In response: Evaluating the care of a multidisciplinary clinic by using the White Paper “Listening for a change: Medical and social needs of people with intellectual disability who have epilepsy”

The White Paper1 sought to provide an impetus for epilepsy services in any country and at any level of sophistication to improve the care of this population. Van der Linden et al. provide a timely and reproducible response to the White Paper.2 We believe their letter reflects an important means of implementation of change for people with intellectual disability and epilepsy through auditing the use of the four domains: diagnosis and medical treatment; service delivery; education and employment; and social, romantic, and family life. Their audit showed how in a center of excellence staffed by experienced epilepsy professionals it is possible to address all domains, however all domains were rarely addressed in individual patients. The domain of emotional burden in families and caregivers was rarely addressed. We concur that focused guidelines related to all four domains are the next step. Caregiver burden is of course multifactorial, yet increasingly we can focus our understanding of carer need that is specific to the etiology of the intellectual disability, such as in the case of Rett syndrome.3 Epilepsy knowledge is expanding rapidly, much of it specific scientific advances in our understanding of individuals and groups of individuals.4 It is a challenge to apply these changes while including the whole family and care environment. We propose that as we individualize medicine4 and focus on individual factors in epilepsy, we do not exclude those with complex needs, and that we include families and carers in our treatment strategies. Clinicians will need guidance in this element of care and will often need the support of nonmedical services: guidelines would be the ideal vector for change, providing a blueprint from which to work and be evaluated. The crucial need now is for guidance in all four domains to be produced and for the evidence base, particularly for interventions to alleviate family burden, to be developed. Although it is likely that some direction will come from the international epilepsy community, local solutions are needed. We recommend that services follow the example of this audit to identify unmet needs and produce local policy and guidance to address the gap in care delivery. None of the authors has any conflict of interest to disclose. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.