Children and young people - National Neurodevelopmental Specification: implementation review report

Insights and Findings

Intention

A number of respondents to the review recognised the holistic and neuroaffirmative view of the Specification as the right approach but there was a mixture of views as to whether the Specification fully meets the needs of children, young people, and families. A key point made was that the Specification does not address the purpose of and process for diagnosis and so is frequently at odds with the desire of young people and parents for this. It was felt better communication and focus on a need-based approach and reasonable adjustments would be helpful. A view was also expressed that whilst the intention may be positive, the Specification had raised the expectations of young people, parents, and carers beyond what the system currently has capacity to deliver.

Impact

The review sought to understand the impact of the Specification through its survey and direct engagement. Just under half of respondents to the survey felt there had been some improvement in ND support and services available to young children and their families due to implementation of the Specification.

Where this was noted, it was variable and referenced a range of areas including:

• that the Specification had created more focus on neurodevelopment, on what kinds of support were needed and how these could be delivered,
• increased collaboration and coordination across departments and stakeholders enabling a multidisciplinary approach. For example, resulting in a reduction in conflicts or duplication of efforts between services with some reporting adopting a single point of contact;
• movement away from a diagnostic focus towards a need-based focus meaning children can receive support without a formal diagnosis;
• an increase in training opportunities for staff and carers;
• an increase in support or an increase in signposting of people to appropriate services and support;
• enabling greater efficiency by allowing pooling of funding streams;
• enhancing access to services; and
• helping empower children and young people.

However, the majority felt that, due to a range of factors, the Specification had had limited impact. A number of respondents also felt that there had been unintended negative consequences from seeking to implement the Specification, including increased waiting lists, closed or restricted referral routes into health services, unwarranted variation for children and families, and confusion and conflict between services. A few respondents felt that the Specification was not currently deliverable.

Challenges to Implementation

Learning from the Tests of Change indicated that implementation of the Specification was impacted by issues including:

• increasing demand for neurodevelopmental support and diagnosis;
• funding and resourcing;
• ownership of the Specification and clarity of the roles of partners in its delivery; and
• communication, e.g. between teams, schools, and services

Survey and wider engagement for the review illustrated that these issues were felt beyond the Test of Change areas.

Demand

It was widely reflected that demand was high for both support and diagnosis, and concern was raised regarding significant numbers of children and young people currently on health board waiting lists. A tension between diagnostic models and a needs-based model was identified by the majority of respondents as being an issue, because the intended move to a needs-based model had not reduced the demand from young people, parents or some services for a diagnosis. There was also a concern around high diagnostic demand resulting in medicalisation and labelling rather than a holistic approach.

Factors referenced throughout engagement as contributing to this included:

• an expectation of different ND support following a diagnosis - it was reflected that Getting It Right for Every Child (GIRFEC) approaches meant appropriate and available support for young people in school settings is often available without a diagnosis, but this was not well understood;
• an expectation of access to further services following a diagnosis e.g. housing;
• a disconnect between approaches to diagnosis across child and adult services, where accessing adult services was understood to require a diagnosis and there was concern that not seeking a diagnosis in childhood would disadvantage an individual in later life;
• social media content on neurodevelopmental disorders/conditions;
• increase in self-identification; and
• changing cultural understanding of neurodevelopmental disorders/conditions

In some cases, respondents suggested that the demand for a diagnosis was impacting resources available to provide needs-based support to children. Respondents highlighted lack of overall resources and funding as reasons for this. Additionally, it was reflected that in some cases parents were uncertain of the value of reasonable adjustments as they believe gaining a diagnosis is the pathway to support for their children. It was reflected that moving away from a diagnostic approach requires investment in staffing across the board, for example in Health Visitors, Education Staff, Social Workers and other supports.

Related to demand and large waiting lists for diagnosis, respondents reflected many families sought private diagnosis and noted concern in ensuring both the quality of these assessments and access to support following a diagnosis. It was also noted that private/paid for diagnosis had the potential to create inequity. Respondents raised that high demand, and long waiting lists could in itself be further driving demand with people seeking referrals for diagnosis earlier and in advance of the level of need that might be anticipated. Concerns were also raised – including by respondents with lived experience - that waiting times for diagnostic services could result in young people ageing out of children’s services before being seen, especially older teens.

Need within some populations was also reflected to be high. For example a respondent working with children in residential care highlighted their experience that, with the exception of unaccompanied asylum seeking children (UASC), a significant proportion of children and young people who come into Children’s Residential are neurodivergent or have neurodevelopmental support needs. However, it was also recognised that the ND needs of UASC are less well understood and further work is required to consider this, particularly in the context of trauma.

Resource Implications

Respondents in the review emphasised the impact of limited resources in the stalling or lack of progress in implementing the Specification. This included availability of trained staff, staff capacity, and availability of dedicated funding to support implementation of the Specification.

It is recognised that Mental Health Enhanced Outcomes Framework funding provided to health boards and IJBs includes provisions for neurodevelopmental services. However, there is limited funding currently allocated to support implementation of the Specification. Some respondents reflected that they had used funding streams such as the Whole Family Wellbeing Fund and Children and Young People’s Mental Health and Wellbeing Framework funding to develop and provide neurodevelopmental supports. However, it was noted that uncertainties around funding can impact planning and staff recruitment and retention. It was also suggested that the scale of demand for neurodevelopmental support poses a risk to the wider intention of these funding streams

Issues around available funding for neurodevelopmental support are also being compounded by wider budgetary pressures. One survey respondent noted that in their area there had been a reduction in relevant third sector resources compared to previous years. One reflected family support, widely acknowledged to be a helpful intervention and its importance is emphasised in the Specification, had been reduced locally due to lack of resource. The limited availability of peer support programmes, also felt to be helpful, was similarly highlighted. Another respondent described how budget pressures in local authority and Health and Social Care Partnership (HSCP) areas had stretched existing resources further and affected their ability to recruit new staff. Similarly, another respondent reported that neurodevelopmental services in their area, particularly diagnostics, had received no new dedicated funding and were being sustained largely through staff ‘goodwill.’

Staffing was also frequently raised as a key resource requirement and a significant challenge in implementation of the Specification. Respondents noted the need for more staff resource across health boards’ children’s neurodevelopmental services and education to meet growing demand and to deliver the support needed for some children and young people. A few respondents said that there were shortages of highly trained, specialist staff, in areas like clinical psychology, psychiatry, paediatrics and specialist teaching. One respondent reflected that they do not feel the Specification as it stands can be fully implemented due to the lack of specialist staff.

It was reflected that the new processes ‘front loaded’ work into school settings resulting in significant challenges for education; with educational staff facing increased expectations and workload, including leading the neurodivergent assessment pathway. Respondents indicated that they did not have sufficient time, capacity, support or resources to service this, and the wider requirements of their role, fully. This sits within a wider context of significant demand for Additional Support for Learning (ASL) within education. It was noted that this risked impacting staff wellbeing and could lead to a reluctance to take on leadership roles. It was also reported by some respondents that a lack of specialist knowledge and training was causing concern as teachers could become the main source of referral rather than GPs or other health professionals. It was felt that greater clarity on the role of education staff was required, and that within this an emphasis on the impact on day-to-day functioning and universal as opposed to tailored approaches for young people would be helpful.

Adding to demands on staff time across sectors has been frequent media attention and political and public scrutiny. This was often felt to have been negative and critical of services and those who work within them, requiring staff time to respond to these and to requests for information where it was felt the policy intent and support available was not well understood. This has had a negative impact on staff morale and wellbeing. There is a need to build an environment where staff working in this area feel supported, motivated as well as appropriately skilled.

Alongside suggestions for funding to improve staffing levels, respondents also recommended funding across multiple areas to support the delivery of the Specification, including:

• Sustained funding for both education and NHS to have the resources to develop inclusive, neuro-affirming environments
• Long-term funding for third-sector services
• Additional funding to increase education staff time for appropriate engagement in the assessment process, reduce administrative pressures, support training, and provide dedicated staff for coordination

Where survey respondents identified resource as an issue they were asked to set out additional resource requirements, including associated costs, to deliver the Specification. Responses provided highlighted the need for further resource to implement the Specification as it stands but were unable to be specific about full costs at this stage. It was noted that learning from the Tests of Change should be utilised to understand resource requirements and that considering additional resource was best done in collaboration with partners. The Tests of Change also provided limited further insight on additional resource requirements, also without detailed costings.

Family Support

The role of family support was raised by a number of respondents as important in learning about and supporting neurodevelopmental needs. The current Specification notes some children and young people will require more targeted and specialist support, but that many children will have their needs met through universal supports e.g. at school and home.

“Prioritising and understanding need and delivery of support is an accessible, compassionate, evidence-based, trauma informed and effective way to meet identified needs.”

Child Heads of Psychology Services in NHS Scotland

Understanding of support needs can be enhanced by diagnosis but the Specification makes clear that support should not wait for or be dependent on diagnosis. For example, children and young people with neurodevelopmental support needs may not have a single area of need that meets criteria for diagnosis but may have a number of areas of need which combined could be more impactful to the child or young person. It is therefore important that neurodevelopmental family supports are offered so that parents and carers are able to understand and meet their child’s needs. These should be available on an ongoing basis, recognising that a child’s needs change over time.

In responding to the survey, it was also reflected that children who are neurodivergent are likely to have parents who are neurodivergent, and that services need to be developed to support families at an early stage. Continued development of support in the Health Visiting Service and Early Learning and Childcare were seen as potentially important to supporting parents to support their children. However, it was noted by some respondents that specific neurodevelopmental support for families, parents and carers was either not available or withdrawn due to availability of funding.

The need for support around neurodevelopmental needs was highlighted for carers more broadly. For example, it was noted that sometimes when considering fostering placements, it is apparent that a young person is neurodivergent but some of the challenges have been viewed through behavioural rather than a neurodevelopmental lens, leading to placement breakdown.

Ownership and Partnership working

Most survey respondents who felt there had not been any improvement due to the Specification cited a lack of awareness of, or clarity over, who was responsible for different aspects of implementation, including diagnosis and assessment. They felt these arose due to the Specification being open to interpretation by local boards and partners. There were also respondents who felt there was a lack of financial and strategic support, alongside a lack of general organisation and national leadership, devoted to the implementation of the Specification.

Reflecting the multi-partner approach often required in meeting children and young people’s neurodevelopmental needs, several respondents provided further detail on the challenges associated with ownership and clarity of roles in delivering the Specification. These respondents said there was a need for clearer definitions of responsibilities at each stage of the neurodevelopmental pathway. Others found the Specification unclear in terms of their expected actions or what the resulting work should look like. A few respondents felt that there was a lack of clear local governance and accountability and that this was felt to have hindered appropriate responses to concerns.

“A whole system stepped approach to truly understand and meet the individual needs of neuro-diverse children and young people is urgently required, using a formulative needs-based model rather than only diagnostic categorisation.”

Child Heads of Psychology Services in NHS Scotland

Some respondents felt that there had been a lack of impact because stakeholders and partners did not fully or clearly understand each others roles in the implementation of the Specification. One example given was that wider partners lack an understanding of how GIRFEC is implemented within education. This implementation means the support education can provide is usually put in place before diagnostic assessments have concluded. It was noted that following a diagnosis of a neurodevelopmental condition or disorder, children are often referred back to education with an expectation of further support. It was reflected that a greater understanding of GIRFEC and what is already in place would be helpful and support clear expectations and a positive experience for children, young people, and families.

Additionally, concerns were raised that neurodevelopmental diagnosis was only available in some health boards where children and young people had significant co-existing mental health difficulties, creating inequities.

A lack of collaboration and communication between services was also noted by a few respondents as an unintended consequence of the Specification’s implementation, with services believing that the Specification meant that they could not make referrals to health services and pushing back on schools and education services to make these.

The potential role of partners who have not necessarily been engaged around the Specification to date was also raised, for example early years practitioners and their role in early support. Concern was also raised that school-led processes may miss opportunities to support children with neurodevelopmental support needs who are home schooled.

Communication and Understanding of the Specification

A number of issues related to communication and understanding of the Specification were identified including a lack of awareness, confusion, or lack of clarity on policy intent across a range of stakeholders including politicians, delivery partners and parents. Respondents reflected that this resulted in a number of issues or approaches contrary to the policy’s intent or contributing to the complexity or negative experience of delivery.

This included:

• A perceived lack of information for parents about what the Specification was intended to achieve, when support would be available and where/who from.
• Managing high numbers of enquiries from politicians and parents seeking information or making complaints. This generates significant workloads and often relates to timeframes, the representation of which is considered to be unrealistic within the Specification. This also has an impact on staff capacity and morale.
• It was also reflected that communications between partners could be challenging, with partners not being notified of outcomes from referrals for example.

Quality Assurance

A small number of reflections focused on quality assurance, noting that the monitoring of waiting times does not indicate quality of support or if/where access is restricted. One proposal was that effective self-evaluation on the quality of support available should be trialled and consideration should be given to data collection or analysis that supports quality of provision and minimises data burden for partners. This could begin by mapping key data sources currently available across the system and understanding the story this tells.

Training

Some respondents criticised the Specification for not outlining the training and skills required for neurodevelopmental support, feeling this led to looser interpretation of the Specification.

It was reflected that there were a number of useful learning resources that could be shared or developed further and that there was a high demand for training. Training for all school staff, not just teachers was felt to be useful, and the importance of time being made available to undertake training was raised. NHS Education for Scotland (NES) also reflected a high demand for relevant learning resources but a limited resource for this.

Assessment

Young people who had been through a diagnostic assessment process reflected that this experience could be negative, and this was due to a number of factors. In some cases, young people did not feel they or their families were fully involved in the assessment or decisions being made, and that their experiences were dismissed. Other reflections included having to provide the same information repeatedly to different people and experiencing a lack of coordination and communication between services. They also reflected those who do not receive a diagnosis following assessment, may still have support needs.

Delivery partners also reflected a need for refinement of assessment and diagnostic processes, making better use of existing evidence and reducing bureaucracy, noting that information collected within education was not always recognised by health, resulting in asks for additional information and creating an additional pressures on staff time. Examples were also given of requests for information some no longer considered appropriate such as IQ tests.

Clearer links with wider legislation

It was reflected that clarification is required on where and how the Specification brings additional value in relation to pre-existing guidance and legislation and how it sits in relation to this. Continued consideration also needs to be given to how the Specification aligns to wider legislation under development, including the Learning Disabilities, Autism and Neurodivergence Bill and the Mental Health Law Reform.