I’ve always been against medicating Charlie, it was a personal decision and I thought it best, given some family history that prescription drugs was off the table. It’s a decision that I had stuck to until a few weeks ago. I have done every parenting course, attended every appointment, worked hard at fighting the right provision, engaged in all the therapies, promoted all the therapies and where are we? Still nowhere after all these years. Charlie still hasn’t progressed and other than speech development and language development I feel as though we are still where we were 5 years ago. Anxiety rules his life, and undermines everything I do. Maybe, medication will make a difference.

Here I was believing that I could just go to the GP and that would be it. Turns out, that was not it! A few weeks ago I made an appointment with a GP, she called me back as it was in the midst of lockdown 2.0, and the surgery was only doing telephone consultations. This is a blessing as Charlie does not cope well with any medical appointment at all. Said she would have to look into the case, and get back to me .

I waited a week until the 19th November, and rang the GP surgery back, went through the whole process once again explaining our difficulties and how I feel medication will benefit Charlie. The Doctor wanted to send me on a parenting course and point me in the direction of an autism website. Firstly, the course was the course with Action For Children that I completed in October, that stated they were a short term intervention and couldn’t help Charlie as he has more complex needs to what they can offer and needs long term support - I know!!! This is what I’m saying. And the website, was for ABA - Applied Behaviour Analysis, if you haven’t come across this before, it is a “treatment” from America. They use it a lot over there and believe it is successful. We completed a 10 week course - it didn’t work. Surprise, surprise.

Life then got a little busy, and we struggle on. I don’t hear anything at all from anywhere. Then last week around the 3rd December (it had been 14 days) I contacted the community paediatrician’s secretary to chase up. She emailed me back (lovely woman, always willing to support) saying that yes the GP had sent a referral off it has gone to SPOA, single point of access - where referrals for children go to, it has been accepted and a consultant will contact us shortly.

In the meantime I have been on Facebook and tried to figure out what this means and how long the waiting list is, how long are we looking to wait for this consultant? A bit of background, we last had referrals go to SPOA in 2017, back then after around 6 weeks it came back as school nurse could meet need - the issue was behaviour in and out of school, school exclusions (had no idea on any diagnosis, SEN, neurological pathway at this point) and school refusal, how on earth was the school nurse going to help?! I begged for another referral and the school raised an Early Help Assessment and we got a family support worker. This family support worker was trained in autism and immediately put us on the ASD pathway referral and SPOA accepted it. We then had to wait 12 months for our first appointment!! In that time, you can guess - Charlie was permanently excluded from Reception at the age of 5!!!

So….. when I hear the words “SPOA referral” I don’t leap for joy, I’m not relieved I know that there is probably a lengthy waiting list. So, after getting the information back from the community paeds, I ring back the Dr’s surgery again, this is Friday, the care coordinator informs me that once a referral goes off to SPOA then that’s it, they don’t get anymore updates. If it’s rejected or accepted I will get a letter and a copy would be sent to them. I will just have to wait - it’s been weeks. And to make matters worse I have been informed that the community paeds can not prescribe anxiety meds, the school even though they have a clinical psychologist can not prescribe anxiety meds and the GP can not prescribe, this leaves only one service that can - the Children and Adolescent Mental Health Service, or better known as CAMHS.

Roll on today and I get a text message asking to ring the GP surgery and speak to a DR. Ok, I ring, the Dr will ring me back, Charlie is horse riding today - I am hoping and praying that I don’t get that phone call while he’s on a horse. I get the phone call - the Dr, the same one I spoke to on the phone on the 12th November confirms to me everything I have already found out myself. Tells me nothing new, and here I am hoping that it was good news! So I ask her

“when did I first make the appointment” and she answers “12th November” so, a little shy of a month ago? yes, she replies. So I say : It’s not good enough though is it? “why not? we’ve sent the referral, like you’ve asked, it’s not been a month yet” … well actually I say “I raised these concerns with a paediatrician, back in April, but we were still signed off and had to wait 6 months to go on a parenting course, that didn’t work, so it’s been longer than a month” her reply “if you are not satisfied with the service you have received, you have to go back to the service, and make a complaint with them, not us. We have done as you have asked” me: “but how could I of known? how could I of possibly known that after discharge we would have to wait 6 months for any intervention, that intervention wouldn’t be right, that intervention wasn’t long enough? How would I of known?” her response: “ if you weren’t happy to be discharged then you should of requested not to be discharged, because we can’t go back to April and change it, now you are back on the referral list for SPOA” helpful! Real bloody helpful. I am not a medical expert and I could not of foreseen that we would end back in this situation 8 months later. So I replied with “But they should of known, and it shouldn’t of taken this long to get support, we have no support, no one is supporting us, I don’t think I have another 12 months in me to wait again for a referral” once again I was met by “make a complaint to the service”.

I find this shocking real shocking. That the possibility is we could very well have to wait another 12 months for another referral and somehow that is my fault? That I should of insisted not to be discharged, because of course I am a medical expert aren’t I.

Obviously the good Dr must of realised the error that this is not down to me, this is not my fault so I received the following text message “Further to our conversation, I will be writing to SPOA to expedite the referral, I trust this meets your approval” Well, no not really, back in April someone telling me we would have to wait 6 months for an intervention that wasn’t going to work and not to discharge would of been far better!!! And no mention of CAMHS so I can imagine I will flip if after all this we are referred to a service that can’t prescribe. But of course, I have found the email address for SPOA (they aren’t taking calls or voicemails) and I have already contacted them. Not quite sure if I want to lodge a complaint against the surgery yet. It is a battle I could do without.

Will update with more news when I can.

Georgina x