Due to my elder children having been utterly failed in the school system I have made the decision to educate my daughter at home to support her neurodivergence. I cannot accept her struggling through her school years minus a crucially needed diagnosis to support her needs. She is better supported at home on a 121 basis and in small group lessons in our superb home education community. I am able to identify her needs far better than 1 teacher per 30 children.

Had her diagnosis occurred at a young age. Specialist assessments could have happened to identify her full needs and consequently identify the appropriate setting. Sadly after 10 years of failures for my children I have accepted the system does not "support" our vulnerable children.

This is nothing short of utter betrayal to our children.

December 2023.

We raised concerns with staff members of the ICB about Target Autism retiring in July 2024.

24th September 2024.

Concern raised at SEND & AP Partnership Improvement. https://www.westnorthants.gov.uk/directory/local-offer/14402a23-6242-468f-8278-caa8e9a8aecc 

15th October 2024.

Evidence padlet closed. 

18th October 2024.

We presented all feedback obtained in a meeting with the CEO and Chief Nurse of the ICB. 

With the following statement released. 

'We were disappointed to learn that they were not aware of the full extent of the current issues until we raised this concern in the SEND & AP Partnership Improvement Board, however, we are pleased to say that this has now highlighted the many difficulties faced by children, young people, and their families, which they would like to work with us to try to understand further and support them in improving services and finding resolutions to these, alongside improving communication with families. 

We will continue to try to obtain answers and will update everyone accordingly.' 

24th October 2024.

Requested update and communication for families at SEND & AP Partnership Improvement Board. https://www.westnorthants.gov.uk/directory/local-offer/b50faa33-d117-4204-8f6a-fb420ddbd239 

28th November 2024.

Requested update and communication for families at SEND & AP Partnership Improvement Board. https://www.westnorthants.gov.uk/directory/local-offer/8bf25059-ecfc-4a2e-bbe0-9a69cc3eb36d 

19th December 2024.

Requested update and communication for families at SEND & AP Partnership Improvement Board. https://www.westnorthants.gov.uk/directory/local-offer/8a4b01ef-d21b-4658-af09-7e591dade8f4

23rd December 2024.

Published communication: 

In October, we raised concerns at the SEND & AP Partnership Improvement Board about the pausing of the primary school-aged ASD & ADHD pathway. We collected your feedback and presented this to the CEO and Chief Nursing Officer of the ICB, to represent your voices. 

We were promised communication to share with our members which we have now received, please see the statement below. 

Whilst we remain disappointed we also welcome the transparency in communication of the difficulties and will of course continue to request further updates and hope to have better news in the new year. 

'We are writing to you as part of a co-produced message from West Northants Voices in Partnership, Northamptonshire Integrated Care Board (NICB), and United Hospitals Northamptonshire (UHN) to update you on the current situation regarding Autism Spectrum Disorder (ASD) and Attention Deficit Disorder (ADD) assessments in Northamptonshire. 

We fully understand the challenges families face due to long waiting times for assessments and acknowledge the distress this causes. These waits have been further impacted by the closure of Target Autism, our previous assessment provider, in August. While efforts to identify an affordable interim solution are ongoing, we are committed to addressing this critical issue collaboratively. 

Since August, we have worked to complete 42 partially finished assessments. However, we recognise the overall scale of the challenge: there are currently 1,100 children and families on the waiting list, with some waiting for over 2.5 years. 

To provide immediate support, UHN has reached out to all families on the waiting list to explain the current situation and share resources that may help in the interim ( letter attached). We understand this is not a substitute for timely assessments, and we are determined to do better. 

Recognising the demand for ASD/ADD assessments continues to grow - despite this challenge , we remain steadfast in our commitment to improving the experiences of children, young people, and their families. As part of this, NICB is working closely with UHN and Northampton General Hospital (NGH) to explore sustainable solutions for future provision. 

We want to assure you that your voice matters in this process. We are committed to keeping you informed and working with partners like West Northants Voices in Partnership to ensure families are supported, heard, and involved in shaping future services. 

Thank you for your patience and understanding as we navigate these challenges together.' 

To view this statement in different languages please visit https://www.wnvp.co.uk/news/primary-school-aged-asd-adhd-pathway-update?fbclid=IwY2xjawHWLNFleHRuA2FlbQIxMAABHQVvJLUXTJksxFTxwOvrqPrOlVmBzoWL8_E_hgUELlJlXZ3_QL4taJaEfQ_aem_qE_tkt_tjfFP6QqZlNu1iw

27th January 2025.

Requested update at SEND & AP Partnership Improvement Board. https://www.westnorthants.gov.uk/directory/local-offer/ab12d03c-5736-418a-a095-8235d9ab3320

27th February 2025.

Discussion about the importance and urgency of restoring the primary age ASD/ADHD pathway, at SEND & AP Partnership Improvement Board. Health representatives reported that provision had been found for those CYP whose cases were in progress. We subsequently heard from parents that Mosaic had been commissioned to complete the 42 partially completed cases currently sat with NGH. https://www.westnorthants.gov.uk/directory/local-offer/01b3abf2-908b-49af-8d35-238e809d548b

27th March 2025.

Update provided at SEND & AP Partnership Improvement Board. 'Progress on the ASD pathway, interim arrangements with NGH, and commissioning had been slower than expected, but significant momentum had been gained recently with NGH identifying a provider for those cases that were already started, The board sought clarity from the ICB about plans to re-instate the Primary age pathway by NGH. The importance of prioritising the outstanding, addressing data sharing obstacles, and developing a robust recovery plan to manage the backlog and continuous demand for ASD/ADHD assessments was emphasised.

Three business cases are being developed by ICB, with the main case for clearing the backlog, and future investment in addressing the wider ASD/ADHD backlog as part of a larger business case within the Community Paediatric Review.' https://www.westnorthants.gov.uk/directory/local-offer/e33c6c18-767d-455b-85a6-2db7e8e952e3

24th April 2025.

Update provided at SEND & AP Partnership Improvement Board. 'NGH is collaborating with Mosaic to address the ASD/ADHD cases that were in progress when the service was ceased. The ICB are continuing to work to restart the primary age ADHD / ASD pathway and will update at the next board. The ICB has approved additional funding the address the ADHD / ASD backlog and is working with partners to agree how this work will be prioritised. Communication plan of the prioritisation criteria is tabled at the next board for approval. In addition, the ICB is looking at the longer term county-wide re-commissioning of the ADHD / ASH pathway.' https://www.westnorthants.gov.uk/directory/local-offer/6ddf4619-52a1-4f59-8f02-895e7815af73

23rd May 2025.

Requested update at SEND & AP Partnership Improvement Board. https://www.westnorthants.gov.uk/directory/local-offer/a4ea16e6-a2e5-4e28-b585-1c73b3d4c509

Requested update at SEND & AP Partnership Improvement Board, this led to a full board discussion where we stressed stressed the need for a clear timeline and communication to families. https://www.westnorthants.gov.uk/directory/local-offer/e675d1de-6fe8-46c1-8340-7ebfdf344b24

31st July 2025.

Letter from the ICB to parents and carers published. 'Dear Parents and Carers, We're writing to provide an important update about the future of community health services for children and young people in Northamptonshire, particularly in relation to autism (ASD), ADHD, and community paediatrics. Following a recent review of community paediatric services, Northamptonshire ICB is now developing a case for change that would see a single lead provider take responsibility for delivering children's community health services in the future. This potential change aims to improve the quality, coordination, and consistency of care so that more children and young people can access the support they need. As we plan for 2025/26, this transformation has become a key priority for the ICB. A governance structure is now in place to begin developing the new service model. Importantly, we want families to play a central role in shaping this future and we'll be inviting you to take part in the co-design process once the timelines have been agreed. We will share further details as soon as they are available. In the meantime, we understand that some families are experiencing significant delays in accessing assessments. To help address this, we're launching a targeted initiative to increase capacity for ASD and ADHD assessments. We'll also be publishing a Frequently Asked Questions (FAQ) document shortly. This will explain *The assessment process *Treatment options, including medication *The range of support services available to families based on individual needs. We are committed to keeping you informed, and regular updates will be shared throughout the summer, autumn, and beyond.

5th August 2025.

Post from Northamptonshire Healthcare NHS Foundation Trust published. 'More than 500 extra neurodevelopmental assessments for autism and/or ADHD are being offered to young people in Northamptonshire as part of a drive to help reduce waiting lists.

Demand for autism and/or ADHD assessments is extremely high and growing in the county. Because of this, NHS Northamptonshire Integrated Care Board has provided special funding to pay for at least 500 extra assessments, on top of the ones which are being routinely provided by the NHS.

These extra assessments are being offered to children and young people on the waiting list in Northamptonshire who meet certain criteria, including prioritising those who are moving from primary to secondary school and from children’s to adults’ services.

The assessments are provided by Healios, an independent online mental health, autism and ADHD service provider for children, young people and families.

Those being offered the assessments are being contacted to explain what happens next, including detailed information about how they can access their assessment. Those who accept the offer will then be taken off the assessment waiting list, helping others to be able to access assessments sooner.

Find out more about the extra assessments – including questions and answers – at https://www.nhft.nhs.uk/updates/extra-autism-and-adhd-assessments-offered-to-help-cut-waiting-lists-in-northamptonshire-12700?fbclid=IwY2xjawMEnyhleHRuA2FlbQIxMQABHkMVxhlLeU9AoK7YcugN8KLHzAIeMmSaKBiCZpFRYYFAsq9kPGH6iHfZ3Z-A_aem_FkZKjmb88KArtRz07I-xpA'