"Lack of Autism support"

Last year, I wrote to Care Opinion my agony of getting a diagnosis for my child under NHS Grampian, in the hope that future families do not have to go through what I did.

Here is a timeline of the support we have received from NHS since a diagnosis from an expert in Autism abroad was handed to NHS.

A. Diagnosis handed in to GP- early March

There was a delay in handing in the diagnosis to Paediatrician- took more than a month

B. Diagnosis handed in to Paediatrician- late April

Referrals made to SALT, Occupational therapy (to address sensory issues) and Educational psychologist

- Never got appointment with any of above.

C. Follow up appointment with paediatrician- August

1/These appointments are a complete waste of time. The paediatrician seems takes the role of an clerk/administrator- only there to check how many appointments you have attended, make notes of referrals. I didn't get any medically-relevant answers for any chief complaints/recent concerns I had at that point in time. I found some of the comments patronising.

2/The paediatrician however promises to chase up referrals. Referral also made to feeding specialist, and for blood tests.

D. Meeting with staff to discuss feeding - September

Takes about 1. 5 hours to record history and complaints in detail. At the end of 1. 5 hours, I asked what do you think is the issue? Is there a diagnosis? (I. e. - Is it sensory, is it poor oral motor skills? etc).  I was told "there is definitely an issue otherwise my child wouldn't be taking an hour to complete a meal.  I felt my question was dodged. If they cannot understand the issue, how can they address the issue?

Since then we had one more appointment with this team where they observed the child eat, and left me with some print-outs of what to feed, what not etc. (I get more relevant information off Google than those more than a decade old, 'one size fits all' print-outs- print out dated 2004)

Since then we have been given two more appointments both of which were dedicated to "assessing" speech, though feeding is our main concern, with our child not gaining weight and having dropped from 31st centile to 18th centile now.

Asked to send me a report of observations so far - 10 months since the first visit, but no official/clinical report provided.

E. Official SALT referral - never heard back from them

F. Occupational therapy- October

I was invited to a one-off presentation (given to carers as well as health professionals together) with a lot of medical jargon and about 50 slides completed in half an hour. End of occupational therapy.

- Not very helpful for a parent.

G. Blood tests and its results- December

Clinician calls up and informs that my child's thyroid hormone levels "seems" low and asks me to "share" our "private paediatrician's" opinion on thyroid levels. In my opinion, this clinician is indecisive and worries me. In my experience, they have repeatedly failed to make clinically competent decisions.

H. Educational psychology- never heard back.

I. Follow up appointment with paediatrician- March

The clinic was running late. We were seen 35 minutes after our allotted appointment time, and seen exactly for 10 minutes. Will not be going to these completely useless appointments, with a paediatrician who thinks my child is losing weight because her mom is genetically small and that she has potential of being a model. Results of genetic (blood) tests not discussed nor report handed in.

Current- June

It has been more than a year since I have handed in a private diagnosis (because of failure to get a diagnosis under NHS Grampian). Thank you NHS for the referrals, but I can whole-heartedly say I have received zero credible support for my child. While referrals are being made, and staff are trying hard to help- The staff seem to have less training, understanding or experience in their area of work. In my experience, they are unable to provide medically relevant objective reasoning to any questions raised, diagnose issues or come up with an action plan to help the medical issues they are confronted with. For those tests/appointments made- no reports have been provided so far (except one provided by a Community Nurse (promptly) after her observation of my child at their nursery). It has been an utterly disappointing experience.

However, NHS did not stop me from believing what my child could possibly do should she receive some support- We have been fortunate to find a private speech therapist in Aberdeen, private occupational therapy for 3 months and a Private feeding team based in the USA who support us over FaceTime (diagnosed my child's issues within a 30 minutes appointment and accordingly therapy indicated and ongoing). My child is making progress through the support we receive privately, which is very well being recorded down by our administrator (paediatrician).