Neurodiversity Profiling Tool ... UPDATE... PCF CWaC’s Ongoing Role in a Tool Built With Families
Update - June 22nd 2026
PCF CWaC has been part of the Knowing Me Neurodiversity profiling tool journey from the very beginning and that involvement continues as the work moves into an exciting new phase.
From the early co-production stages through to where we are now, parent carer voice has been central to shaping this tool. We’re proud that families from Cheshire West and Chester have been part of that process, and we want to keep you updated on what’s happening next.
The evaluation continues
The Centre for Autism, Neurodevelopmental Disorders and Intellectual Disability (CANDDID) leads the evaluation work for the programme, and an end-of-year evaluation report has now been completed. If you’d like to read it, you can request a copy by emailing the study team at cwp.ndprofilestudy@nhs.net.
For 2026/27, the next phase of evaluation gets underway, focused on making sure the tool works in practice, measuring its impact, and demonstrating how helpful it really is. The study team will evaluate the co-produced tool again as part of this phase, and PCF CWaC will continue to be involved.
The Neurodiversity Hub
Alongside the Knowing Me tool, a Neurodiversity Hub for Children and Young People aged 0–25 is being developed through Live Well Cheshire West. The Hub will bring together information, resources and services to support parents, carers and young people all in one place. https://www.livewell.cheshirewestandchester.gov.uk/Categories/5616
Co-production has been at the heart of what’s already available, with information and resources developed alongside parents, carers and professionals. More services and resources are coming soon, and feedback is very much welcomed at this stage. If there’s anything you’d like to see included, you can contact emma.walker@cheshirewestandchester.gov.uk or visit www.livewell.cheshirewestandchester.gov.uk.
The MS Forms version is now live
A big milestone: the digital version of the Knowing Me profiling tool is now available as an MS Form. This has been a complex and lengthy piece of development work, and it’s brilliant to see it live. The next step is to get as many people as possible using it and sharing their experience, so it can be tested and trialled ahead of more advanced digital developments.
A Power BI dashboard is also in development to help parents, children, young people and professionals interpret profiling data more clearly and provide visual summaries more updates to follow on that.
Training reach growing
355 professionals have now been trained on the Knowing Me tool in Cheshire West and Chester.
From June 2026, ADDvanced Solutions is coming on board as the new training provider, bringing experience in advocating for neurodiverse children, young people and families. They’ll be co-producing a new range of flexible training resources for both professionals and parents and carers.
You can view the 1 min user guides to the Knowing me Tool here https://www.cheshireandmerseyside.nhs.uk/your-health/neurodevelopment-pathway/knowing-me-profiling-tool/
Other ND pathway updates
Work is continuing to expand resources on the Cheshire and Merseyside Neurodevelopmental Pathway website to support children and young people, families and professionals. Upcoming additions include a FAQ on Right to Choose referrals and a family-friendly guide to stratification (now called standardised triage), co-produced with clinicians and Parent Carer Forum representatives across Cheshire and Merseyside.
Regular meetings with parents and carers are now happening to develop further resources and shape engagement, which is exactly how it should be.
What this means for PCF CWaC
The Knowing Me profiling tool and the wider ND pathway remain a key piece of work for us heading into the next academic year. We’ll continue to represent family voice in this space and keep you updated as things develop. Keep updated on all things Knowing Me and ND pathways here https://www.cheshireandmerseyside.nhs.uk/your-health/neurodevelopment-pathway/
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Knowing Me - Neurodiversity Profiling Tool
Parent Training Update - December 15th 2025
Across Cheshire West and Chester, all schools, early years settings and wider professional sectors are being trained in the newly co-produced Neurodiversity Profiling Tool- Knowing Me.
As part of this wider roll-out, parent training sessions are now available for the Knowing Me Neurodiversity Profiling Tool.
Why parent training matters
The parent sessions are designed to give families a clear understanding of what the Neurodiversity Profiling Tool looks like in practice, how it is used, and what information it captures.
This training is not about using the tool at home. Instead, it:
- Helps parents understand the language and structure of the tool
- Builds awareness of how it may be used within schools or settings
- Supports more informed conversations between parents and professionals
- Reduces uncertainty if the tool is ever introduced to your child.
Having this knowledge means that, should the tool be used, parents already have a shared understanding of what the profiling process involves and how it supports children’s needs and strengths.
Book a parent session
Cheshire and Merseyside have now made dedicated parent training sessions available, and places can be booked directly online.
These sessions are a valuable opportunity to feel informed, confident and prepared as the Neurodiversity Profiling Tool becomes embedded across Cheshire West & Chester
On 13th November 2025, parents, carers, professionals, and partners gathered at Hartford Golf Club to share ideas and improve support for neurodivergent children and families across Cheshire West. At the event we shared the new neurodiversity profiling tool, how it’s been developed with professionals, neurodivergent individuals and parent carers. To watch the presentations from this event, click on the links below...
Previous Updates and information.....
October 2nd - Neurodiversity profiling tool & pathway - Update
The final survey from the co-production groups is here please CLICK HERE and have your say.
We welcome the language and clarity around the Cheshire & Merseyside Neurodevelopment Pathway that has come such a long way. That’s thanks to the study team, the co-production workshops- a collaboration of people with lived experience, professionals, and Parent Carer Forums in Cheshire & Merseyside.
Check out the latest update links here:
CLICK HERE for Frequently Asked Questions
YouTube – Introducing a New Neurodiversity Pathway
...........................................................
Update September 2025
By Lucy Kennerley
Over the summer, I have been working with the Centre for Autism, Neurodevelopmental Disorders and Intellectual Disabilities (CANDDID) study team to assist in evaluating and developing the Neurodiversity Profiling Tool, alongside parents, carers, neurodivergent people, and professionals from a wide range of sectors.
This work has included several co-production workshops, where participants have shared their experiences and insights to help shape a tool that truly reflects the needs of children and young people. Thanks to this collaborative approach, we are now nearing the final stages of creating a co-produced tool that is practical, meaningful, and grounded in real-life experience.
Surveys 1, 2, and 3 have now closed, and feedback from these was used to refine the tool and inform subsequent surveys. Survey 4 allowed participants to test the tool, while Survey 5 collected feedback on sections of text from the training workbook. If you’d like to contribute, the current surveys are still open here:
At our Neurodiversity Forum on 13th November, the tool will be presented, and an update will be shared on the rollout plans. This will be a great opportunity to see the progress made and to understand how the tool can help identify needs early and support children and young people in accessing the right support.
A huge thank you to everyone who has taken part so far. Your contributions are shaping a tool that is co-produced with the community and for the community.
Please see attached the latest Cheshire and Merseyside newsletter for more details.
If you have any questions or would like to find out more, please contact:
cwp.ndprofilestudy@nhs.net
Co-Production Session 4
The study team would like to thank parent carers and professionals you who attended the fourth co-production session on Tuesday 2nd September, your input is greatly valued and is helping to shape the Neurodiversity Profiling Tool.
If you weren’t able to join the session, you can still contribute by completing the survey at the link below:
🔗 Co-production Session #4 Survey
Your feedback is really important to ensure the tool is meaningful, practical, and co-produced with the community.
Please contact cwp.ndprofilestudy@nhs.net if you have any questions.
Update August 2025: The Centre for Autism Neuro Developmental Disorders and Intellectual Disabilities (CANDDID) study team are evaluating the Neurodiversity Profiling Tool pilot and would really value your views.
You may have already heard about the Neurodiversity Profiling Tool, based on the the Portsmouth Model.
Its aim is to build a better understanding of a child or young person’s needs, so that the right support can be put in place.
This summer, parents, carers, neurodivergent people, and professionals from a range of sectors have been taking part in co-production workshops. The work is still ongoing, but we now have an early draft of the tool to share.
For ease of access, this draft has been set up as a Microsoft Form. Please note that the final version will be laid out more clearly – this is just a quick way for people to view it and give feedback.
We’d really value your thoughts on the content (e.g. wording, examples, clarity), rather than the layout at this stage.
Communications and frequently asked questions from Parent Carer Forums (PCF) in Cheshire and Merseyside regarding the Cheshire and Merseyside Neurodevelopment Pathway for children and young people, including a response to the Special Needs Jungle article (July 2025).
I have heard that the profiling tool used in Portsmouth will be used in Cheshire and Merseyside. Is this true?
Yes. Children’s health and care teams across Cheshire and Merseyside are committed to improving service delivery, access and outcomes for neurodiverse children, young people and families, focusing on meeting needs as early as possible. They have identified good practice in Portsmouth and Cornwall and their work with profiling tools.
As part of the development of the Cheshire and Merseyside Children’s Neurodevelopment Pathway, Wirral and St Helens have been piloting the use of a profiling tool over the last few months, and the response has been very positive. We are now making further plans to develop and adapt the profiling tool (now called the This Is Me profiling tool) for Cheshire and Merseyside in partnership with parents/carers, Local Authorities and other organisations.
You can find more information here:
Cheshire and Merseyside Neurodevelopment Pathway - NHS Cheshire and Merseyside
When will the tool be launched?
Following the launch of the Cheshire and Merseyside Children’s Neurodevelopment Pathway in June 2025, we are making plans to start the roll-out of the This Is Me tool in every area across Cheshire and Merseyside, with full roll-out in 2026.
How will the This Is Me tool benefit my child?
The This Is Me tool is used to build a profile of your child’s individual strengths and needs so that we can offer you flexible, tailored support. For some children and young people, this might mean reasonable adjustments at school or a referral to a sleep service, for example. For others, it may highlight the need for medical assessment sooner.
In the past, children, young people and families may have had to wait for a formal diagnosis before they could access this support. However, the This Is Me tool means that support needs can be identified much earlier, with no requirement to have a neurodevelopmental assessment or diagnosis first.
We are currently developing a digital version of the tool for those that prefer to complete it electronically.
Is the This Is Me tool going to replace formal neurodevelopmental assessments?
No, the This Is Me tool will not replace neurodevelopmental assessments. It is designed to help the teams working with you and your child to learn about their strengths and needs so that they can offer personalised support earlier in the process. Children and young people can receive this support while they wait for an assessment, after they have been assessed, or if they have not been referred for an assessment.
Will the This Is Me tool stop my child from getting a diagnosis?
No. We understand how important a neurodevelopmental diagnosis can be to children and families for many different reasons. The tool is not intended to be a barrier to this; it is designed to help children, young people and families access support based on individual needs before, during and after the assessment process. If you decide to access support as a result of the This Is Me tool, it will not prevent your child from receiving a diagnostic assessment.
What if we don’t have an assessment or diagnosis – can we still get support?
Yes. We know that not every neurodiverse child will need or want a diagnosis, but they may still benefit from support in some areas. The tool will help to identify these areas based on your child’s individual needs, regardless of their formal diagnosis (or lack of). If you decide not to pursue an assessment for your child, or if they don’t meet the criteria for referral or diagnosis, you can still access support via the This Is Me tool.
Were neurodivergent children and their families involved in developing the tool?
Yes. It is very important to us that the voices of children, young people and families are at the centre of the This Is Me tool, so we have been working closely with them, and with local organisations, to co-produce and evaluate the tool. We chose our training partner, Koala North West, based on their excellent track record of supporting and advocating for neurodiverse children, young people and families in the region. Additionally, project meetings involve representatives from Parent Carer Forums and third sector/voluntary organisations from across Cheshire and Merseyside to ensure that the voices of children, young people and families are represented at every level. Many of our clinicians and leads also have personal lived experience of neurodiversity in addition to their professional experience.
Is there a risk that this will encourage children to mask?
We understand that masking can have a negative impact on neurodivergent people and we have consulted with children, young people and families to ensure that the tool does not encourage this. The tool uses neuro-affirmative language, does not portray neurodiversity as inferior or deficient, and focuses on recognising strengths and support needs. It does not seek to change, discourage, or “re-train” valid neurodiverse behaviours or communication styles. We will continue to refine and improve the tool based on the co-production feedback we have already had from children, families and professionals, and on further co-production feedback going forward.
Thank you for supporting us to make co-production as inclusive as possible.
📧 If you have any questions or feedback, please contact:
For more information on the PCF and what we do...
click below
