SETPEG AUDIT OF EPILEPSY CLINICS Somnath Banerjee 28 September 2010 Childhood epilepsy requires integrated medical, educational and community services.

Background NICE, SIGN and the BPNA have all made recommendations that paediatric epilepsy services should undergo regular audit. SETPEG did an audit of epilepsy clinics run by it’s members at various sites. The proposal & data capture were reviewed and approved by the SETPEG working group committee.

Aims The audit was to gain an initial snapshot of some aspects of service quality across South Thames East with the hope that the findings will be able to contribute positively to the national Epilepsy 12 audit. The primary aim of this audit is to measure current practices against national and local guidelines.

Objectives Multi-axial seizure classification of ILAE. Corrected QT interval is calculated in diagnostic uncertainty and EEG is arranged in a convulsive episode. Patients and carers are given the information leaflets or directed to appropriate website. Information provided about AE of AED. Developmental/academic progress is documented. Written care plan. Access to epilepsy nurse specialist. 1. Adherence to NICE, SIGN and STEPEIG (SETPEG) for the development of integrated epilepsy services. 2. 100% desired in all these areas. 3. Multi-axial classification suggested by NICE

Inclusion Patients must have been diagnosed after 2nd January 2005. Attending follow ups for at least 12 months at the time of data capture. Monday 1st February 2010 to Friday 26th March 2010 (eight weeks). Aged 17 years or under at the time of referral. Inclusion criteria Completing the proforma in follow up visits meeting the criteria during those dates, up to a maximum of 50. Exclusion criteria= 1. Age 18 years or over. 2. Diagnosed before January 2004, 3. Follow ups outside the set dates.

Design & Setting Paediatric clinics by SETPEG members at various sites in South East Thames .

Data Protection and Caldicott Principles The sharing of information for this audit did not breach Data Protection or the Caldicott Principles. The information collected in the audit was confined to such data as should be shared between multi-disciplinary agencies working within the NHS. The epilepsy database, which was set up for this audit, did not contain any patient identifiers.

Demography Audited notes- 156 from eight Trusts’ sites (1. East Kent Hospitals, 2. Conquest Hospital Hastings, 3. Brighton & Hove, 4. Evelina Children Centre, 5. Princess Royal Bromley, 6. South Downs, 7. Lewisham Hospital & 8. Queen Elizabeth Hospital London). East Kent: Ashford, Canterbury and Margate (3 sites)

Clinic Distribution

Gender Conquest = Male – 46.4%, Female – 42.9%, No info – 10.7% ECC London = Male – 36.4%, Female – 63.6%, No info – 0% South Downs = Male – 64.3%, Female – 35.7%, No info – 0% Main Audit = Male – 57.1%, Female – 41%, No info – 1.9%

Age Range 28 patients from Queen Elizabeth Hospital London not included so the result is for 128 notes. Conquest = Preschool – 10.7%, Primary – 46.4%, Secondary – 39.3%, No info – 3.6% ECC London = Preschool – 13.6%, Primary – 50%, Secondary – 31.8%, No info – 4.5% South Downs = Preschool – 0%, Primary – 50%, Secondary – 50%, No info – 0% Main Audit = Preschool – 7.8%, Primary – 46.9%, Secondary – 43.7%, No info – 1.6%

Standard IA Seizure classification Conquest = Yes – 89.3%, No – 10.7% ECC London = Yes – 100% South Downs = Yes – 100% Main audit = Yes – 84%, No – 16%

Standard IB Syndromic diagnosis Conquest = Yes – 21.4%; No – 75%; Attempted – 3.6%; No info – 0%) ECC London = Yes – 90.9%; No – 0%; Attempted – 4.5%; No info – 4.5%) South Downs = Yes – 7.1%; No – 64.3%; Attempted –28.6%; No info – 0%) Main Audit = Yes – 39.7%; No – 42.9%; Attempted –16.7%; No info – 0.6%)

Standard IIA Is the diagnosis clear? Conquest = Yes – 96.4%, No – 0%, No info – 3.6% ECC London = Yes – 100%, No – 0%, No info – 0% South Downs = Yes – 85.7%, No – 14.3%, No info – 0% Main audit = Yes – 92.3%, No – 6.4%, No info – 1.3%

Standard II B cQT interval calculated Conquest = Yes – 3.6%, No – 0%, NA – 85.7%, Not known – 10.7% ECC London = Yes – 0%, No – 0%, NA – 0%, Not known – 100% South Downs = Yes – 0%, No – 92.9%, NA – 7.1%, Not known – 0% Main audit = Yes – 10.9%, No – 37.2%, NA – 32.7%, Not known – 19.2% (Yes + NA + No info= 52.8%)

Standard II C EEG done Conquest = Yes – 96.4%, No – 0%, No info – 3.6% ECC London = Yes – 86.4%, No – 0%, No info – 13.6% South Downs = Yes – 100%, No – 0%, No info – 0% Main audit = Yes – 91.7%, No – 3.2%, No info – 5.1%

Standard III AE of AED communicated Conquest = Yes – 82.1%, No – 10.7%, NA – 0%, No info – 7.1%, Not known – 0% ECC London = Yes – 63.6%, No – 36.4%, NA – 0%, No info – 0%, Not known – 0% South Downs = Yes – 92.9%, No – 7.1%, NA – 0%, No info – 0%, Not known – 0% Main audit = Yes – 57.7%, No – 38.5%, NA – 1.3%, No info – 0.6%, Not known – 1.9%

Standard IV Leaflet/ website address Conquest = Yes – 89.3%, No – 7.1%, NA – 0%, Not known – 3.6% ECC London = Yes – 40.9%, No – 59.1%, NA – 0%, Not known – 0% South Downs = Yes – 42.9%, No – 50%, NA – 7.1%, Not known – 0% Main audit = Yes – 51.9%, No – 46.8%, NA – 0.6%, Not known – 0.6%

Standard V Dev / academic progress Conquest = Yes – 32.1%, No – 67.9% ECC London = Yes – 86.4%, No – 13.6% South Downs = Yes – 100%, No – 0% Main audit = Yes – 74.4%, No – 25.6%

Standard VIA Written care-plan Conquest = Yes – 100%, No – 0%, NA – 0%, No info – 0% ECC London = Yes – 45.5%, No – 45.5%, NA – 0%, No info – 9.1% South Downs = Yes – 85.7%, No – 14.3%, NA – 0%, No info – 0% Main audit = Yes – 76.9%, No – 16%, NA – 5.8%, No info – 1.3%

Standard VI B copy letter to parents Conquest = Yes – 21.4%, No – 78.6% ECC London = Yes – 100%, No – 0% South Downs = Yes – 85.7%, No – 14.3% Main audit = Yes – 84%, No – 16%

Standard VI C Copy letter to school health Data from Queen Elizabeth Hospital London was not available (28 pts) so presented here of 128 cases. Conquest = Yes – 32.1%, No – 67.9%, No info – 0% ECC London = Yes – 68.2%, No – 27.3%, No info – 4.5% South Downs = Yes – 0%, No – 0%, No info – 100% Main audit = Yes – 50%, No – 36.7%, NA – 1 (0.8%), No info – 12.5%

Standard VII Access to epilepsy nurse Conquest = Yes – 0%, No – 96.4%, No info – 3.6% ECC London = Yes – 86.4%, No – 13.6%, No info – 0% South Downs = Yes – 14.3%, No – 85.7%, No info – 0% Main audit = Yes – 30.8%, No – 68.6%, No info – 0.6%

Conclusions Audit met some standards, although not 100% (1A- seizure classification, 2A- diagnosis, 2C- EEG, 6B- copy letters to parents/carers). More stress on syndromic diagnosis. cQT interval calculated in diagnostic uncertainty. AE of AEDs needs to communicated. Info leaflets / appropriate website addresses should be given to parents / carers.

Conclusions Dev/academic progress needs to be documented. Written care plan if indicated. Copy of the clinic letter to school health. Access to specialist epilepsy nurse.