Neurodevelopmental Assessment Clinic (including autism assessment)

This page from Great Ormond Street Hospital (GOSH) describes the Neurodevelopmental Assessment Clinic and what to expect when you bring your child to a clinic appointment. The assessment focuses on the entire child and their strengths and weaknesses to provide a developmental profile. As well as a full medical examination, the following may be assessed: Unfortunately, we are not able to offer intervention through our service.

- learning abilities and potential (cognition)

- social and communication skills

- speech and language development

- daily living and functional skills

- behaviour concerns relating to ADHD and Autism spectrum disorder

- skills for motor planning and coordination

We aim to work closely with the child’s local team so that everyone involved in your child’s care has the same level of understanding of their strengths and weaknesses so can work jointly to follow through the recommendations made following the assessment. This will include liaison with professionals already involved in supporting your child and may involve outreach visits to the child’s home and school.

Children and young people up until the age of 18 years with known intellectual disability, sensory impairment or complex medical conditions including syndromes, genetic anomalies, stable epilepsy and cerebral malformations where the medical condition creates diagnostic uncertainty or where the local team require additional assessments to understand the child’s needs.

We see children and young people with complex neurodevelopmental presentations, including those where a diagnosis of autism spectrum disorder is being considered. We also see children where there are concerns about language disorders, behavioural and motor coordination problems and specific learning difficulties.

NAC referral form August 2022

The Neurodevelopmental Assessment Clinic offers MDT diagnostic assessments for children where complex needs lead to difficulty with completing local diagnostic assessments. This may include but is not limited to:

- global developmental impairment or intellectual disability

- hearing impairment

- long term hospitalisation/ medical needs impacting on access to education

- significant speech and language disorder

- genetic disorder or syndromes

- neurodegenerative disorders

Referrals are only accepted from Community Paediatric or CAMHS services, who have undertaken initial assessments of the child’s developmental or behavioural concerns and should be accompanied by previous reports to inform the team of which assessments have been completed and what support has been offered.

All children must have a named Consultant Paediatrician or Consultant Child and Adolescent Psychiatrist. Referral to our service must not be associated with closure of the case by local paediatricians or CAMHS services. Referrals should remain open to the referring team.

Where a second opinion ASD assessment is requested:

● We would expect that the referring team would have completed a detailed developmental history and initial developmental assessment and liaised with therapy teams and education before referral to our service

● For families where social care are involved the referring team should have liaised with social care

● Where behaviour concerns have been raised we would recommend that a team around the family is coordinated to ensure that there is a clear plan of support in place locally with named professionals for accountability and to enable clear pathways for communication

● We would welcome an invitation for our team to join the team around the family to enable us to clarify the role of our team in supporting the family’s needs.

We work closely with another team in the hospital called the Social Communication & Autism Spectrum Clinic. This is located within the GOSH Psychology and Mental Health Service (PAMHS) and is for children and young people in mainstream education, who require autism spectrum diagnostic assessment. This team has expertise in female autism, selective mutism and mental health disorders.

If we think that team is best suited to your child’s needs, we may transfer your referral to them, and you may therefore you might receive an appointment from them instead of us.

Exclusions

● Unfortunately GP referrals or self-referrals are not appropriate for this clinic. We would advise GPs to refer to local Community Paediatric or CAMHS services first, to ensure local support and understanding.

● For children referred internally (from other departments within Great Ormond Street) or from Consultant Paediatricians we will always liaise with their local Community Child Development team or CAMHS service to ask for their agreement, and clinical questions, before arranging to see the child. It may be more appropriate for the local team to carry out further assessment initially.

● We are unable to accept referrals for initial diagnostic assessments for ASD/ADHD where the primary reason for referral is to expedite diagnosis where local teams are unable to meet capacity/ long waiting times locally.

Timing of second opinion assessment.

From our experience when a diagnosis of autism has been concluded by local services, these differences in behaviour often remain evident to our team at the second opinion assessment.

We would therefore recommend for the family to work together with local services for a period of at least 12 months to help establish support for their child’s needs and to gain an understanding of what is meant by the term autism for their child. If uncertainty remains after 12 months, we would welcome a referral to our service accompanied by correspondence outlining an up to date contact between the family and the clinician. We would require the referral to be accompanied by evidence of the recommendations implemented and up to date information from education.

In all cases where a second opinion assessment is requested for a young person we would expect that the referrer has met recently with the family and reviewed the current concerns.

All referrals should be sent by post, or fax to the relevant consultant and service to the following address:

Wolfson Neurodisability Service
Level 10 Main Nurses Home
Great Ormond Street Hospital
Great Ormond Street
London
WC1N 3JH

Email: gos-tr.neurodisabilityreferrals@nhs.net

The referral must be accompanied by reports/assessments that have been carried out locally.

We aim to work with the child’s local team to ensure a shared understanding. Therefore, as part of our assessment process, we routinely liaise with local professionals who have been involved in the child’s care, including their health, education and social care.

Outreach appointments may be suggested, for example, at the local child development centre, nursery, school, or at home.

Local professionals are welcome to attend our appointments with parental permission.

Our reports are routinely shared with parents, the referring clinician, the child's GP and social care (if the child is known to social services). If it is in the child's best interest the report may also be shared with other relevant professionals.

Following assessments, recommendations are shared with the referrer so that the local team may continue to monitor and support the child’s progress. Unfortunately, we do not provide on-going therapeutic or medical intervention within this service.

We are unable to manage risk patients referred to our clinic. We expect risk/related behaviour to be monitored and treated locally. Referral to our service must not be associated with closure of the case by local paediatricians or CAMHS services.

If there are any new developments in relation to the child or the family in the local area please do provide us with any relevant information to ensure good communication between services. It is important that the referrer shares any safeguarding concerns with our team before we commence assessments and during assessments, should they arise.

For more challenging behaviour referrals can be made from local CAMHS services to the following services:

South London and Maudsley NHS Foundation Trust CAMHS

Forensic CAMHS (FCAMHS) at the Tavistock and Portman Clinic

The clinic team comprises Consultant Paediatricians, Specialist Registrars in training, Clinical Psychologists, Speech and Language Therapists and Occupational Therapists. Our team is sometimes joined by Assistant Psychologists and University placement students. Which team members attend the clinic appointment will vary depending on the aspects of your child’s development being assessed.

The Clinical Lead for the Neurodevelopmental Assessment Clinic is Dr Elaine Clark.

Some appointments within our assessment service will take place remotely, and others will be face-to-face on-site at Great Ormond Street Hospital, London.

Scheduling appointments

You will be contacted by our clinic coordinator Lydia Kyei to arrange an initial contact.

Lydia Kyei contact details0207 405 9200 ext 1142 or lydia.kyei@gosh.nhs.uk

If you are unable to keep an appointment, please inform the department at least two weeks beforehand as we can then offer the appointment to another child on the waiting list.

As so many children and young people require assessments with our team, we have had to introduce a policy whereby if a family cancels or does not attend two appointments in a row, we will close their referral and inform the referring doctor.

Initial family consultation

An initial contact will be made (usually by telephone) by a member of our clinical team to hear about your concerns in more details and to hear what you hope to achieve from our assessment. Where possible we also speak to your child to hear what questions they may have for our team.

At this contact we also confirm information about local services involved in your child's care and request permission to contact other professionals who know your child well.

After this initial contact you will receive a brief summary of the discussion and developmental questionnaires will be sent to you (parents) and to education staff to complete and return.

If your child is of school age, we will usually talk to one or both parents (or another adult who knows your child well) while they are being assessed. If your child is likely to want one of you to stay with them, it is helpful if the other parent could attend to talk to us about their developmental history to date.

You may wish to invite other professionals involved in your child’s care to the feedback session when all assessments have been completed. We will ask you for details of other professionals you might want to invite when you attend the first appointment.

Please bring reports on your child from their school or services that may be involved locally such as Speech and Language Therapy, Occupational Therapy or Educational Psychology. Alternatively these can be submitted by the My GOSH platform. MyGOSH

During each assessment appointment, we usually build in a short break for you and your child so please bring along snacks and drinks that you might want. It can also help to bring along your child’s favourite toy or game to help them feel more comfortable throughout the assessment process.

My assessment at GOSH visual story for children and young people

We will offer you and your child a series of appointments to carry out the assessments, with each appointment usually lasting for half a day or three to four hours. Sometimes we offer full day appointments, if necessary or helpful.

The assessment process takes place over a number of sessions depending on the age and needs of your child with formal and play based assessments to help the team understand your child’s struggles and strengths.

You will meet with a Consultant Paediatrician or a Paediatric Registrar to take a detailed history of your child’s early development history and family history. They will also talk to you about any medical concerns and may carry out a medical examination of your child.

The Clinical Psychologist will review previous learning assessments that may have been carried out on your child and if appropriate will carry out standardised assessments with your child. They may ask you to complete questionnaire , some of which will be sent to school for class teachers to complete.

The Speech and Language Therapist will talk to you about any current concerns you have about your child’s speech and language. Previous assessments will be reviewed and, if helpful, further assessments will be carried out in clinic.

The Occupational Therapist will discuss your child’s current functional skills and assess their ability to carry out age appropriate self-care and school based tasks. The session may also include an assessment of your child’s motor abilities and consideration of possible sensory based difficulties that may be impacting on your child.

As part of the assessment process, we may contact your child’s education setting (nursery or school) to liaise with either their class teacher or SENCO for additional information about various aspect of your child’s school life. In some cases we may carry out an observation of your child in the school setting.

Please note part of the assessment process may involve taking video recording of your child. Consent will be obtained in advance of this. This video recording would be saved as part of your child’s medical record.

The feedback session will be planned for when all the assessments have been completed and will be attended by as many members of the team as possible. We do encourage, where appropriate, for young people to attend feedback. We shall discuss with you whether it would be appropriate for your child to attend the feedback session. You can also ask for local health professionals or teaching staff involved in your child’s care to attend.

The clinic team will discuss all the results with you (and your child), answer any questions and make a series of recommendations.

In some cases, the recommendations may involve further investigations such as an MRI scan, EEG scan or blood tests, including genetics. These may be arranged at GOSH or through your local team. If further investigations are needed, we will see you at another appointment to feedback the results.

After completion of all assessments and following feedback, within three weeks or so, we will send you a full report of the assessment findings and recommendations, with copies sent we routinely send copies to the referring doctor and other professionals involved in your child’s care. We do not routinely offer a further appointment following the full report so we will usually discharge your child from the service at this point.

EHCP- Our reports may be submitted to support EHCP process or for Disability Living Allowance. More detailed forms for EHCP or DLA should be completed by the child’s Community Paediatrician or Child Psychiatrist.

Discharge - As a specialist assessment service, it is our usual practice following our assessment to discharge the child and family back to the referrer to manage the child’s care locally, providing them with support and advice.

Review - in some cases where diagnostic uncertainty remains a review at a later date may be offered to monitor progress as the child matures.

Transition - As children are not kept under regular review by our service, we are unlikely to be involved in transition to adult services. The local team will carry out transition procedures according to local protocols.

This helps the team evaluate the service provided and increase our knowledge about neurodevelopmental disorders:

We keep a secure registered database of clinical information about children attending the clinic which we use to improve the quality of care we provide. This information is not shared for any other purpose and is anonymous so no individual child can be identified.

We also use information collected during appointments to help us understand more about the development of children with complex neurodevelopmental disorders. This information is also used without any identifying details and helps us to improve our knowledge of these complex conditions.

In addition, we are also involved in various research projects at any one time – these are all assessed by an independent panel to make sure that each project is safe and ethical. We may ask you if you want to learn more about particular research of relevant to your child. This may include some videos/ photos being used to support teaching. We would always obtain consent from the child’s parent or Guardian if they were involved in research.

You can contact our clinic coordinator, Lydia Kyei on 020 7405 9200 ext 1142