Seize Control – the route to better treatment
Epilepsy Action campaign encourages patients to seek treatment reviews to discuss all options with their clinicians. How many more people could be seizure-free with a little creative thinking?
Epilepsy Professional readers may be working in all manner of different fields, but will be united in one thing. We all want people with epilepsy to receive the best possible treatment for their condition. Still: what does that actually mean?
Evidence suggests that almost half of the 600,000 people with epilepsy living in the UK are not seizure-free – 48 per cent. Now, we know that around 30 per cent could not become seizure-free with the available treatments. That figure still leaves 18 per cent unaccounted for.
Epilepsy Action estimates that, with optimal treatment and compliance, the 18 per cent – roughly 108,000 people – could become seizure-free. The remaining 30 per cent, while unable to achieve seizure freedom, could still find better treatment. This might mean a reduction in the number or severity of their seizures, or minimising the adverse side-effects of their medications.
This month Epilepsy Action, launches its latest campaign: Seize Control. The campaign will complement our successful ‘Treatment Options’ events, designed to encourage people to consider all possible avenues of treatment. The campaign offers practical tools to support people with epilepsy in working with their health professionals to explore these avenues. The ultimate goal of the campaign is to empower people with epilepsy to find ‘better treatment’.
What is ‘better treatment’?
“A better treatment helps me to feel better and get on with my life.”
– Richard, Seize Control media volunteer
Epilepsy Action’s defines a ‘better treatment’ as one that allows people to have as few seizures and side-effects as possible. The ultimate goal of any treatment is generally seizure freedom, but where that may not be realistic an improvement in quality of life is still valuable.
Seize Control is about empowering patients, optimising treatment and improving quality of life wherever possible. The campaign isn’t about promoting alternative treatment options or about recommending one treatment over another. As we know, people with epilepsy are all individuals – their seizures, their triggers, their lives are all unique. This campaign encourages them to begin a discussion that could lead to finding a treatment that better suits their life and their epilepsy. It encourages people to talk about their seizure control and consider new approaches.
For some people, medication will represent the best treatment option. For them, simply tightening up concordance with their existing medication or to gaining a better awareness of their personal seizure triggers may represent better treatment. It may also be worth discussing treatment with a different anti-epileptic drug or adding one to an existing drug regime. Others may need their epilepsy diagnosis reviewed and their treatment reviewed accordingly.
For other people with epilepsy, it may be worth exploring the possibility of a completely different treatment to be used alongside their medication. Several options outside of drug treatment are becoming more widely available and may prove very useful in optimising seizure control.
Several implantable devices (such as vagus nerve stimulators) are available and may offer an effective reduction in seizure frequency. It may be worth discussing the possibility of being assessed for a surgical resection. Dietary treatments for epilepsy are also gaining more attention, not just as paediatric treatments but effective treatments for adults, too.
All these options may form part of a discussion with a patient living with sub-optimal seizure control. If the Seize Control campaign is successful, many readers may soon be part of a growing number of treatment reviews. So, how can you be involved in making this campaign a success and helping thousands of people access the best possible treatment?
Help patients Seize Control
This campaign is designed to empower people with epilepsy to take a greater degree of responsibility for their own treatment. There are very practical advantages to adjusting treatment and reducing seizures. Still, people feeling more in control of their lives and their condition can in itself lead to an improvement in quality of life.
While the emphasis of the campaign is on people with epilepsy, its success still depends on the involvement of medical professionals. Epilepsy Action needs all clinicians to embrace this campaign, working with us to improve treatment.
As a first step, we hope that you will display the poster contained in this copy of Epilepsy Professional. This will show patients that you are open to discussing their care and treatment. Remember, a little creative thinking may mean improved seizure control for thousands of people.
The organisation would also be extremely grateful if you could offer a Seize Control toolbox to your patients with sub-optimal seizure control. The toolbox includes:
- a treatment review discussion card
- a seizure diary
- a care plan template and
- information on a variety of relevant topics.
The information contained in the toolbox covers why a treatment review is crucial, the value of keeping an accurate seizure diary and the importance of treatment concordance. There is also a tool to help people request a treatment review with their doctor or specialist.
Part of the idea behind the toolbox materials is to give you what you need to perform a very thorough treatment review. If people with epilepsy use these materials, they will arrive for their review armed with all kinds of information. That information may include things they never thought to mention before, such as particular side-effects of their existing medication. The information may be much more detailed than before – such as a very accurate seizure diary or assessment of their personal triggers.
The success of Seize Control will also rely on being able to inspire people to seek a treatment review. This is particularly true of those people who might be lost to specialist follow-up. Some people with epilepsy are being seen only in primary care and may not be benefiting from the perspective of an epilepsy specialist.
For those people – and anyone else with active seizures – we have created Seize Control. This is a magazine-style resource that also forms part of the campaign toolbox. It charts the personal experience of six people living with epilepsy, several of whom aren’t yet seizure free. They talk about their seizure frequency and the difference that their current treatment has made to their quality of life.
This publication will be available to people with epilepsy and is available to all medical professionals who may want to pass copies to their patients. The publication aims to encourage anyone currently without access to an epilepsy specialist to refer themselves for a treatment review. The perspectives in Seize Control are exclusively those of people with epilepsy. In this way, people with epilepsy can understand on a personal level what impact new treatments could have on their lives.
Please help your patients begin a journey with treatments that might go beyond medication.
Help inspire people with poor seizure control to book a treatment review. Help them to not lose hope for a better treatment in the future. Help empower your patients to work more effectively with you and their other care providers. Help them to provide their professionals with all the information they need to explore relevant treatment options.
We would be delighted if you would consider taking part in this exciting initiative. For more information about the campaign, visit epilepsy.org.uk/seizecontrol To request copies of the Seize Control toolbox, call the campaigns team on 0113 210 880 or email firstname.lastname@example.org
Our journeys: Excerpts from Seize Control
In November 2011, George had his first tonic-clonic seizure. He was not quite four years old. George’s Mum Corrin was 14 weeks pregnant with the family’s fourth child. George was eventually diagnosed with Doose syndrome. Corrin wrote the following about their experience.
Matthew was diagnosed with epilepsy at 16. The volume of his daily seizures proved a constant interruption in his life and often left him feeling lethargic. Matthew is now aged 25 and has a young son – which gave him the impetus to change his treatment.
Protocol for a referral to a specialist
To enable patients to Seize Control, GP surgeries and epilepsy care teams need to have robust referral protocols in place. Guidance from Epilepsy Action’s Epilepsy: A resource for primary care pack (developed by clinical experts) should help practices to develop a referral pathway.
Once shared-care protocols have been established, members of the primary care team should be clear about who their patients with epilepsy should be referred to. Ideally, patients should be referred to a specialised epilepsy service. However, if there is no such service in the area, or access is limited, patients should be referred to a general practitioner with a special interest in epilepsy (if possible).
Patients can make use of the NHS ‘Choose and Book’ facility. This online tool allows patients who need an outpatient appointment to choose which hospital they are referred to by their GP. They can then also book a convenient date and time for their appointment.
Patients should be referred to a specialist for review of their epilepsy in the following instances:
- after any suspected first or new onset seizure(s), the NICE and SIGN guidelines recommend that services should be provided that enable patients to be seen by a specialist within two weeks of onset
- especially important for patients in whom a brain tumour is suspected, for whom urgent referral under the two-week cancer standard is recommended, including people with one or more of the following:
- focal seizures
- prolonged post-ictal (after the seizure) focal deficit (longer than one hour)
- status epilepticus
- associated inter-ictal (between seizure) focal deficit
- to consider the risks and benefits of drug withdrawal. The consequences of poor advice at this stage can be profound
- to manage specific problems or conditions such as drug side-effects, psychiatric issues, pregnancy and related issues, social issues, genetic advice and mental deterioration
- to monitor the underlying cause if it is potentially progressive
- if seizure control in established epilepsy is unsatisfactory and the patient is willing to explore potential treatment options or further investigations
- if there is a change from baseline seizure frequency without other cause, and the patient wishes to explore treatment options
- if seizures are not controlled and/or there is diagnostic uncertainty or treatment failure, in which case referral to tertiary services may be necessary
Royal College of General Practitioners/Department of Health (2003). ‘Guidelines for the appointment of general practitioners with special interests in the delivery of clinical services: Epilepsy’. [accessed 3/4/12]
National Institute for Health and Clinical Excellence (NICE) (2012). ‘The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care [CG137]’. [accessed 9/6/14]
Scottish Intercollegiate Guidelines Network (SIGN) (2003). ‘Diagnosis and management of epilepsy in adults. A national clinical guideline’. [accessed 9/6/14]
Department of Health (2000). ‘Referral Guidelines for Suspected Cancer’. [accessed 9/6/14]
Epilepsy Action (2005). ‘Role of Primary Care in Epilepsy Management 2’. Leeds: Epilepsy Action.
Supported by Cyberonics through an educational grant. Cyberonics developed and markets Vagus Nerve Stimulation (VNS) therapy system. Cyberonics has no editorial control on the content.