Epilepsy service introduced tailor-made specialist care
An epilepsy service offers specialist care and clinics for people with learning disabilities to ensure their needs are met.
Epilepsy specialist nurse John Toland set up the service from scratch after identifying an absence of specialist care for people in hospital and the community.
Now clinics are provided across NHS Fife so patients can use services near their home, and the team offers home visits and tailored outreach work when needed. Appointments are longer to allow for additional communication needs, information is made accessible and there is consistency in the clinic setting.
The team has a holistic approach, taking account of the person’s needs, their health status and epilepsy condition in the context of their daily circumstances. The aim is to ensure the person with a learning disability is able to lead as independent a life as possible.
John scoped the need for the service, then arranged for clinic space in five hospitals. He identified the parameters in which the service would or could operate as well as the outcome measures and audits that would identify good practice and areas for development.
The high quality, evidence-based interventions have made a huge difference to service users’ lives – including the detection and treatment of hippocampal sclerosis in a woman with refractory epilepsy, which had gone unnoticed by neurology for years. She is now seizure-free.
Changes to medication regimens have given service users better seizure control as well as improved quality of life using less sedation.
John says: ‘Epilepsy in the context of learning disability provides unique challenges for practitioners. The overall impact of seizures on daily life and overall functioning remains very high.
‘Individuals may experience issues with diagnosis, access to good quality treatment management and overall care and support.
‘Services need to be adaptable and flexible. A bespoke learning disability epilepsy specialist nurse service can surmount some of those challenges and provide a more person-centered approach to overall care management.’
John is a finalist in the learning disabilities category of the RCNi Nurse Awards 2016, the profession’s top accolade for nursing excellence.
The award, sponsored by Cambian, is for nursing staff who have developed ways to support the wellbeing and social inclusion of people with learning disabilities to maintain physical and mental health.
Learning Disability Practice editor Colin Parish was a judge on the shortlisting panel. He says: ‘Learning disability nurses always go the extra mile for their service users – it’s in their blood.
‘But the candidates shortlisted for this year’s RCNi Nurse Awards have shown that even more can be done to improve the lives of people with learning disabilities, whose lives are often more challenging than necessary.
‘All of the shortlisted candidates have overcome obstacles and worked hard to try to even up the playing field and give their clients the best chance possible for a good, healthy life.’
About the sponsor
Cambian is one of the largest providers of specialist behavioural health services in learning disabilities, autism, mental health rehabilitation, education, acquired brain injury rehabilitation, impaired hearing and, more recently, children’s residential care, fostering and specialised services for children experiencing sexual trauma. Our passion focuses on positive outcomes for the individuals we provide support and services to. Our nurses are critical in their delivery of care and support to ensure these outcomes can be achieved resulting in the highest possible quality of life.