A meeting of the All Party Parliamentary Group (APPG) on epilepsy met earlier this week at the Houses of Parliament in London to discuss the creation of a national register of people with epilepsy. This register would be used by clinicians to improve the care people with epilepsy receive.
The proposed register would contain an electronic record of people’s epilepsy. This would include the type of epilepsy, types and frequency of seizures, medicines taken, activity reports for epilepsy specialist nurses, tests, examination results and care plans.
The register would allow for data to be collected, charted and analysed for changes in things like seizure frequency.
A number of clinicians, voluntary organisations and people with epilepsy and their families made the case for setting up such a register at the meeting, also discussing potential pitfalls.
The APPG heard from Professor Helen Cross OBE, the Prince of Wales' Chair of Childhood Epilepsy, Dr Amit Bali, Clinical Leadership Fellow, Young Epilepsy and Dr Colin Dunkley, the Clinical Lead for the Epilepsy12 national audit of children's epilepsy.
They described how a national register could ensure that information about patients' conditions and treatments were consistently recorded and accessible to different service providers as well as to the individuals.
They argued that such a system could both help to improve care for the individual and enable better commissioning of epilepsy services. This could lead to long–term savings for providers as well as far better coordination between them.
The APPG also heard that a national register could also be a really useful tool for research. It would help to work out what treatments are effective in dealing with the many different types of epilepsy and to understand the wider impact of epilepsy.
Another point the meeting adressed was the issue of the impact of sodium valproate on pregnancy. Teresa Pearce MP welcomed the new toolkit by the Medical and Healthcare products Regulatory Agency (MHRA) launched to help medical professionals inform women about the risks of taking valproate during pregnancy.
Ms Pearce also stressed that the challenges for the families and children who had been affected by sodium valproate still need to be addressed.
The meeting was chaired by Valerie Vaz MP and was attended by several MPs and Peers from across the political parties.