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MP commits to better services for people with epilepsy
MP Laura Sandys underlined her commitment to getting better services for people with epilepsy when she met with healthcare professionals in York.
The MP who is chair of the All Party Parliamentary Group on Epilepsy said epilepsy affects one per cent of the population of the UK and we need to ensure a national network of expert care that will support those people in the community, in residential homes and in A&E.
Laura is one of two MPs in the House of Commons to admit to having epilepsy - the other is Paul Maynard - and says her own experience of healthcare over the years has been less than perfect.
'No one has ever told me what sort of epilepsy I have' she told delegates at the International League Against Epilepsy conference in York. 'And I have never been given a referral. I was just told to keep taking the pills.'
Professor John Duncan, medical director of Epilepsy Society, expressed his concerns that new commissioning in the NHS would focus on primary and secondary care, while not meeting the needs of those who should be referred for tertiary care.
'Thirty per cent of people with hard-to-control seizures need a rapid onward referral to tertiary services that can offer multi-disciplinary expertise including the most up-to-date diagnostic tools,' he said.
Laura Sandys said it was imperative that healthcare professionals, MPs and people affected by epilepsy should work together to ensure that epilepsy is high on the agenda and that correct referral results in correct diagnosis and treatment.
She vowed to use her position as an MP to be an advocate for people with epilepsy and asked healthcare professionals at the meeting - neurologists, epilepsy specialist nurses, psychologists and surgeons - and those with epilepsy to provide her with the data that would help her push forward the boundaries of epilepsy.
She told delegates: 'I need to know about accuracy of diagnosis, do we have enough neurologists, enough esns, are people being offered the right medication and treatments, are people being referred for surgery.'
Laura Sandys recently met with Prime Minister David Cameron to discuss issues surrounding epilepsy.
'David was shocked to hear about the mortality rate in epilepsy and the rate of misdiagnosis in epilepsy,' she said. 'I asked him "How can you help us normalise epilepsy?" and he replied "You tell me"
'I am thrilled and very optimistic that he is so engaged with epilepsy.'
Laura emphasised her commitment to normalising epilepsy for everyone with the condition from those with controlled epilepsy to those with more complex epilepsy.
'It is not that long ago that when I told people I have epilepsy they would wait for me to fall to the ground or would ask "Can you string a sentence together, have you been in a psychiatric unit?"
'We need to work together to re-educate people and stamp out the stigma that still surrounds epilepsy.'