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Action Campaigns epilepsy Epilepsy Action events

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/

 

Categories
Action Campaigns Epilepsy Action events

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.

Categories
Action Campaigns epilepsy Epilepsy Action events Health news NHS

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/

 

Categories
Action Campaigns epilepsy Epilepsy Action Health news NHS

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 !