Norfolk headteacher backs campaign to end avoidable deaths through epilepsy
A north Norfolk headteacher who lost her son to epilepsy is backing a new campaign demanding an end to avoidable deaths through better care, treatments and services.
Kathryn Jackson, who works at St Mary's Endowed Primary in Roughton, is backing the Epilepsy Society in its plea to health secretary Jeremy Hunt for more support on the NHS.
They claim that of the 500,000 people diagnosed with epilepsy in England, over a third (39pc) of premature deaths could be prevented.
Mrs Jackson, 51, who believes her son could still have been alive today if she had been warned his epilepsy put him at risk of sudden death, said: 'Life has been so difficult following Keir passing, but what makes things harder is the fact we had no warning.
'There was absolutely no mention that Keir may pass away at a young age because of his epilepsy. He was on regular medication for his seizures but he continued to have them anyway – we were led to believe this was normal and to be expected.
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'I'm not angry at the medics that treated Keir; I understand fully that they work in highly stressful situations and are probably under-resourced but everything I know about SUDEP (sudden unexpected death in epilepsy) has been from Google and support groups, not the professionals. There are thousands of people going through the same situation as myself and I urge them to talk to others and ask for help in order to make improvements.'
Last month, the Public Accounts Committee released a critical report stating that 32pc of patients with neurological conditions, such as epilepsy, are being re-admitted more than five times to emergency departments in the UK before seeing a neurologist.
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But the Department of Health has removed two of the epilepsy performance indicators which shows how services are performing in averting premature death.
Prof Ley Sander, a leading epilepsy neurologist and medical director of the Epilepsy Society, said: 'There is an urgent need to take action to eradicate avoidable deaths.
'My recent neurology paper highlights the fact that when someone is diagnosed with epilepsy, doctors should be asking themselves the question 'what else does this patient have'?'
The Epilepsy Society's campaign has launched an online petition for people to email their MPs, urging them to write to the secretary of state for health and requesting that a new national clinical audit be commissioned at the earliest opportunity. To view the online petition log on to: www.epilepsysociety.org.uk
Mrs Jackson is organising a fundraising day at her school on March 24 to raise awareness of the condition. Parents are invited to get involved.
Anyone with epilepsy from other schools interested in attending can contact the school on 01263 761368.