Campaign Supporters Group newsletter, December 2008

As 2008 comes to an end, on behalf of everyone at Epilepsy Action, I’d like to express thanks for your support throughout the year. 2009 looks set to be a busy year for campaigning. Early 2009 will see the launch of an Epilepsy Action study into local epilepsy service provision in England, which we’ll be asking you to support after the official launch. Epilepsy Action needs you to support National Epilepsy Week 2009,taking place between 17-23 May, where we are hoping to get as many people to their national Parliament/Assembly to meet with their local MP. You can read further information about the plans below.

Michaela Bartlett
Campaigns & Policy Officer

National Epilepsy Week 2009 – taking action

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

Awareness and understanding about epilepsy is low amongst 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. Even more worrying, 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 you – 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 people to talk about how epilepsy impacts on their lives and the improvements that could be made to epilepsy services. They will also help to raise the profile of epilepsy.

Some of the issues across the UK include:

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 every 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.

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.

If you are interested in taking part, please register your interest. You can do this by contacting me through the contact details at the end of this newsletter or by visiting www.epilepsy.org.uk/nationalepilepsyweek

Campaigns roundup

Update on meeting with government minister

In the last issue of the campaign supporters’ group newsletter I shared the news that the Minister for Health Services,Ann Keen, had agreed to attend a meeting of the All Party Parliamentary Group (APPG) on Epilepsy.

I’m pleased to report that Ann Keen did attend the meeting and there were some positive outcomes. She recognised that there is undoubtedly still more to do to improve epilepsy services. She also promised to take away points raised in the discussions to consider how best to address these areas. Finally, she committed to report back on the areas acted upon by National Epilepsy Week 2009.

Mothers in mind

Epilepsy Action has launched its Mothers in mind: healthy births campaign, which aims to improve support for women with epilepsy during pregnancy and parenthood. Many women with epilepsy have told us that before pregnancy, and in pregnancy, they begin to think about their health and epilepsy. If you’re planning a family, you may wonder what affect your epilepsy, seizures or anti-epileptic drugs may have on the health of your unborn baby. Rather than wondering, you could request a copy of Epilepsy Action’s Mothers in mind booklet and ask your GP to refer you for preconception counselling.

In the meantime, you may want a little support through your amazing journey or the decision making process. Epilepsy Action set up The Pregnancy Diaries, to help you and other parents and parents to be, to support each other. The Pregnancy Diaries are written by mothers for mothers and fathers with epilepsy.

If you would like copies of the resources please contact the Epilepsy Helpline on freephone 0808 800 5050 or visit Epilepsy Action’s website at www.epilepsy.org.uk/mothersinmind

The Pregnancy Diaries can be viewed at www.epilepsy.org.uk/info/women/having-baby/pregnancy-diaries

Wales plans to improve care

Plans to greatly improve epilepsy services in Wales are underway with the new Service Development and Commissioning Directives for Epilepsy. Ambitious measures are being taken, to allow people to manage their own condition more effectively. Part of the plan will also be to provide care closer to people’s homes – reducing hospital admissions.

The directives are due to be launched in early 2009 and Epilepsy Action is hoping to be a big part of the launch. The plans have been formulated in partnership with the All Wales Epilepsy Forum, of which Epilepsy Action is a member, and with the full support of Welsh Assembly Member, Edwina Hart.

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