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The East & West Suffolk NDD Pathway
If you suspect that your child has a neurodevelopmental condition such as Autism or ADHD, it can be an anxious time.
In recent years, referrals for autism and ADHD assessment have greatly increased, causing waiting times both nationally and locally to be at an all-time high. We understand the frustration this can cause and want to give you as much clarity as possible on what to expect throughout the process, how to get support while you wait, and some other resources that may support you and your young person through the journey.
The East & West Suffolk Neurodevelopmental Pathway is for children and young people aged 5-18 who live in East and West Suffolk who are suspected of having Autism or Attention Deficient Hyperactivity Disorder (ADHD). The pathway is not able to assess other neurodevelopmental conditions at the present time, and if you suspect your child has a different neurodevelopmental condition (such as Obsessive Compulsive Disorder or Tourette's), you should contact your GP in the first instance.
For children under the age of 5 in East & West Suffolk there is a separate pathway. Please contact your GP or speak to your Health Visitor to discuss whether they would recommend this option if your child is under 5.
There is also a separate pathway for children and young people who live in Norfolk & Waveney.
Who can refer to the Pathway?
To access the East & West Suffolk Neurodevelopmental Pathway, families need to collaborate with a practitioner who can act as the 'Lead Professional' for the referral process. We are not able to accept referrals directly from families at this time.
Who should my lead professional be?
The lead professional involved in your child's care is typically someone from their education setting, such as a teacher or special needs coordinator (SENCO). However, it could also be a health visitor, school nurse, GP, social worker, or mental health practitioner. If the lead professional is not from your child's education provider/school we recommend that the form be completed jointly with them to include information about your child's educational background.
What if my child is not in school?
If your child is being home-educated or not attending school, we also welcome referrals from professionals who are familiar with your family's situation. We have created a separate ‘Alternative Education’ referral form which can be completed for families whose child is home educated or not in education to ensure that the neurodevelopmental pathway is accessible by all.
What does the referral form ask?
The referral form process is divided into two parts:
Part One is for the parents or caregivers to complete, which captures details and insights into your child's needs at home
Part Two - for professionals and others to complete, capturing their understanding of your child's needs.
You can download the referral forms and guidance below.
What happens once the referral has been sent?
Your referral forms will be reviewed to see if we have all the information required. If not; the forms will be returned back to the referrer. If the referral forms are complete they will go on to be clinically screened and triaged. If an assessment is not clinically indicated the referrer will be informed of the decision and next steps. If the referral is clinically appropriate for assessment the referral will be added to the waiting list for assessment. While you wait for an assessment there are various support services available; more detail on these are given below.
Referral Forms and Guidance (East & West Suffolk)
- E&W Suffolk NDD Referral Criteria and guidanceDOCX135KB
- E&W Suffolk NDD Pathway - Parent Carer Referral FormDOCX157KB
- E&W Suffolk NDD Pathway - Lead Professional Referral FormDOCX143KB
- E&W Suffolk NDD Pathway - Alternative Parent Carer Referral Form (if child not in school)DOCX114KB
- E&W Suffolk NDD Pathway - Alternative Lead Professional Referral Form (if child not in school)DOCX114KB
Suffolk have commissioned six organisations to provide support to families who are on the NDD Pathway. Four of these accept self-referral from families and are listed below.
1. Family Action
Eligibility: Support for parents and carers of children and young people aged 5-25 who are displaying signs of / have received a diagnosis of a neurodivergent condition.
Areas: Must be registered with a GP in the West Suffolk areas of Forest Heath, Bury Town or Bury Rural.
Support offer includes: Training courses for families, liaison with other agencies to facilitate additional support, post-diagnosis support, day-to-day advice and strategies, peer support networks and awareness training.
Contact: Family Action West Suffolk / wsuffolk@family-action.org.uk / 01284 636655
2. BEANS (Belong, Enrich, Adapt, Neurodiversity, Support) / Access Community Trust (ACT)
Eligibility: Children and young people aged 5-18. Once the young person has been referred, the service also works with parent carers and siblings.
Areas: East and West Suffolk (excluding Waveney) from sites in Bury St Edmunds, Ipswich and Woodbridge.
Support offer includes: face-to-face and online emotional and wellbeing support, social groups for young people, parents and siblings, activity sessions, lived experience forum, workshops and advice on a range of topics.
Contact: www.accessct.org/beans / heart@accessct.org / 01502 527200 (Option 0)
3. Families Together Suffolk
Eligibility: Children registered with a Suffolk GP and living in the below areas, up to the age of 11.
Areas: Ipswich and West Suffolk.
Support offer includes: home visits, online and face-to-face support groups for parents, training programmes, social and activity groups for children.
Contact: www.familiestogethersuffolk.org.uk / info@familiestogethersuffolk.org.uk / 01379 678552
4. Suffolk Family Carers
Eligibility: Support to whole family where there is a child/young person 0 to 25 years in the family, who is awaiting assessment for / has been diagnosed with a neurodevelopmental difference.
Areas: East and West Suffolk from their base in Claydon near Ipswich.
Support offer includes: short term whole-family workshop sessions, advice and guidance, telephone support.
Contact: www.suffolkfamilycarers.org / 01473 835472 / 01473 835477
The organisations above can also refer on to the two further specialist services below if deemed appropriate:
Noise Solutions, who work Suffolk-wide with young people aged 11-25, to create digital music-based projects and stories, and
Green Light Trust, who offer woodland-based activities for young people aged 5-25 from their sites in Martlesham and Lawshall.
The clinician who assesses your child may be a paediatrician or speech and language therapist. Specialist nurses and occupational therapists may also provide input. Usually, the appointment is with one professional but sometimes there may be more than one person in attendance and this can be called a Multidisciplinary Team Meeting (MDT). In all cases, the aim of the pathway is to conduct a comprehensive, specialist assessment in line with National Institute of Clinical Excellence (NICE) guidance. Following this assessment, it will be determined if your child or young person meets the clinical diagnostic criteria for a diagnosis of ASD and/or ADHD.
The assessor will have received your observations with the referral but will also ask you to tell them about your concerns, so it may be useful to keep your own copy that you can refer to. They may talk to your child and try to engage them in conversation or get them to participate in some simple games or activities to observe their responses. They will also consider reports and observations from school or other education settings.
Once a decision has been reached there will be a feedback session to explain the results of the assessment and what will happen next.
There is a separate pathway for families living in Waveney, as their care comes under the Norfolk & Waveney NHS Integrated Care Board.
Keep a diary
When you are speaking with professionals about your concerns, or you are providing information for a referral it helps to have kept a diary of your experiences and why you are concerned.
Don't compare your child or young person to someone else's
The way your child or young person's development progresses is different to another. Neurodevelopmental disorders are a spectrum and whilst there are distinctive characteristics that must be present to obtain a diagnosis, how they present in your child or young person and the impact they have on their development will differ between individuals.
Talk to others and try not to become isolated
Families often say they felt alone when their child or young person was initially identified as having a neurodevelopmental need, especially where the child or young person displayed challenging behaviour. There are several voluntary organisations across Suffolk that are ran by parents of children with a neurodevelopmental disorder who will be happy to have a chat with you about their experience and what techniques they found helped their child or young person.
Take notes
When you are attending appointments with clinicians you will likely be provided with a lot of information, which can be overwhelming. If you can, take a pen and paper and write down anything of significance as this will help you remember at a later point
Ask questions
You will have lots of questions throughout the process and it is never a wrong time to ask them. Sometimes it is helpful to write these questions down, so you do not forget them when you are attending an appointment with clinicians. If there is more practical help you are needing, you can access services through the SEND Local Offer. Even if the person you speak to doesn’t know the answer, they will know someone who will.
Access training courses and resources
Lots of organisations provide free training for parents and carers of children and young people with neurodevelopmental disorders and how to meet their needs. Some are specific to a particular diagnosis such as ASD or ADHD, but others are topical such as sleeping or toileting. You will also find lots of tips and advice in the Suffolk Resource Pack or can attend one of Neurodiversity parent Workshops.
You don't need a diagnosis to access support
The prevalence of neurodevelopmental disorders is increasing, this means that the length of time you are waiting for a diagnosis may be long. However, access to support for you and your child or young person's needs is not reliant on a diagnosis.
Other sources of support
We have compiled a library of local and national resources and agencies who aim to help support young people with neurodiversity and their families. You can find this on our Autism, ADHD and NDD Resources page.