Home |

National Epilepsy Week 2009 – taking action

Your rating: None Average: 4.6 (5 votes)
CAPTCHA
This question is for testing whether you are a human visitor and to prevent automated spam submissions.

National Epilepsy Week (NEW) 2009 takes place from 17-24 May. Epilepsy Action is using this week to keep up the pressure on politicians to improve epilepsy services across the United Kingdom and needs your help.     

Awareness and understanding about epilepsy is low among politicians and action needs to be taken to improve epilepsy services for the 456,000 people with the condition across the UK. A survey carried out in 2007 found that almost 90 per cent of MPs questioned did not know how many people in the UK have epilepsy. A further 45 per cent of the MPs questioned admitted they had “no idea” how many people have the condition. 

Despite some improvements in epilepsy services, there is still a great deal of work to be done. Epilepsy care and treatment continue to be underfunded across the UK.

Epilepsy Action wants politicians across the UK to take notice of people with epilepsy and commit to help improve epilepsy services. To achieve this, we need as many of you as possible– and your friends and families – to meet with your local Member of Parliament (MP), Assembly Member (AM), Member of the Scottish Parliament (MSP) or Member of the Legislative Assembly (MLA) at the national Parliament/Assembly of the country you live in. This will take place on or around 20 May 2009 in England, Northern Ireland, Scotland and Wales.

We want this to be a landmark moment in campaigning for better services for people with epilepsy. These meetings will provide a fantastic opportunity for you and other people living with epilepsy to talk about how epilepsy impacts on your lives and the improvements that could be made to epilepsy services. They will also help to raise the profile of epilepsy.

It’s crucial that a large number of people take part to get across to their representative how important it is that services improve. The more people taking part the greater the opportunity to influence change. We want to succeed in raising the profile of epilepsy, and the need for better treatment and services, and we need your help to do this.

What should you do?

We can't stress enough how important it is that you save the date 20 May 2009 in your diaries now and book time off work if necessary.

Please tell your friends and family around the UK and ask them to take part to get the momentum going. We hope that there will be at least one constituent lobbying every MP, MSP, MLA and AM.

If you are interested in taking part, please register your interest by completing this form.  Alternatively you can contact Michaela Bartlett on 0113 2108877 or email mbartlett@epilepsy.org.uk

Epilepsy services across the UK: 

In England: the All Party Parliamentary Group on Epilepsy (APPG) published a report in June 2007 calling for significant improvements to be made to epilepsy services. The report said that there were serious problems for epilepsy services in England, including:

  • 400 avoidable deaths a year
  • 69,000 people living with unnecessary seizures
  • 74,000 people taking drugs they don’t need
  • £189 million needlessly spent each year  

In Wales: in December 2008 the Welsh Assembly Government is due to launch groundbreaking plans for improving the treatment of people with epilepsy in Wales. The plans will set out a number of ways in which the care and treatment for people with epilepsy in Wales can be improved.

This is a positive step but pressure is needed to make sure that the government and the health bodies implement the changes and address the current poor level of epilepsy health services in Wales. 

In Northern Ireland: the current situation is that people living in some areas of the country receive a better service than others. This is due to issues such as distance from major hospitals and specialist epilepsy clinics and a shortage of epilepsy specialists.
In Scotland: some improvements are being made to epilepsy services. However, there is still very limited access to epilepsy services for people who do not live in one of the major cities. There is also a need to increase the number of epilepsy specialist nurses and to ensure that all NHS Boards provide adequate epilepsy services.