Neurodevelopmental Service

Mindworks is a collaboration of partners including Surrey and Borders Partnership NHS Foundation Trust (SABP), Barnardo’s, National Autistic Society (NAS), Learning Space, Eikon, and others. We all work jointly to ensure that the right support is given to the right person. All members are specialists in this area and have different offers which are carefully considered for each individual and endorsed by the NHS. There is more information below about each partner.

This animation shows how all the partners work together to provide these services.

We sent out a communication in November and March regarding the changes to our Neurodevelopmental Pathway and how you can access these services, the latest update can be found in our news section.

We know that life experiences can look like neurodivergent needs including sleep, diet, life trauma, time away from peers during Covid, etc. We therefore ask that attempts be made to support these areas of need in the first instance in liaison with your school nurse, SENCO, or primary mental health worker linked with the school.  In order to help with these needs, please refer to our webpage where there are a number of resources for support: Support strategies and interventions can be found here. Strategies should be embedded in the home and school long term to support presenting needs.

Interventions from Mindworks may include workshops for parents, support for young people, school training, or appropriate signposting.

Following our joint updates in November 2023 and March 2024 with Surrey County Council and Surrey Heartlands ICB and various engagement events that have been running, below are some frequently asked questions about support for children and young people (CYP) with Neurodevelopmental Needs. 

What is the joint approach being implemented across NHS Surrey Heartlands, Surrey County Council, and Mindworks to address the needs of CYP with neurodiversity? 

The approach is underpinned by a new service delivery model called the THRIVE Framework for System Change (Wolpert et el, 2019.)  Its main emphasis is on giving children and young people a central voice in decisions about their care which takes a needs-led approach. This means a shift away from seeing the presenting issue through the lens of a problem and looking at what support and help the child/young person requires to be able to Thrive and feel supported with their neurodevelopmental needs. This needs-led approach is personalised to the individual child or young person through working with them to understand what support they need and what is important for them to develop trusting relationships so support can be provided appropriately in order to achieve the desired goals.  

A helpful video to explain that further is available here: Our THRIVE approach

What support is available for parents and children/young people? 

Mindworks continues to provide parental support through our partners to achieve the following: 

• To help understand their child’s needs in life (with or without diagnosis), the impact of this in their day-to-day, support for the family, and the provision of practical and emotional support, advice, information, and strategies.
• Empowering parents and carers with efficient strategies and understanding of communication skills and effective behaviour techniques in their support for Children and Young People (CYP) with neurodevelopmental (ND) needs, ADHD and AS
• Supporting the CYP to feel empowered to manage their own needs using support, developing peer networks, and integrating strategies into their day-to-day life in school and at home.

Information on support and resources available for social communication differences, attention, activity, and other behaviours are provided through the Mindworks website: Mindworks Neurodevelopmental Needs. There are several characteristics that can look like neurodivergent needs. Whether they are or not, we have created some resource packs to help with these needs.

• Navigating the Maze – a toolkit of strategies for parents of neurodivergent children
• What to expect
• ND flashcards

Why needs-led instead of diagnosis-led approach? 

All legislation across SEND and Children Services primarily focusses on the identification of need and the importance of intervening early, and in the least intrusive way. 

By taking a needs-led approach we are better placed to be able to intervene early and put the right support in place at the right time without the need for a diagnosis. This means action we take is in response to the emerging and presenting needs. This has been a key message from our Children and Young People (CYP), our families, and our teams working with CYP – to help make a change early so the experience for CYP improves. 

This approach works in synergy with diagnostic pathways and provides clarity that there is no requirement for an individual to have a diagnosis to be able to access timely help and support. 

What is the update from Mindworks Surrey about the Neurodevelopmental assessment pathway since the last update on March 24?

School Consultations

As you would have read in previous communications, access to the neurodevelopmental pathway, including assessment and diagnosis (where indicated), is available via a school consultation. The consultations bring together the child or young person (where appropriate) with the individuals around them to consider their needs and the best approaches and interventions to enable them to thrive. School staff and Mindworks Surrey neurodevelopmental spoke clinicians all have advice and expertise to offer. Schools can contact the Neurodevelopmental team to request a formal consultation in the following situations: 

• Where the school is supporting a child or young person experiencing high levels of distress, that is impacting their behaviour and ability to participate in school.  
• Where the school is supporting a child or young person whose attendance is below levels which trigger a safeguarding referral) and has been referred to (or has self-referred to) Early Help and where support has been offered.  
• Where the school is supporting a child or young person who is already known to mental health and specialist services and whose neurodevelopmental needs require more urgent interventions. 

What happens after a consultation has taken place? 

Consultations will help to review and evaluate the help and support in place in addition as well as considering alternative approaches to supporting a child or young person’s needs. A joint agreement may result in the child or young person progressing to the waiting list for a neurodevelopmental diagnostic assessment. 

To book a consultation Mindworks have listened to schools, and this can be done by email or telephone, schools have the necessary information to be able to do this.

I would like to request a consultation with SPOKE what should I do?

Please refer to information on this page: Forms for requests for support (referrals)

Once accepted for a full diagnostic assessment how long is this waiting time?

The team are currently assessing young people who have waited between 2 and 2.5 years, which has seen some improvement since the changes where CYP were waiting closer to 3 years. With the current changes that are taking place and additional capacity being bought in by Psicon (an independent provider), Mindworks hope to soon see a further decrease in the waiting times. For children presenting with comorbid ADHD and ASD waiting times are longest due to the requirements of the clinical assessment and diagnostic pathway.

What happens to my referral when I turn 18 years old? Will I go to the bottom of the wait list in adult services?

No. For diagnostic assessments, if the assessment is outstanding, this is transferred to adult services who honour the original date of the referral. For ADHD medication reviews, your care is transferred to the adult services who will either arrange an initiation appointment or continue with the agreed plan of medication review appointments.

Why is the wait so long for a diagnostic assessment for children (aged 6-18)?

In recent years, the demand for ADHD and Autism assessments has dramatically increased across the country.  Therefore, the number of requests Mindworks Surrey receives every day has significantly increased.  We are working hard to increase capacity across Mindworks to process these requests.

Can a Private Diagnostic Assessment for ADHD for a child that has been confirmed by a Private ASD Diagnostic Service outside of the NHS be recognised by their Local Authority (SEN) and NHS? 

ADHD can only be formally assessed by a UK registered psychiatrist, a specialist ADHD nurse, or “other appropriately qualified healthcare professional” [Nice Guidelines - NICE guideline [NG87]Published: 14 March 2018].

Other appropriately qualified healthcare professionals with training and expertise in the diagnosis of ADHD” include Psychologists. Psychologists can provide an assessment of ADHD; however, they are not able to prescribe ADHD medication. 

Other mental health professionals, including counsellors, cannot provide a formally recognised diagnosis of ADHD. (Note: For children a Paediatrician may also be able to diagnose ADHD]. At SABP we would need a full Nice Compliant report [Nice Guidelines - NICE guideline [NG87]Published: 14 March 2018] with the following information included to evidence Diagnosis, presentation, Impairment and Impact, and Timescale :

• full clinical and psychosocial assessment of the young person; this should include discussion about behaviour and symptoms in the two different domains and settings of the person's everyday life.
• A full developmental and psychiatric history
• Assessment observations report and assessment of the young person's current and history of mental state. 
• Rating Scales should be shown to meet thresholds in two different domains and settings of the young person's everyday life. (i.e. education & home)

Do you need an ND diagnosis to have an Education Health and Care Plan (EHCP)? 

A child doesn’t need a diagnosis to receive additional support in school. A child also doesn’t need a diagnosis to request an EHCP.  A diagnosed medical condition, need or disability does not mean a child has additional needs or requires extra support above what a school can provide ordinarily. 

A child or young person has special educational needs if they have a learning difficulty or disability that means they need extra support at school. You can read more information on P13 of this guide: Additional needs and/or disabilities parent and carer guide | Surrey Local Offer and also via this link: A guide for parents and carers of children with additional needs and/ or disabilities (surreylocaloffer.org.uk)

I am concerned that I need a diagnosis to access support at School, what should I do?

Children and young people do not require a diagnosis to receive support at school.  If a child or young person has a need in school, they are entitled to receive support to meet that need.

We work together in partnership with Surrey County Council and Surrey Heartlands ICB, if you need any specific information about EHCPs, Right to Choose or Ordinarily Available Provision please visit their specific websites. 
 

Should the young person require a diagnostic assessment the Neurodevelopmental Service will be in touch to confirm and outline the next steps for your child. All diagnostic assessments compose of a need to understand the young person’s developmental history as well as a direct assessment with the young person.

Acceptance by Spoke to ND Hub: What to expect

Your child’s referral has been accepted by the Children and Young People’s (CYPS) Neurodevelopmental (ND) Service for an assessment of either Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD) or both. The following information is to provide you with some details about the Neurodevelopmental assessment pathway and what you might expect to take place as part of your child’s assessment. 

Terminology 
Autism Spectrum Disorder
Different terminology is used to describe autistic individuals. Throughout the assessment process, we will use Autism Spectrum Disorder (ASD) as this is the medical terminology used in the diagnostic manuals. However, we recognise that individuals may have a preference for which terminology to use outside this assessment setting. We would recommend you refer to the National Autistic Society (NAS) website for further information.

Attention Deficit Hyperactivity Disorder
Throughout the assessment process, we will use Attention Deficit Hyperactivity Disorder (ADHD) as this is the medical terminology used in the diagnostic manuals. We would recommend you refer to the Young Minds website for further information.

Consent
Before any assessment takes place, it is essential that we have consent from your child if they are 12 years or older. We assume a child of this age and upwards (unless there is information to suggest otherwise) can be involved in the decision-making about their assessment. We will ask for consent at each stage of the assessment. Regardless of age, it is helpful to talk through with your child what the assessment is for and begin to have conversations about what ASD and/or ADHD are. 

If you are waiting for an ASD assessment, please make sure that you and your child review the information pack on our website called “Explaining ASD to your Child”

Assessment process
Our assessments typically take place over two sessions, followed by a feedback appointment where you will receive the results of the assessment:

Developmental History
When the young person reaches the top of our waiting list, parents will be invited to meet with a member of the Neurodevelopmental (ND) Service who will gather a detailed developmental history for the young person. This meeting may be in person, virtual, or over the phone. The assessment usually involves discussion of the screening documents and the Pre-Assessment Developmental History (PADH) form already submitted. It will also potentially cover some new questions about pregnancy/birth, early development, and face-to-face, education, as well as social communication, social interaction, and repetitive behaviours and/or attention, activity, and behaviour. If your child is in education, we will need to speak to their school to gather information about their presentation in a school setting. In some instances we will also need to carry out a school observation in order to get further information about your child’s presenting needs within this setting.

Final Assessment 
The assessments for Autism Spectrum Disorder (ASD) involve meeting with up to 3 members of the Neurodevelopmental (ND) Service team for an interactive session (usually face to face in one of our clinics) using the Autism Diagnostic Observation Schedule (ADOS).  assessment tool. The team will do some activities (e.g. games, puzzles, play) with the young person and will chat with them about a range of topics. This is usually done 1:1 while the parent waits in the waiting room but can be adapted if a young person is anxious about separating. Usually, this final assessment appointment is offered 2-3 weeks after the developmental appointment, but this can vary. For example, if further information is needed (e.g., additional information from school) then the final assessment appointment may be postponed until after this additional information has been collected.

The assessments for Attention Deficit Hyperactivity Disorder (ADHD) involve meeting with a team member for an assessment, in which the member of staff will observe potential ADHD behaviours as well as speak to the young person directly about their activity, attention and behaviour.

For joint ASD and ADHD assessments, these above appointments are often combined into one session.

It is important to be aware that at each stage of the assessment, the team will make a decision regarding whether the young person’s presentation is suggestive of ASD, ADHD, or both. If it is decided at any stage that the young person’s difficulties could be better explained by other factors, the assessment will not continue and the young person may be offered alternative support and/or will be discharged from the Neurodevelopmental (ND) Service.

*Please call us on: 0300 222 5856 if you are not able to attend an assessment appointment that has been offered to you. Unless there are exceptional circumstances, if an assessment appointment is not attended, and you have not cancelled or rescheduled within 24 hours of the appointment, your child will be discharged from the ND Service.

Feedback appointment  
Following assessment, a multi-disciplinary team discussion will take place and a decision will be made as to whether the young person meets the DSM-5 diagnostic criteria for a diagnosis. You will then be offered a feedback appointment to discuss the results of the assessment. Usually, this feedback appointment is offered 2-3 weeks after the final assessment appointment, but this can vary. For example, if further information is needed before a decision can be made (e.g., additional information from school, or a school observation) then the feedback appointment won’t happen until after this additional information has been collected. After the feedback appointment, the clinicians will prepare an assessment report which will be sent to you and your child’s GP; we also strongly advise you to share a copy of this with your child’s school (if they are in education).

Next steps and what happens after the assessment 
Our Neurodevelopmental (ND) Service works alongside alliance organisations as part of the Mindworks team to offer support and advice following the completion of our assessments. We will therefore give you details of and signpost you to relevant support based on the outcome of our assessment. Please see the website for more information. Your child will then be discharged from the SABP part of the ND Service.

Waiting times
Currently, the waiting times for assessment are very long and children are waiting between 2-3 years for an assessment (from the point of the referral being accepted by the CYPS ND Service). We hope that in the meantime, support can be put in place at home and school to address the needs the young person is presenting with. Please see our website for advice on support strategies that may be beneficial.

We would also recommend that you reach out to the below services for support where needed.

If you have concerns about difficulties related to neurodevelopmental need or want advice on support available
Mindworks Neurodevelopmental Service's out-of-hours phone line also provides advice to parents and carers who are struggling with behaviours or difficulties which could be related to neurodevelopmental needs, such as ASD or ADHD. Skilled and friendly advisers will talk through with families ways of calming down difficult situations, as well as possible coping strategies on 0300 222 5755 (5pm until 11pm, Monday - Sunday, 365 days a year).

If you have concerns about mental health or risk
If your child is receiving mental health support from a CYPS Community Team and you are concerned about their mental health presentation or risk, then we would advise you to contact your local CYPS Community Duty directly (Monday – Friday, 9 am-5 pm):

• For South-West (Guildford/ Frimley clinic site), please call: 01372 216111
• For North-West (Chertsey clinic site), please call: 01932 587066
• For East (Redhill/ Leatherhead clinic site), please call: 0300 222 5850

For out of hours mental health crisis support, you can call the Emotional Wellbeing and Mental Health Crisis Line on 0800 915 4644 (24/7). For medical concerns, you are advised to contact your GP, NHS 111 or 999, depending on the urgency.

Should you have any concerns about your child’s mental health presentation or risk, and they are not receiving any mental health support from a CYPS Community Team, we would advise you to contact the Neurodevelopmental (ND) Service phone number on 0300 222 5856 and ask for the Duty Clinician.

If you find yourself struggling or feeling distressed with your thoughts and feelings, it can be helpful to create a plan to keep yourself safe. Read about how to create your own My Safety Plan here.