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21 March 2016

Sapphire nurse urges public to use epilepsy toolkit

Juliet Ashton, Sapphire Nurse Consultant for epilepsy, commissioning and education at Epilepsy Society, has urged people with epilepsy to register with the epilepsy commissioning toolkit to streamline and improve services for the condition in the NHS. 

Juliet was speaking at the 2016 Epilepsy Society Conference at Westminster Central Hall.

She began her talk, ‘Mapping the Gaps’, by describing the gaps in current provision for epilepsy in the 211 Clinical Commissioning Groups (CCGs) around England. With over 700,000 neurology related emergency hospital admissions every year, 39 per cent of District General Hospitals provide little or no acute neurology services.

Juliet pointed out that as people with long term conditions spend an average of just three hours a year with healthcare professionals, they should be given the required support to live the other 8,757 hours of the year looking after themselves.

However, she said, in a climate where there are threats of down-banding or making nurses redundant, 60 per cent of hospital trusts do not have an epilepsy specialist nurse (ESN). Epilepsy has been removed from the Royal College of General Practitioners’ list of clinical priorities and the relatively new post of National Clinical Director for Neurology, currently held by David Bateman, is under threat. There is no new money to invest in vital services.

Inconsistencies in outcomes across the commissioning groups mean that the country now has a 67 per cent variation in mortality rates across the CCGs. There is a 25 per cent higher incidence of epilepsy in more deprived areas of the country, with evidence from Public Health England indicating that there exist both pockets of excellent care, and very poor care, across the country.

Juliet cited the Epilepsy12 national clinical audit as an example of improvement in patient services, where, between two rounds of investigations, there was an increase in units reporting having a children’s ESN.

She quoted from the 2015 Public Accounts Committee report recommendations that included the suggestion that:

“NHS England should report back by April 2017 on what it has done to make best use of the available neurologists and reduce the variations in access, including through re-designing services and making more use of other clinical staff, particularly specialist nurses.”

In response to this call, Juliet explained what is being done about the shortfall in service provision for people with epilepsy.

First, she encouraged her audience to send emails to their MPs via Epilepsy Society’s premature deaths campaign, petitioning the government to introduce a new, comprehensive national clinical audit.

Second, she explained how Epilepsy Action and Epilepsy Society collaborated on making the Epilepsy Commissioning Toolkit, the first of its kind. The toolkit is web-based and contains all the evidence commissioners need to see to prioritise epilepsy, all in one place.

Juliet explained how the toolkit was created to help the NHS and CCGs start “speaking the same language”.

The toolkit is organised into nine sections taking people 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.

The toolkit allows services to calculate local populations of people living with epilepsy, access examples of service models, set outcomes, create business cases and utilise an epilepsy specialist nurse impact tool to track outcomes on a monthly basis.

Since its launch in September 2015, 195 people have registered onto the toolkit and Juliet concluded by asking the audience to register with the project and to leave comments.