UK government's epilepsy action plan “fundamentally flawed”BMJ 2003; 326 doi: https://doi.org/10.1136/bmj.326.7387.466/c (Published 01 March 2003) Cite this as: BMJ 2003;326:466
The UK government's initiative to improve services for people with epilepsy in England has been roundly criticised by epilepsy charities and clinicians for failing to target a reduction in avoidable deaths and to provide the funds to underpin the proposals.
The Joint Epilepsy Council, representing 23 epilepsy charities, has described the action plan as “fundamentally flawed,” adding that it is “unlikely to deliver any significant improvement in care for people with epilepsy.”
The Department of Health plan, which was issued last week— six months late— was prompted by a national epilepsy audit in May last year showing an annual toll of 400 preventable deaths. That audit showed that drug management was, in the experts' opinion, inadequate in 20% of the adult deaths and 45% of children's deaths.
The plan includes several short term initiatives to raise the profile of epilepsy among clinicians and the public and encourages NHS trusts to identify shortfalls in service provision as part of their local delivery plans. But trusts will not be formally monitored on their progress. The plan draws heavily on existing initiatives, such as the review of coroners' services, due in April, and the National Institute for Clinical Excellence guidance on epilepsy drugs, scheduled for October this year.
The national service framework for long term conditions, which will start its 10 year implementation programme in 2004, will include epilepsy as part of its focus on neurological conditions.
But a Department of Health spokesperson confirmed that this will not contain any specific targets and milestones for epilepsy. And as yet there is no mechanism to monitor the action plan's progress.
She also confirmed that the £1.2m ($1.9m; ‡1.8m) allocated for the modernisation of neurology services—and outlined in the plan—was not specific to epilepsy.
A spokesperson for Epilepsy Action said: “Even if all the money went to epilepsy, that's about £1.57 a person. That's not even a bus fare.”
Dr Edward Reynolds, former director of the Institute of Epileptology at King's College, London, said that the chief medical officer had raised expectations when he specifically promised to deliver a plan to cut the level of preventable deaths.
“This is a very disappointing document for a very common and neglected condition … There is no real action to this plan, and it will not reduce preventable deaths,” he said.
Jane Hanna, director of Epilepsy Bereaved and vice chairwoman of the Joint Epilepsy Council, said the plan was “very weak” and lacked provisions for an epilepsy register or for trust services to be tied into performance ratings.
She added: “We urgently need a significant injection of funds into primary care [to develop services], and we need to see a doubling of epilepsy specialists.”
The council will submit a detailed critique of the plan to an all party group of MPs this week, and has called for an urgent meeting with health minister Jacqui Smith.
Improving Services for People with Epilepsy can be accessed at www.doh.gov.uk/cmo/epilepsy