So, quick back story.
December 2015 Picklepot was officially diagnosed with ASD. Paediatrician refused to do ADHD assessment at that time as he said that all five year old children behaved the same way, despite evidence from Picklepot’s class teacher and school SENCO stating that Picklepot was more extreme than his peers and indications were that ADHD was a contributing factor. Paediatrician stated that he would have Picklepot back for review appointment in a year to do ADHD assessment.
January 2017 I contacted the Children’s Development Centre where the paediatrician was based, as I had not received an appointment letter for ADHD assessment in December 2016 as the paediatrician had advised we would. I was informed that the paediatrician had signed Picklepot out of their care at Easter 2016 before he had resigned from his position there. In order to get an ADHD assessment for Picklepot we would need a new referral. I was told either GP or school SENCO could do the referral. I asked for clarification three times that SENCO could definitely do it, as I had been told for ASD assessment it had to be GP referral and not SENCO. They assured me SENCO could definitely do it. I relayed this information to the school SENCO and she contacted the Children’s Development Centre herself to confirm she could do referral and also to find out who she needed to address it to. She was provided a name of a staff member, so she wrote to that staff member.
February 2017 the staff member at the CDC that the school SENCO had written to contacted her back to say that A) She couldn’t accept a referral from school SENCO, B) She wasn’t in charge of dealing with ADHD assessments and C) They no longer did ADHD assessments at the CDC. I took Picklepot to the GP for him to provide a referral instead.
In April 2017 we received forms. Lots and lots of forms. I had to fill in forms and I had to ask school SENCO and Picklepot’s teacher to fill in forms. They had to be completed and returned within 7 days of receiving them, which we did. In addition to this I was contacted by letter and asked to call the team to discuss my concerns with Picklepot / why I felt ADHD assessment was required.
I called the number, I discussed with the lady on the phone why I felt ADHD assessment was required, she asked me to put it in writing and provided an email address for me to write to. I dutifully sat down and wrote everything out and emailed it.
E Mails went back and forth from this email address for some weeks, asking for additional information, me asking when I was likely to hear something, and each time I got a polite reply back. Until one day I received a reply that said “you shouldn’t be using this email address it is not for parents it is for professionals only” so I replied and said, “You can see from the email trail that I have been communicating with the department for some time with this email address as advised to by staff member XXX when I spoke to her on the phone”. The reply back was, “You’ve been told wrong, don’t write to this email address again, we will not reply to you”. Rude? Yes. Something I have unfortunately come to expect from this complete joke of a system.
In August 2017 I received a letter confirming that the referral had gone from one department onto the actual ADHD team that would be able to provide the assessment. In October I received a letter from the ADHD team advising that Picklepot was on the waiting list for an appointment for assessment, but that due to how busy they were it could be some time before I received an appointment.
That brings us up to date. We’re now in June 2018, 16 months after the referral was originally made, and we still don’t have an appointment.
In the letter for the ADHD team it states that if you have any additional concerns before your appointment you should phone the number provided and speak with the duty person. I did that last week and asked to speak with the duty person and was told that until I have an appointment date they cannot help, and that someone else would phone me back urgently.
I’m not sure why their idea of urgent is so laid back because in my job if something is to be actioned urgently it is to be done within 24 business hours, however despite the fact that this department are dealing with the mental health of vulnerable children and their families, it took them an entire week before they phoned me back (yesterday)
The ADHD nurse I spoke with was lovely and sweet and very understanding, but ultimately she can’t do anything more to hurry things along. There is ONE SINGLE specialist in the whole of Norfolk and Suffolk who can provide assessment for ADHD and he has been working his way through an enormous back log of patients who were referred going back to before Picklepot was. For some time there was NO specialist who could provide assessment in these two counties, so any referrals were basically just on hold until he started the job, with no support or assistance for the children or their families. THANK YOU to the NHS cut backs in the region. If I could afford to go private I would, not because the NHS staff don’t work bloody hard to do what they do but simply because my son is struggling and the longer we wait the more he is struggling.
Picklepot is nearly 8 now. His social and communication skills are suffering. He’s having difficulties at school – his impulse control is non existant – he is acting out with throwing things, screaming, shouting, crying. Daily life is a struggle of trying to support him the best way we can and trying to encourage him, while at the same time trying to help him understand what is not acceptable and why. As much as I know for a great deal of it he can’t help the way he is behaving, it’s still important to me that he learns why he shouldn’t behave that way, because I cannot have him hitting / throwing things at people, it simply is not on.
The ADHD nurse was sympathetic and took note of what I was saying. She advised me about what I can do to ensure that when we DO finally get an appointment we have all the information we will need to hand, and no need to be sent away to get more information and then return for another appointment in another God-knows-how-long. Hopefully if we can get everything we need together then at our appointment it will be a nice simple assessment and diagnosis. (I know it’s in the post, it isn’t a question of IF he has ADHD but WHEN he is diagnosed)
Once the diagnosis is done, only then can we actually move forward in a helpful way. The diagnosis will allow the school to claim for more support for Picklepot, I can speak with the GP and the ADHD nurse about potentially having medication for Picklepot to help him concentrate.
It’s frustrating, it’s soul destroying, it’s hurtful to watch your child suffer the way Picklepot is suffering. He is trying to hard but it’s getting more and more difficult for him and he is struggling more and more. I know it isn’t the fault of the ADHD team, they’re doing the best they can – but it is the fault of cut backs and money saving exercises for mental health services in the local area and that is inexcuseable. My child has plenty of support from his family and friends, from his school and from our Helping Hands group, but many children don’t have that kind of support and they are suffering even more. It seems like they are the forgotten ones, they are shoved to the side and ignored and the situation is showing no signs of getting better.
So for now we continue to wait. I will speak to school SENCO when Picklepot goes back to school next week and get her to help put everything in place that the ADHD nurse has advised we will need, so we are all prepared for when the appointment eventually does happen. For now we continue to muddle along as best we can and hope that the damage it is doing to Picklepot’s mental health is something he can recover from.
The system is screwed up, and I am so tired of these constant battles to get anywhere, but as his mum I will continue jumping through whatever hoops they put in my way in order to get him the support he needs.