ADHD and autism pathways and support

The Committee notes with concern the evidence it has heard about the lack of pathways to support for adults, and for children without co-occuring mental health conditions in some health board areas, and the confusion inconsistencies in available pathways across Scotland can cause for individuals and their families.

The Committee welcomes the Scottish Government's commitment to accept the recommendations set out in NAIT's Adult Neurodevelopmental Pathways report, including the development and implementation of guidance for adult pathways in all HSCPs across Scotland. The Committee further welcomes the Scottish Government’s commitment to take action to address the findings of its review of the implementation of the National Neurodevelopmental Specification for Children and Young People through its new Taskforce.

At the same time, the Committee calls on the Scottish Government to take urgent action to develop and implement a national plan to give adults and children with autism and ADHD across all health boards in Scotland access to clear and consistent pathways to support. This should include continuing to work with NAIT and health boards to implement the recommendations from the pathfinder pilots and delivering an updated Specification for children's pathways.

The Committee recognises that the scale of demand for neurodevelopmental assessments has made it necessary to put certain thresholds in place before a referral is made and that this has resulted in gatekeeping access to assessments in some areas.

However, the Committee has been concerned to hear evidence that many people feel those responsible for referrals and gatekeeping do not have an accurate, up to date understanding of neurodevelopmental conditions and how they present, particularly in women, girls and ethnic minority people, meaning that thresholds may not be applied fairly or appropriately in some cases.

The Committee is further concerned that an over-reliance on threshold setting and gatekeeping risks resulting in many individuals being unable to access the support they need at the appropriate time, leading to a situation where these individuals will then present themselves at a later stage having reached a state of crisis, which can be considerably more difficult and costly to treat. The Committee concludes that, although perhaps understandable when trying to deal with consistently high demand, such an approach to managing access to pathways risks being counterproductive in the longer term.

The Committee therefore calls on the Scottish Government, in responding to this report, to set out how it intends to address this challenge and to ensure Health Boards shift their focus to a progressive approach which ensures the provision of treatment and support for autistic people and/or people with ADHD at the earliest opportunity, in line with the principles of its Population Health Framework.

The Committee further recommends that the Scottish Government takes action to ensure improved consistency and timeliness across Scotland of access to treatment and support, including an assessment or diagnosis where appropriate.

To further improve quality and consistency, the Committee calls on the Scottish Government to develop a plan to deliver mandatory training to all those who are involved in making referrals to neurodevelopmental pathways. This training should:
be developed in collaboration with people with neurodevelopmental conditions
draw from existing resources already developed by NES, NAIT and in health board areas where appropriate
be monitored and reported on to determine rates of uptake.

More broadly, the Committee recommends a programme of mandatory training on neurodevelopmental conditions for all health and social care staff in patient-facing roles.

The Committee notes concerns from many healthcare practitioners that broader application of an open referrals model for accessing ADHD and autism pathways would create a risk of "opening the floodgates" to even greater demand and a rise in inappropriate referrals that would be liable to overwhelm services.

At the same time, the Committee notes a strong desire from many individuals to have the option of open referral available to them. It further notes evidence from certain areas where an open referral model is already in place which suggests concerns about services being overwhelmed are not borne out by experience on the ground. Instead, there is strong evidence to suggest an open referral model can help pathways and services to operate more efficiently and responsively.

The Committee therefore calls on the Scottish Government, in responding to this report, to set out what further action it is taking or plans to take to gather further data about the practical impact and any specific benefits for pathways and services of allowing open referrals, to learn appropriate lessons from experience of open referrals on the ground and to explore how open referrals can be made more widely available across Scotland in a way that allays workforce fears that this will result in services being overwhelmed.

Beyond this, the Committee would encourage the Scottish Government to explore how, in future, processes for open referral can be better integrated into national standards for ADHD and autism pathways and support.

The Committee has been extremely concerned to hear evidence during this inquiry of many individuals having to wait many years on a waiting list for assessment for ADHD, autism and other neurodevelopmental conditions, as well as evidence from many areas where waiting lists have now been closed. It is firmly of the view that, as well as being detrimental to the individuals affected, such a situation is damaging to wider society to which, for as long as they fail to receive the support and treatment they need, these individuals may be prevented from making an active and positive contribution.

The Committee acknowledges evidence of an unprecedented rise in demand for neurodevelopmental assessments in recent years. It has been persuaded by evidence that this rise is not attributable to a tendency towards over-diagnosis but rather to an historic under-diagnosis of ADHD and autism and an improved understanding of these conditions more recently. The Committee is also sympathetic to the suggestion that promoting a narrative around over-diagnosis is unhelpful and risks further stigmatising those with autism and/or ADHD, with the result that their condition is not believed or understood and they are denied access to the pathways and support they need.

Given the current length of waiting times, the Committee believes it is particularly crucial that the quality of communication with those on waiting lists is consistently high, that available information is accurate, supportive and up-to-date, uses neuro-affirming language and is delivered in a way that is responsive to the specific needs of those with autism and/or ADHD.

For the same reason, the Committee calls on the Scottish Government to give much greater attention, including the commitment of appropriate resources, to the development of "waiting well" initiatives that provide suitably targeted access to good information and local support as a consistent and integral part of the waiting process for those on neurodevelopmental pathways.

The Committee welcomes the Scottish Government's establishment of a task force and its commitment of additional funding to support implementation of the National Neurodevelopmental Specification. As part of this work, the Committee calls on the Scottish Government to produce a roadmap setting out clear timelines for improvement of ADHD and autism pathways and support. This should address improvements to information and communication (including the potential establishment of a 'one stop shop'), improved access to local support while waiting, the roll-out of targeted "waiting well" initiatives and the commitment of funding to develop the multi-disciplinary workforce needed to reduce waiting times in the longer term.

The Committee calls on the Scottish Government, in close collaboration with health boards, to undertake a comprehensive review of the assessment process in all areas with a view to developing a National Standard for assessments that guarantees consistency of access, responsiveness and support throughout Scotland. In particular, this review and the resulting National Standard should address:
ensuring diagnostic criteria used in assessments are appropriate and up-to-date;
a presumption against the use of single condition assessments, given the high rate of co-occurrence of ADHD and autism (as well as other neurodevelopmental conditions and other mental and physical health problems) and the active promotion instead of the use of holistic assessments;
the development of guidelines to establish clear qualification requirements for those carrying out neurodevelopmental assessments;
Promoting the direct involvement of individuals with lived experience of neurodevelopmental conditions in helping and supporting others to navigate the assessment process;
clear guidance for the use of alternative approaches to assessment such as "whole school" approaches, "stepped care" and "consensus diagnosis" - to include details of the circumstances in which such alternative approaches may be more appropriate than traditional approaches to assessment;
promotion of a multi-disciplinary approach to assessment, including requirements for members of multi-disciplinary teams to undergo continuous professional development and training on providing neurodevelopmental assessments, to include regular updates in neuro-affirming practice.

To ensure the review and resulting National Standard are as responsive as possible to the needs of those seeking an assessment, the Committee calls on the Scottish Government to ensure individuals with lived experience of neurodevelopmental conditions and the community groups that support them, are actively involved in the review process.

The Committee also believes there should be a requirement on health boards to work with the National Autism Implementation Team to ensure updated service specifications for provision of services are successfully implemented, both for children and young people and for adults.

The Committee acknowledges there are a number of valid reasons for seeking a diagnosis for autism and/or ADHD, including:
Giving individuals a sense of validation and understanding about themselves as people, including understanding current and past life experiences
Determining what forms of support, adjustments or treatment would be most helpful and giving individuals and/or parents and carers the ability to advocate for these.

At the same time, the Committee also acknowledges fundamental differences between these conditions which mean the reasons for seeking a diagnosis will vary between autism and ADHD. In particular, the Committee notes that, as a medically treatable condition, there are especially important reasons for receiving a positive diagnosis for ADHD since this will ensure the individuals affected are able to access the correct medication to treat their condition.

While welcoming the Scottish Government's recognition of the importance of diagnosis while committing itself to ensuring receiving a diagnosis is not a prerequisite for accessing support, the Committee remains concerned that, in reality, the lack of a formal diagnosis has become a barrier to accessing support for too many individuals.

The Committee therefore calls on the Scottish Government, in responding to this report, to set out what action it is taking or plans to take to ensure the lack of a formal diagnosis is not used as an artificial barrier to accessing support and to encourage practitioners to fully explore what support can be made available while individuals are waiting to receive a formal diagnosis.

The Committee highlights the particularly urgent need for formal diagnosis for those individuals who require it to be able to access the correct medication to treat their condition. It therefore calls on the Scottish Government to set out what strategies it is pursuing to reduce waiting times for assessment and diagnosis of these individuals.

The Committee has been concerned to hear evidence of many individuals being forced to seek a private diagnosis, often at significant financial cost, due to long waiting times for accessing neurodevelopmental assessment and diagnosis via the NHS. The Committee is particularly concerned that this risks creating a two-tier system where timely access to diagnosis is based on an individual's ability to pay.

The Committee has been similarly concerned to hear evidence that the quality of assessments and diagnoses acquired privately can be variable. The Committee therefore urges the Scottish Government, in responding to this report, to set out what action it is taking or plans to take to promote a level playing field in standards of assessment and diagnosis across the public and private sectors.

The Committee further notes the negative experiences of many individuals, having acquired a private diagnosis, of getting their GP to recognise that diagnosis or to agree to provide "shared care". The Committee recognises that greater reliability of standards for assessment and diagnosis, whether provided privately or through the NHS, are needed to give GPs the confidence to accept "shared care" agreements.

The Commitee also recognises that, until NHS capacity is significantly expanded, individuals seeking private assessment and diagnosis is likely to be an ongoing fact of life. In these circumstances, it calls on the Scottish Government to work with Healthcare Improvement Scotland, health boards and GPs to address problems with shared care agreements and to develop a more consistent approach to their use.

The Committee recognises the particular importance of well managed transitions for people with neurodevelopmental conditions but regrets that too many report experiences of poorly managed transitions and a lack of appropriate support during transitional periods in their lives.

The Committee highlights evidence of particular challenges for people with neurodevelopmental conditions in making the transition from child to adult services at a particularly vulnerable stage of their lives - and the crucial importance of maintaining consistent relationships during this period to be able to successfully navigate this transition. The Committee has also heard similarly concerning evidence of poor planning and support for children with neurodevelopmental conditions in making the transition from primary to secondary school and from education to post-education settings.

In light of this evidence, the Committee calls on the Scottish Government, in responding to this report, to set out what action it is taking to ensure proper implementation of its Principles of Transition policy, GIRFEC policy and guidance and the relevant provisions of the National Neurodevelopmental Specification, so that people with neurodevelopmental conditions do not experience any further negative effects from poorly planned and supported transitions.

In so doing, the Committee further calls on the Scottish Government to address an apparent gap in the National Neurodevelopmental Specification for Children and Young People by ensuring there is absolute continuity of care throughout these important transitions and into adulthood.

The Committee pays particular tribute to the work of third sector organisations in supporting people with neurodevelopmental conditions during periods of transition and calls on the Scottish Government, in responding to this report, to set out what it is doing to support third sector organisations operating in this space.

The Committee pays tribute to the crucial work of third sector organisations in providing support to those people with ADHD and autism who have not received or are yet to receive a formal assessment or diagnosis from statutory services. It notes that, without access to such support, many individuals would be left isolated and unsupported.

The Committee further commends the work of the third sector in involving people with lived experience of neurodevelopmental conditions in delivering the support it provides - and notes how much their involvement is welcomed by individuals using these services.

Given how crucial third sector support can be in this area, the Committee welcomes the Scottish Government's ongoing commitment to supporting third sector organisations through vehicles such as the Autistic Adult Support Fund. It calls on the Scottish Government, in responding to this report, to set out what further actions it plans to take to continue to support the third sector and to place funding for third sector organisations on a more sustainable long-term footing.

The Committee highlights the broad range of evidence it has heard throughout this inquiry in support of a whole society approach as the most effective means, longer term, of supporting people with neurodevelopmental conditions, improving wider public awareness and combatting stigma.

In this context, the Committee welcomes the Scottish Government's commitment that its new task force will take a whole-systems approach, working across the health and education sectors to implement the National Neurodevelopmental Specification.

Beyond this, the Committee calls on the Scottish Government, in responding to this report, to set out what actions it will take to further promote a whole-systems or whole society approach, including:
learning the requisite lessons and developing associated guidance from examples of best practice in whole systems approaches, such as that seen in NHS Ayrshire and Arran;
what, if any, steps it intends to take towards developing a national workforce plan as an important component of a whole-systems approach;
how distribution of funding will be adapted in future to facilitate a more integrated, cross-sectoral approach to support;
promoting educational settings that are more inclusive of people with neurodevelopmental conditions;
addressing the particular needs of families with multiple family members who are living with neurodevelopmental conditions; and
promoting closer collaboration between the various different public services people with neurodevelopmental conditions come into contact with.

The Committee has heard evidence from many contributors to the inquiry who have expressed regret that the Scottish Government has paused plans for a Learning Disabilities, Autism and Neurodivergence Bill, which it was felt would contribute positively towards promoting a whole systems or whole society approach to supporting people with neurodevelopmental conditions. The Committee notes the Minister's commitment, in the absence of further progress on a Bill, to publish draft provisions. It calls on the Scottish Government, in responding to this report, to set out a timetable for publication and to provide further details of what these might cover.

The Committee highlights the importance of consistent, reliable, high quality data on neurodevelopmental referrals and waiting times across Scotland to be able to plan services effectively and to make ongoing improvements.

In this context, the Committee has been concerned to hear evidence of significant gaps and a lack of standardisation in data gathering, including across NHS Boards.

The Committee therefore calls on the Scottish Government to set out what steps it plans to take to enable routine quarterly reporting of data on referrals and waiting times for autism and ADHD, underpinned by national guidance.

While welcoming that this will be an area of longer term focus for the new Scottish Government task force, the Committee further calls on the Scottish Government to address how it intends to overcome potential barriers to more consistent data collection and reporting, such as use of different software systems and location of data across multiple different systems and services.

The Committee considers that future work to improve data gathering and reporting should culminate in the establishment of a comprehensive dashboard, with the aim of improving transparency, enhancing effectiveness, and reinforcing patient trust.