Most commissioners of healthcare do not give epilepsy a high enough priority and are unaware of the needs of people with epilepsy. The quality of service a person gets depends on where they live. There are not enough healthcare specialists in epilepsy to care for everyone with the condition. So most people with epilepsy don’t see one. They are looked after by healthcare non-specialists with a limited knowledge of epilepsy. This means their care and treatment is not as good as it should be. This means their epilepsy is not as well managed or controlled as it should be. This reduces their quality of life. This is not acceptable.
People with epilepsy are prevented from improving their own healthcare and social condition. They lack knowledge about their own epilepsy. The NHS and social care systems are complicated and hard for people to understand and influence.
Epilepsy is not just a medical condition. It touches right across peoples’ lives. People are unfairly denied chances in areas like education and employment because epilepsy is not recognised or properly understood.
By 2017 there will be …
- More specialists in epilepsy healthcare.
- More people able to access a specialist epilepsy health service.
- Greater knowledge of epilepsy amongst non-specialist healthcare workers.
- More people with epilepsy influencing their local epilepsy service.
- A more understanding education system.
- More accepting attitudes in employment.
- Promote and undertake research into epilepsy.
- Campaign for more epilepsy specialists, especially more Sapphire nurses (epilepsy specialist nurses).
- Set standards of care as a benchmark of quality and promote these widely.
- Develop tools to help healthcare professionals deliver best practice in their care and treatment.
- Help non-specialist healthcare professionals to improve their basic knowledge and understanding of epilepsy.
- Support healthcare commissioners and designers to appreciate the needs of people with epilepsy and help them deliver a specialist epilepsy health service that meets those needs.
- Promote the participation of people with knowledge about epilepsy in the commissioning and design of local services.
- Develop personal training opportunities to educate people with epilepsy about their own condition and help them influence the services they need.
- Campaign, inform and educate in other areas that impact on people with epilepsy - like the media, education, employment, leisure, social care and transport.
Within 10 years…
Through greater knowledge people will come to better understand what epilepsy is and how best to care for and treat someone with the condition. All people with epilepsy will be able to access a high quality specialist healthcare service. All people who should be able to achieve long-term control of their seizures will do so. Fewer people will experience harmful side effects of anti epileptic drugs. Diagnosis will become more accurate and will be made more quickly. There will be fewer epilepsy related deaths. Epilepsy will not be a barrier to achievement in education or employment.