Waiting for an assessment
The referral is in, and now, the wait. Waiting lists for children's assessments are long in much of the UK. It can feel like your child's support is on hold until someone official says a word. It isn't. Support doesn't start with a diagnosis. You can make good use of the months between referral and assessment.
What to do, step by step
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Find out exactly where things stand
Ask who is holding the referral referral When a professional passes your child on to a specialist team for assessment or treatment. A GP, school or health visitor can usually make one. Read the full definition of referral and check it has been accepted. Referrals do sometimes get lost. Ask the service how long the wait usually is where you live. Ask if they offer anything while you wait. Some run sessions or workshops for parents. And ask how they'll contact you.
The NHS says an assessment can take a few months or longer once a referral is accepted. Local waits vary a lot, so ask the service.
Worth gathering
- The date the referral was made, and the date it was accepted
- The name of the service holding it and a contact number
- Any reference number you're given
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Ask about Right to Choose if you're in England
In England, a GP GP Your family doctor. For many families the GP is the first person to talk to, and the person who refers your child on to a specialist. Read the full definition of GP may refer you for a physical or mental health condition. In most cases, the law then lets you choose which provider gives the care. That includes autism Autism Autism is a difference in how the brain develops. It shapes how an autistic child sees and experiences the world, how they communicate, and how they respond to things like noise, light and touch. A clinician has not checked this definition yet. Read the full definition of Autism and ADHD assessments. Choosing a different provider paid for by the NHS can sometimes mean a shorter wait. Ask your GP about it when they make the referral. Or ask if a referral you already have can be moved.
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Set up SEN support at school now
School support is based on your child's needs, not on a diagnosis. So there's no reason for it to wait for the assessment. Ask to meet the SENCO SENCO The teacher in your child's school who leads support for children with special educational needs. They are usually the quickest person for a parent to reach. A clinician has not checked this definition yet. Read the full definition of SENCO . Agree what support will be put in place, and ask when it will be looked at again. Get the plan in writing, even if it is a short note.
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Keep building your evidence
All you write down now helps the assessment itself. Assessment teams read reports from school and ask about your child's past. Your notes also help if you ask for extra help later. Dated, exact and dull beats vivid and vague.
Worth gathering
- Dated notes of things that happened, and what helped
- School reports and any SEN support plans or reviews
- Letters or reports from any professional who has seen your child
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Consider whether to request an EHC needs assessment
Your child may need more support than their school can give. If so, you can ask your local authority for an education, health and care (EHC) needs assessment. You don't need a diagnosis to ask. The local authority must tell you within 16 weeks whether an EHC plan EHCP A legal document, used in England, that sets out a child's needs and the support they must get. It is for children who need more help than their school can give on its own. Read the full definition of EHCP will be made. It has 20 weeks from your request to send the final plan.
Up to 20 weeks from the request to a final EHC plan; you'll know within 16 weeks whether a plan will be made.
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Chase when you need to, and speak up if things change
Ringing the service for an update isn't making a fuss. Services expect it, and it keeps your child's file live. If your child's needs get worse while you wait, go back to your GP GP Your family doctor. For many families the GP is the first person to talk to, and the person who refers your child on to a specialist. Read the full definition of GP and tell the school. Don't just wait it out. If you're getting nowhere, PALS can help you find your way. That's the Patient Advice and Liaison Service PALS A free, confidential service in NHS hospitals in England. If you are stuck chasing a referral, PALS helps you sort it out. A clinician has not checked this definition yet. Read the full definition of PALS at your local NHS trust.
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Use the wait to understand your child better
An assessment is a snapshot, taken by people meeting your child for the first time. You're with them every day. Build a clear picture of their strengths and needs now. Then support at home and school doesn't have to wait. And you'll walk into the assessment ready, clear and hard to brush aside.
Common questions
Will getting other support affect our place on the waiting list?
Getting help at school, using parent programmes or building support at home while you wait doesn't remove your child from an NHS waiting list. If you're ever unsure, ask the service holding the referral directly.
Can we pay for a private assessment instead?
Some families do, to shorten the wait. Before you do, ask your GP and your child's school if a private diagnosis would be accepted where you live. NHS services and local authorities don't all treat it the same way.
What if my child gets worse while we wait?
Go back to your GP and tell the school. A referral can be moved up the list when needs change, but only if the right people know. If you're ever worried about your child's safety right now, contact your GP, call NHS 111, or call 999 in an emergency.
How often is it reasonable to chase?
A polite call or email every couple of months is quite normal, and worth making. It checks the referral is still live and keeps your contact details up to date. Note the date and who you spoke to each time.
Where next on the journey
Diagnosis given?
Support after a diagnosis
What to ask the assessment team, how to update school, and what your family may be entitled to.
Read the guideNo diagnosis?
When your child doesn't get a diagnosis
An assessment without a diagnosis is not a dead end, what the report still gives you.
Read the guideDon't put the next few months on hold
Build your child's free profile while you wait. Map their strengths and needs, get ideas to try, and walk into the assessment ready.
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