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SUDEP Action supports National Audit Office report highlighting need for improvement in Neurological care and services


SUDEP Action has worked as part of the Neurological Alliance in recent months to encourage the National Audit Office to re-review Neurological services and care in the UK.  In light of this, a recent report by the National Audit Office (NAO) has shown that the government has failed to achieve key objectives for improving services for millions of people with neurological conditions. Reviewing progress against recommendations made by the House of Commons Public Accounts Committee (PAC) in 2012, the NAO’s report shows that progress has been ‘poor’ against two of four agreed recommendations, and only ‘moderate’ in the other two.

Commenting on the report, Arlene Wilkie, Chief Executive of the Neurological Alliance, said: “Three years on from the Public Account Committee’s report, it is unacceptable that so little progress has been made in vital areas that were identified as needing urgent improvement. It only adds to the sense that people living with neurological conditions are not seen as a priority within today’s NHS. We need action so that the needs of millions of people with complex conditions must no longer be overlooked.”

Key recommendations that have not been achieved include:

1) Access to services: The government has failed to use levers such as the clinical commissioning group outcomes indicator set to improve access to neurology services across the country and as a result neurology is mentioned in only half of local strategies.

2) Improving data: The government has failed to rectify the shortage of neurology data, which means for example that the NHS has no record of the numbers of neurology service users and no effective measure of patient outcomes.

3) Care planning: The government has failed to ensure that everyone with a long-term neurological condition has a care plan which means that their changing care needs are simply not being met.

Neurology services continue to suffer from a range of issues including highly variable access to specialist expertise, long waiting times for diagnosis, and poor care planning and coordination, as set out in the Alliance’s Invisible Patients report and the recent acute neurology survey by the Association of British Neurologists. The Neurological Alliance will shortly be writing to the PAC calling for a full review of neurology in light of the NAO’s findings, a letter SUDEP Action have signed, along with other members of the Alliance. 

Sammy Ashby, Policy and Development Officer for SUDEP Action commented: ‘This reports highlights that while there is some improvement in national care and services for those with neurological conditions, there is still some way to go. This is why we both support the Neurological Alliance in raising this issue and continue to raise awareness of the ways people with epilepsy and their Health Professionals can help address this issue through education and using tools such as EpSMon and the SUDEP and Seizure Safety Check List.’

SUDEP Action stands by this report and will continue to work as part of the Neurological Alliance to work for improved services and for neurological conditions, including epilepsy. We are committed to helping raise awareness of epilepsy; in particular epilepsy risks to help people with epilepsy make informed choices, stay safe and ultimately working towards reducing the number of potentially avoidable epilepsy deaths that occur each year.


For more information about the work of the Neurological Alliance, visit here.

To see how EpSMon can help improve epilepsy self-management visit

Information on the SUDEP and Seizure Safety Check List and how it can help Health Professionals monitor their patients’ epilepsy health risks can be found here