Improving Scottish epilepsy services would benefit over 800 children

SCOTLAND has fared well in the first ever UK-wide audit which examines paediatric care for children and young people aged up to 19 who have epilepsy.

Further improvements to epilepsy services by Scottish NHS boards would create uniform standards across the country and deliver even better care to over 800 newly-diagnosed cases a year.

The Epilepsy12 Audit report, launched today, shows significant differences in the quality of healthcare provided for children with suspected epileptic seizures against 12 standard measures.

Encouraging findings in the audit, led by the Royal College of Paediatrics and Child Health (RCPCH) with contributions by patient organisations including Epilepsy Scotland, revealed 79 per cent of children see a paediatrician with specialist training in childhood epilepsy, 87 per cent receive a correct seizure type classification and 95 per cent of children are aptly prescribed carbamazepine, one of the range of anti-epileptic medication selected in the audit.

However, the audit, funded by the Health Quality Improvement Partnership (HQIP) and Healthcare Improvement Scotland (HIS), also found just 46 per cent of children saw an epilepsy specialist nurse, 40 per cent did not see a paediatric neurologist where required, and 35 per cent of children did not have a complete first assessment.

Commenting on the new report, Epilepsy Scotland’s chief executive, Lesslie Young, remarked: “These findings show Scotland’s strong performance in putting national guidelines for epilepsy into practice. Over 800 newly-diagnosed children and young people a year would benefit from uniform standards if Scottish health boards act on this benchmarking report and further improve local epilepsy care.

“While this nation’s paediatric units are a leading example for six of the Epilepsy12 indicators, the audit reveals over a quarter of Scottish units had no specialist nurse. It means three NHS areas still lack a paediatric epilepsy nurse who can provide specialist help to vulnerable young people and their families. This flies in the face of a key recommendation that all children have access to one, and turns epilepsy healthcare into a geographical gamble. We will continue to campaign for more epilepsy specialist nurse posts and we call on MSPs and the Scottish Government to remedy this grossly unfair service gap.”


Notes to Editor

1.                  Epilepsy Scotland works with people affected by epilepsy to ensure that their voice is heard.  We campaign for improved healthcare, better information provision and an end to stigma.  This common serious neurological condition affects one in 97 people. We represent over 54,000 people living in Scotland with epilepsy, their families and carers. Our freephone Helpline (0808 800 2200) offers support and information, try, text 07786 209501, find us on twitter @epilepsy_scot twitter or facebook or visit:

2  With one in 200 children likely to develop epilepsy, this equates to 5,000-7,000 children and adolescents in Scotland, with over 800 newly diagnosed cases a year (source SIGN 81).

3  There was high participation in the audit with 15 Scottish paediatric units taking part which involved 13 of 14 NHS boards (excluding NHS Western Isles). Against 12 indicators, Scotland came top or joint first in the UK for six indicators which are measurements of optimal care in suspected epilepsy:

-               Paediatrician with expertise in epilepsy

-               11 units with an Epilepsy Specialist Nurse

-               tertiary (specialist clinic) involvement with child/young person

-               appropriate use ECG test

-               appropriate use of a specific drug (carbamazepin)

-               accuracy of diagnosis.

4.  Other areas where Scotland performed well were:

-               Over half the Scottish units (eight) have at least one epilepsy clinic a week

-               61 per cent of children are seen in non acute settings (ie not A&E) and at regular epilepsy/outpatients clinics which is significantly higher than the rest of the UK (56 per cent)

-               Scotland’s return rate (28 per cent) of a patient questionnaire (PREM) about paediatric epilepsy services was the highest in the UK (21 per cent)

-               Overall, patients across the nations commented on the helpfulness, knowledge, understanding and accessibility to clinicians and nurses.

5.  Details of the full report and charity contributors are available on the Epilepsy12 website ( plus there is access to a quality improvement toolkit of useful resources to support audit units to implement and share effective action plans.

6.  For comment and case studies in Aberdeenshire, Dundee, Edinburgh, Fife, and Renfrewshire please contact: Allana Parker, Public Affairs Officer on: 07884 012 147.

Contact: Allana Parker
Phone: 07884012147