CAMHS Frustration: My Experience

As most parents of autistic children know, a diagnosis is not a magic bullet. You are not suddenly entitled to support and help. There is no assurance that everything will be ok. This is just the start of the fight; and plenty of frustration along the way. Today I want to talk about my latest experience with CAMHS and why I feel that everyone involved in my child’s care thinks that his issues are someone else’s responsibility.

At the moment, there are three main avenues for support for my child: School, Paediatrician and CAMHS. Each one loves to push the responsibility onto the other, creating a triangle of frustration. Let’s consider each one in turn.

The Paediatrician

The Paediatrician is an elusive creature and getting an appointment to see her is akin to one of those 1980’s fantasy movies involving some sort of impossible quest. She is always out on call, so I leave messages with her secretary, never to be returned.

In the rare instance that I did manage to speak to her, she promised me an appointment on 7th September. This never materialised, as she is a very busy lady. However, she did let me know that I’d be much better off speaking to CAMHS as they’d be able to deal with my enquiry quicker. At this point in time I’m still waiting for the Paediatrician to get back to me with an appointment.

This brings us to….

CAMHS

Anyone who has ever tried to get an appointment with CAMHS will tell you that it’s a waiting game. We did manage to get an initial assessment, only to be told that we’d be seen in 8-9 weeks. It is now 9 weeks and CAMHS have told us that there’s no chance of us being seen any time soon because they are very busy.

However, they did chat with me on the phone and made it clear that they don’t deal with autism issues and if my child’s problems were because of his autism then they wouldn’t see him. They also told me that I should speak to the PAEDIATRICIAN as she could prescribe something to help him, but also to speak to the SCHOOL as most of his issues were due to school anxiety.

So let’s call the….

School

School were very lovely and friendly. They noted down my concerns. They told be to call CAMHS immediately to get him put higher on the list and also to speak to the PAEDIATRICIAN. I guess that brings me full circle then.

As you can see, each department tries to direct the frustrated parent to another department, whilst denying that they are doing exactly that. Heaven forbid that the departments should actually try talking to each other and sharing information. I’m not at all surprised that children slip through the net and end up harming themselves. The system is completely broken and not fit for purpose.

NICE Guideline 170

I found a fantastic article at It Must Be Mum explaining that of CAMHS refuse to treat a child with autism, they are going against NICE guidelines. NICE guideline 170 states that:

“The following recommendations have been identified as priorities for implementation.  Access to health and social care services:

Ensure that all children and young people with autism have full access to health and social care services, including mental health services, regardless of their intellectual ability or any coexisting diagnosis.

Surely if CAMHS refuse to see a child based on their autism, parents could try quoting this to access help.

I’d love to know about your experiences with CAMHS and the school system. Please share your thoughts in the comments section below.

Young Minds

Today I wanted to write about an organisation called Young Minds that is doing a very important work. This is not a sponsored post; I’ve actually used their helpline myself and wanted to share with others how helpful it’s been.

Young Minds is a charity that focuses on the mental health of young people. They want all young people to feel supported and empowered, whatever their mental health issues. They listen without judgement and try to offer help and solutions to families affected by all types of mental health problems. This is especially important for the most vulnerable and excluded members of society. The charity also seeks to influence mental health legislation for better outcomes for patients.

Young Minds Parent Helpline

The charity runs a dedicated phone helpline for parents. The line is free to call and is available Monday to Friday 9:30-4. Outside of these times, parents can leave a message via the online contact form and the charity will be in touch as soon as possible.

I’ve used the helpline myself and found the experience incredibly positive. I had concerns about my child and I wasn’t really sure where to go for advice. I called the number and the lady that answered my call was very calming and reassuring. She listened to everything I said and noted it down carefully. I already felt a lot calmer by the end of the call. It felt like a burden shared.

The call handler explained that I would be contacted within a few days by a mental healthcare professional. I did not have to wait long. The following day I received a call from a warm and friendly man who discussed my concerns at length. The call lasted just under an hour and he was able to offer me a lot of practical advice. By the end of the call I had a clear plan in mind of how to get help for my child and things to discuss with the GP. Incidentally, the chat also drew my attention to a condition called PDA, which is a form of autism that I’ll be discussing in a future blog post.

Crisis Line for Young People

As well as supporting parents, Young Minds offers valuable support to young people themselves. Their newest innovation is a Crisis Text Line which they can access during a mental health crisis. All they have to do is text YM to 85258 and Young Minds will reply immediately. The service is free and available 24/7.

I think that a text service like this is invaluable, because it gives support to the most vulnerable members of society and is a lot less intimidating than speaking to someone.

Conclusion

Young Minds are an amazing organisation doing an important job. There are so many young people suffering with mental health issues today. It is good to know that the support is out there and accessible. It’s my hope that this blogpost can help at least one person or family by signposting them in the right direction.

Visit the Young Minds Website for more information or to donate.