Hampshire and Isle of Wight Integrated Care Board has admitted the Portsmouth Neurodiversity Profiling Tool requires updating to take a “more neuro-affirmative approach”, yet the organisation continues to use the current version on the Isle of Wight.
The admission comes in a Freedom of Information response to OnTheWight that reveals significant gaps in the evidence base used to justify rolling out the controversial assessment tool across the Island’s children’s services.
It comes in the wake of an Open Letter from a group of nationally and locally recognised voices calling for an immediate pause in the use of the Portsmouth Neurodiversity Profiling Tool. This was followed by what many called a “deeply unsatisfactory” response to OnTheWight by the local authority, the Isle of Wight council.
In their response to the FOI request, the ICB acknowledges that Portsmouth developed the tool six years ago, and “the debate and discussion around neurodiversity has moved on significantly” since then.
Limited evidence base revealed
The organisation admits the neurodivergent needs-led pathway transformation programme remains “still in its infancy” and requires “the development of innovation and new approaches that draw on a developing evidence base”.
The main research evidence cited covers just 51 participants aged 3 to 15 years, with the initial evaluation completed in May 2022.
A recent October 2025 review by Health Innovation Wessex acknowledged “several areas for improvement to secure robust outcome measures”, though it noted the tool had “good research and clinical principles underpinning” it.
Deflection over decision-making
When challenged about the lack of meaningful co-production with local neurodivergent people and families before implementation, the ICB deflects responsibility.
The organisation states:
“This is not an NHS tool and is not ‘owned’ by the NHS. This is not a decision which sits with NHS Hampshire and Isle of Wight alone.”
The ICB justifies the approach as “a national direction of travel” and describes the Isle of Wight implementation as “a trial extending a model with promising early signs, seen across the country”.
The organisation claims statutory partners continue to seek opportunities for co-production, but only mentions listening events and survey reviews that took place after the tool’s implementation.
Training details remain vague
The ICB provides few specifics about staff training, stating only that “a wide range of training” exists across neurodiversity pathways in different parts of the country.
The organisation mentions that training specific to the profiling tool has received evaluation by the University of Portsmouth, but does not share the findings.
The response notes that the evaluation reviewed “the delivery and impact of the training” and that “the finding of this will help to drive further improvements in the delivery of the whole pathway”.
Refusal to pause despite concerns
Despite acknowledging the tool needs updating and recognising “constructive challenge being raised”, the ICB refuses to pause its use.
The organisation states that “during this time the current version continues to be used in light of the positive feedback to date”.
A system-wide review has started to examine the tool as part of wider pathway transformation, but this appears to be an internal process rather than the independent review requested by critics, including Dr Damian Milton.
Future co-production promised
The ICB commits to co-producing a “version 2” of the tool with “children, families and practitioners across the Integrated Care System footprint”.
This co-production will cover the Isle of Wight, Portsmouth, Southampton and Hampshire, taking account of “local needs and structures”.
The organisation encourages “all parties to engage with us in the spirit of co-production” for future development.
However, families and professionals continue to question why such co-production did not take place before implementing the current version across Island services.
“Profoundly disappointed”
A spokesperson for Isle of Wight SEN Support (IWSS) told OnTheWight,
“We are profoundly disappointed with the response from both the ICB and the LA to our concerns regarding the roll out of the Portsmouth ND profiling tool here on the Island.
“Having thoroughly researched the tool and the data that underpins it, we have raised several very clear, valid and evidence-based concerns that suggest this tool has the potential to harm neurodivergent children, and these concerns are shared by some of the most eminent experts in neurodivergence in the world.
“Alarmingly, both the ICB and the Local Authority (LA) have failed to engage with any of these points in any meaningful way. We have seen in other areas how this tool puts tremendous extra pressure on already under resourced and overstretched school staff.”
They added,
“Furthermore, the Island simply does not have the infrastructure and services with the capacity to cope with implementing any tool recommendations for children.
“Despite this model already being in place, and claims to the contrary, there is STILL no actual ND multi-disciplinary team on the Island – certainly not one that is specialised and accessible to the parents we speak to every day.
“Authentic and meaningful co-production has not taken place here on the Island with regard to a profiling tool. Authentic co-production would involve working with local ND people, groups, children and their families as equal partners in service design from start to finish. Imposing models from other areas is not coproduction. Creating second versions of models imposed from another area is also not authentic coproduction.
“Committing to a second version of a tool that has been shown to be based on debunked research and harmful principles, does not address the concerns of local families, it demonstrates a failure to understand them.”
“We believe Island children deserve nothing less”
The IWSS spokesperson went on to say,
“The safe, responsible thing to do would be to pause the roll out of the tool, and work with Islanders to authentically co-produce a tool that is not based on debunked research and principles known to risk harm to ND children.
“There are already some very well established groups on the Island who could offer a wealth of insight in development.
“IWSS have already provided both the ICB and the LA with examples of better tools we could use as a starting point. It’s not impossible; it could be so much better, and we believe Island children deserve nothing less.”
FOIA response
The table below sets out OnTheWight’s questions, the ICB’s summary response, and where we feel there are gaps and deflections.
| Question | ICB Answer Summary | Adequacy Assessment |
|---|---|---|
| What research evidence did the ICB rely on to justify the rollout? | Cited small Portsmouth pilot (51 participants, 3-month review), PANDA research article, and Health Innovation Wessex review. Stated evidence base is 'developing' and positive engagement seen. | Partially answered. Relies on limited, localised pilot data without full evaluation reports or large-scale independent studies. No clear justification for applying Portsmouth results to Isle of Wight. |
| Why was the tool adopted without meaningful local co-production? | Said tool is not NHS-owned; part of national direction of travel; trial to accelerate change. Claims ongoing co-production across Integrated Care System and listening events. | Avoids the 'why' — deflects to national policy and ongoing co-production rather than explaining why rollout happened before local neurodivergent engagement. |
| Does the tool assess against neurotypical norms and how does this align with a neuro-affirming approach? | Acknowledged tool developed 6 years ago and needs updating for a neuro-affirmative approach. Work underway to align with national research. | Indirect acknowledgement but no clear yes/no confirmation. Admits it requires change but avoids stating current use is against neurotypical norms. |
| What training have staff received, and who designed/delivered it? | General training from educational psychology, therapies, parent/carer forum. University of Portsmouth evaluated training delivery and impact. | Incomplete. No curriculum, trainer credentials, participant numbers, or competency evidence provided. Unclear whether trainers were independent from tool’s creators. |
| Will the ICB pause the tool and commit to an independent review? | No pause. Continues to be used alongside national Community of Practice and evaluation consortium work. Version 2 in co-production; cites positive feedback. | Does not agree to independent review; relies on internal/national networks. Positive feedback claim is unsubstantiated; avoids addressing external expert concerns directly. |
