Neurodevelopmental services

Some people think and act differently to other people because of the way their brain works. This is called neurodiversity.

Neurodiversity can affect someone's behaviour, memory or ability to learn.

Neurodiverse conditions include:

• Autism
• ADHD
• Dyspraxia
• Dyslexia
• OCD
• Tourette's Syndrome
• Literacy and numeracy difficulties

Being neurodiverse can mean your child or young person needs extra support and help from services.

Background reading

Read this advice for parents about neurodevelopmental assessments. The document has been co-produced with members of Norfolk and Waveney neurodevelopmental stakeholder group.

Quick guides

Just One Norfolk have quick guides to neurodevelopmental support. They are for families who feel their child might have a neurodevelopmental difference and need support. The listed local services are available for you to use. 

Healthy child programme

All children and young people develop in different ways and at different rates, but it's useful to know what to expect.

The healthy child programme team provide information and advice about child development on the Just One Norfolk website.

You can also contact the healthy child programme team for advice by phone or text.

Support from your child's place of learning

Your child does not need to have a clinical diagnosis to get special educational needs (SEN) Support.

If your child has difficulties with learning, their early years' keyworker or teacher can help. They can adapt teaching methods and materials to suit your child's style and rate of learning.

If there are still concerns, your child may have SEN. SEN Support will be put in place.

Support from your child's GP or School SENCO

If your child is in school, it can be helpful to talk to your child's SENCO about your concerns. If your child is still too young, or is educated elsewhere, you can talk to your child's GP.

It's a good idea to write some notes to help you explain what's causing your concerns. Your notes might include things you've observed about their:

• Behaviour and how they interact with other people
• Communication and language skills
• Ability to learn and understand new information

If your child attends a place of learning, the SENCO can gather this information with other reports they may have about your child. For example: 

• A letter/report outlining their observations 
• Any assessment reports about your child
• Your child's SEN Support Plan

They may be able to give you advice about your child's behaviour and development. Or help you access advice and information. 

Together, you may decide:

• To ask your local neurodevelopmental team to see your child. This is called making a referral.
• That the neurodevelopmental team do not need to see your child. They can help you understand the reasons for this decision. They can also help you with what other support is available and next steps.

If you decide you would like your child to have a private assessment, there are important issues to consider first. Find out more about private neurodevelopmental assessments.

Support for your family

If you have difficulties in your family, or are worried about your child, there are people who can support you. 

• Find out about help for families
• Find out about Short Breaks

Current waiting times for Autism and Attention Deficit Hyperactivity Disorder (ADHD) assessments are long.

Assessment requests are higher than our NHS neurodevelopmental teams can manage.

Because of this, parents, carers and concerned adults are looking at other options. This includes:

• Paying for private (independent) assessments
• Asking your GP for your Right To Choose a provider

A diagnosis can be important, but special educational needs (SEN) Support shouldn't depend on it. Support should be needs led rather than a diagnostic approach.

Find out how children with SEN are supported in Norfolk's education settings by:

• Speaking to your SENCO
• Visiting the Norfolk Local Offer

All services must follow the same quality standards

In Norfolk and Waveney, there are many different services who can complete assessments:

• Some only work for the NHS, paid for by the Integrated Care Board (ICB)
• Private (independent) providers with an NHS contract. They help NHS services with their waiting times.
• Others are private providers who do not have an NHS contract, but are still qualified

All professionals in these services must follow the same quality standards. This is regardless of whether they work privately or for the NHS. This is so assessments and any diagnosis looks at all reasons why your child might need support.

Read the guidance on quality standards. The National Institute for Health and Care Excellence (NICE) set these standards.

Before the assessment

If you are considering paying for a private assessment, it's important to ask questions about the service.

Whether you get your child assessed privately or by the NHS, professionals should: 

• Have the right qualifications and training. They should be registered with a relevant regulatory body. Regulatory bodies set clinical and professional standards for medical and clinical professions/organisations. They can formally intervene if needed. They can also close practices and restrict or bar individuals from practice. To check if someone is qualified and registered with an appropriate regulatory body, you can check these websites:
  • Health and Care Professions Council (HCPC)
  • Nursing and Midwifery Council (NMC)
  • General Medical Council (GMC)
• See your child face-to-face, usually in their school. You should check that this will happen.
• Complete the diagnostic process as part of a multi-disciplinary team. A multi-disciplinary team involves input from a range of qualified professionals. This is instead of a single practitioner who may have training in a variety of areas.
• Consult with other professionals involved with your child, such as their teachers/SENCo 

It is also important to check:

• Your child is screened for other conditions as part of the process
• If the NHS has contracted the provider under Right to Choose, is it for the NHS' child/young person pathway or the adults pathway
• The provider is registered with the Care Quality Commission (CQC). You can also read the report on their last inspection.
• The provider is registered on Companies House 
• How much the assessment will cost. You should expect all costs upfront and check you understand what these include.
• Who will pay for any recommended medication prescriptions

After the assessment

After the assessment, you should receive a detailed report. It should:

• Describe your child
• Suggest what reasonable adjustments they might need
• Explain how professionals can support them

It might also list local agencies who can help you. The report should be tailored to your child. 

When you have concerns

Most providers will deliver quality assessments and accurate diagnostic input. However, we strongly advise parents to follow this guidance. There could be a risk that where providers are not working in the right way, the assessment might not properly reflect your child. It could lead to the wrong support or adjustments.

A private diagnostic assessment might be used as part of an Education, Health and Care Plan (EHCP) assessment. If the private assessment was not carried out correctly, it might not get considered in the EHCP assessment or in the final EHC plan.

If you are uncertain about the outcome or quality of the assessment, talk with the private provider within six weeks. Requests for a second opinion will mean joining the NHS waiting list in your local area.

If you decide your child needs a referral to a neurodevelopmental team, your child's SENCO or GP can contact:

• Your local NHS team
• A different NHS team if you want to use your right to choose. This must be done by a GP. Find out more about right to choose.

Supporting evidence

The neurodevelopmental team may request information about:

• Your concerns about your child and what you've observed
• Your child's schools' observations of your child's development and behaviour (if your child goes to school)
• Any medical history that may be relevant

You may be asked to collect this information.

Review

The neurodevelopmental team will review this information. The team will decide whether there is evidence that your child needs a neurodevelopmental assessment.

If the referral for assessment is accepted

If the NCHC neurodevelopmental team decides that your child needs an assessment, they will add your child to the waiting list.

Unfortunately, the waiting list is long. The neurodevelopmental team will put you in contact with Family Action. They can support you while you wait for the assessment.

While you're waiting, you can also:

• Find out more about the assessment process
• Check that your child is getting SEN Support at their place of learning
• Find information and advice on the Just One Norfolk website

If the referral for assessment is not accepted

The neurodevelopmental team might:

• Need more evidence to decide if your child needs a neurodevelopmental assessment
• Decide your child does not need a neurodevelopmental assessment

If the team needs more evidence, they will send a letter to you and your GP asking for more information.

If the team decides that your child does not need an assessment, they will send you a letter to tell you this. The letter will include information about other services that may be able to support your child.

Your child will still be able to get SEN Support at their place of learning.

You might want to talk to your school SENCO, GP or the healthy child programme team.

Consultation

The neurodevelopmental team will contact you to learn about your child and their development. They will talk to you about the information provided in your referral. They may ask you about:

• Your child's birth
• Your child's early developmental milestones
• Childhood illnesses
• Your health and experiences
• Your home situation

Some of these questions might feel quite intrusive. The team will only ask you for information that will help them understand your child's health and development.

Your child's personal health record (red book) may help you answer some of the team's questions.

The team will review the information from this consultation. They'll make a plan for your child's assessment. They will send you a letter to tell you about the assessment plan.

Assessment activities

Each neurodevelopmental assessment is different. It depends on the needs of the child or young person. The assessment may include:

• Questionnaires for your family and your child's school to complete
• A visit to your child's school, or a home visit if your child is under 6 years old
• Specialist assessment by a speech therapist, occupational therapist, nurse or clinical psychologist
• For younger children - a play-based assessment to assess their social communication skills
• For older children - answering some questions, talking about things they like and don't like, and some games and puzzles

Each activity gives the team a chance to observe your child in different situations. It allows them to get to know them on a one-to-one basis.

The team might ask you to wait in the waiting room during some parts of the assessment. They will explain why they are asking you to do this.

After the assessment

The neurodevelopmental team provide a diagnostic assessment-only service. They will meet with you to explain the diagnosis and support that can be offered.

Following a diagnosis, you will be provided with a pack containing information about autism and/or ADHD, as well as information about the additional resources and support services available.

If a diagnosis is not given, the neurodevelopmental team will feedback the reasons and factors that have influenced this decision. You will still be provided with the assessment reports and a summary explaining the non-diagnosis.

What is it?

In many cases, you have the legal right to choose where you have your NHS treatment. The NHS is offering more options to enable you to make choices that best suit your circumstances. This gives you greater control of your care, and hopefully better results.

If a GP needs to refer you for treatment, in most cases you have the legal right to choose the hospital or service you'd like to go to.

This will include many private hospitals if they provide services to the NHS. It does not cost the NHS any more than a referral to a standard NHS hospital.

You can also choose a clinical team led by a consultant or named healthcare professional if:

• That service provides the treatment you need, and 
• They have an NHS contract

NHS Norfolk and Waveney has published a Patient Choice Policy.

What can I do?

The Integrated Care Board (ICB) is intending to increase the number of private providers who can hold an NHS contract for Autism and ADHD assessments for children and young people. Soon, there will be a provider framework in place. More information will follow about who is on that list.

 In the meantime, to learn who has an NHS contract, contact the ICB team:

• Email: nwicb.contactus@nhs.net  
• Phone: 01603 595857

You can also contact your GP who may know about what services are available locally.

Your GP will decide if a referral to an alternative provider is clinically appropriate. In most cases, GPs will need to refer you for assessment. 

Bear in mind that there is no guarantee the providers will accept your referral. NHS Norfolk and Waveney need to know that the provider holds an NHS contract for services included in the referral.