Epilepsy at the Conservative party conference
'So how did we get on at the Conservative party conference? What did we achieve and what did we learn?
We received a warm welcome, people were listening and, most crucially, the understanding of epilepsy at government level is definitely growing.
We feared we would be having to bang on doors to get the voice of epilepsy heard. But doors were open wide and engagement was good. We had some powerful conversations.
Every MP represents 1,000 people with epilepsy
It was a take-home message for many MPs that there are 600,000 people with epilepsy living in 650 constituencies. Broadly speaking, this means that every MP in our parliament represents around 1,000 voters who are potentially living with seizures, coping with the side effects of medication and dealing with the impact of the condition on employment, education, social life and driving. It was a significant and sobering statistic.
Two MPs who totally 'got it' were Michael Tomlinson who represents mid Dorset and north Poole and Sir David Amess from Southend constituency. David is also a member of the all party parliamentary group on epilepsy. He didn't need any persuading on the significance of the statistics.
Earlier this year he spoke during an epilepsy debate in the House of Commons, tackling former health minister Norman Lamb about the concerns around switching between different versions of the same epilepsy drugs with the potential risks of breakthrough seizures. He also spoke about people in his constituency who were not being offered the latest epilepsy drugs because they were more expensive than the older drugs. These are both issues which are high on our agenda at Epilepsy Society.
Michael Tomlinson was keen to find out more about epilepsy and to know how he can be supportive of the issues faced by people in his constituency who live with the condition. It is this sort of grass root engagement that will ultimately help us to grow the voice of epilepsy and bring about change.
One of the most impactful fringe events we attended was a panel discussion looking at how DNA testing will change healthcare, and the issues policy makers need to address as a consequence.
We were heartened to hear MP and minister for life sciences George Freeman talking about the important role that charities have to play in ensuring that personalised medicine becomes a very real option for patients.
He spoke about the challenges that a massive wave of demand for genetic testing could pose for an already financially stretched NHS. He talked about concerns around the storing of genetic data and the ethical concerns that some people have.
Chair of our trustees Helen Pernelet was able to share with the minister our work at Epilepsy Society which is helping to meet government objectives to make personalised medicine a mainstream application. Genomic medicine - the diagnosis and treatment of people using their DNA - is already happening at Epilepsy Society and we are set to see it expand rapidly.
At the same time we are campaigning for accelerated access to clinically effective drugs which are licensed for other conditions such as multiple sclerosis but which we know could be effective for some of the rare cases of epilepsy.
George Freeman was keen to follow up with us after the conference. We will certainly be making that happen.
Services for neurology
Our attention now moves to the House of Commons and the Public Accounts Committee (PAC) which will be carrying out a review of services for people with neurological conditions including epilepsy. This follows a report by the National Audit Office criticising the government for failing to improve these services.
The Public Accounts Committee will take evidence from representatives of NHS England and the Department of Health including Simon Stevens, NHS England chief executive and Una O’Brien, permanent secretary at the Department of Health.
We have already contributed to a submission which will be put forward by the Neurological Alliance, demanding that neurology services are prioritised. We want to see the reinstatement of retired indicators for epilepsy which could provide extra vital data about the numbers of people with epilepsy.
There were formerly three indicators relating to epilepsy: one recording the number of people over the age of 18 with the condition, the second showing how many had been seizure free over the last 12 months, and the third recording the number of women of child bearing age who have been offered preconception counselling. It is the second two indicators which have been retired. Without this data, we cannot configure the appropriate epilepsy services.
So, the conference is over but the work is only just beginning. We have made in roads. We have raised the epilepsy profile. Now we need to make a difference.
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