Welcome to the latest Campaign Supporters’ Group newsletter. In the newsletter you will find updates on all of our campaigns as well as information about ways you can become involved.
Thank you to everyone who recently sent a postcard to their local MP asking them to sign early day motion 1816. We had a fantastic response to the campaign and we really do appreciate your support.
If you would like any further information about any of the campaigns mentioned in this newsletter, please contact Michaela Miller on +44 (0)113 210 8877 or email mmiller@epilepsy.org.uk.
Focus on epilepsy services
Earlier this year, the All Party Parliamentary Group (APPG) on Epilepsy carried out an inquiry into the current state of epilepsy services in England. The findings were published in the report, wasted money, wasted lives, supported by the Joint Epilepsy Council of the UK and Ireland – an umbrella body that exists to allow organisations in the UK and Ireland to work together for the benefit of people with epilepsy.
The report condemns continued government failure to meet the needs of people living with epilepsy. It says that, despite the development of effective treatments in recent years, 69,000 people are living with unnecessary seizures, while 74,000 people are taking drugs they do not need.
The report also found that there is a serious shortage of appropriate equipment and trained staff to operate it, as well as a serious shortage of specialists. These shortfalls have seriously impacted upon the treatment of people with epilepsy. There are 990 deaths from epilepsy related causes in England, with 440 of these deaths avoidable, while £189 million is wasted every year.
The APPG recommends a number of actions that can be taken to improve epilepsy services in England. The three key recommendations are:
- that the government urgently puts in place a programme to increase the number of neurologists and other clinicians to levels recommended by the Royal College of General Practitioners
- that the Healthcare Commission carries out, as a matter of urgency, a review into the state of epilepsy services. This would formally assess the state of epilepsy services in individual health care organisations and develop an action plan to improve services where these are shown to be failing people with epilepsy.
- that the Health Select Committee considers an inquiry into the provision of health services for people with epilepsy in England.
Following the launch of the report, Ann Keen, the Minister for Health Services, recently attended a debate into epilepsy services. She has since agreed to meet with the APPG to discuss what steps the government can take to improve epilepsy services.
Campaigns roundup
Early day motions
If you are a member of Epilepsy Action, you should have recently received a postcard in Epilepsy Today magazine, which we asked you to send to your local Member of Parliament (MP). The postcard asked the MP to sign early day motion (EDM) 1816, which calls on the government to take steps to improve epilepsy services as recommended in the APPG report.
The parliamentary session ended in November with 230 MPs signing EDM 1816. The EDM received the equal 11th highest number of signatures for the entire session out of 2,196 EDMs.
The EDM on epilepsy specialist nurses finished with 202 signatures and the EDM on epilepsy and employment finished with 152 signatures.
Epilepsy specialist nurses
You may be aware that, over the past year, some of the 170 epilepsy specialist nurse (ESN) posts throughout the UK have been at risk due to the NHS funding crisis.
Epilepsy Action responded to this threat by developing a campaign to try to save these posts. Our campaigning activities included:
- raising awareness of the vital role ESNs play in caring for people with epilepsy,
- pressuring trusts to preserve posts and to honour agreements to fund posts,
- and pressuring the government to ensure better links between national policies and local delivery.
You will be pleased to hear that, following our campaigning activities, the situation with threats to specialist nurses has significantly improved.
In May 2007, Epilepsy Action attended a successful meeting with Ivan Lewis, Minister for Care Services, to discuss the threats to specialist nurse posts. We are now working with the government to produce a best practice guidance document to encourage health trusts to employ more specialist nurses. The document will be launched at a national conference on 1 May 2008.
Thank you to all members of the campaign supporters’ group who have supported this campaign.
Beauty therapy
Epilepsy Action has begun a campaign to encourage beauty therapists to adopt a positive attitude towards providing treatment to people with epilepsy.
An increasing number of people have recently contacted us saying that they have been refused certain beauty treatments because of their epilepsy. Some people have been told that they need to sign a release form and/or have a letter from their doctor before they can have certain beauty treatments.
As part of the campaign, we are asking people to let us know about positive or negative experiences that they have had when getting treatment at beauty salons. This could include salons that have refused to provide you with treatments because you have epilepsy or salons that have been positive towards your epilepsy.
Any nominations that we receive will be added to a page on the website.
Epilepsy Action will be working with Habia, the government body that sets standards for beauty therapy, to produce guidance for beauty salons on providing treatments to people with epilepsy.
If you would like to nominate a beauty salon on our website please visit www.epilepsy.org.uk/campaigns or use the contact details at the end of this newsletter.
Take Control
Take Control, the campaign that encourages people with uncontrolled seizures and side effects of taking medication to manage their condition, was launched in the Yorkshire and Humberside region in May 2007. The campaign has previously been launched in the north east and east midlands regions. The campaign encourages people to keep a diary of their epilepsy for six weeks to then take to their doctor to assess whether they are receiving the best treatment available.
Following on from the Yorkshire launch in May, we’ve managed to gain the backing of some large chain store pharmacies, which is great news. We are now busy preparing to launch Take Control in the south coast region in early 2008 and are hoping that more people will take part in the campaign.
If you would like a Take Control diary please visit www.takecontroluk.org
| Top tip for campaigning If you are carrying out a campaign to improve epilepsy services in your local area, work in partnership with others who share your campaign aims. Look out for other organisations and influential individuals you can get to take part in the campaign. Make sure that any partners are clear about what you are trying to achieve. |
If you would like to send any comments about this newsletter or require further information about any of our campaigns please contact: Michaela Miller (Campaigns and Policy Officer) Telephone: 0113 210 8800 Email: mmiller@epilepsy.org.uk
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