Neurodevelopmental Assessment Service

This service provides specialist expertise in the assessment and management of children and young people up until the age of 18 years with complex neurodevelopmental disorders. The main reasons for referral are diagnosis, second opinion, and educational/therapy/behavioural advice.

The assessment focuses on the entire child and their strengths and struggles to provide a developmental profile including:

• learning abilities and potential (cognition)
• social and communication skills
• speech and language development
• daily living and functional skills
• behaviour concerns such as ADHD and Autism spectrum disorder
• Skills for motor planning and coordination

As a tertiary care hospital, all children who attend Great Ormond Street Hospital must be referred via local Consultants who are directly involved in the support of the child's developmental or behavioural needs. This might be a Community Paediatrician or a Consultant in Child and Adolescent Psychiatry.

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.

If a referral is received from another source, including internal referrals from other services within Great Ormond Street Hospital. Agreement and additional information from the child’s local Community paediatrician is sought.

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

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 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.

link to resources

Children and young people with learning disabilities

The clinic team comprises a 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.

Photographs

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.

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

Lydia Kyei contact details 0207 405 9200 ext 1142 lydia.kyei@gosh.nhs.uk

Initial contact will be made by a member of our team to meet with you virtually in advance of the assessment day to discuss the referral.

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.

After the necessary assessments and appointments are completed, a feedback session will be offered remotely or face to face, to discuss the results and outcomes of our assessments.

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.

Your child may be accompanied by their parents or Guardians or any other family member where their contribution is necessary.

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.

The assessment process takes place over a number of sessions depending on the age and needs of your child.

Initial sessions involve formal and play based assessments to help the team understand your child’s struggles and strengths.

During assessments questionnaires may be used to help understand more about your child. Some questionnaires are for parents, the others will be sent to school for education staff to complete.

Your child’s assessment process may include:

• 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 what you hope to achieve from our assessment. At this contact we also confirm information about local services involved in your child's care.
• Further contact will be made to take a detailed history of your child’s early development history and family history by the Consultant Paediatrician or a Paediatric Registrar. 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 questionnaires, 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.

Please note part of the assessment process may involve taking video recording of your child with the permission of you and your child . This video recording would be saved as part of your child’s medical record. Consent will be obtained for this during clinic. We will not video your child without consent and you may opt out of video if you are not comfortable with this.

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.

‘As a specialist assessment service, we discharge following our assessment to the local teams to manage the child’s care locally, providing them with support and advice.’

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

• 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.

https://www.autism.org.uk/

www.aspergerfoundation.org.uk

Asperger Foundation Tel: 020 8441 0404

https://www.mencap.org.uk/

Information and advice for parents, carers and family members of someone with a learning disability.

https://rarechromo.org/

https://contact.org.uk/

https://councilfordisabledchildren.org.uk/information-advice-and-support-services-network

Information and Advice Services have a duty to provide information, advice and support to disabled children and young people, and those with SEN, and their parents. There should be an IAS Service in every local authority. From this page you can find the contact details of your local service.

https://www.gov.uk/disability-living-allowance-children

Access to forms and information on disability living allowance.

https://www.familyfund.org.uk/

If you’re raising a disabled or seriously ill child, we might be able to help. Grants for essential items. Ipad access and training

https://contact.org.uk/advice-and-support/social-care/

http://www.nordoff-robbins.org.uk/

Nordoff Robbins is a national music therapy charity dedicated to transforming the lives of vulnerable children and adults across the UK. They use music therapy and other music services to help a range of people with a range of challenges.

http://carolgraysocialstories.com/

Transition

http://www.natspec.org.uk/

Natspec is the membership association for Specialist Colleges. Our colleges give young people with a learning difficulty or disability the chance to become more independent and to learn in an exciting environment with personal support. Natspec believes that a place at a specialist college should always be an option that is available to young people and their parents

NICE guidance references

https://www.nice.org.uk/Guidance/CG128

National Institute of Clinical Excellence: Autism diagnosis in children and young people: Recognition, referral and diagnosis of children and young people on the autism spectrum

http://www.nice.org.uk/guidance/CG170

National Institute of Clinical Excellence: The management and support of children and young people on the autism spectrum