{
  "abstract": "Purpose Epilepsy has been identified as one of the main causes of mortality in adults with learning disabilities. Furthermore, generic epilepsy clinics might not be suitable for people with severe learning disabilities and autism. Therefore, it is indicated that specialist clinics should be established to offer the necessary reasonable adjustments and support. This research study was designed to review a recently established specialist learning disability epilepsy clinic in Leicestershire using feedback from the patients and carers who attended the clinic.Methods An online survey was distributed to approximately 60 patients, parents and carers of patients that attend the clinic, focussing on the specialism of the clinic and the reasonable adjustments offered, which generated 30 responses. An accessible participant information sheet was disseminated which introduced the aims and purposes of the study. Information was provided on how data would be used and stored. Participants were advised by continuing with the survey they were consenting to their data being used. They were asked to rate their agreement with several statements and provide written responses. Template analysis was used to interpret the qualitative data to identify key themes.Results The responses from the survey were highly positive, citing the benefits of the specialist clinic. Analysis of the data identified 5 distinct themes that were deemed important by the participants. Firstly, the flexibility of the clinic around appointment times and venues was praised, and the offer of home visits was particularly valued. The second theme identified was communication , with participants highlighting a personal approach from seeing the same practitioners, and that staff were clear and reachable. Thirdly, the consideration of the clinic was cited, with staff demonstrating a keen understanding of learning disabilities and providing a compassionate, open space for discussion. The fourth theme identified was competence , with participants finding staff to be effective, trustworthy, and thorough. The final theme recognised was the value of the clinic, due to its specialism and the demand by participants for it to be kept running.Conclusion The study demonstrated that the clinic was found to be favourable when compared to a generic service due to its specialism in catering for people with severe learning disabilities and autism. Future recommendations for improvement included increased staffing, epilepsy training for the community learning disability nurses, and an integrated and streamlined pathway in accessing learning disability multidisciplinary teams, for a more holistic management of epilepsy and co-existing conditions in this population.",
  "authors": [
    {
      "affiliations": [
        "Leicestershire Partnership NHS Trust, University of Leicester"
      ],
      "name": "Olivia Mackenzie"
    },
    {
      "affiliations": [
        "Leicestershire Partnership NHS Trust, University of Leicester"
      ],
      "name": "Laura Rodman"
    },
    {
      "affiliations": [
        "Leicestershire Partnership NHS Trust, University of Leicester"
      ],
      "name": "Lisa Hopkins"
    },
    {
      "affiliations": [
        "Leicestershire Partnership NHS Trust, University of Leicester"
      ],
      "name": "Michelle O’Reilly"
    },
    {
      "affiliations": [
        "Leicestershire Partnership NHS Trust, University of Leicester"
      ],
      "name": "Reza Kiani"
    }
  ],
  "title": "#8169 Evaluation of a specialist learning disability epilepsy clinic",
  "uid": "b6f74e10-af31-53d0-9f15-371d46c972a4"
}