Commissioning a service for the accurate diagnosis of the epilepsies in adults

Epilepsy is a common and chronic neurological condition that is defined as a tendency to have recurrent unprovoked seizures. A seizure is caused by a sudden burst of excess electrical activity in the brain, which temporarily disrupts the normal passage of messages between brain cells.

The age-standardised prevalence of epilepsy in the UK is estimated to be 7.5 per 1000 population, but is likely to be 25% higher in the most socially deprived areas compared with the areas that are least socially deprived^[1].

There are major health, educational, employment and psychosocial implications attached to a diagnosis of epilepsy. However, making the diagnosis can be difficult and misdiagnosis is frequent, particularly when the diagnosis is made by a non-specialist^[2]. A lack of training among medical practitioners and limited access to epilepsy specialists has been cited as a major cause of misdiagnosis^[3]. Misdiagnosis rates in the UK, where a diagnosis of epilepsy is incorrectly made, are between 20-31%^[2]. The annual total cost (NHS and community based services) of this type of epilepsy misdiagnosis in England and Wales has been estimated to be up to £138 million^[4]. An unknown number of people also have a missed diagnosis, where they actually have epilepsy but it has been diagnosed as something else. Misdiagnosis of epilepsy has economic implications for the NHS and society as a whole.

Epilepsy is associated with a risk of premature death that is two to three times higher than in the general population. There are around 1000 epilepsy-related deaths each year in the UK, most of which are associated with seizures. Sudden unexpected death in epilepsy (SUDEP) is the principal cause of seizure-related death in people with chronic epilepsy and is estimated to account for around half of these deaths each year^[5]. Although up to 70% of people with epilepsy have the potential to be seizure-free through accurate diagnosis and optimal treatment, this is achieved in only around 52%^[6]. Inadequate access to specialist care and lack of appropriate investigations have been cited as deficiencies in the management of epilepsy in hospitals, and a lack of timely access to skilled specialists identified as a deficiency in general practice^[5].

In line with the recommendations in NICE clinical guideline CG20 on the epilepsies there is a need for commissioners to ensure that misdiagnosis is kept to a minimum by making certain that all individuals presenting with a recent onset suspected seizure are seen within 2 weeks by a specialist (a medical practitioner with training and expertise in epilepsy), and that at the initial assessment the specialist has access to appropriate investigations.

Benefits

The potential benefits of robustly commissioning an effective service for the accurate diagnosis of the epilepsies in adults include:

• improving health outcomes and quality of life when individuals with long-term neurological conditions have prompt access to specialist expertise in order to obtain a diagnosis and begin treatment
• avoiding delayed or incorrect diagnoses - epilepsy is misdiagnosed in around one in four cases
• reducing the risk of premature death in a small number of individuals from SUDEP by ensuring a correct diagnosis is made and treatment optimised
• reducing emergency admissions to secondary care as a consequence of preventing seizures and seizure-related injuries
• reducing social and financial deprivation of individuals wrongly diagnosed with epilepsy and treated with anti-epileptic drugs, and also of those with true epilepsy that is misdiagnosed as a non-epileptic condition
• reducing the costs to the NHS of misdiagnosis, including the cost of inappropriate prescribing of anti-epileptic drugs, and medico-legal costs arising from complaints and claims
• reducing the risk of teratogenicity and major congenital malformation from the inappropriate prescribing of anti-epileptic drugs in individuals wrongly diagnosed with epilepsy
• promoting independent living and employability
• reducing inequalities and improving access to diagnostic services
• enhancing patient choice, empowerment and self-management
• better value for money, through helping commissioners to manage their commissioning budgets more effectively - this may include opportunities for clinicians to undertake local service redesign to meet local requirements in novel ways.

Key clinical issues

Key clinical issues in providing an effective service for the accurate diagnosis of the epilepsies in adults are:

• ensuring that all individuals with a recent onset suspected seizure are seen within 2 weeks by a specialist (a medical practitioner with training and expertise in epilepsy)
• ensuring that access to an electroencephalogram (EEG) or magnetic resonance imaging (MRI) is available within 4 weeks of it being requested for individuals requiring such tests
• aiming for a confirmed and precise diagnosis of epilepsy, and accurate classification of seizure type and epilepsy syndrome
• providing a quality assured service.

National priorities

National priorities and initiatives relevant to commissioning an effective service for the accurate diagnosis of the epilepsies in adults include:

• World class commissioning.
• The NHS in England: The operating framework for 2009/10.
• National service framework for long-term conditions.
• Delivering the 18 week patient treatment pathway.
• The Care closer to home initiative outlined in chapter 6 of the white paper ‘Our health, our care, our say'.
• Commissioning framework for health and well-being.
• Considering the impact of patient choice.
• The Expert patients programme.
• A stronger local voice: a framework for creating a stronger local voice in the development of health and social care services.
• Implementation of NICE clinical and public health guidelines. These are currently core standards, and performance against these standards will be assessed by the Care Quality Commission in line with Standards for better health.

Although many or all of these priorities may be relevant to the services nationally, your local service redesign may address only one or two of them.

References

1. Joint Epilepsy Council (2005) Epilepsy prevalence, incidence and other statistics. Leeds: Joint Epilepsy Council.

2. Stokes T, Shaw EJ, Juarez-Garcia A et al. (2004) Clinical guidelines and evidence review for the epilepsies: diagnosis and management in adults and children in primary and secondary care. London: Royal College of General Practitioners.

3. Report by the All Party Parliamentary Group on Epilepsy (2007). Wasted money, wasted lives. The human and economic cost of epilepsy in England. Leeds: Joint Epilepsy Council.

4. Juarez-Garcia A, Stokes T, Shaw B et al. (2006) The costs of epilepsy misdiagnosis in England and Wales. Seizure 15: 598-605.

5. National Institute for Clinical Excellence (2002) National clinical audit of epilepsy-related death. London: National Institute for Clinical Excellence.

6. Moran NF, Poole K, Bell G et al. (2004) Epilepsy in the United Kingdom: seizure frequency and severity, anti-epileptic drug utilization and impact on life in 1652 people with epilepsy. Seizure 13: 425-33.