NAIT Adult Neurodevelopmental Pathways report

Understanding demand and capacity

Understanding demand and capacity for adult autism, ADHD or neurodevelopmental assessment is complex. It becomes even more complex when trying to understand demand, need and service capacity for support at different tiers in a cross sector system. Consensus on effective and efficient data collection, which measures what matters should be a national focus as neurodevelopmental pathways develop and requires collaboration between clinicians and data scientists in Public Health Scotland.

NAIT continue to work with the national practitioners' network to collate and share information that is available. In future we recommend looking for ways to understand local and national demand and capacity across all 4 tiers of the stepped care pathway. There will be opportunities in future to learn from related work in children's services.

Demand:

• Even if we narrow the focus to assessment and diagnosis within adult mental health services, there is no national system for collecting this information.
• It is not easy to understand how to capture demand or need when there is no service, so no referral data.
• Service configuration is complex and even where services or pathways do exist, they often focus only on a subgroup of the total number of people who might be seeking assessment (e.g., CMHT ADHD referrals only or Adult LD autism assessments only).

Capacity:

• Understanding capacity includes knowing hours of clinical time from different members of the multi-disciplinary team, relevant knowledge and skills in the workforce, physical space to deliver services and many other factors.
• Services in development will use time differently to highly skilled and confident teams, working within an established stepped care service, so that capacity and what can be delivered within resource can change over time.

Given this context, we will report here on information from Scotland which add to our understanding. This is not a complete review of all health boards and we are aware there is work going on in other areas and we look forward to opportunities to share related work in future.

Public Health Scotland audit of prescribing of ADHD medication in Scotland between 2010 and 2019

• In 2019, medication was the recommended first line of intervention for ADHD and there is strong evidence that it can improve quality of life, mental health and wellbeing in a population with high rates of substance misuse, involvement with criminal justice and psychiatric illness
• There were significant increases in people receiving medication for ADHD between 2010-2019. The numbers dispensed a prescription increased by 233.2%
• Nationally, for adults at an estimated 2% prevalence level, 91% of cases with likely ADHD were not prescribed medication, and at the 4% level the figure was 96%
• When examined geographically, there were stark differences in local practices with between 85%-100% of adults with likely ADHD in a health board area not prescribed medication

Although this does not directly relate to demand and capacity, it indicates the level of unmet need and potential demand once local areas start to address neurodevelopmental assessment.

Local Area Data

Large increases in referrals for autism and ADHD assessment are reported by local services. Through the national network, we have learned about related work in other HSCPs around Scotland. Local teams have kindly shared the following:

Glasgow: Autism, ADHD and a stepped care adult neurodevelopmental pathway plan

NHS Greater Glasgow & Clyde is the largest health board area in Scotland and serves a population of 1.2 million distributed across 6 HSCPs.

• NHS GG&C had a well-established specialist multi-disciplinary adult autism team that provided diagnosis and short term support to autistic adults with a clear pathway in place.
• There was an over 1000% increase in referrals for assessment of adult ADHD to CMHTs over the past three years. These assessments were initially undertaken within CMHTs but waiting lists rapidly built up due to limited capacity within CMHTs. NHS GG&C is currently receiving over 2000 referrals for ADHD assessment per year. Over the same time frame, there has also been an over 250% increase in referrals for assessment of autism.
• A small nurse led ADHD waiting list initiative (WLI) was set up in April 2021 in Glasgow City to address waiting lists for assessment as an interim measure while work was undertaken to develop a more comprehensive pathway. Access to the WLI is through adult CMHTs with treatment provision remaining within CMHTs. As a result of the investment in the WLI, there has been an over 800% increase in recorded diagnosis of ADHD among adults within Greater Glasgow & Clyde over the past 3 years. However, it has been challenging to maintain staffing levels in the WLI with increasing competition for trained staff from the private sector.
• A neurodevelopmental pathway development group has been set up with multi-disciplinary input and with wider stakeholder involvement from public health and primary care.
• A needs assessment of people referred for ADHD assessment using a questionnaire survey and engagement sessions with autistic adults has been undertaken.
• A new, single neurodevelopmental pathway which envisages a matched care approach with service provision at secondary care, specialist third sector and primary care level has been developed. The primary care component relies on new investment from Scottish Government within the mental health in primary care teams. Efforts are underway to identify funds for the secondary care and specialist third sector components.

Fife ADHD referrals

• In 2012 Central Fife (population 150,000) received 59 referrals for ADHD assessment in one year. In 2022 the same area received 297 referrals for the year. This reflects an increase by 500% in referrals over 10 years.

Lothian neurodevelopmental pathway

• Lothian have an established neurodevelopmental approach to adult autism and ADHD assessment in the CMHT over the last 10 years. A small multidisciplinary Neurodevelopmental Resource Team support professional learning, coaching and mentoring to build capacity across mental health, social care and primary care teams.
• Up to 30% of referrals to the CMHT have been for neurodevelopmental assessment; 70% of these individuals were previously known to the CMHT but not diagnosed and there was found to be a 40% co-occurrence rate of autism and ADHD in individuals assessed.
• Information on RefHelp supports GPs to make referrals with relevant screening information, to increase capacity through gathering information in advance of first appointments and supporting effective triage.
• The team identified that 30% of referrals to the CMHT for autism assessment were 'non-complex'. A successful governance arrangement between NHS Lothian and Autism Initiatives means that this group are offered quick assessment through (Tier 2) third sector partners along with a range of supports, thus reducing demand on the CMHT and reducing the number of people refused assessment because of Tier 4 thresholds.
• In East Lothian, the local Primary Care Mental Health Team (Tier 3) have developed a direct access service led by AHP and Nurses and many of the people accessing brief interventions and support are neurodivergent. Some seek support and others are still seeking diagnostic assessment. This team does not currently undertake diagnostic assessment but there is an opportunity in local areas to consider how such teams can meet demand at an earlier stage and before crisis hits, as well as being a maintenance support for people who have previously been engaged with the CMHT.

NHS Grampian Adult Autism Assessment Team

• Prior to 2021, there was no pathway for adults seeking autism or ADHD assessment in Grampian. The small multidisciplinary AAAT started offering assessments in April 2021, with 4 hours each a week allocated to develop a sustainable pathway with self-referral for adults seeking autism assessment in Aberdeen City and Aberdeenshire and works closely with Autism Understanding Scotland and other third sector organisations. Moray joined the team in May 2022.
• Team members all have roles in the CMHT but this service operates at Tier 3 and is not dependent on Tier 4 thresholds.
• There were 789 referrals in the first 18 months, 62% of these were female and on average 4 direct contacts were needed to complete the process agreed, with information gathered in advance to support efficiency. 31 referrals were declined and the diagnostic rate was 80-85%.
• Feedback to date from the autistic community has been hugely positive.
• The local Quality Improvement and Assurance team supported the development of a clinical data gathering system to understand demand in relation to number of referrals, time for assessment, wait times, diagnostic rate and proportion of referrals declined or advised to follow a different pathway.
• In reviewing next steps, the local team have developed a proposal with 5 levels of costed options, ranging from maintaining this service to a full stepped care adult neurodevelopmental service. There is local agreement to continue with the status quo until March 2024, with a small increase in staffing to increase capacity for assessment.

NAIT Wait Times Review 2022

NAIT undertook a national review to understand wait times in adult and child Neurodevelopmental services and to investigate key time points (measured against NAIT Child ND time standards below) and factors within the diagnostic process. Responses were provided by services around Scotland for assessments completed between October 2021 and May 2022. Outcomes will be reported fully in a separate report.

Table 2: NAIT time standards

Stage in Pathway: NAIT Proposed Time Standards

Request for neurodevelopmental assessment: Time from acceptance of referral to first appointment should be no longer than 12 weeks (84 days)

Diagnostic assessment: Time from first appointment to last appointment should be no longer than 6 weeks (42 days) to 22 weeks (154 days)*

Full process: Total waiting time (from request/referral accepted to diagnosis shared) should be no longer than 19 weeks (133 days) to 36 weeks (252 days)*

Support: Follow up (meeting after diagnosis) should be within 8 weeks (56 days)

*depending on case complexity

Findings

A retrospective case note analysis of 409 individuals seeking neurodevelopmental assessment services, was used to gain an understanding of the neurodevelopmental diagnostic assessment process. Data was received from 11/14 health board areas.

Figure 5

409 cases in total from 10 boards

• 206 children from 10 boards
  • 62.62% male, 36.89% female, 0.49% other
  • Mean referral age was 8.99 years (range 1.42 - 17.92)
• 202 adults from 10 boards
  • 49.28% male, 48.28%, female, 2.46% other
  • Mean referral age was 29.96 years (range 15.75 - 71.08)

Pathways followed were:

• Autism only n=58 (28.71%)
• Autism & Learning Disability n=10 (4.95%)
• Autism & ADHD n=47 (23.27%)
• Autism & Mental Health n=8 (3.96%)
• Learning Disability only n=17 (8.42%)
• ADHD only n=52 (25.74%)
• ADHD & Substance Misuse n=1 (0.5%)
• ADHD & Mental Health n=1 (0.5%)
• Mental Health n=9 (4.46%)

Diagnoses received were:

• Autism n=79 (38.92%),
• Attention deficit hyperactivity disorder n=92 (45.32%),
• Developmental language disorder n=2 (0.99%),
• Fetal alcohol spectrum disorder n=1 (0.49%),
• Developmental coordination disorder 1 (0.49%),
• Intellectual disability n=11 (5.42%),
• Other neurological or psychiatric diagnosis n=27 (13.30%),
• No diagnosis on completion of assessment n=28 (13.79%)

Diagnostic rate = 86.14%

This is an important figure which suggests that very few people are coming forward for assessment who do not meet diagnostic criteria.

How long is the wait for diagnosis?

Waiting for diagnosis has three parts, namely:

• wait for first appointment (from referral)
• duration of assessment (first appointment/contact to last appointment/contact)
• wait to receive diagnosis

Together these give the total wait for diagnosis (i.e. from referral to receiving diagnosis).

Adults (n=202)

For the adult cases reviewed, the median total wait for diagnosis from referral to receiving the diagnosis was 252 days (IQR 106-611) for adults.

• Under half (45%) of the adult cases reviewed received their first appointment within the recommended 84 days period.
• Around three quarters (73.3%) completed the assessment process within the recommended 154 days period.
• Under half (47%) of the adult cases met the overall 252 day target for full waiting time from referral to diagnosis.