NDP Family Training and Navigation Service

NDP Family Training and Navigation Service

Support at each stage along the neurodevelopmental pathway to help families manage the challenges that children and young people face. This service is for families in Brighton & Hove and East Sussex.

What is the NDP (Neurodevelopmental Pathway)?

Mum with arm round two childrenThe neurodevelopmental pathway (NDP) describes the different steps that a child or young person goes through from referral to the diagnosis of a neurodevelopmental condition (or conditions). It also includes those children and young people who are assessed but do not get a diagnosis.

The conditions covered by the NDP in Brighton & Hove and East Sussex include Autistic Spectrum Condition (ASC), Attention Deficit Hyperactivity Disorder (ADHD) and Tics/Tourette Syndrome.

In East Sussex, the NDP also includes Foetal Alcohol Syndrome (FASD), learning disabilities/developmental delay, social communication concerns and sensory processing disorder.

What is the NDP Family Training and Navigation Service?

The NDP Family Training and Navigation Service provides support at each stage along the neurodevelopmental pathway to help families support children and young people with the challenges they face.

NHS Sussex teams in Brighton & Hove and East Sussex commission Amaze to coordinate this service for our local parent carers.  It complements a range of NDP services and other support across health, education and social care in both regions.

What kind of support will we get?

There are two parts to the service:

  • The Navigation Service – ensuring families have access to information and can find and take up available support appropriate to their needs and their stage within the NDP. This might be, for example, through giving parent carers information about support networks and resources on the neurodevelopmental conditions
  • The Family Training Service – identifying and providing a programme of training, family education and support, produced and delivered by expert parents, individuals with lived experience, and professionals. For instance, we might offer training to support parent carers while their child or young person is waiting for an assessment, or post diagnosis if a neurodevelopmental condition has not been diagnosed, but traits have been identified.

The service does not assess your child’s needs or provide crisis support, and it is not an ongoing keyworker-style service.

If you are looking for specific information and advice around education or benefits, please contact our SENDIASS Advice Line. SENDIASS provides information, advice and support on education, health, social care and any other issues related to SEND.

Who can use the service?

The NDP Family Training and Navigation Service is for families with children and young people on the neurodevelopmental pathway (NDP).  Your child does not need to have a diagnosis to get support and life does not need to have become difficult.

The conditions covered by the service vary slightly for East Sussex and Brighton & Hove families.

Who can use the service in Brighton & Hove?
The service is open to parent carers of children or young people under 18 who are registered with a Brighton & Hove GP and/or residents of Brighton & Hove and at one of these stages on the neurodevelopmental pathway for assessment for Autism, ADHD, or Tics/Tourette Syndrome:

  • At the point a referral has been made to Seaside View Child Development Centre or CAMHS to request an assessment
  • When the assessment has been confirmed, and while you are waiting for your first appointment with Seaside View or CAMHS
  • Between stages of assessment
  • At or around the time of diagnosis
  • At or around the time of non-diagnosis where needs and traits are identified but your child or young person does not reach the threshold for diagnosis

The service is also available post diagnosis, for families who:

  • want more understanding about living with a neurodevelopmental condition
  • need information on specific aspects of supporting a child or young person’s learning and development
  • are at times of change and transition such as between different stages of education or teens and approaching adulthood
Who can use the service in East Sussex?
The service is open to parent carers of children or young people under 25 who are registered with an East Sussex GP and/or residents of East Sussex, and at one of these stages on the neurodevelopmental pathway for assessment for Autism, ADHD, Foetal Alcohol Syndrome (FASD), learning disabilities/developmental delay, social communication concerns, sensory processing disorder, tics/Tourette syndrome:

  • At the point you are asking a professional working with your child for referral to the NHS
  • A referral has been made to the NHS for assessment
  • When the assessment has been confirmed, and while you are waiting for your first appointment
  • Between stages of assessment
  • At or around the time of diagnosis
  • At or around the time of non-diagnosis where needs and traits are identified but your child or young person does not reach the threshold for diagnosis

The service is also available post diagnosis, for families who:

  • want more understanding about living with a neurodevelopmental condition
  • need information on specific aspects of supporting a child or young person’s learning and development
  • are at times of change and transition such as between different stages of education or teens and approaching adulthood

How can you access the service?

You can refer yourself to the service  or ask a professional who works with your child or young person. This could be through local education, health or social care services.

Which professionals can refer your family?

  • Seaside View Child Development Centre (Brighton & Hove) or East Sussex Healthcare Trust ESHT
  • CAMHS (Child Adolescent Mental Health Service)
  • Your GP practice
  • Your health visitor or school nurse
  • Your child’s NHS speech and language therapist, occupational therapist or physiotherapist
  • Your child’s Children’s Centre
  • Your child or young person’s school, college, or nursery
  • BHISS (Brighton & Hove Inclusion Support Service) or ISEND (East Sussex)
  • Ethnic Minority Achievement Service (EMAS) or English as an Additional Language Service (EALS)
  • Front Door for Families and Integrated Team for Families (Brighton & Hove) or Single Point of Access SPOA (East Sussex)
  • Social Care Services

How will you contact me?

We will contact you by phone or email. This may be a one-off contact for signposting, or involve short term follow up to match you to relevant training.

Other support

Amaze offers a range of different services for children and young people with additional needs and their families across Sussex, including an advice line, workshops, social and support groups and disability benefits support. Find out about Amaze’s services.

You can find out about other local SEND services on Brighton & Hove’s Local Offer and East Sussex’s Local Offer. The Local Offer is the council’s online directory of local services for families of children with SEND.

Further information

autism

Videos

Written resources

Local support

Brighton & Hove

  • Brighton & Hove Inclusion Support Service (BHISS) – work with schools to support children with autism spectrum conditions (ASC) and social communication disorders. Also run coffee mornings and workshops for parent carers of children with ASC.
  • mASCot – Brighton & Hove and Sussex support group for families who have autistic children, or children with autistic traits
  • Brighton Pebbles – a Facebook group for parents and carers of children with any disability, especially those who find it difficult to access mainstream activities, for instance, those with severe autism or behaviour that challenges
  • Amaze Face 2 Face autism group– for parents of children under 8 with a diagnosis of ASC or awaiting diagnosis.

East Sussex

  • ISEND CLASS+ – support for families with children with autism including advice, coffee mornings, workshops and short term support at home. Part of the ISEND CLASS service that gives specialist support to schools in East Sussex for 4-16 year olds with autism, communication and learning difficulties. Call 01273 336887 or visit the CLASS+ Facebook page
  • Amaze Face 2 Face autism groups for East Sussex parent carers of children with ASC or going through assessment – Kids Squad is for parent carers of children with ASC up to 10 and Escape is for parent carers of children aged 11+.
  • Aspens – family support groups and clinics, parent carer courses and workshops and a variety of groups for children and young people with autism across East Sussex. They also run holiday clubs.
  • Autism Train – training courses on for parent carers of children and young people with autism in East Sussex.
  • Spectrum Autism Support – helps young people with autism aged 0 to 19 to join in activities and their community independently. Run skills award course and groups for 10-18 year olds. Call 01424 724700 or email spectrum@eastsussex.gov.uk

ADHD

Videos

Written resources

Parent support groups

  • ADHD Aware – a peer support group for parents with a child with ADHD, or ADHD traits.  Parents meet online the second Tuesday of every month, between 7-9pm. ADHD Aware also have a Facebook group called Brighton Parents of Children and Young People with ADHD.
  • Brighton Pebbles – a Facebook group for parents and carers of children with any disability, especially those who find it difficult to access mainstream activities, for instance, those with severe autism or behaviour that challenges

Tics/tourette syndrome

Videos

Written resources

Support groups

  • Tourette’s Sussex is a Sussex based Tourette’s support group that’s run by parents of ticcers who also work professionally within the Tourette’s community. 

resources

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