The 3 NHS organisations across Hertfordshire that carry out Autism and ADHD assessments for children and young people have been working together to design a new pathway which aims to make the diagnostic process more consistent, efficient, and fair for all families.
In order to test out this new pathway we are planning to pilot it with a small number of children and young people referred in for assessments for Autism and/or ADHD. This new pathway is one part of a wider programme of improvement that all three trusts are committed to. Alongside this, significant investment has been made across the county to actively reduce the existing backlog of children and young people waiting for an assessment.
A small number of children and young people will be selected to take part. We will need to ensure we have tested out all age groups and a selection of referrals that are for Autism, ADHD or both. There is nothing a parent, carer, school, or GP can do to influence whether a child is chosen. We want to be transparent about this so that families feel reassured that the process is fair.
Being selected does not automatically mean a child will go forward for a full assessment. Every child who takes part will still go through our triage process, which makes sure the right pathway is identified for that young person.
We understand that many families have been waiting a long time, and we know how difficult this is. We need children to take part in this pilot as they are helping us to test a new way of working that we hope will mean shorter waits for everyone going forward. We are also working hard to reduce waits for those already on our waiting lists. If you need support while you are waiting then The Neurodiversity Support Hub is available to help you – your child does not need a diagnosis to access this support. They can offer support, advice and strategies that work best for your family.
If you have any further questions then we have produced a list of frequently asked questions which you can access below. If you are interested in what the new proposed pathway will look like then we have produced a diagram which shows the current pathway and the new proposed pathway (pdf 134kb). (Please note that this document is not accessible to screen-readers. If you need an accessible version please email localoffer@hertfordshire.gov.uk).
How will children and young people be selected to take part in the pilot?
Children and young people will be selected based only on their age, assessment requirement, and geographical location. You cannot apply to be part of the pilot, or ask for prioritisation in order to take part. We will make sure that we have chosen a broad cross-section of ages and potential diagnoses to ensure we can fully test the new pathway.
Does being selected to take part in the pilot guarantee that my child will have an Autism or ADHD assessment?
No, not all children and young people who are selected to take part in the pilot will go on to have a full assessment. All referrals will be triaged and if at that stage it is not deemed appropriate for the child or young person to have an assessment then they will be redirected to other support as appropriate. You will be kept informed throughout the process.
What happens if my child is not selected to take part in the pilot?
If your child or young person is not selected to take part in the pilot then they will continue on the current pathway and will join the waiting list for the Trust in your geographical area (East and North Herts Hospital Trust (Autism and ADHD), Hertfordshire Community NHS Trust (Autism only South and West Herts), Hertfordshire Partnership Foundation NHS Trust (ADHD only South and West Herts)
Will choosing not to take part in the pilot affect my child’s place on the waiting list or future care?
If you choose not to take part in the pilot this will have no impact on your child’s place on the current waiting list or any future care that they receive.
My child has been selected for the pilot - I have another child waiting for assessment — can they also be considered for the pilot?
Unfortunately we cannot use any children who have already been through the triage process and are on an existing waiting list for the pilot because this would not allow us to test out the full process. Where more than one child is referred from the same family we cannot guarantee that both will be considered for the pilot.
What should we expect during the assessment process?
The assessment process will depend on whether your child has been referred for ADHD only, Autism only, or both. We have been working hard to reduce the number of appointments that it takes to undertake the diagnostic process and so some children and young people will be able to receive a diagnosis in the first appointment, whereas some others will require more than one appointment depending on their complexity. Some of these appointments may take place over the phone or via a video call, where this is appropriate.
How long will the pilot assessment process take?
For the majority of children and young people the assessment process as part of the pilot will be completed in a matter of weeks. If a young person requires ongoing follow-up or medication management and titration then these processes will carry on as normal through your local hospitals current processes. This will not be completed as part of the pilot.
Can I choose which clinician my child sees as part of the pilot?
No, you will not be able to choose which clinician sees your child or young person, however whoever sees your child or young person will be fully trained to undertake the assessment process, and the NICE / NHS guidance will still apply.
Will the assessment still be recognised if it is completed through the pilot?
Yes, all of the assessments that will be completed will be undertaken by NHS professionals following NICE guidance
How will medication and follow-up appointments be managed if my child needs medication?
Medication and follow up appointments will be managed by your local hospital trust outside of the pilot. if your child requires medication after assessment, this process will be managed separately to the pilot and you will be advised of how this will work after your child or young person’s diagnosis is confirmed. If your child or young person is seen and diagnosed by a clinician outside of your nearest hospital trust for the pilot you may be transferred back to your local hospital for your child or young persons medication titration and management
What happens after the assessment is completed?
You may have an appointment with a clinician to discuss the diagnosis you will then receive a report which will give the details of any diagnosis that has been made. If your child or young person does not require any further follow up appointment for medication or any other co-occurring medical conditions then they will be discharged from the service. If medication is required or further follow ups for co-occurring medical conditions then these will be arranged and will continue as normal outside of the pilot.
Will information from the pilot be shared with my child’s school or GP?
The outcome of the assessment will be shared with your child or young person’s GP, as it will form part of their medical records. The report will not be shared directly with your child or young person’s school, however, you may wish to share the summary report with the school to help with making reasonable adjustments or to help your child or young person’s teachers understand their needs better.
Will interpreters or additional support be available for families who need them?
If interpreters are required to enable an assessment to take place, or reasonable adjustments / support is required we will do our best to accommodate these needs. If you child is selected for the pilot, and you or your child require additional support, please let us know when you receive your letter.
Can we leave the pilot after agreeing to take part?
Yes you can change your mind about taking part in the pilot at any time. If this is the case please ensure you let us know as soon as possible and so that your child or young person is added back onto the original waiting list, and we can identify another child who may be able to take their place. If you decide to leave the pilot, your child will not lose their place on the original waiting list.
Will families be asked to provide feedback about their experience of the pilot?
Yes. Feedback is critical to enable us to see what has worked well and what needs further improvement before we start rolling out the new assessment pathway to all new referrals. Parent carers will be asked to commit to attending a feedback session once their child or young person’s assessment is complete, which may be a one-to-one conversation or as part of a small focus group.
Who can I contact if I have questions or concerns about the pilot?
If you have any questions about the pilot please email hct.hertsneurodiversitytransformation@nhs.net and someone will get back to you as possible.