Category Archives: Campaigns

Facebook Live – January 16th 2019 : “A Mind Unraveled” with Kurt Eichenwald

Watch this Facebook Live – on Wednesday, January 16, 2019, at 8:00 pm. ET

The epilepsy journey can be a traumatic experience, especially when people are not given correct information or do not see an epilepsy specialist. Myths, misbeliefs, and lack of knowledge all contribute to the misperceptions and negative life experiences faced by so many people with epilepsy.

Kurt Eichenwald is a national award-winning journalist and New York Times bestselling author. He will share his epilepsy journey by talking about his book, A Mind Unraveled, on a Facebook Live on January 16 at 8:00 p.m. ET. The stories about his life may resonate with you or someone you know. Others may be surprised by the persistent challenges and difficulties obtaining proper epilepsy care in this day and age.

Watch online, click the link : www.facebook.com/EpilepsyFondationOfAmerica

This broadcast will also be archived on the facebook page to watch again if you miss it.

Join the Facebook Live on January 16 for a chance to get a free copy of A Mind Unraveled.

  • During the Facebook Live, you will get instructions on how to obtain a copy of the book.
  • A limited quantity of books is available so make sure you tune in to get one!

This program is supported by NeuroPace, Inc. Please note the contact information shared to receive a copy of A Mind Unraveled by Kurt Eichenwald will not be added to any email or mailing list from the Epilepsy Foundation or NeuroPace, Inc. You can choose to receive information from one or both organizations by checking the appropriate box when entering to win a free copy.

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PURPLE DAY – MARCH 2013

web-purple-dayThere isn’t just one reason to hold an event for Purple Day, there are 600,000! That’s the number of people living with epilepsy in the UK right now.

Event details

When: Tuesday 26 March 2013
Where: Nationwide

About Purple Day

Purple Day is the international day for epilepsy awareness. To celebrate this year, Epilepsy Action will quite literally be turning purple – and we want you to join us! You can do anything – just make sure its PURPLE!

Organising a Purple Day event really is simple! Whether you paint yourself purple, organise a purple bake off or host a purple tea party you can hold your Purple Day event anywhere and invite anybody along to share in the fun.

Last year Epilepsy Action had Purple Day events all over the UK; from London to West Glamorgan, in schools, homes and workplaces.

Purple Day 2013 LogoLinks:

Epilepsy Action Websitehttp://www.epilepsy.org.uk/
Purple Day Websitehttp://www.purpleday.org/

 

Event: Epilepsy Action in Bristol – Treatment Options – 16th Feb, 2013

Epilepsy Action  - Logo

For More Information About This Event, Please Visit This Link: http://www.epilepsy.org.uk/involved/local-events/treatment-options

When ? : 16 February, 2013
Time of Event: 12pm to 4pm
Where ? : The Watershed, 1 Canons Road, Bristol, BS1
Cost of Event: £6 / £4 (cons)

[box]CLICK HERE TO BOOK YOUR TICKET FOR THIS EVENT IN BRISTOL[/box]

This series of half day events across England and in Wales will give information to people with epilepsy. They will be about the options for treatment beyond medication in difficult to control epilepsy.

People attending will have the opportunity

  • To gain knowledge on epilepsy and medication to control seizures
  • To be aware of treatment options beyond medication
  • To be aware of surgery as a treatment for people with epilepsy
  • To gain knowledge on the social aspects of living with epilepsy and the support available from Epilepsy Action

Cyberonics, manufacturers of the vagus nerve stimulation system (VNS) have generously sponsored these events.

The sessions will cover

  • Epilepsy and medication to control seizures
  • Surgery for epilepsy
  • Vagusnerve stimulation (VNS)
  • Ketogenic diet as a treatment for children with epilepsy
  • Complementary therapies
  • Personal experience of using VNS

Information about epilepsy and the work of Epilepsy Action will also be included

Each event will have presentations from medical staff and Epilepsy Action staff. Volunteers will be present providing information for people to take away with them.

NHS TEDMEDLIVE – Bristol NHS Health Partners want to hear your views on upcoming changes

northnhsbristol_logo

Bristol HealthPartners are keen to hear from the citizens of Bristol on what they think the biggest health challenges are for the city. Please could you forward this message/information to members of your patient groups.

In partnership with TEDMED, Bristol Health Partners are running a TEDMEDLIVE conference in Bristol on April 18th and 19th and want to canvass your views. One of the sessions at the event will be chosen by the people of Bristol, (in association with The Bristol Post) on what you think are the biggest health challenges for the city.

Please see the links below for more background information, read what the press say and how to register for the event:

To find our more, (CLICK HERE TO DOWNLOAD THE PDF LETTER) from the North Bristol NHS Trust

http://www.thisisbristol.co.uk/think-Bristol-s-biggest-health-challenges/story-17890953-detail/story.html

And Register your interest for the event on the Bristol Health Partners website (click link below):

http://www.bristolhealthpartners.nhs.uk/tedmed-live-bristol/

 

A Critical Time for Epilepsy in the UK

From the Epilepsy Action website : http://www.epilepsy.org.uk/involved/campaigns/a-critical-time

Today 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.

Epilepsy Action’s Vice President, Laura Sandys MP, will later formally launch the report at a reception in the House of Commons. Members of Parliament, Members of the House of Lords, key organisations and people with epilepsy will all be in attendance to hear the findings of the report, and Epilepsy Action’s recommendations to improve services.

The surveys

Last year we conducted four surveys around health services for people with epilepsy in England. We believe this makes up the most comprehensive study of epilepsy services ever carried out in the UK. These surveys were of:

  • People with epilepsy.
  • Acute trusts (hospitals and Foundation trusts that provide services).
  • Primary care trusts, primary care trust clusters and newly forming clinical commissioning groups (who provide and buy health services for people).
  • Local authorities, who will soon have a role in deciding local health priorities.

The results from these surveys showed that the services provided at the moment are not good enough.

The headlines

We found that the services currently being provided are not meeting the needs of people with epilepsy. These results mirror similar findings uncovered by Epilepsy Action’s 2009 report, Epilepsy in England: time for change. Just as then, we have found that access to specialists can depend upon where you live. In some places the basic elements of an epilepsy service, such as an epilepsy specialist nurse, are missing.

We also found that not enough is being done to plan for better services once changes to the NHS, planned for April, have taken place. Although we surveyed the organisations during the big NHS changes, it was clear that epilepsy was not featuring in plans as it should have been. This leaves us concerned that there are no plans to address these gaps over the next few years.

Recommendations

Our report carries 10 recommendations that we believe, if carried out, would significantly improve epilepsy services. They include:

  • Each clinical commissioning group agreeing to carry out an assessment of the needs of their patients with epilepsy.
  • All clinicians to make sure their patients with epilepsy have been offered a care plan, and to help them create one if they haven’t.
  • Members of Parliament to follow up this report with their local health trusts to see that they make plans to address the problems we’ve identified.
  • The Health Select Committee in Parliament to conduct a first ever inquiry into epilepsy services. This would hopefully lead to an action plan to address any problems that the Committee identifies.
  • To see all our Recommendations in full, please read our full report.

Copies of the report

This report is aimed at clinicians, health service commissioners and elected officials. However anyone can download a copy. (<< click on this link to download the PDF document of the report)

If you are a clinician or a commissioner, or you are campaigning with us, you can get a free hard copy of this report. To do this, please get in touch with us using the details at the bottom of this page.

Campaign with us

Epilepsy Action is making sure that all MPs, Peers, hospital trusts, clinical commissioning groups and local authorities get a copy of the report. We will be including any relevant results we have for their local area.

However we do not want the report to gather dust on a shelf, without any changes coming as a result. So we are asking our supporters to write to their new CCG and their local authority (council) to ask what actions they will be taking now that they have seen our report.

To help with this, we have made some of the key statistics for each area available on a map. There are two maps – one shows the responses from local authorities, and one which shows what health trusts told us.

We are then encouraging our supporters to promote our report to the service planners in your part of the country.

Below we have drafted two letters to help with this.

  • You can write to your new clinical commissioning group, to ask what plans they have to improve services for people with epilepsy.

Find the contact details of your new CCG. If you are not sure which CCG you belong to, you can contact Epilepsy Action’s campaigns team to help you find out.

You can use (download) this template letter as a starting point to help with your own letter.

  • You can write to your local council, who will soon have new responsibilities for planning local health and social care services.

Find the contact details of your local authority.

You can use (download) this template letter as a starting point to help with your own letter.

If you do write to your local CCG or council, tell us how you get on. This will help us to form a picture of how services are developing around England.

If you would like more information about the research or how you can campaign with us, please contact the Campaigns team by either emailing campaigns@epilepsy.org.uk or calling Epilepsy Action on: 0113 210 8800.

If you work for a NHS health trust, a PCT, a Commissioning Group or local council, and believe we have incorrectly or inaccurately recorded you work we would be happy to receive new information and will update our records accordingly. Please get in touch with the Campaigns team by emailing campaigns@epilepsy.org.uk or calling 0113 210 8800.

Thanks!

PLEASE SHARE AND TALK ABOUT THIS REPORT ! 

 

Disability Bus Pass – Epilepsy Campaign

We need you on board with our bus campaign!

Epilepsy Society is campaigning for changes to the disabled person’s bus pass – to include peak hours and a free companion travel pass, where needed.

Click this link for all the info:

http://www.epilepsysociety.org.uk/NewGetInvolved/Awarenessraising/Campaigns/Bus

The pass is a vital concession for people with epilepsy who have been refused a driving licence because of their condition.The pass currently allows free travel on buses in England  between 9.30 am  and 11pm and all day at weekends.  In Scotland and Wales the pass is valid at all times and includes free travel for a companion where needed. Some local authorities in England have implemented their own bus  travel  concessions  and extended the hours of travel to include peak times.

WHAT IS NEEDED TO BE DONE URGENTLY BY YOU AND YOUR FAMILY !

Click these links right now and get involved..

If you would like an A3 poster about the Epilepsy Society Bus Campaign, to display in a public place please email: pressoffice@epilepsysociety.org.uk

Travelling to work

Amanda Cleaver, communications and campaigns manager at Epilepsy Society, said:

We think this is confusing and  unhelpful to those who need their pass for travelling to work. Epilepsy Society is  campaigning for the same unrestricted  operating hours throughout the UK . The proposed change would benefit anyone entitled to the pass and we hope we can count on wide ranging support.

We are also encouraging people to write to their MP on this matter and their local authority because they do have the power to make this change themselves.

Report – Disability campaigner spits at #bristolmayor #LibDem candidate John Rogers, at a #HardestHit peaceful protest in Bristol

On Thursday 25th October, a peaceful #HardestHit protest took place during lunchtime, organised by the Bristol Disability Equality Forum , held outside the Council House in Bristol, UK – yesterday (Thursday 25th Oct 2012).But – a few disruptive things took place, and one of these was picked up by the local press (The Post) who posted this story today “A Disability campaigner spat at #bristolmayor #LibDem candidate Jon Rogers”. And of course, a row broke out between Jon and other people with Disability’s, during this peaceful protest held in Bristol, campaigning against the cuts to Welfare, and employment.

As usual, the token ‘anarchist’, who has their own agenda, gets all the publicity from the media, as well as giving free publicity to two of the mayoral candidates, while the actual reason for the demonstration (i.e. disabled people’s fears of the cuts hitting them) gets a little bit at the end of the report. 

Mark Williams – co-Chair Bristol Disability Equality Forum

Background about the cuts to Welfare in the UK:

A report by the Children’s Society and Disability Rights UK claims 230,000 severely disabled people are set to get between £28 and £58 less in benefits every week, while 100,000 children stand to lose up to £28 a week.

Also – up to 116,000 disabled people whoWORK , will be at risk of losing £40 a week (which helps with costs such as Travel and Work Place adaptions, that employers do not provide!

Ms Kaye Long said: “On a day-to-day basis the cuts will have a huge effect on people’s basic human rights and living conditions. At least half a million disabled people will feel the negative effects.”

What the local Press had to say: (link to this news story)

http://www.thisisbristol.co.uk/Campaigner-spits-mayor-candidate-Jon-Rogers/story-17186260-detail/story.html

Here’s a few quotes, take from The Post (Bristol) (www.thisisbristol.co.uk) who reported on this protest, that I attended:

Quote: 
MAYORAL candidate Jon Rogers was spat at by a demonstrator when he attended a protest over cuts to benefits for disabled people. A man campaigning on behalf of a rival candidate also threw his cigarette at the Liberal Democrat hopeful, who is the city council deputy leader.

Jon Rogers said “he was appalled at what happened and said he believed the actions constituted “assault”.” The campaigner who spat at Jon Rogers, ‘Michael Wright’, attempted to justify his actions by claiming Jon Rogers had “no place” at the march because of Bristol City’s Council’s planned closures of care homes for Disabled and the Elderly.

The activist, who is campaigning for Trade Union and Socialist Coalition mayoral candidate Tom Baldwin, told The Post: “I don’t think he has much of a place at a demonstration like this. He has closed operations for eight care homes in Bristol.”.

After Jon Rogers walked away from the fracas he said: “I have come down here to offer myself up to talk about disability issues, not to be abused in an appalling way. It’s assault.” But Jon Rogers said he did not intend to take the matter further.

Read More:

Read the full article from ‘The Post’ (This Is Bristol), here: http://www.thisisbristol.co.uk/Campaigner-spits-mayor-candidate-Jon-Rogers/story-17186260-detail/story.html

SAM DOWNIE’S COMMENTS ABOUT WHAT TOOK PLACE:

As I was attending this peaceful ‘Hardest Hit’ protest, I’d thought I would share with you. Read to see what really went on and what I observed over the space of Lunchtime.

1. Jon Rogers

Around 20 minutes into this peaceful protest, Jon Rogers came by on his bike, wanting to know what was taking place. He did start to talk to various people, including me and yes he did listen to concerns.

Whilst I was talking to other people, I heard a argument row taking place, between Jon and someone who I didn’t know, someone who I’d thought had just ‘shown up’.  So I walked over to where the row was taking place, and listened for a short while.

No I didn’t see Jon being spat at. No I didn’t see a cigarette flung at him.

But – I did hear Jon say (during the argument taking place) “I don’t support people like you, and I don’t think you all need to be here”. Was this a dig at the person who spat at Jon, or was this a general thought/saying of his to everyone who was there (me included) ? (if that’s the case then that could be called ‘indirect disability discrimination’).


Other people I saw there and talked to were:

– Marvin Rees ( Bristol Mayor, candidate for Labour party) *in this photo

– Tom Baldwin ( Bristol Mayor, candidate – Trade Unionist and Socialist Coalition)

thanks both for speaking to me and coming to see what was going on and learning more about the Hardest Hit welfare cuts.

2. Why Was I There ?

Simple. I work. I have a Disability, and I claim Benefits (DLA and Working Tax Credits) which help me to stay in WORK.  I’m a self-employed Journalist (freelance for BBC News, freelance for The Guardian, freelance for Channel 4 + other technology magazines and websites). I’m also a Presenter / broadcaster. More information about me at my website :http://www.dsoundz.co.ukAnd as a Broadcaster/Journalist, these Welfare cuts will effect me, and my work.

Why? well perhaps I can answer it like this: Why do I need to claim Benefits?

3. What’s my Disability ?

It’s simple again. I have 3 forms of Epilepsy. (read more about me and Epilepsy here : http://www.dsoundz.co.uk/sam-and-epilepsy ). Epilepsy effects over half a million people in the UK, and over 50 million people worldwide.

I am banned from Driving (it’s against the law to drive with Epilepsy, where ever you are in the world), so need help with costs for getting to / and back from work.  My seizures effect the way I work too, as Epilepsy effects Memory and body control.

The AED’s (anti-epilepsy drugs) I take, don’t cure Epilepsy… as, there is no cure for Epilepsy… fact!All AEDs help by dampening the effects of seizures. And I take quite a bit of drugs per day to help combat seizures, but like all drugs, there are side-effects.

When you look at me. Ask yourself this: Can you see me having a seizure? (I have over 10 of these a day!). Epilepsy is a ‘hidden disability’, as it’s within the brain. So the next time you see me, do ask me How am I, and ask about what Epilepsy is and how it effects me and my work.

There’s more information about Epilepsy here : http://bristolepilepsy.org.uk/resources/epilepsy-facts/

4. What to do next ? 

Carry on protesting.
Carry on sending out the message that Welfare cuts, will hit everyone – in employment (or not).

What I am doing right now is…  talking to MP’s and various Lords in the HoC, by helping them with research.

I’m also doing some research for the ‘POST’ office (that is the Parliamentary Office for Science and Technology) a government body who discuss research and analysis in all kinds of things, but more recently they have held discussions and posted documents about Welfare benefits looking at things such as IT (technology) and how people with various impairments might not be able to use these new services being introduced by the DWP (department for work and pensions).

I’m also looking into the Data Protection Act and how Fraud is rife within the DWP and it’s Work Programme (but I’ll blog about this at another time).

5. To Sum Up

So before you come to the conclusion that people with Disability’s, do not work / or are benefit scroungers. Do think again ! and make sure you know yourself what the right thing to say is.

Working people like me, ARE tax payers. We pay rent too.  This is why I protest against the Welfare cuts, as it effects employment and a chance in a working life.

A Disability is for life…. fact !

Disability, effects everything around you, and sometimes there’s a small chance of a cure. There isn’t one right now for the over 50 million people worldwide who suffer daily with Seizures and Epilepsy.

So now you can see why I was there at the Hardest Hit protest in Bristol, on Thursday 25th October 2012.

Credits:

photo’s by Sam Downie (c)