Neurodevelopmental Assessment Team

To help us understand and support neurodiversity in our children and young people the neurodevelopmental pathway has changed. This replaces the previous pathway that required a direct referral into diagnostic assessment

The pathway now requires families and young people in collaboration with practitioners to participate in neurodiversity profiling as the first step. By moving to a needs-led approach that relies on our ability to profile neurodevelopmental differences and needs, we can provide a more personalised response, clear guidance on making relevant reasonable adjustments and access to an initial offer of early help.

Profiling will form the foundation on which consideration of a diagnostic assessment sits. This will be managed through a new consultation process.

We are training our children's workforce and support staff (schools, settings, health, voluntary sector, local authority, CAMHS, and early years) and offering information sessions for parents to promote the use of neurodiversity profiling as part of everyone's toolkit when working with children and young people.

GPs will not be undertaking profiling. Instead, they will redirect to other health and local authority professionals or schools that know the child. For advice, email the Neurodevelopmental Team.

The tool is not an assessment. It is a tool to guide a collaborative conversation between a parent, professional and young person (if appropriate) that creates a visual record. The tool focuses on 9 neurodevelopmental areas to understand:

• the challenges faced
• what is and is not working
• what else could be tried

The conversation can identify where children and young people may present differently in different situations where for example, they may be masking.

The 9 areas explored are:

1. Speech and language ability.
2. Energy levels.
3. Attention skills and impulse control.
4. Emotion regulation skills.
5. Motor skills.
6. Sensory needs.
7. Flexibility and adaptability.
8. Empathising and systemising.
9. Cognitive abilities.

These do not exist in isolation but exist within a wider child development context. It is important to consider other areas, such as sleep, nutrition, bladder and bowel, mental health, and trauma. These other areas will form part of the conversation if needed.

The profiling tool provides a holistic view of a child or young person's needs and helps to identify strategies or further sources of support to help manage those needs in different areas of a life, such as at home, at their early years setting, school or college, and in the community. The process of completing the profile is done with the family, and not for or to or by the family.

The Parent Carers Cornwall Neurodiversity Hub is best used in conjunction with the profiling tool. More details on identified needs are available on the website.

We would recommend working in partnership with the parent and someone who knows the child well. If the young person can look at the website themselves, it can be an empowering resource for them to learn about their needs and develop strategies to help themselves.

Neurodiversity profiling tool training will last in the region of 3 hours. There is no cost and includes all the necessary resources.

The actions, strategies and reasonable adjustments identified from the profiling should be trialled for a sustained period of over 12 weeks. This helps to ensure children and young people access the right help, as soon as possible, and any remaining difficulties can be explored with the knowledge that this support is in place.

If you are still struggling after this sustained support, a request for a consultation with our multi-disciplinary consultation team to access further support can be made. Requests for consultations must be made by a professional and they must enclose details of the completed profiling tool, details of what has been tried, what has worked well, and what further support they or you feel is required.

Practitioners and profilers are required to follow 4 steps.

1. Complete the profile with the family, identify the high impact areas and implement and record strategies adjustments and any specific interventions that are agreed and put in place in a plan.
2. Each plan will have a minimum 12-week implementation period which should be reviewed to reflect on what has worked well, and whether there are ongoing gaps in understanding how to support the child.
3. If the plan is having a positive impact and the child and young person is thriving and learning, a consultation could be accessed later date or may not be needed at all.
4. If there are ongoing concerns or gaps, the practitioner supporting the family and child can request a consultation through the portal.

The information required for the consultation to take place will be a summary of the profile findings, the strategies and adjustments that have been introduced at home and school, how successful these were, and what further support the family and practitioner feel is required

Consultation could take the form of a:

• telephone or remote or video call discussion with specialist neurodevelopmental clinicians
• face-to-face appointment or visit which may lead to more specialist advice and support for a particular need, or consideration of placement on the diagnostic waiting list.

If a diagnostic assessment is recommended the Neurodevelopmental Assessment Team will explore autism and/or ADHD, and as part of those assessments will also explore the following where appropriate:

• learning, sensory and coordination difficulties
• foetal alcohol spectrum disorder
• other neurodevelopmental conditions

The best way to help children, young people, and their families to better understand their needs, and ensure that any adjustments or early help support is in place, is through completion of the profiling tool as a first step. This approach enables the people who know the child to work in collaboration and try out strategies over time to see if this helps meet their need.

We do acknowledge that some children and young people will need to access a specialist diagnostic assessment. By following our new pathway, we will ensure the right children and young people can access this.

A multi-disciplinary assessment team consisting of:

• psychiatrists
• clinical psychologists
• speech and language therapists
• occupational therapists
• paediatricians and nurses
• neurodevelopmental practitioners

Children and young people who have a mixed picture of difficulties or complex presentations are assessed through this team. The team carry out assessments to explore whether your child may have autism. During that assessment (if required) they will also assess for;

• other neurodevelopmental conditions such as attention deficit hyperactivity disorder (ADHD)
• language or coordination disorders
• whether the difficulties may be because of other factors, such as their learning levels or life experiences

We want children and young people to access the support they need, whether they have a formal diagnosis or not. We are currently working with our education and healthcare partners to ensure this early help and support offer is as comprehensive and timely as possible. There is an expectation that all schools and settings make provision for all learners identified as having special educational needs and disabilities (SEND) regardless of whether they have a diagnosis of a specific condition. Visit the Cornwall Council website for more information, guidance and resources.

The way people refer to the team for a diagnostic assessment changed in May 2024. We have continued to receive an unprecedented number of referrals every month since then. This has impacted considerably on how long your child can expect to wait until they are seen.

Regardless of which way your child was referred into the service and accepted for an assessment, the waiting times are now around 3 years from the date they were accepted for assessment. We are working hard to reduce this with a variety of different initiatives and changes.

Waiting lists are not first come, first served. There are many factors taken into consideration. These include clinical prioritisation and the needs of the young person. For this reason, the list is continually reviewed. Therefore it is not possible to give an exact waiting time.

We also need to ensure that we act in an equitable manner, and assessments are provided to those that need them most. We are therefore unable to fast-track assessments based simply on request. This would not be fair to other children and young people who are waiting in the system.

If your child or young person's circumstances or presentation or needs have changed significantly since their referral, please get in touch. This does not necessarily mean their assessment will be completed sooner. We always encourage a needs-led focus on supporting a child. Rather than support being based on or dependent on a diagnosis being in place.

If you feel that your child's mental health has deteriorated while they have been waiting for an assessment and you need more help in supporting this, contact our Children and Adolescent Mental Health Service. Children and young people can receive mental health support while they are waiting for a diagnostic assessment.

In England, under the NHS, you have a legal right to choose your mental healthcare provider. This service, offered through the NHS, is free of charge.

This right allows you to explore alternative providers if the waiting time for an attention deficit hyperactivity disorder (ADHD) or autism assessment is too long.

Right to Choose was introduced in 2018 and is still a new system. Many patients may not be aware of these options.

Who can offer Right to Choose assessments?

Several private organisations across the UK offer Right to Choose ADHD and/or autism assessments. To be eligible, clinics must offer the same service to the NHS in England. They must also have an NHS Standard Contract with an integrated care board (ICB) or NHS England for the required service.

Checking a provider's website is a good way to determine if they offer the services, you need and their current waiting times. GPs in Cornwall and the Isles of Scilly have been informed of which eligible providers will be accepted through Right to Choose. 

Things to consider

Many clinics offering these assessments can diagnose ADHD or autism but may not provide medication titration. This means you might need a local NHS referral if medication is required to manage symptoms. NHS services can also quality check the diagnosis and decline to provide medication if it is not of a suitable quality. This should be considered when considering Right to Choose for ADHD.

Many of the private organisations offer remote assessments (usually by video call). This is a different experience than face-to-face assessments offered by the Trust.

It is important to discuss your decisions with the child or young person involved where possible, to ensure they are part of the decision making.

Request a Right to Choose referral from your GP

Have an open conversation with your GP about your concerns regarding ADHD or autism. Your GP may suggest a referral for an official assessment. With waiting times for ADHD and autism assessments at the Trust being over a year, Right to Choose can offer faster alternatives. This can help reduce the long wait for diagnosis and support.

What happens after choosing a clinic?

Once you select a clinic, you will need to research and decide which provider to choose. Your GP cannot advise on which clinic to select. Your GP will advise you on how to let them know your choice.

How much quicker is Right to Choose?

The speed of the assessment depends on your chosen clinic and whether they offer medication titration. Right to Choose assessments can take anywhere from 12 weeks to 12 months. This is much quicker than NHS alternatives, which have waiting times of up to 7 years.

If a clinic offers a diagnosis but not medication titration, you may need an additional referral for post-diagnostic support. This can take more than 24 months. Your GP will not initiate specialist medication and will only prescribe once the patient is stable on a dose and if the provider can meet the same standard for shared care as NHS services.

Why choose this if medication is not accessible?

Many patients find that a diagnosis is sufficient for obtaining additional support from schools or employers. They also may not need medication at all for managing their conditions.

Further questions

If you have more questions, get in touch with your GP surgery. For further research, below are some helpful resources.

ADHD resources

• ADHD UK: A charity offering free advice and information on ADHD and Right to Choose referrals.
• ADHD Foundation: The UK's leading neurodiversity charity, offering services for those who live with ADHD, autism, dyslexia, DCD, dyscalculia, OCD, Tourette's syndrome and more.
• NHS website ADHD information.
• Mind website ADHD and mental health information.

Autism resources

• Autism Speaks: Dedicated to creating an inclusive world for all individuals with autism throughout their lifespan.
• National Autistic Society: offer support and advise for autistic people in the UK and their families.
• NHS website autism information.
• Mind website autism and mental health information.

Young people aged 16 to 18 years old who are just seeking a diagnostic assessment for autism have the option of being referred to our Adult Autism Assessment Team. The waiting times are likely to be similar regardless of what team you access your assessment from. This only applies to young people who do not have ongoing mental health difficulties.

There is currently a waiting list for diagnostic assessments. There is support available to children, young people, and their families whilst they are waiting, see our useful resources section below for more information.

Before the assessment appointment we will send forms to parents or guardians, and the child's school. These forms are a vital part of the child's assessment, as the most useful assessment information can come from the people who know the child or young person best, in their everyday environments and activities.

The forms will ask questions about the parents or guardians' own life and experiences, and their family history. It is important that we have this information before the appointment as we cannot complete our assessment without it. If the child is home-schooled, please talk to us about this and we will try and gather further information from another person who knows them instead.

Once we have received your forms, we will send an appointment letter. During the appointment, you and your child will meet with different professionals. One will spend some time with the parent or guardian to gather any further history information about concerns, the child's development, and their current presentation. Another will spend time with the child finding out all about them and carrying out assessments which are talking or play-based depending on their age.

Following this appointment, we will let you know if we need to do any additional assessments, such as observing your child in school.

We will then discuss our assessments in our multi-disciplinary team meeting. We will contact you by telephone to inform you of the outcome. Reports will then be sent in the post to you.

Although we are an assessment service only, we will always try to provide you with advice and support or strategies to help you and your child based on what we have learned through the assessment. We may signpost you to services who may be able to offer the help that you need where relevant.

Resources

• Neurodevelopmental Assessment Service for children and young people leaflet (PDF, 239 KB)

The Park Family Hub, Falmouth

Hayle Family Hub

Saltash Family Hub

St Barnabas Hospital

Underground House, Trevissome Park