The East & West Suffolk NDD Pathway

How to get support in East or West Suffolk if you are concerned about Autism, ADHD or Neurodevelopment

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.

Cover image of a parent helping a child on a bicycle

The material in this online resource was originally created by three organisations, Essex Family Forum, Send the Right Message and MyOTAS.

Suffolk has reproduced this document with their permission, replacing Essex content with Suffolk local information gathered from a range of sources, and supported by our Suffolk parent Carer Forum.

Written permission is required from Essex Family Forum to distribute or for any duplication that would commercially exploit the content.

The graphic design was produced by Essex County Council.

Download the 'Supporting your Neurodivergent Child' pack here

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)

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.

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.

Services and Support

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: Needs led advice and guidance offered to any family member by our trained Family Advisors, via phone or in the community. Direct work with children and young people, including sibling carers. Condition specific workshops and courses. Parent carer drop in’s for peer support. Respite activities, holiday activities, friendship club and social groups for children and young people.

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 Solution

Eligibility: Anyone 11 to 25 years awaiting assessment for / has been diagnosed with a neurodevelopmental difference.

Areas: Suffolk

Support offer includes:

Noise Solution is a pioneering youth organisation that uses music technology mentoring with young people facing challenges in education and mental health. At Noise Solution, they've developed an award-winning relational approach designed to meet the basic psychological needs of the participants. Outcomes are a trusted relationship with an adult, built in a way that remodels success for them, building confidence and strengthening the relationships around them. Mentoring occurs face to face in the home or school, but additionally, through a secure digital platform. This platform means families and key workers can also remotely engage with multimedia highlights from every session, including powerful weekly audio and video reflections shared by the young people themselves.

Short video introduction here

Contact: www.noisesolution.org/ (01284) 771156

Green Light Trust ‘Natural Alternative’ Provision

Eligibility: Children and Young People in the Primary or Secondary age-groups awaiting assessment for, or have been diagnosed with, a neurodevelopmental difference.

Areas: West Suffolk (Bury St Edmunds area), Central Suffolk (Ipswich area)

Support offer includes:

Green Light Trust delivers our alternative provision ‘Natural Alternative’ to those on the NDD Pathway in Suffolk. Our offer consists of one-day-a-week weekly sessions running from 10am – 2.30pm, for 12 weeks.

The offer aims to engage children & young people in a range of outdoors activities and experiences in order to improve their wellbeing, self-confidence and social skills. Green Light Trust use a person-centred approach to work with participants to achieve what they feel will benefit them, and balance this through structured learning objectives and individualised targets throughout.

As part of the session’s participants will have the opportunity to engage in interacting with their woodland surroundings through group-focussed management tasks, nature recognition & identification, and play. In addition to this there are opportunities to learn and build on life skills such as taking part in the cooking of the campfire meal provided each session. Green wood working and Bushcraft are also activities that participants can choose to take part in, and our staff are always exploring other activities that mean we can engage and support participants through the power of nature.

Contact:

Please fill out an enquiry form on their website and a member of our team will be in touch with what to do next.

Download the East & West Suffolk NDD Pathway Parent Carer guide

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.

The East & West Suffolk NDD Pathway

Who can use the East & West Suffolk NDD Pathway?

Referral process and forms

What to expect during the assessment

Support for families living in Norfolk & Waveney

Advice from parent carers