In a recent issue of Epilepsy Review, we invited you to submit questions to Laura Sandys who is just one of two MPs to openly disclose their epilepsy. Laura is chair of the All Party Parliamentary Group for epilepsy. Here is a selection of your questions and answers. If you would like to subscribe to Epilepsy Review visit our online shop or email firstname.lastname@example.org
Molly Pike, Isle of Wight
When were you diagnosed with epilepsy and how has it affected your life?
Laura: I was 23 when I was diagnosed with epilepsy. Of course, it was a great shock. But once I had received the right diagnosis and the right medicine, I started to live a normal life.
Belle Robertson, Liverpool
How do you see care for people with epilepsy under the new GP commissioning process? GPs don’t have enough knowledge about such a complex condition to know what services are needed.
Laura: I live in an area that has a specialist epilepsy GP. He works with all the local GP practices to help them understand the condition better. When GPs commission themselves, I hope that they will consider this superb model and appoint specialist GPs for epilepsy and for other specialist conditions.
Many of my constituents with epilepsy have said that it’s reassuring to be treated by an expert in their condition. Having a specialist GP in the area has meant that the number of epilepsy-related hospital admissions has decreased as patients are having the condition better managed and controlled.
From Crissi Conboy, facebook
Why is epilepsy given such a low public profile and priority in public information and awareness? Why is it always on the back burner when it could be as straightforward as correcting myths – for example, we’re not drunk/ possessed by evil spirits/it’s not contagious?
Laura: Epilepsy can seem to be the underdog in terms of health conditions although as you know it is actually the most common neurological condition in the UK, affecting more than half a million people. But it is very much a hidden condition – invisible even.
Often it’s not until we engage with someone having a seizure that we confront the condition and then, as you say, the symptoms can be misinterpreted. Someone falling down suddenly in the middle of the street for no apparent reason can appear to be under the influence of alcohol. Too often we hear of people being mistaken for being drunk when they are stumbling around in a dazed state following a seizure.
Some people are happy to talk about their personal experiences and this really helps to raise awareness and a degree of public empathy. But for others, they fear that disclosing their epilepsy may affect their career or chances of employment. People may not understand that it is under control or maybe only happens at night.
Little by little, we are helping to get the message out there and increase public understanding and that will help to dispel myths such as someone with epilepsy is possessed of evil spirits or even contagious. Talking and educating is the way forward.
Wes Lee, Stockport
Do you feel that having epilepsy has made your progress to become an MP more difficult?
Laura: I don’t think it has made becoming an MP more difficult, but what was really surprising was when I told my local party that I had epilepsy, I found out that four other people within my local party also had it. We have almost created a club! I think this goes to show the power of communication. It takes one person to say it and then you start to find out that so many more people are sufferers. The more the condition is discussed, the better.
James Appleton, email
How do you think the health and social welfare cuts will affect people with epilepsy?
Laura: I don’t see that it will have any direct impact on those with epilepsy but I do believe that greater focus on GP specialism will be crucial in providing support on the ground closer to the community.
Holly Weston, Surrey
You are clearly a very successful person and your epilepsy hasn’t stood in the way of your career. What advice would you give to someone who is constantly experiencing prejudice in the workplace because of their epilepsy?
Laura: I am very lucky as I do not have many fits and it doesn’t impede my work. For others it can be much more difficult. But ultimately it is about educating those who you work with you. Now you can say that two MPs are epileptic and if they don’t care about this in Parliament then they should not care about it at your place of work – they should just support you!
Franie Harling, facebook
My beautiful son died after only a handful of seizures. What can we do to raise awareness about epilepsy?
Laura: Coming to terms with the loss of a loved one is incredibly difficult. It requires time, patience and the constant support of those around us. Many bereft parents, siblings, children, friends and colleagues find that sharing their grief with the community not only helps with the healing process but also has a positive effect in raising awareness of epilepsy.
Everyone finds their own way of dealing with loss. For some it remains a private matter and this must always be respected. Others are inspired to skydive or run marathons as a tribute to their loved ones – not only does this raise money for the charities which support people with epilepsy, but it also raises awareness of the condition.
I am here to do all I can to help with raising awareness!
Is David Cameron’s Big Society just another way of getting us all to do volunteer work rather than the Government paying for jobs to be done? Do you do voluntary work?
Laura: I think that the Big Society is a way to get us all to build stronger societies by working together and yes doing things that possibly Government can’t afford. I have done a range of things such as clearing up pieces of green space in Thanet, helping charities raise money, abseiling down a cliff for prostate cancer and supporting people in our neighbourhoods. The Big Society is a way of encouraging people to support their communities, but it is not about forcing people to do things that they don’t want to do
I am unable to work because of my epilepsy. I did initially go back to work part time until I started having seizures again. Now I am being told by the Department of Work and Pensions (DWP) that I am fit for work which is untrue. The side effects from my higher dose of pills means I suffer from tiredness, poor concentration and memory, and depression. Do you think current assessments are fair?
Laura: I think that this is something that you should bring up with your local MP – that is what we are there for – to help in situations like this. It would need to be reassessed and with your MP’s support I would hope that you would get a good response from DWP.
Hannah Collins, facebook
My husband has seen his seizures increase dramatically over the last three years. While his company is bound within DDA to adjust and accommodate his needs, there is the potential for assessment via a Capability Matrix to assess whether he is fit to fulfill his contractual obligation. Should this go against him, he will then be out of work. What can be done to raise awareness to both employers and the social benefits agencies of the forgotten people, stuck and unable to work?.
Laura: There should be no discrimination against your husband and I would as a precaution contact your local MP about this as soon as possible to make them aware of the possibility of this problem. I would ask that you request that they also raise this with me with the full details so that we can make representations together.
Louise Davies, Gloucestershire
Did having epilepsy make it harder to become an MP and how have people’s attitudes to your epilepsy changed since you came to parliament?
Laura: I think people were surprised that I declared that I was epileptic. Some people think you might want to hide it from people, but I really do feel that being open about it helps us all. We are all normal people with the right to have normal lives like everyone else.
Many thanks to everyone who submitted questions to Laura. Due to the high volume, Laura was unable to answer all your questions. It was also impossible for her to respond to medical enquiries.