The ‘Need to Know’ self-management communication tool
Emma Francis, Highly Specialist Mental Health & Autism Spectrum Disorder (ASD) Occupational Therapist
Cwm Taf Morgannwg University Health Board (CTMUHB)
Secondary care mental health patients can access the highly specialist mental health & ASD occupational therapy service for intervention, post ASD diagnoses.
Many neurodivergent adults (formerly referred to as neurodiverse, meaning a person who lives with Dyslexia, ASD, ADHD, Developmental Coordination Disorder and/or other neurological conditions), experience difficulties processing everyday sensory information.
The ‘Need to Know’ document (formerly known as the Patient Passport) promotes self-management by formulating specific sensory strategies that aim to reduce the likelihood of sensory overload. The ‘Need to Know’ document communicates the person’s sensory differences at times when they are unable to. The self-management communication tool is co-produced with the person as part of specialist intervention.
The long term vision is for people to access the tool online through an open-access mobile application, reducing the need for referral to specialist services.
- Explore a suitable title for the communication tool to replace ‘patient passport,’ anecdotal evidence suggest the title ‘patient passport’ is disabling for the person outside of health care settings. The communication tool has proved helpful in colleges, universities or employment settings.
- To conduct a small scale evaluation (using self-reporting questionnaires), to explore if there is an appetite to develop the existing paper document into an electronic version (App) in the CTMUHB ASD population.
- Approach reputable national ASD organisations to explore their interest and willingness to launch and host the App from their website.
- The long term vision involves securing an industry partner to further develop the communication tool into an online, open access web based application. The App could potentially be modified and rolled out beyond the autistic community for use with dementia and multiple other lifelong conditions.
Prior to the Covid-19 pandemic, networking to explore a potential industry partner was both exciting and encouraging. Despite anticipated time management challenges associated with managing the Bevan project alongside clinical commitments. The aim of the project shifted direction, the initial idea of developing the paper document into an App was placed on hold to allow for a full evaluation of the paper format (to ensure the content of the potential App remained both meaningful and relevant).
Looking to the future, the project was presented to the University of South Wales as a potential PhD study. When Covid-19 hit, opportunities to secure funding for a PhD study become a challenge with the majority of funding being diverted to Covid-19 research. Funding issues, alongside clinical commitments, saw the idea suspended with patient caretaking priority.
Patients reflected on how the ‘Need to Know’ document supported them to communicate sensory differences. They told us:
- The next steps involve continuing to work co-productively with patients to ensure the “Need to Know” document meets the identified need, resulting in improved patient outcomes and experiences.
- A small scale service evaluation of the “Need to Know” document has been approved by CTMUHB Research & Development Department.
- In readiness to undertake a PhD study, a PhD proposal and study plan will be submitted to University of South Wales.