This is the third edition of the Campaign supporters’ newsletter and the first of 2007.This update focuses on a number of current Epilepsy Action campaigns, including updates on the Take Control campaign and National Epilepsy Week. There is also news about an important inquiry into epilepsy services.
If you would like any further information about any of the campaigns mentioned in this newsletter, please contact Michaela Bartlett on +44 (0)113 210 8877 or email mbartlett@epilepsy.org.uk.
- National Epilepsy Week
- Take Control update
- Epilepsy specialist nurses
- Inquiry into epilepsy services in England
National Epilepsy Week
Epilepsy Action is getting all geared up for this year’s National Epilepsy Week (20-26 May) and we would like to update you about what activities we have lined up and how you can help. The theme this year is employment and epilepsy.
At the end of January, Epilepsy Action sent out 2,000 employment surveys to members and clients.We asked people about their experiences of finding employment and whether they felt discriminated against in the workplace.
The survey results revealed that around a third (32 per cent) of respondents felt that they had been discriminated against by their employer because of their epilepsy within the last two and a half years. There were also a number of positive experiences of employment. One respondent said:“My employer has been fantastic from the outset. Although the job advert stated ‘car driver essential’ and I do not hold a license due to epilepsy, they employed me and have supported me throughout. I am always offered lifts by the staff and my boss in particular has made my life a lot easier.”
Epilepsy Action has developed an online resource for employers and employees, combining all our research and information around epilepsy and employment. The aim of the resource is to provide employers and employees with information and to raise awareness of issues surrounding employment and epilepsy. The resources can be viewed on the Epilepsy Action website or ordered through the freephone helpline on 0808 800 5050.
To mark this year’s National Epilepsy Week we are honouring employers who show understanding towards people with epilepsy to overcome difficulties in the workplace. Winning companies will be presented with Epilepsy Action’s prestigious Gold award for employment, and all nominees will receive best practice certificates.
We will be raising awareness of the issues that people with epilepsy face around employment through local and national media in the lead up to National Epilepsy Week.
Take Control update
The encouraging results from the Take Control campaign pilot in the north east during 2006 have prompted Epilepsy Action to roll out the campaign to a further four regions during 2007.These are East Midlands,Yorkshire, the South Coast and London.
The campaign was launched in the East Midlands on 15 March 2007. Celebrities including Gary Lineker, Sue Pollard and Tom Smith, and three East Midlands MPs offered their support.The East Midlands campaign has been successful. A wealth of media coverage was achieved and there has been a steady pace of registrations.
The Yorkshire roll-out will be launched during early May 2007.We have received overwhelming support from 13 Yorkshire MPs, Duncan Wood and Gaynor Barnes (ITV’s Calendar presenters), and Jim Hooton (Sam Dingle in Emmerdale).
There are approximately 80,000 people in the UK who still have seizures simply because they are not receiving the most appropriate treatment.This could mean that they have not had their anti-epileptic medication reviewed recently and are continuing to take drugs which may not offer the best seizure control. Recent surveys conducted by Epilepsy Action in the north east , East Midlands and Yorkshire found that around a quarter of patients had not had a medication review in the last 15 months. Over half of these experienced side effects from their medication. NICE (National Institute for Health and Clinical Excellence) guidance states that everyone with epilepsy should receive a yearly treatment review, but in practice this rarely happens.
As you may be aware, the Take Control campaign encourages people with epilepsy to assess their own quality of life. People are encouraged to keep a diary of their seizures, side effects and treatments. The person with epilepsy fills in the diary for a suggested six weeks.They record seizures, side effects and the impact on their daily activities. On completion they are encouraged to make an appointment and visit their GP. Having relevant information from the diary helps doctor and patient talk about epilepsy management and allows for an informed treatment review. The aim is to ensure that people are being treated as effectively as possible and referred to a specialist if required.
So far, over 538 people have registered and the website has had 23,892 hits since the campaign started in May 2006.We have had a lot of media coverage, including BBC Look North East and BBC Look East Midlands television coverage.
If you would like to take part in Take Control, you can do so by:
- Calling Epilepsy Action’s Helpline on freephone 0808 800 5050
- Texting TC, a space, followed by your name to 80039
- Visiting www.takecontroluk.org
For further information on the campaign, or to access the seizure diary, visit www.takecontroluk.org or contact Keeley Eastwood on 0113 210 8800.
Epilepsy specialist nurses
We would like to thank everyone who has been supporting our campaign to save the many epilepsy specialist nurses who have been threatened with redundancy, reduced working hours, or spending less time on specialist epilepsy duties due to cuts in NHS funding.
It has now been confirmed that an epilepsy specialist nurse who left their post in Nottingham will not be replaced; resulting in the service being reduced by 50 per cent.We are calling on Nottingham University Hospital’s NHS Trust to review its decision to cut epilepsy services in Nottingham and the surrounding areas.
We are asking people who live in the Nottingham area to send new letters to Dr Peter Homa, Chief Executive of the Nottingham University Hospital’s Trust, outlining how crucial it is that this nurse is replaced.We would be grateful if you could send a letter, even if you have previously done so.
The All-Party Parliamentary Group on Epilepsy (APPG) met on 4 December 2006 to discuss the threats to epilepsy specialist nurses and to specialist nurses in other neurological conditions. Since the APPG meeting, John Battle MP has tabled an Early Day Motion (number 541) in Parliament to gather signatures from MPs to show their support for the issue.
We are also asking everyone with an interest to check if their local MP has signed Early Day Motion 541 and if they have not signed, to contact their local MP to ask them to sign. If you have internet access you can check if your local MP has signed the Early Day Motion by visiting edmi.parliament.uk. If you need to know who your MP is then visit www.writetothem.com and enter your postcode, or telephone the House of Commons Information Office on 020 7219 4272. If you don’t have an internet connection, your local reference library can give you contact details for your local MP.
On 1 May Epilepsy Action, along with representatives from the MS Society and the Parkinson’s Disease Society, met with Ivan Lewis, the Minister for Care Services.The main focus of the meeting was to clarify the government’s position on specialist nurses.The Minister agreed that local health commissioners needed to better understand the direct and indirect benefits of specialist nursing. Now a guidance document will be prepared to outline best practice and educate health commissioners on the benefits of protecting the specialist nurse post.This will be launched at a national conference in early 2008.
Inquiry into epilepsy services in England
The All-Party Parliamentary Group on Epilepsy has been holding an inquiry into the current state of epilepsy services in England.
As part of the inquiry, two or three Members of Parliament (MPs) have heard oral evidence in three separate evidence sessions.The first evidence session heard evidence from people who have used epilepsy services, the second session featured evidence from epilepsy health professionals, and the third session heard evidence from epilepsy voluntary organisations, including Epilepsy Action. In addition, Epilepsy Action has submitted extensive written evidence about epilepsy services in England.
The information will be used to produce a report to be used to support continued pressure on service providers to protect and enhance the current level of service to people with epilepsy.The report is due to be published at the end of June.
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