Toolkit helping commissioners provide better health services for people with epilepsy

OliviaAn online epilepsy toolkit, specifically for commissioners, is helping to provide all the information required to ensure high quality services for the 500,000 people living with epilepsy in England. Olivia Rzadkiewicz, Online Reporter, Epilepsy Society

The ‘Epilepsy Commissioning toolkit’ was launched by the two leading epilepsy charities, Epilepsy Society and Epilepsy Action in September 2015 and has 275 subscribers to date.

It was created as an accessible, online resource in response to a 2014 survey of Clinical Commissioning Groups (CCGs) that identified gaps in planning and provision for people with epilepsy. The survey found that 39 per cent of District General Hospitals had little or no acute neurology service. CCGs were contacted by Epilepsy Action, who discovered that 78 per cent of the groups that responded had not produced, and had no plans to develop a written needs assessment of the health and social care needs of people with epilepsy, despite the fact that 40,000 seizure-related admissions that occur every year in English hospitals.

There was a need to support CCGs seeking to understand the national provision for epilepsy, particularly after the removal of two Quality and Outcome Framework (QOF) indicators in 2013. The first QOF recorded the percentage of patients aged 18 or over on drug treatment who had been seizure free for the last 12 months. The second meant that women were given information about the teratogenic risks of epilepsy medication far enough in advance. Both indicators had provided an opportunity for the target patients to see their GP, as well as providing valuable data for use by CCGs.

Commissioners reported challenges locating the information required to support epilepsy service review. Many CCGs are at different stages in the process of commissioning epilepsy services, from no current commissioning intentions through to contracting a service model.
Nine CCGs with experience in commissioning epilepsy services supported the development and testing of the toolkit. They helped to co-produce the commissioning tools for epilepsy, shaping content according to what commissioners want and need.

The toolkit contains nine sections that take users through the flow of the whole commissioning process including patient and public involvement at every stage. Each section contains practical examples based on CCGs experience, as well as providing some established tools and information, such as NICE guidance and quality standards, audit tools, and interactive tools.

Using the toolkit allows services to calculate local populations of people living with epilepsy, access examples of service models, set outcomes, and create business cases. Users can access an epilepsy specialist nurse impact tool to track outcomes on a monthly basis against activity and interventions. Most importantly, the toolkit allows users to measure best practice against the nine epilepsy quality standards.

Healthcare professionals (HCPs) wishing to make improvements or enhancements to epilepsy services can use the toolkit to understand the commissioning process and engage with commissioners very early on when scoping need and gathering evidence.
In turn, a commissioning flow chart incorporating the planning, procurement and monitoring stages in the form of a checklist has been included to assist commissioners through the process.

The project has gained RCGP and the Association of British Neurologists endorsement and is going through the NICE endorsement process. The toolkit has been championed by NHS England national clinical director for adult neurological conditions, Dr David Batemen.
He said: ” This is an excellent example of how the voluntary sector and commissioners can work together to benefit patients. Epilepsy is a common condition but is often difficult to treat and without the correct care pathways can be an economic burden to the NHS. There are many forms of information, tools and data which exist for epilepsy, however these can be a challenge to find and require some knowledge of what is available. This project has pulled together information and templates to develop best value services to support adults and children with epilepsy.”

The toolkit website continues to evolve and be updated with new information to reflect best practice and modern-thinking at the forefront of service developments, to improve services for people living with epilepsy.