Help - Where to turn

Hi.

New here. Our 4 year old has many Autistic traits and both us as parents and his school have felt we need support. 

Today we attended a meeting with the school to start the process of getting support from both a speech and language therapist who he has already seen and another professional who I believe has more knowledge of autism. The SEN co-ordinator in the school suggested we also see our GP to ask for a referral to the paediatrician to get a formal assesment.

We got an appt this afternoon where the doctor said, we don’t do that, the school have sent you to the wrong place.

Discouraged by this and feeling like we were going round in circles Itookna look at NHS Choices which suggested the first point of cal was . . . your GP to refer to a paediatrician! I called 111 and spoke to a clinician who said: “Oh your GP is wrong!”

Phoned the surgery back and spoke to another doctor who made me feel bad for asking this asking why and said, “really check, the last time we referred it was declined. I can write a letter but there are no guarantees that you will get a referral to the paediatrian!”. “I have concerns that you have been told this by the helpline that doesn’t take into account local differences in services”.

What! What is going on. Who do I turn to?

Kind of fruatrated, all I want is some aupoort to understand how we can help support our little boy better as a parent! We have 2 older children and there is no doubt he is different and sees the world a different way. I know all children are different but I see so many autistic traits I feel we need some help to help him.

Any advice appreciated.

Parents
  • Hi NAS36644,

    As I understand it, you and the person you spoke to on 111 are correct and your GP should refer you to a paediatrician if they agree your child shows possible signs of ASD (this is the way the process is laid out on our diagnosis page - http://www.autism.org.uk/about/diagnosis/children.aspx##before )

    If your GP is refusing to provide services which they ought to, then you may want to look at making a formal complaint. You can find out about how to go about doing so on the NHS site here - https://www.nhs.uk/chq/pages/1084.aspx?categoryid=68 - or contact Citizens Advice - https://www.citizensadvice.org.uk/health/nhs-and-social-care-complaints/nhs-complaints-who-is-your-complaint-against/complaints-about-gps/

    However, I think perhaps before complaining formally it would be worth calling the NAS Helpline and speaking to someone directly, describe the situation and what you have been told, and see what advice or assistance they can provide you with. The Helpline is on 808 800 4104 (10am-4pm Mon-Thurs, 9am-3pm Fri).

    Best wishes,

    Ross - mod

  • Thanks for the advice. The GP has grudgingly said he would write a letter of referral to a paediatrician but said he couldn’t guarantee it would be accepted.

    I have spoken to the patient advice line of the NHS trust and am waiting for a call back. 

    I will contact the helpline too.

    Feel a bit less lost now. Hoping to get some positive advice of how to move forward.

    I feel less that my son needs help but more we do as parents to understand how to help our son in the best way.

    Appreciate the advice.

    G

  • You’re on the right tracks NAS36644, it is definitely you as parents that need this. You need to know how best to support your son and you’re doing a great job so far, you’ll get the support you need, even if it is a bit of a mine field, which it is. You’ll get there, I know you will. Many local authorities put on courses as well and carers groups often put on some really great courses and talks as well, you just have to hunt them out and of course other people who share your experience can also be a font of information and support. 

Reply
  • You’re on the right tracks NAS36644, it is definitely you as parents that need this. You need to know how best to support your son and you’re doing a great job so far, you’ll get the support you need, even if it is a bit of a mine field, which it is. You’ll get there, I know you will. Many local authorities put on courses as well and carers groups often put on some really great courses and talks as well, you just have to hunt them out and of course other people who share your experience can also be a font of information and support. 

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