Identifying Health Needs
You will likely have health professionals already working with you for children with complex needs:
- identified at birth
- after an injury or illness
- through their early years
They will let you know if they believe your child has Special Educational Needs. They can also guide you to other sources of support and information.
Your child's needs may have started to emerge a little later. You may start to notice differences around development or behaviour when your child starts nursery or school, for example.
You can talk to their keyworker or Teacher about your observations. You can discuss what support might be needed and decide next steps together.
You can also see your child's GP. Mutually, you might talk about whether to make a referral to a specialist service or Paediatrician.
If your child continues to make less than expected progress, the setting (nursery, school etc.) may talk to you about making a referral. This could be to a specialist health service, such as a school nurse or a speech and language therapist. Settings can make a referral into some health services, but not all.
The Local Offer will give you information about services and how to access them.
For more information on this topics, the following links will take you to other useful websites or documents
Search for a service on the Local Offer
Read more about specific conditions on the NHS 'Health A to Z' page
Council for Disabled Children Factsheet 'Levels of care in the NHS'
Referrals to a Specialist Service
Sometimes a setting, the local authority or health professional are unsure how to support your child. In this situation they might suggest you consent to a referral to a specialist service for advice so they can better understand your child's needs.
You should have the opportunity to speak with or meet any specialist that sees your child. They will:
- explain their role
- explain any observations or assessments they will carry out
- tell you what will happen next
Seeking a Diagnosis
It is normal to feel unsure about what to do. You may even feel overwhelmed. As a parent you will hear lots of advice and sometimes this can be confusing or even conflicting. You might disagree with your partner about what to do. You might feel worried about your child being labelled with a diagnosis.
Taking the step towards seeking diagnosis can often be a relief to both parent and child, who might be feeling different but not understanding why. However, it is your personal choice and there is no right or wrong. Some things to consider:
- What does my child say- do they notice they are different and how is this affecting them?
- What are the alternatives, ie. can we support my child without a diagnosis? (talk to school, GP and any other professionals involved)
- What will be the impact of going ahead with a referral compared to if we do not? Will a diagnosis mean we can access support?
Some parents decide to request a referral and then wait and see - using the waiting time (which can be lengthy) as additional time to decide.
Getting the most out of your appointment
It can be helpful ahead of an appointment to make notes about your observations and anything you want to raise. It can be hard thinking of examples on the spot so having bullet-point notes can make sure you get everything across that you want to. Sometimes the setting will be happy to bullet-point their observations for you too.
It is likely you will find it emotional talking about your child's difficulties or receiving a diagnosis. You may want to take someone with you - your partner or a close family friend for example.
Think about whether you would like some time with the health professional without your child present. You can find out in advance whether there is someone available to look after your child in the waiting area for a few minutes.
You can take notes of key information, though usually you will be sent a letter including what was discussed.
Before you leave - check what happens next and when you will hear.
Assessments including diagnosis
Regardless of the service you have been referred to, there will likely be some assessment. Some examples include:
- Considering the referral against the service criteria
- Information gathering from family and professionals involved
- Observations in school, clinic or at home
- Diagnostic tools - such as questionnaires
- Assessments carried out with your child
Your child (and sometimes you) may be offered support or therapy from health services.
You may receive a diagnosis for your child. It is important to share this information with the education setting.
You could feel emotional if your child gets a diagnosis. Coming to terms with this may take some time. Your child will also feel this way too and may deal with it differently to you.
If you are unhappy with:
- The diagnosis
- The assessment carried out
- Services or provision offered
See the disagreements about health services or provision page for information about what you can do.