Neurodevelopmental Pathway Update

27/03/2023

Shropshire Council and Shropshire, Telford & Wrekin Health Trust are prioritising the Neurodevelopmental Pathway work taking place across the county. Following the SEND Inspection Revisit Outcome, which stated the Autism and ADHD assessment pathway was still a significant weakness within the Shropshire Area SEND System, there is a renewed focus on specific areas and opportunities.

The BeeU offer (which caters for those children aged 6-17) is broken down into the i-Thrive approach, which is made up of:

Getting Advice – using the BeeU website, SEND Local Offer, and Early Help services as well as BeeU drop-in sessions hosted by the children’s society. These offer advice giving sessions and practitioners can refer families on to additional support and services that may offer specific and targeted advice. School Nursing Teams can also advise schools and families on some early advice and support available through their text service and support line.

We can see there is a fundamental gap in this offer that supports those awaiting diagnosis for Autism and ADHD which is being explored within the Health Systems Neurodevelopmental Working Group. Together, practitioners, PACC reps, and commissioners are exploring how families can be supported to “Wait Well”, receiving appropriate care and support while waiting for an assessment of needs. Some of this can be addressed through a more robust Early Help offer that has SEND specific advice and support, while some other areas of need can be addressed through more appropriate recommissioning of the BeeU and MPFT service offers.

Getting Help – families can currently take advantage of Heelios and Kooth, both offered as part of the BeeU service, and some of the targeted Early Help offers, as well as School Nursing and Mental Health in Schools Teams who can offer more direct guidance and advice as well as further referrals at this stage. These are designed to provide more specialist support and often require referrals, but again we are challenging the system to understand that many of these opportunities do not meet the needs of our SEND children adequately enough. At this point referrals to Paediatricians, Therapy Services, and other specialist offers (such as Educational Psychology) can also happen. Some children with Neurodiverse needs require support across multiple areas of need, so ensuring that support is accessed in a timely and meaningful way is the best approach.

PACC have consistently raised concerns that many services do not work in compliment of one another and sometimes use the “lets wait to see what the Autism / ADHD assessment says” as a way of delaying engaging with families. While this may sometimes be appropriate from a diagnostic perspective, the needs of the child will remain regardless of the diagnosis that may or may not be decided upon after a neurodevelopmental assessment. PACC have shared case studies and anecdotal evidence that families often experience a deterioration in the child’s mental and sometimes physical health, other needs can become exacerbated during a time of limited or no support, and behaviours that challenge can escalate to the point of the child’s education or social experience being adversely affected. This means that while awaiting assessment for any potential diagnosis, waiting with support available to access as and when required is essential to ensure a child and their family do not escalate into crisis. The working groups looking at the Neurodevelopmental pathway are clear on the need to make a difference here, but their ability to directly influence this may be limited. PACC are continuing to work across multiple system working groups to inform and influence activities and opportunities to address these needs in the most appropriate work areas.

Getting More Help – The point at which a child requires specific support, such as medication, therapeutic or clinical input, or ongoing monitoring and review by services at regular intervals, is described as getting more help. This is because at this point the support required to meet a child’s needs are such that specialist services are required. This is often where a diagnosis can become essential to allow access to services that may be driven by a diagnosis based criteria, or to provide greater insight into the needs as they are described following an assessment of need.

PACC are aware that currently service recovery plans are in place to address the ongoing issues of waiting times for Autism and ADHD assessments. We are yet to see these plans in detail, but understand that prioritisation of children presenting with significant escalating needs is happening, with families who have been on the waiting lists the longest being offered further triage to better understand their current circumstances. We are acutely aware that this is not sustainable, nor will it resolve the issue of the waiting lists continuing to grow and the resources to deliver assessments not keeping up with demand. This is why we have asked to see the details of the plans so that we can better understand them and identify where other services and support systems could be engaged to help families while they await assessments. Resourcing and staffing of Autism and ADHD services are a problem nationally, not just in Shropshire.

Getting Risk Support – Risks are defined in many ways, but crucially for children with Neurodevelopmental needs the risks that are monitored at this level of the approach are more related to Mental Health and Wellbeing alongside Safeguarding. This could be better described as needs escalating to the point of risk of exclusion from school, risk of requiring in-patient care for their needs, or risk of exploitation in some way. This is where currently the Dynamic Support Register (which is a list of people known within a health system who have a diagnosed Learning Disability and/or Autism) is used to monitor and flag needs and any changes to those that may require further input beyond that which is already supporting a family. This list is used to identify where the support available to help the person remain in their own home may no longer be best suited to help them. At this point a Care (Education) and Treatment Review is required to help practitioners better understand what is not working and how it can be changed to help stop someone going into hospital or residential services to help manage their needs unless that is the most appropriate place for them to be cared for.

PACC are working with the health system to better utilise the risk management, including the implementation of the new policies for DSR and CETRs. We are also supporting the Keyworker program as that should provide some navigation support for families where their child’s needs are escalating and a CETR looks like a possible next step. We are mindful that this program is in its infancy, but it could provide some useful evidence about what services are doing and how well they are meeting needs when a child’s needs start to increase or become more complex. We are also keen to see an approach that supports the family more effectively at this stage and potentially signposts or refers Parent Carers to suitable support and services to help them also.

PACC are also involved in the development of the Neurodevelopment Practitioner offer, which will see the introduction of ND practitioners to support schools and families at the very start of their journey when looking for support where Autism and / or ADHD needs emerge. This will start as a pilot program to test the efficacy of the role and how well it delivers the earliest help and support to families.

There are two other pathways for Autism and ADHD assessments that we are also exploring through this work. These are the 0-6 pathway, which is currently delivered via the Childrens Development Centre Multidisciplinary Teams. This pathway has a pilot currently underway where some families are invited in for a discussion and much shorter in person assessment where the evidence provided at referral describes the needs clearly and where a diagnosis is highly likely to be given. Those whose evidence is not as clear are still undergoing the multidisciplinary assessment process that explores needs in greater detail to build that wider picture.

The other pathway is the transitional pathway that sees those aged 16-18 being passed on to adult assessment services depending on the triage of their needs and the waiting list for assessment through the main BeeU and MPFT service offer. This is another area that PACC are trying to influence, but as yet we have little information to support our engagement in this service area. We are looking to get more involved in this later, but we see our involvement in the children’s pathways as a key priority at the moment.

As ever, we will keep families updated with the work as it progresses, and crucially the Accelerated Progress Plan actions and recovery plan information as that becomes available.