A Critical Time for epilepsy in England

[EpilepsyAction1]

Epilepsy Action has launched its new report, A Critical Time for epilepsy in England. The report shows that epilepsy health services in England are not good enough and vary in many areas. It also shows that many of the new organisations responsible for NHS services are not considering epilepsy in their plans for the future. For more information please visit epilepsy.org.uk/involved/ca...

[bagma7]

that's true I've been to a couple of doctors in my area and there is at least 1 or 2 leaflets about epilepsy the rest is about cancer or women's problems which I don't have a problem with but as epilepsy is growing I think that there should be more information about the illness and how to deal with it.

[dartington]

It's years since I've seen any epilepsy info in my Dr's surgery which covers a very large area. We don't have an epilepsy nurse in our area - who do we turn to? I want to talk about my problems past and present sometimes, but don't want to be a nuisance. This lifelong problem rears it's head every week as it remains uncontrolled even with meds. With cutbacks and health resources stretched to the limit for much more critical illnesses there is no hope for us at the moment.......I've raised this with my Dr and neurologist but they have no answers except CBT, which I'm trying next.

[EpilepsyAction1 Partner Epilepsy Action in reply to dartington]

It must be very frustrating to feel that there isn’t enough support available for you.

Have you heard about our online community, forum4e? This is for people with epilepsy and carers of people with epilepsy. Hopefully, you will be able to talk to others in a similar situation.

Epilepsy Action has an extensive network of branches, coffee and chat groups and volunteers throughout the UK which provide local support to people with epilepsy, their family and friends and professional carers. You could contact our freephone helpline 0808 800 5050 to see if there is a local branch in your area.

If there isn’t an epilepsy nurse in your local area, and you feel frustrated about the lack of local epilepsy services, you could consider campaigning for better epilepsy services.

The campaigning section of our website has more information.

Advice & Information Officer

Epilepsy Services

[dartington in reply to EpilepsyAction1]

Thank you for your concern - have you anything in Devon? CBT apparently isn't the answer for me after consultation I had yesterday. Would love to go to something with people in similar situation to talk things over but haven't the mental energy to campaign myself. Condition plus meds side effects exhaust me mentally and life is difficult to plan as attacks are irregular and weekly on average.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Darlington

To find out more about our local meetings and events in Devon, please use these links:

Groups - epilepsy.org.uk/involved/br...

local events - epilepsy.org.uk/involved/in...

Regards

Diane Wallace

Advice and Information Services Officer

Epilepsy Action