KEEP YOUR EYES OPEN! Untreated co-morbidities in adults with Epilepsy and Learning Disability

1. KEEP YOUR EYES OPEN!Untreated co-morbidities in adults with Epilepsy and Learning Disability Authors; Flinton L, Pashley S, Lewington E

2. People with learning disabilities are more likely to have poorer health than the general population. Diagnostic overshadowing and the possibility of unusual presentation of health problems can delay diagnosis and timely access to appropriate and effective health interventions.

3. Specialist Epilepsy & Learning Disability Service Nottinghamshire SP/LF 2012

4. Meet the team Dr Singhal Consultant Neurologist Lisa Flinton Epilepsy and LD Specialist Nurse Sarah Pashley Epilepsy & LD Consultant Nurse Dr O’Donoghue Consultant Neurologist Dr Szabo Consultant Neurologist

5. The team provide services to:  Those in whom diagnosis is difficult and expertise in epilepsy, learning disability, and associated health conditions is essential in the differential diagnosis and on-going management e.g. complex behavioural, sleep, movement, communication, and psychiatric disorders

6. Patients with poorly controlled epilepsy Patients who have difficulty accessing mainstream health services and clinical investigations Children with epilepsy in transition Health care professionals and community care providers requiring specialist advice, education and training

7. Patients requiring assessment and referral for Vagal Nerve Stimulation Therapy (VNS) and adjustment of VNS parameters • Women with learning disabilities who require preconception advice and management of epilepsy and antiepilepsy medication through pregnancy

8. Purpose To determine the prevalence and nature of undiagnosed and untreated co-morbidities in new referrals to an epilepsy and learning disability service.

9. Method • Our clinical database identified new referrals with epilepsy and learning disability over a 12 month period. 93 adults were referred. Patients with any previous contact with the service were excluded. 62 met the inclusion criteria. • All patients were assessed by a Consultant Nurse with expertise in epilepsy and learning disability and a Consultant Neurologist.

10. Medical records were reviewed to compare diagnostic and co-morbidity information provided at the point of referral with that following detailed assessment. Co morbidities were treated within our Service or through appropriate specialist referral (who confirmed co-morbid diagnoses).

11. Results • Previously undiagnosed and untreated co-morbidities were identified in 58% of newly referred patients (36 people). Ages ranged from 19-64 years.

12. The highest prevalence was in the age ranges 20-29 years and 40-49 years

13. 24 separate health conditions were identified

14. 23% (14 people) were vitamin D deficient.

15. Conclusion • We demonstrate the importance of a holistic approach to the assessment and treatment of patients with a learning disability presenting to an epilepsy clinic. • A learning disability may mask co-morbid conditions.

16. Recommendations • We recommend a proactive and comprehensive approach to assessment. We find an integrated Neurology and Learning Disability Service beneficial. • Further study is required to determine why a high proportion of adults present with undiagnosed health needs despite a Primary Care health screening programme in the UK for adults with learning disability.