National Epilepsy Week 20 - 26 May Celebrating achievement
The theme of National Epilepsy Week 2012 was achievement. A huge thank you to everyone who took part and made the week a success. The focus for our campaign was supporting young people to achieve their full potential in education, and celebrating your successes. Just in case you missed anything, here’s a brief roundup of what we achieved.
Sunday: Record of Achievement launched
Our Record of Achievement gave you the opportunity to share your proudest achievement, and dispel the myths of what people with epilepsy can and can’t do. So far 71 people have shared their achievements. This includes:
- Sandra, the first female professor of space and astrophysics at Warwick University,
- Samuel who can play a note on his keyboard,
- Iain who has run four London Marathons,
- Shaun who managed to stay awake in school, and
- Jacqueline and Wayne who enabled social carers to administer the emergency seizure medication Buccal Midazolam (potentially saving lives).
We hope you enjoy reading all of the achievements (and you can still upload your own) at www.epilepsy.org.uk/achievement.
Monday: Epilepsy supplement in the Guardian.
This free 12-page epilepsy pull-out included features on education, employment, the ketogenic diet and an interview with Dai Greene. Missed it? Then why not download your copy of the guardian supplement
Tuesday: Release of Epilepsy Action’s educational survey findings - schools must do better and support pupils with epilepsy
If you were watching ITV1’s Day Break that morning, you may have seen our very own Leanne Creighton. She was talking about epilepsy in education, along with Susanna and her family. Leanne and several ‘media volunteers’ took part in interviews for 38 radio stations.
The survey was a major talking point in the press. We’d like to thank everyone who completed or promoted our education surveys, and everyone who kindly agreed to speak to the media about their epilepsy. The Education section of this newsletter tells you more about our surveys’ findings.
Thursday and Friday: The Edwards celebrating achievement in education
As is custom, Epilepsy Action celebrated the Edwards during National Epilepsy Week. These awards recognise nurseries, schools, colleges and academies that took positive action to enable pupils with epilepsy to flourish in their care. This includes providing support in learning and making the school environment a safe and friendly one. Leanne Creighton Education Policy and Campaigns Officer said, “The awards recognise educational providers which are providing a good supportive learning environment. We want to reward those establishments we believe are going that extra mile to make sure pupils or students with epilepsy have a good learning experience”.
In addition to our campaigns work, Epilepsy Action also held fundraising events and advice and information events across the UK.
Epilepsy Action’s professional resource pack for GPs
We’ve just launched a brand new resource for GPs and those working in primary care. The ‘primary care resource pack’ is a one-stop-shop for information and advice about epilepsy. It will help to improve understanding of epilepsy and make clear the support and advice that people with epilepsy need to successfully manage their condition.
Our pack is available online and in print and provides a range of tools, templates and resources for healthcare professionals working in primary care. It includes information on what support different patients need, for example offering women information on contraception and conception.
We worked closely with GPs to develop this resource, and we’re now in the process of promoting it across the UK. Please mention the new pack when you next visit your GP and encourage them to use the resources on offer. They can access the primary care resource pack by visiting www.epilepsy.org.uk/toolkit
The development of this pack was supported by an education grant from GlaxoSmithKline.
Take epilepsy action campaign
Monday 2 April: our washroom advertising campaign launched.
As part of the washroom campaign, a poster bearing our ACTION first aid information was displayed in men’s and women’s loos across England. The posters were displayed on the back of toilet doors and on the walls near and around wash basins. They appeared in 15 motorway service stations and ten shopping centres around the UK.
We chose to promote our first aid poster in washrooms. This was due to high footfall (an estimated 3.4 million people saw these posters) and washroom behaviour (you tend to be a captivated audience). The posters generated a lot of interest on Facebook and our website. During this four-week campaign our Take epilepsy action campaign pages were viewed by 426 unique visitors, and the QR code to take people to the poster and video was used 77 times.
Friday 4 May: Association of First Aiders Take epilepsy action
Epilepsy Action was invited to give a presentation on Take epilepsy action at the annual conference of the Association of First Aiders. This is the UK’s largest association dedicated to the promotion and training of first aid. They have thousands of members made up of independent first aid trainers, first aiders and those with a general interest in the subject.
Pete and Stacey gave a presentation to 250 first aid trainers. The presentation was very successful and has lead to requests for Action cards and posters from several first aid trainers.
Health and beauty sector Take epilepsy action
Habia is the government approved standards setting body for hair, beauty, nails and spa treatments. To support the Take epilepsy action campaign Habia published an article in its June issue of Habia News. This article included seizure first aid, and advice for therapists on how to treat people with epilepsy safely and fairly (in line with the Equality Act).
Epilepsy Action has also published a position statement on beauty therapy and cosmetic treatment. We hope that you receive advice from therapists who are epilepsy aware, and that the need to use this statement never occurs. But, if you find that your therapist is concerned about treating you due to your epilepsy, you might find it useful to give your therapist a copy of this statement. It will remind therapists about their legal obligations in relation to the Equality Act and Disability Discrimination Act when providing treatment. It will also give reassuring information about the safety of providing beauty therapy to people with epilepsy.
Summary of what Take epilepsy action has achieved so far:
- More than 15,000 wallet-sized ACTION cards have been given to members of the general public.
- Press coverage reached over 1.1 million people, through 83 pieces of coverage (a combination of TV, radio, print and not print mentions).
- We presented our campaign to 250 first aid trainers on the request of the National Association of First Aiders who had seen the campaign.
- Produced (in-house) a tailored Take epilepsy action first aid video for the Association of Chief Police Officers (ACPO) for officer training.
- In the month during and after the launches (20 September to 19 October) 421 new people liked our Facebook page.
- Up to 3.4 million people saw our washroom ad campaign (based on footfall).
- Our campaign web page was viewed over 4,000 times in the two weeks around the launch events.
- Our Take epilepsy action campaign videos were viewed over 24,000 times (as at 3 May 2012).
Education campaign
Education surveys
We conducted two surveys at the beginning of this year to identify what the support for children and young people in education is like. Below are a few of the findings which we will continue to tackle in our work.
The parents…
Parents generally feel schools should understand epilepsy and that staff should receive epilepsy training, about epilepsy generally as well as administration of emergency medication. Over half (fifty four per cent) of parents told us they had been fully involved in discussions with school for the support for their child. However only a third (34 per cent) felt that the school was doing everything it could. Parents identified the key issues within education as lack of training for school staff and poor communications. Many parents said they felt these issues were impacting on their child’s ability to fully participate in school.
The teachers...
Just under half (41 per cent) of teachers believe that pupils with epilepsy are not achieving in line with their other pupils. Almost two thirds of respondents said that all children with epilepsy at their school have an individual healthcare plan. However, almost a fifth (16.8 per cent) said no pupils had a care plan or that they didn’t know if pupils with epilepsy had a care plan. Less than half of respondents (49 per cent) said that all pupils with epilepsy had an individual education plan. Currently, just over half of the teacher respondents said that most or some pupils with epilepsy in their school were regularly absent as a result of their epilepsy. To add to this, almost half of respondents said children with epilepsy were unable to fully participate in lessons (43.9 per cent), and that they missed school due to seizures (42.6 per cent) and appointments related to epilepsy (34.2 per cent). Parental over-protection (11 per cent) and lack of school support (5.8 per cent) were also seen as potential barriers for pupils with epilepsy.
All of these factors make it more difficult for pupils with epilepsy to enjoy and achieve in their education.
Getting results for pupils with epilepsy in Westminster
I spoke recently at an event in Westminster with Valerie Vaz MP and Sam Gyimah MP, organised by the Joint Epilepsy Council (JEC). The event gathered those working in the education sector to talk about the barriers pupils with epilepsy may experience at school. With other organisations we looked at the barriers such as missing lessons due to seizures, ways that these barriers and The event was attended by over 30 professionals.
Leanne
Women’s campaigns
An ideal world for women
Epilepsy Action’s survey An ideal world for women will open on 16 July 2012. We need as many women as possible to take part in the survey, so please spread the word about the survey to every woman with epilepsy you know. An ideal world for women is held every five years and the results are vital to our women’s strategy.
People can take part in the survey by completing a paper copy, or online version. If you complete the survey online, it will automatically take out irrelevant questions. This will reduce the time it takes you to complete the survey, and reduce costs to Epilepsy Action.
The results of the survey will reveal how women’s healthcare experiences have changed in the last five years and identify where health services still need to improve. It also gives Epilepsy Action the support to campaign on behalf of women with epilepsy. Statistics from our surveys are used in Epilepsy Action’s official responses to various health and welfare consultations.
Finally, I’d just like to say a huge thank you to Lucy, Vicki, Anthony, Alison, Alex, Caroline, Cate and Rebecca for responding to our request to help us plan our women’s survey and next campaign. Your feedback was extremely useful and both of our surveys (including the patient survey I cheekily threw in) have been adjusted in response to your comments.
It is so important to work with our campaigners at the very start of our campaigns as well as at launch time. It ensures that our campaigns meet your needs and are engaging and interesting. Thank you, and I’ll be in touch with further details soon.
APPG on epilepsy 28 February 2012 - Automatic enrolment of women taking AEDs in the UK epilepsy and pregnancy register
Drs Jim Morrow and John Craig were invited to the recent All-Party Parliamentary Group (APPG) on epilepsy to speak about the UK Epilepsy and Pregnancy Register. The presentation made the request for it to be compulsory for health professionals to tell women about the registers when they are planning pregnancies and at the start of pregnancy.
It wasn’t compulsory for women to be signed up to the register, but it was compulsory for women to be given information about the register and to choose whether or not to join the register. Currently about 25 per cent (a quarter) of women with epilepsy who become pregnant tell the register of their pregnancy. Women can register their pregnancy by contacting the register themselves at www.epilepsyandpregnancy.co.uk . They can also give permission for their doctor or midwife to contact the register on their behalf. While 25 per cent is good - it means that three in every four pregnant women don’t join the register. That might be down to choice or because they haven’t been told about the register or have been told too late in their pregnancies to join.
A very promising finding shared with the APPG was that the overall rate of major congenital malformation (MCM) following exposure to any Anti-Epileptic Drug (AED) is dropping. In their opinion this could save the NHS an estimated £3-4 million each year in care costs. The reason put forward for the total drop in number of babies born with an MCM is education. Health professionals are working with women before they conceive to reduce the risk of MCMs should they become pregnant. Dr Morrow highlighted a fall in the number of women conceiving while taking sodium valproate.
Dr Morrow suggested that if more women register their pregnancies each year, the register can provide more details about the risks of taking AED’s during pregnancy within a shorter timescale. Dr Craig pointed out that thousands of pregnancies are needed before they can comment on the risk of malformations in an unborn baby, exposed to a named drug in pregnancy. For example the researchers can confidently comment on the risks associated with sodium valproate, carbamazepine and lamotrigine as they have worked with many mums who have taken these drugs. However with newer drugs, for example retigabine, the register they cannot comment on its safety. This is because too few women have taken newer drugs in pregnancy and registered their pregnancy.
The presentation made me think about what else we as campaigners can do to support the UK Epilepsy and Pregnancy Register. Epilepsy Action and the staff at the pregnancy register would never pressurise women into joining the register. Whether or not to take part is an individual choice. Our role is to increase awareness of the register among women and health professionals.
Epilepsy Action makes sure that the UK epilepsy and pregnancy register is promoted in all of our advice and information materials on pregnancy. Information about the register is included in our resources for GPs and obstetricians too. However, we need to reach women who haven’t been told about the register, and who might not be members of Epilepsy Action.
Nicole
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