

I have an autistic child. Medication is not suitable for everyone. She wasn't medicated until 15 because the risks outweighed the benefits and even when she went on meds it was just for anxiety, it didn't help for her other conditions. What did help was she had aba therapy from young

I'm in Herts also with a disabled child. Services are appalling. My son was due to start medication in the summer to settle in before return to school. We are still waiting. I've just had a medication review appointment through for February. There is no medication to review 😣. Don't get me started on CAMHS. I'll gladly sign!

Also OP, have you accessed Space and ADD-Vance in Herts? Excellent organisations with brilliant supportive Facebook pages.

Jane Halpin is saying that the data are recorded differently in different places so the 41% figure isn’t comparable to other places. But even if it is a fair comparison, the %unsuccessful referrals could be higher in Herts for many reasons e.g. because the GPs make more inappropriate referrals or pushier parents or fewer or narrower range of services etc. I don’t know where the truth lies but I think you should focus on what your son needs and campaign for that. The statistic is a red herring.