Introduction
Across the UK and especially on Teesside, the number of people seeking help for physical symptoms has risen, just as with mental health issues. Neurodivergent conditions are a major contributory factor: fibromyalgia, pelvic pain, migraine, gastrointestinal issues, palpitations, self-harm, and psychosis are all greatly over-represented among neurodivergent people.
Teesside is among the most highly deprived areas in the UK, with low educational attainment, high unemployment, much drug abuse and poor health care outcomes. We have recognised and publicised the links between poor health and neurodivergence [1], showing associations with hypermobility, food intolerance and gender dysphoria [2]. We demonstrated that these connections also extend into their families [3]. Whilst young women present more frequently with pain, neurodivergence is more readily recognised in young men. Masking among females accounts for much of this dichotomy, and precipitates poorer mental health and adverse socioeconomic outcomes. Suicide and self-harm are increased tenfold in this group, who often struggle to understand themselves and others, and to feel integrated into society [4, 5].
By both reducing inequality for such people and increasing staff knowledge and experience, we aimed to achieve significant and sustainable improvement in clinical services for these individuals across services spanning both primary and secondary care.
Methods
We developed a multi-disciplinary team (MDT) with physiotherapy, clinical psychology and specialist nurse input and expanded this into the community, as informed by a combination of patient suggestions and evidence-based clinical research. Partnerships were forged with other clinical teams within the Hospital, and with community support services for people with neurodivergent conditions. We complemented our clinical service by publishing a strategy to inform and advise patients on best practice in managing their pain [6]. We also summarised the rheumatological disorders associated with neurodivergence and calculated their prevalence [7].
By working with professionals across specialities we streamlined the service to meet patient related outcomes (PROs) in a cost effective and efficient way. We have also promoted patient and public awareness and involvement (PPI) through our national Podcast [8], which explains the links between neurodivergence and other conditions in simple and practical terms with the emphasis on supportive self-care.
In parallel, we investigated factors driving chronic pain with Newcastle University in a clinical research program. Our data showed strong correlations between pain and neurodivergence [1]. We have also supported families of young patients with neurodivergence and related illnesses, helping those families who have tragically lost children through subsequent Inquests and Public Enquiries, to help them with their grief and reduce the risks of recurrence.
We have confirmed that neurodivergence is associated with increased morbidity, related to multiple physical and mental health comorbidities, and linked to several adverse psychosocial outcomes [4, 5]. We also examined the roles of pain and autism in the development of eating disorders in both young women [9] and men [10], providing lived experience of the condition and validated recommendations on management [11]. In every production and publication, our authorship includes patients with these conditions, ensuring PPI facilitates the production of PROs. These benefits were achieved by restructuring existing services with no additional investment. Coordinating community and secondary care facilities is the prerequisite for improving both PROs and cost-effectiveness.
Results
Over the last four years our service has supported 327 neurodivergent patients. We invited completion of a structured questionnaire assessing ease of access to support, treatment as an individual, feeling heard, comfort, correspondence and efficacy of this approach on coping. Patients often stated that this was the first time they felt listened to, validated and supported.
The numbers of patients seeking our service increased year on year, whilst waiting times have fallen and patient satisfaction has risen. Joint working between community and hospital services has greatly improved the patient experience. The results are shown in Table 1 and the interventions most often used are shown in Table 2.
We also established links with the education sector, sharing recommendations with schools, colleges and the University relating to specific needs of young people. Within the criminal justice service, we highlighted the extraordinarily high prevalence of chronic illness and neurodivergence among those imprisoned in the UK suggesting modifications to the present system to better serve the needs of young people who rarely benefit from incarceration [12]. This is a particular priority as several aspects of neurodivergence can combine to precipitate inappropriate behaviours which may attract a criminal record. This has a major adverse effect on their subsequent health care needs, employability and self-esteem. We want to avoid the self-fulfilling prophesy of many young people caught in this trap, whose low self-esteem can lead to an acceptance of suboptimal health and social care outcomes.
We prepare all letters to healthcare referrers and providers about our patients while they listen, contribute and correct the content: 'Nothing about them without them'. They also decide how much information should be shared with other individuals and organisations. This transparency builds trust between service users and ourselves.
