Patient- and carer-held health records: can they improve annual health checks for patients with learning disability?

Abstract

Learning disability (LD) is a condition characterised by significant impairments of both intellectual and adaptive functioning, and an onset before the age of 18 years.1 The prevalence of LD in England is estimated to be around 2 million.2,3 This population has a significantly high representation of mental and physical health comorbidities, and are vulnerable to both acute and chronic health problems.4 Patients with LD can often struggle with issues such as communication, creating difficulties when making informed choices. Patients with LD have a shorter life expectancy and increased risk of early death when compared with the general population.5 Current evidence suggests that patients with major mental health problems on average live 20 years less than the general population.6 Those with epilepsy are associated with significant premature mortality.7 The factors influencing this are complex and include individual lifestyle choices, side effects of treatment, and disparities in healthcare access and provision. These contribute to these poor outcomes and are not fully understood.8 There is robust evidence that certain categories of drugs prescribed for certain mental health problems such as psychosis and medication for seizures can adversely influence physical health outcomes, especially without regular monitoring. National initiatives and guidelines9,10 have attempted to address the need for regular check-ups to ensure that the medication is doing no harm. There is a focus on increasing awareness of the need for monitoring, especially given the long-term damage and risk to the individual through the medication, as well as the costs to the health service thereof. Medicines in both these categories can cause a rise in glucose, lipids, or prolactin, which can cause health problems. They can also disrupt kidney, liver, and thyroid function as well as affecting the production of blood cells in the …