Agenda item

This report and accompanying appendix sets out an update from the NHS Kent and Medway Integrated Care Board (ICB) on changes that have recently made to Attention Deficit Hyperactivity Disorder (ADHD) and Autism Services in Kent and Medway. This report is also being considered by the Children and Young People Overview and Scrutiny Committee on 12 August 2026 and the draft minutes of its discussion will be shared with this Committee as an addendum report.

Estimated time: 30 minutes

Discussion:

Representatives from NHS Kent and Medway Integrated Care Board (ICB) introduced the report which set out the current approach to Autism and Attention Deficit Hyperactivity Disorder (ADHD) assessment services for children, young people and adults. It was explained that the reason behind the approach had been a combination of a significant rise in demand and change in the provider market. It was explained that amongst adults, the vast majority were using the Right to Choose (RTC) pathway for assessments. It was also explained that data sets amongst the RTC market were less reliable as some providers were not obliged to provide data in the same way statutory commissioned services were and it was believed there were a number of individuals whom were on multiple waiting lists. The ICB was therefore working to improve the quality of data to fully understand the numbers of those impacted. This service was causing significant financial pressure due to the growth in demand and therefore the ICB had been liaising with providers to implement Indicative Activity Plans (IAPs) to manage the level of activity and cost within a single financial year. In implementing this, a clinically based criteria had been implemented to ensure those on the waiting list with the highest priority were seen first.

The Chairperson and Vice-Chairperson of the Children and Young People Overview and Scrutiny Committee (CYPO&S), which had considered the report at its meeting the previous week (the draft minute of this discussion had been provided in a Supplementary Agenda), were then invited to address the Committee. They explained that they remained concerned regarding the approach taken and the impact this was having on individuals. Criticism was made of the way in which some services users were informed, which had been via a particular provider, for which the ICB had apologised as this had not been the planned way in which it had wished to communicate messaging to service users.

Members then raised a number of questions and comments, which included:

• Prescribed treatment – reference was made to some people claiming that their GP was not able to prescribe ADHD medication that they had previously been prescribed based on a private diagnosis. The ICB confirmed that this was not a change in approach and that the NHS did not pick up the prescribing for medication that was initiated within the private sector.
• Budget spend – the ICB clarified that its spend remained above what was budgeted for in the current financial year, however, the ICB was in deficit and needed to control its spending responsibly and was therefore asking providers to manage activity within a financial envelope.
• No restriction to RTC – it was also clarified by the ICB that there had been no restrictions placed on referrals to the RTC pathway or any particular provider, but providers had been asked to manage activity within the resources available and to clinically prioritise individuals accordingly.
• Categorisation of looked after children (LAC) – reference was made to a discussion that had taken place at CYPO&S the week before, regarding the categorisation of LAC, which was currently placed at 2a, subject to other clinical factors. It was felt that given the level of disadvantage and vulnerability for LAC, this should be changed to category 1. The ICB explained that if a LAC had other factors that warranted a priority assessment this would still happen and that clinical prioritisation was a collaborative approach amongst clinicians to correctly prioritise individuals.
• Common practice – it was asked if this approach in relation to the implementation of IAPs was common practice with other medical conditions to limit the number of assessments. In response the ICB confirmed the utilisation of IAPs was a standard aspect of the commissioning framework within the NHS, as was clinical prioritisation to ensure those with the most urgent need were seen first.
• Wider complexities and support – reference was made to the importance of understanding the impact of autism in the context of other medical issues, such as bladder issues, chronic pain or mental health issues, including self-harm and suicide, and concern was raised on what impact a delayed diagnosis would have on understanding an individual’s needs and on an individual’s ability to understand themselves or advocate for themselves. The ICB explained that support tools, such as ‘this is me’, were based on need rather than diagnosis and if a need was met, for some individuals they may then not feel the need to pursue a formal diagnosis, whilst recognising others would. However, where needs were met, there could be a subsequent reduction in demand of assessments, and this had been demonstrated by pilots run elsewhere. It was mentioned that there were a number of different, non-medical support options for people such as mental health support and peer groups, although these were often not commissioned by the ICB.  However, the ‘this is me’ tool, which was currently used for children, was a shared responsibility tool and expansion of the tool in adult services was being explored.
• Quality of provision – in response to a question about the quality and consistency of assessment services across providers, the ICB explained that there were more than 40 providers operating within the market, two of which were statutory organisations (for children). The rest were RTC pathway providers and of those not all were directly commissioned by the Kent and Medway ICB. Under the NHS framework, where a provider was commissioned by an ICB, they were still able to operate within the space of other ICBs, which added extra complexities to the market landscape. Quality of service was something the ICB was keen to establish assurances on and so it was exploring options, such as clinical audits. It was also looking to standardise a model of clinical prioritisation to be applied across the provider network to ensure there was consistency in approach.
• Data – Members raised concerns about the poor quality of data relating to the RTC pathway. The ICB shared this concern, which was due to a number of factors such as the different ways in providers gathering data and the fact that some providers were not obliged to share data with the ICB because they had not been directly commissioned by it. The ICB was therefore working with providers to build relationships and improve data collection as well as a shared understanding of service delivery expectations.
• Substantial variation (SV) – reference was made as to whether the change in approach in terms of clinical prioritisation and managing demand through AIPs constituted an SV. Members were reminded that the Committee was able to request NHS partners to report and update on this issue without it being an SV and that the pathways were not being changed but providers were being asked to function within a budgetary envelope.

Decision:

1)    The Committee noted the update from the NHS Kent and Medway Integrated Care Board, as set out at Appendix 1 to the report and the draft minutes from Children and Young People Overview and Scrutiny Committee which were set out in an addendum report.

2)    The Committee recommended that, given the level of vulnerability and disadvantage for looked after children, the categorisation of this cohort of young people be reconsidered, with the possibility of LAC moving from category 2a to category 1 being explored further.