What is Neurodevelopment?An image drawn by a young person representing what neurodiversity means.png

Neurodevelopment refers to the development of the brain that affects our behaviour, relationships, learning styles, stress management, organisation, emotions, problem-solving, and executive functioning skills.   Neurodevelopmental conditions, including Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD), describe people who present with differences in their neurodevelopment which affects how their brain works i.e. they are neurodivergent. Sometimes neurodivergent related needs are mistaken for other differences or environmental factors that could be impacting a child or young person. Where needs are best explained by neurodivergence, the identifying features will have been present from birth.

Some common traits associated with Attention Deficit Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD) can be found at Neurodevelopmental needs :: Mindworks Surrey (mindworks-surrey.org)

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 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 are 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 home and school long term to support presenting needs.

The neurodevelopmental referral pathway is currently under review for a system-wide change. Please read more about this here: Update on the Neurodevelopmental Diagnostic Assessment Pathway for children :: Mindworks Surrey (mindworks-surrey.org). Please note that diagnostic assessment requests no longer come from GPs as they do not know the young person as well as others.

For those currently under assessment, additional forms may be requested and can be found here

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

 

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.

Why is the ND service changing?  
We feel that it is important for young people to have their needs met at the earliest opportunity rather than a reliance on a diagnosis before interventions are put in place.  We know that by embedding interventions early can make a meaningful difference.  NICE (National Institute for Clinical Excellence) recommend that interventions should be embedded for a minimum of 10 weeks prior to a diagnostic assessment.

A referral was sent to Spoke before 7 September 2023 but I have not heard anything?
Due to a significant number of requests for support received, the triaging of these request (via Assessment of Need) is currently taking up to a year to complete. We apologise for this delay and are working hard to reduce this timescale.

A referral for my child/young person was made before 31 October 2022, and Access & Advice Team have sent me questionnaires to fill in  (eg: ASSQ, SNAPS).  What should I do?  
Unless directed otherwise by Access & Advice, please continue to complete and send in your completed paperwork as soon as possible.

I have sent in completed questionnaires to Spoke, what should I do?  
Once all relevant paperwork is received into ND Spoke from school/parents/carers (as per their request), the paperwork will be analysed by one of the clinical specialists and we will contact you once this has been completed. Some young people will be recommended for further ND assessment. Other questionnaires will not identify as neurodevelopmental as a primary need and further assessment will not be recommended at that time.  In this case, we will offer suggestions for advice and support.

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.

I am concerned that I need a diagnosis to support an application for an EHCP (Education Health and Care Plan), will this change affect my application? 
EHCPs are not based on any diagnosis, but focus on the presenting needs of a child or young person.  Having a diagnosis of any condition does not mean that any child or young person automatically receives an EHCP.

Once accepted for a full diagnostic assessment how long is this waiting time?
The team are currently completing final assessments for young people who have waited between 2-3 years. We are working hard to reduce this length of time as much as possible. As these are life long diagnostics it is important that each assessment is thorough in order to make a clinical judgement on the outcome.

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) is able to be involved in the decision making about their assessment. We will ask about 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, 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: 01372 216 555 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 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 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 need, 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, 9.00am-5.00pm):

  • 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 01372 216 555 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.

Partners within the Neurodevelopmental Service and additional support