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Health action plan

Health services can go the extra MILE for young people with epilepsy by:

Measuring

• Commissioners must know the number of children and young people with epilepsy in their area
• Commissioners must know what level of resources they have in place
• Commissioners must know how long young people with epilepsy are waiting for initial appointments, diagnosis, treatment, and tertiary assessment

Including and informing

• Commissioners must know what young people with epilepsy and their parents/carers think about services
• Children, young people and their parents/carers need easy access to high quality information and advice material about epilepsy

Looking after the whole child

• Children and young people with epilepsy and their parents/carers must have easy access to high quality multi-disciplinary services such as speech and language therapy and psychology

Ensuring services meet national recommended guidelines

• Commissioners must adopt an easy to use, efficient process for referring children and young people to specialist services
• Commissioners must have one or more care pathway that ensures all young people with epilepsy are seen by pediatricians with training and expertise in the epilepsies
• All children and young people with epilepsy must be offered a care plan, and there should be a high adoption rate
• All children and young people with epilepsy must have their case reviewed annually by a health professional with training and expertise in the epilepsies

Young Epilepsy Chair Anna Walker has personal and professional experience

Young Epilepsy's Chair, Anna Walker is a former Chief Executive of the Healthcare Commission. Anna also experienced seizures herself during her teenage years. She therefore understands both the pressures health trusts face and the impact poor services can have on young people and their families. In a presentation to a Joint Epilepsy Council Commissioning event in February 2010, Anna said Epilepsy is more widespread than most people recognise and there are real issues with current levels of care. But good epilepsy services are good value for money.

JEC Epilepsy Commissioning event - 23 February 2010

The Government knows that epilepsy services need to be improved. In a May 2011 response to a letter from past Young Epilepsy President, Lord Howe, Prime Minister David Cameron said in relation to current failures in NHS services; We know there are historic weaknesses in the commissioning of services which the epilepsy charities and stakeholders have drawn attention to in recent reports, correspondence and Parliamentary Questions. As you will be aware, the urgency for change is all the greater because these failures carry huge costs, as well as having a massive impact on the lives of people with epilepsy. There are also potentially very significant savings from unplanned emergency admissions to be made by getting this right, which goes hand-in-hand with improvements in outcomes, including life expectancy and a reduction in the number of tragic sudden deaths from epilepsy.

The letters related to the Epilepsy and Related Conditions Bill. For more information about the progress of the Private Members Bill can be found here.

Through the Champions Campaign, and by working with a range of health organisations, Young Epilepsy will be pressing health commissioners and other NHS organisations to use the following ten levers which will improve services for children with epilepsy:

Young Epilepsy is keen to work with organisations that provide or influence services for children and young people with epilepsy. If you work for such an organisation and would like to know more about the Champions Campaign, please contact Alison Cornell at This email address is being protected from spambots. You need JavaScript enabled to view it. or call 01342 832243.