Last night there was a short debate in the Houses of Parliament on epilepsy and neurology.
It took place in the Main Chamber of the House of Lords, allowing Lords, Ladies and Peers to discuss improving health and social care services for people with epilepsy.
The debate was proposed, and was be opened, by Epilepsy Action’s President Baroness Ford of Cunninghame.
The exact title of the debate was: “Baroness Ford to ask Her Majesty’s Government what progress has been made in improving neurological services, and in particular the provision of epilepsy services, in the United Kingdom.”
You can watch the debate on the parliament.uk website.
For more information on how Epilepsy Action campaigns for change, contact pscott@epilepsy.org.uk
Comments: read the 12 comments or add yours
Comments
I would like to have a change to the medical assessments that are carried out so they are tailored for mental disabilities alongside physical disabilities and more support and understanding of the condition. This condition can not b fully understood, like many conditions such as fibromyalgia and autism unless u personally suffer from it x
After my son was diagnosed in September we were prescribed medication and sent on our way - no support, no explanation of what type of epilepsy he has, just a referral to a specialist neurologist who we won't be able to see for 6 months. Not good enough and as a result of bad side effects from medication my 9 year old son and the rest of family are suffering. We need more specialist neurology support available.
Since the change over in benefits from Incapacity to ESA endless form filling has been priority. I have been an Epileptic for ten years now unable to with seizures not controlled by medication and are random, my life is OK but l feel more could be done for those with neurological conditions. There is no clear pocket for us, we have a form a mile long to complete and small parts that kind of apply to us making the whole thing stressful and unsavoury. Not enough is known of the condition like so many. Before pigeon holing people, know them. Do not stuff them into A or B. We have feelings and live a very incomplete day to day existence now and do not need to have an unsure and insecure frightening future as so many disabled people have and are fighting. The government is not hearing EVERYONE just making decisions for ease.
I agree that there is so much more to epilpsy than just seizures - and the focus of neurology when a patient is seen is primarily this - how many when etc. This is also used by dwp and other agencies but consideration is not given to the side effects of both the condition and the medication. There are many things which effect someone with epilepsy other than seizures, even those which can affect women alone, and are not readily discussed, or those in education - both under 18 and in higher education. It has an impact on those who work - cannot drive for eg and yet a bus pass prohibits them from getting free travel before 0930. Memory loss, is common, yet often, along with other effects of the condition, brushed aside as neurology do not have time to deal with anything other than figures. I do hope that inthe future it will be looked at in a more positive way, and it will be viewed as more than just seizures, and the day to day aspects will be looked at by more than just the charities who help.
Are there any support groups in the fenland area...?..my 24 yr old is very isolated apart from her PAs, but would love to make new friends. More should be done to get groups together in the local areas...as travel is a problem for many.
She has lost all of her friends along the way as their life moved on and hers was lost for more than 6 years.
Thanks
Hi Caron,
We have several groups in Central England. You can find details of them here: http://www.epilepsy.org.uk/involved/branches/central
If you would like any information about our local groups, contact our local services team on 0113 210 8800
My Epilepy effects every part of my life, from going out to cooking, everything. And now the Goverment want to make my life even harder my removing my Incap and possibly not granting me ESA .
I would like to see the position of Epilepsy Specialist Nurses made secure: they are an invaluable resource for those of us with epilepsy. They understand more about how it feels to have epilepsy than some of the medics and they are very knowledgeable about drug side-effects. They also have more time to listen than many medics. They also know us better than junior members of the neurology team often do and don't have a total lack of knowledge of our history as some junior neurology team members do.
Secondly, I would like more GP training particularly regarding interactions of other medication with anti-epileptic medication and a more general awareness of how epilepsy affects a person generally.
the gov needs to change the medical assessment as it dos take how a person is after a fit it can take a hour or 2/3 days for a person to fully come out of the fit (recover from it) .
as a carer for my wife whos had fits since she was 12 and still not under control (she has grand mal fits) i feel that all persons who have epilepsy do have the care that they need before and after a fit. people do not know about .........
why do the doctors aways ask if you been drinking my wife dos not drink? its there in fornt of them?
i have had epilepsy since i was 9 and now i am 35 i have petit mal and also grande mal seizures.... i get what i call jelly legs alot and i try not to go out to early as at times i have seen my jelly legs appear in the middle of a busy shopping area and people look at you as if to think what the hell sort of thing.... i am always tierd as not only do i take lamotrigine 150mg twice daily for my epilepsy but also i have tablets for a ulcer and also tablets for allergies and also astma as well.... so my body must think at times helppppppppp lol.... they should educate people at schools as well about medical things like epilepsy or diabities and adhd among other things so people can be more aware of what to look out for and also know what to do if anyone needs help there n then.....
I started having epileptic seizure after a serious car accident. After losing a career, driving licence, my identity my then GP diagnosed me with Depression. My then psychotherapist noticed that on my notes previous GP's had written about me 'Attention seeking' after discussing I was referred and found 2 (two) major areas of fault only one caused my epilepsy the other had made me totally deaf in the left ear since being 5 (five) years old. Since moving my GP, he has referred me to Neurologists, through numerous MRI's, EEG's, drugs etc. I am now a single mum, recently have my driving licence returned. The biggest problem now is finding a job, a number of persons including neighbours, previous employer have actually referred to me as a 'Psychopath'. The problem is lack of knowledge, publicity. I am a Parent Governor, the 2 (two) schools I have been involved with have no Policy regarding epilepsy. The extra help needed for students. The students themselves are embarrassed to admit their problem. We need to promote 'Acceptance' educate everyone including schools. At present I am trying to locate MRI scans for the Science Dept to show brain activity, this will help with Science on the whole but also may make some students to stop and think about what epilepsy really is. My life has taken a step up after 15 years of problems. My new GP phones to ask if I am okay, I never bother him. I have the ability to listen to my body, understand. A friend of mine on Facebook is a PE teacher in Brazil, he is studying how people may be able to partially control their seizures their alternative exercise. My GP told me to take part in Tai Chi, it is wonderful, it lowers stress & blood pressure causes of seizures (one cause of). I am no-one special but will not allow my epilepsy to control my life. I am the one who controls my life, please, please don't give up hope you are not alone. Patience is a word in short supply in today's world, it has worked for me. I am a single mum, a house, a cracking little car, a school governor. Yes unemployed but will not allow people to write me off as a nobody. Neither should you. Keep your chin up we will get their. My luv to you all, take care of yourselves. Thinking of you all. Kisses to you all. XXX
For others who would like to listen to this useful parliamentary debate it may help to know the relevant neurological debate to include Epilepsy starts at 19:30, over four hours and 55 mins into the televised debate on 20 Nov.
Our key concern highlighted in the debate is lack of trained and focussed resources. Our experience is that we have no Specialised Epilepsy nurse. We have seen a paediatrician whose advice and knowledge was at conflict with the superb detail we have found on the Epilepsy Action website, demonstrating a lack of training. Should we consider ourselves lucky to have eventually seen the specialist consultant once in a year as his queue for appointments is over three months long?
Thanks to Epilepsy Action information we are surviving through personal research to gain reassurance and to give me the confidence to challenge initial medication and side effects. However this does not negate the need for more formal support through the NHS and the education system to support all with this condition. I have recently compared epilepsy as a condition to dyslexia (poles apart but hear me out). Dyslexia as a condition is not just about the ability to read and write like the majority of students, the condition can also effect behaviour and other abilities. Epilepsy is not just about seizures, the condition and the medication often effects behaviour and other abilities - yet within education (in our experience) there is more awareness of dyslexia than epilepsy. This is but one example of where training and awareness needs to be compulsory with the vast numbers suffering without support. Thank you Epilepsy Action!