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.
