Establishing Transition Pathways for Young People with Attention Deficit Hyperactivity Disorder (ADHD)

Transition into adult life is rarely straightforward. There is consensus that transition from adolescence to adulthood is a period of immense significance both in social and psychological terms during a time when young people are likely to move away from home, either to go to college/university or for job opportunities, start new relationships and assume new roles and responsibilities (Young et al 2016).

For young people with ADHD, who are more likely than many of their peers to require continued support of informal and formal networks, a change in the clinical management of ADHD presents an additional ‘transition challenge’. With this in mind, our aim has been to develop a pathway that not only demonstrates best practice but is also accessible to all young people who require transition from children to adult ADHD services across all localities of the Trust.

As a specialist multi-disciplinary ADHD team, our primary focus has been to:

• Establish a transition pathway that demonstrates meeting NICE clinical guidelines.
• Work in collaboration with colleagues in Paediatric and CAMHS Services to establish joint transition clinics that make efficient use of clinical resources.
• Have access to relevant information to inform the ongoing clinical care and risk management of adult ADHD and additional physical and mental health conditions.
• Provide information that is useful and accessible to young people and families during the transition process.
• Gather feedback from young people and families to understand their experience of the transition process and be responsive to making changes to improve.
• Promote equality of access to the ADHD transition pathway across local Clinical Commissioning Groups (CCGs)

Variances in local commissioning priorities carry the risk that transition between children and adult ADHD services are not equitable across localities. Moreover, children and young people receive ADHD care from either Paediatric or CAMHS Services dependent on the area they live. Collaboration between commissioner and provider services is integral to the development of a transition pathway that will meet the clinical guidelines identified by NICE.

The Consultant Psychiatrist and Specialist Nurse Practitioners have played key roles in facilitating meetings with colleagues in children services to establish:

• Dedicated transition clinics that allow clinicians to plan and focus on transition issues and develop professional networks.
• A transition referral form for children services to include a summary of relevant clinical and risk information in the absence of a shared electronic clinical record system.
• Sharing of service user feedback reports to identify areas of improvement and celebrate good practice.

Baseline audits against NICE standards provided an opportunity for us to identify areas of the existing transition pathway that demonstrated full compliance, areas that could be improved and additionally any areas outside of the Service and Trust remit due to current commissioning arrangements.

We found we were doing well in the planning and attendance to transition appointments in the 6 months before the young person reached the age of 18 with flexibility for joint working when required. Similarly, we provided both written and verbal information to offer an introduction to adult services and support the young person and their family know what to expect at the initial adult appointment.

We identified the information provided on the transition process could be improved by developing information ‘on a page’ in a more accessible format for young people to better describe what support is available before and after transition. In addition, we found our service user feedback questionnaires could be improved to help us better understand the individual transition experience and also provide information to measure compliance against transition standards in the future.

The concept of named worker was identified as a gap in the existing pathway that could add value both before and during the transition process, with the potential to reduce non-attendance to initial appointments and provide additional reassurance for the young person and family of knowing who to contact with any queries.

The concept of including a named worker principle to the pathway was discussed by the multi-disciplinary ADHD team with agreement:

• For named worker responsibility to be allocated to the clinician in attendance at the transition clinic and for them to remain the point of contact during the transition process.
• To produce a named worker flyer to include the name and contact details of the clinician (named worker) and how they can help during transition.
• For the named worker to make telephone contact in the event that any additional information is required or the young person does not attend the initial appointment.

We had support from the Trust Communication Team to design a one page leaflet to explain what young people could expect in transition from children to adult services. We asked for the leaflet to make use of colour and graphics to make it more interesting and easier for young people to read. (See supporting material)

Written information is given to the young person at the face to face transition clinic appointment when there is an opportunity for asking questions and reassurance of how we can support the young person and family to experience a smooth and supportive transition process. During the transition clinic, the clinician can identify any particular issues that may need additional planning, such as a joint initial appointment for the named worker to be present or additional meetings prior to transition.

We reviewed and amended our service user feedback questionnaire and asked for it to be accessible on an electronic tablet for completion after the initial appointment with the adult service. The questionnaire will help us to understand if the young person has been fully informed about the transition process, if the information we provide is useful and their experience of being listened to and included in their care.

We promoted the development of our transition pathway at local and regional forums to share good practice and highlight the impact a gap in commissioning of transition services can have for young people with ADHD. Similarly, we promoted the use of the transition referral form with our colleagues working in children services to maximise efficient sharing of information and to summarise what is often an extended period of assessment and care during childhood. (see supporting material)

There are challenges introducing new ways of working when providing a transition pathway across paediatric and CAMHS services in different geographical areas. Differences in established models of care, record keeping systems and administrative processes require collaboration to agree what is achievable within available resources. The planning and facilitation of meetings that included lead clinicians involved in the transition of young people with ADHD were invaluable in establishing shared good practice between services.

Transition from children to adult ADHD services should not be a handover of care but rather a process of planning and collaboration between young people, their family and professionals. NICE guidance and standards are clear and achievable points of reference for services to measure themselves against in order to develop an efficient transition process.

From a service perspective, we have an established transition pathway that meets best practice guidelines for young people with ADHD in all but one of the Trust localities. The NICE audit process allows for gaps in service provision to be highlighted and we have been able to emphasise our findings to relevant commissioners and CAMHS colleagues with responsibility for the care and treatment of young people approaching transition. In the short term, there is agreement for individual referrals to be made to the adult service for consideration of individual CCG funding to be approved for ongoing review of medication when the need for ongoing treatment in adulthood has been identified. This follow up will fall short of the full transition pathway available in other localities that include the use of the ADHD Star to identify the need for a multi-disciplinary care plan to support the achievement of individual goals.

The first ADHD transition survey following introduction of the named worker principle reports positive outcomes based on 5 responses:

• 100% of people reported they knew who to contact (named worker) if they required support during the transition process
• 80% of people were aware that a member of the adult ADHD would be present at the transition appointment.

We recognise this survey has a low response rate and the need for a pro-active approach in order to gather feedback from as many people as possible who experience the transition process.

A multi-disciplinary approach has worked well in the development of an ADHD Transition Pathway. We are aware of challenges for clinicians in CAMHS Services who may be seeing young people for the first time as they approach transition and of the time constraints to complete the transition referral form. Without this information, the process of carrying out a reassessment of the young person to establish the need for continuing treatment into adulthood and a comprehensive assessment after transition to adult services (NICE guideline NG87) is less efficient. In addition, the young person and family may be faced with the frustration of having to repeat factual information that is already recorded as part of the clinical record.

There has been interest in the development of our transition pathway from a local and regional perspective. Our hope is that through sharing good practice clinicians working in the field of ADHD will increasingly advocate the need for consistency in the process of transition irrespective of the locality they live; with collaboration between services being integral to achieving a positive transition for the young person and their family.

• Transition should be viewed as a process not an event, and should normally occur by the age of 18.
• Young people with ADHD face inequality in the provision of support during transition from children to adult services.
• Using NICE audit tools are useful for highlighting gaps in service provision and measuring the quality of transition between children and adult services.
• Clinicians from children and adult ADHD services need to have dedicated meetings to plan, agree and review transition processes that make best use of available resources.
• Young people and families need to be provided with accessible information to understand what they can expect in transition from children to adult ADHD services.
• The introduction of a named worker role provides consistency for the young person and family during the transition process.
• Gathering feedback from young people with ADHD requires a proactive approach and could be part of the named worker role whilst maintaining confidentiality of responses provided.
• Sharing good practice at a local and regional level has the potential to improve a consistency across children and adult services of access to a supportive and timely transition process that reflects current best practice.

Reference:

Recommendations for the transition of patients with ADHD from child to adult healthcare services: a consensus statement from the UK adult ADHD network (2016)     https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-016-1013-4