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Carey and colleagues discuss the problem of identifying people with an intellectual disability (ID) using Read codes and suggest “most individuals known to services have likely been identified” in their study. Their conclusion underestimates the challenge of identifying people with more mild to moderate ID who have healthcare needs – the majority of whom may not self-identify as having an ID and are not assigned a relevant Read Code in their general practice. The present study, as have other local and national studies based upon case registers, identified less than half the estimated 2% of the population with an ID.1
Even among those patients assigned a Read Code or in receipt of services, neither condition is a guarantee of being recorded on local LD registers and therefore receiving an annual health check. Even conducting an additional Read Code search as well as a search of LD registers is not likely to be adequate.2-3 Coding for ID is variable and needs clearer guidelines as a variety of codes can be entered. This is especially true of those individuals with mild to moderate ID. Furthermore a lack of consistent and scheduled data sharing has meant practices may not have access to Local Authority information on which individuals are in receipt of services so current LD registers may be out of date.4
What we also know about people with ID is that their living arrangements make a significant difference to their self-management [5]. Lack of supporter involvement has been shown as a barrier to positive health changes5 and this may not be adequately reflected in the definition of a communal setting as supporter involvement can only be assumed. There are Read Codes that indicate supporter involvement but there are only sporadically used.
The study represents mainly those people with ID who are the most easily identified because they have a more severe to profound ID or because they are known by their GP to be in receipt of services. This means that the population of people with a mild or moderate ID, living independently, are not characterised because they access fewer services and their records are not flagged. In our recent study of adults with mild to moderate ID and type 2 diabetes6 we have found those people living independently with little access to services often have the worst diet and lowest levels of physical activity.
References
1. Public Health England. Learning Disability Profiles. http://fingertips.phe.org.uk/profile/learning-disabilities
2. Lodge, K. Milnes, D. and Gilbody, S. Compiling a register of patients with moderate or severe learning disabilities: experience at one United Kingdom general practice. Mental Health Fam Med 2011; 8(1): 29-37.
3. Allgar V, Mir G, Evans J, Marshall J, Cottrell D, Heywood P. Emerson E. Estimated prevalence of people with learning disabilities: template for general practice. Br J Gen Pract 2008; 58(551):423-428.
4. Chauhan U, Reeve J, Kontopantelis E, Hinder S., Nelson P., Doran T. Impact of the English Directly Enhanced Service (DES) for Learning Disability. 2012 Health Sciences Research Group, University of Manchester.
5. Melville, CA, Mitchell F, Stalker K, et al. Effectiveness of a walking programme to support adults with intellectual disabilities to increase physical activity: walk well cluster-randomised controlled trial. Int J Behav Nutr Phys Act 2015; 12(125).
6. OK Diabetes. www.tinyurl.com/okdiabetes