Epilepsy weekend for all

In Epilepsy Action’s local services department, part of our work is getting out there into the community. We come up with a whole range of events designed to bring people with epilepsy together. Our events are very successful and we know that the people who attend them are pleased with how well they go. But sometimes a one-day event just isn’t long enough!

I am organising a weekend event in London. At this event, I want to give people time to hear from professionals and ask all their questions. I want to offer an unhurried and relaxed atmosphere, where people with epilepsy can make their own networks and contacts for the future.

If you’d like to stay for two days, you will have plenty of time to hear speakers, ask questions and absorb information. Several organisations – including Epilepsy Action – will be exhibiting. You may want to get benefits advice from an advisor from the Department for Work and Pensions.You can spend time meeting doctors, epilepsy nurses and other interested professionals. You may prefer to meet other young people, or their family members.

The event will happen at Baden Powell House in central London between the evening of Friday 9 and the afternoon of Sunday 11 November this year. The venue is directly opposite the Natural History Museum. Just around the corner is Gloucester Road tube station – offering a very central venue with excellent transport links. People can attend on one or both days, stay overnight or travel daily – as long as you book in advance for one or two nights.

Accommodation (pictured) is hostel-style and is situated in the venue itself. Modern four- and six-bed rooms are available – each with their own bathroom pod. These rooms are perfect for families who would like to share a room. Young people (over 18) are also welcome. They may not otherwise have thought they would be able to go hostelling – but this may give them the confidence to do so!

The venue features a large room for conference presentations. There is a comfortable common room with sofas, football and pool tables, and computers with internet access. Several rooms on the upper floors offer break-out spaces for different workshops and discussion groups. There is also a lovely roof terrace with a table tennis table and room in the reception area to mingle and chat.

A flavour of fun

Friday evening will be a relaxed time for people to arrive. They will have plenty of time to get to know the venue and to meet each other.

On Saturday morning, there will be a range of very informative presentations, followed by a series of workshops during the afternoon. On Saturday evening, entertainment will take place in the large room – or, if you’d prefer, you can take some time to relax and chat elsewhere.

Sunday morning will see a great interactive question and answer session, followed by several more workshops and discussion groups. Finally, you will all eat a delicious lunch, before the event finishes at around 3.00pm.

I hope people will leave the event feeling well informed, but also listened to. People may have made friends for life. They may have discovered a clear vision and achievable hopes for the future. In particular, I hope to attract many young people with epilepsy and their brothers and sisters. Many parents tell us that their son or daughter rarely meets other young people who are living with the condition. This event is open to anyone with an interest in epilepsy whatever age or circumstance. If you are successful and flourishing – come and tell us and encourage others. If you are struggling and want help with your epilepsy – come and ask your questions and find out what Epilepsy Action can do for you.

I am also hoping to attract many professionals in the epilepsy field who are prepared to share their time and knowledge. Presentations will be informal and as interactive as possible. The professionals will welcome the opportunity to listen to people with epilepsy and their families.

There will be an exhibition of photos of and by people with epilepsy. This will help everyone who sees them understand more about living with the condition. We want to celebrate the skills and experience of people with epilepsy!

Things to make and do

So far, ideas for workshops include the following (these may be subject to change).

• Epilepsy and pregnancy
• Teenagers – managing your own epilepsy
• Brothers and sisters sharing their experiences of epilepsy
• Education and epilepsy
• Social networking and information
• Being a parent of a child with epilepsy
• Epilepsy and teenagers for parents, carers and professionals
• Hopes for the future – the diagnosis and treatment of epilepsy
• Hopes and future achievements – what can we look forward to
• Women and epilepsy
• Adults with epilepsy discussing relationships
• Memory and epilepsy
• Local branches and networks
• What do you want from Epilepsy Action in the future?
• What is the best way for us to tell you about activities and events?

It may also be possible to include some other activities in the weekend event. These might include relaxation and massage. We are thinking about running some craft workshops – so that people can make things while talking about the issues they are dealing with. We may even try some work on epilepsy and the arts – sharing skills in music, poetry and art!

I really want to attract whole families to the event. That would allow full and frank discussion among each other and with professionals. To help with this, I hope to have entertainment for young children. This will keep them amused, while also allowing them to explore life with epilepsy and what it means for them and their brothers and sisters. I hope they might be prepared to do a ‘show and tell’ of their work on the Sunday – and let us all hear what they have discussed.

As you can see, this is an ambitious project. It can only be achieved with the help and cooperation of volunteers from Epilepsy Action – and from professionals willing to give their time and skills.

What can you do to help?

I need the following people who are willing to offer their time, whether it’s a day, half a day or even the whole weekend.

• Medical professionals – including neurologists, nurses, psychologists, occupational and physiotherapists, GPs and pharmacists.
• Relaxation and massage therapists.
• Craft workers and entertainers.
• Youth workers.
• People with epilepsy willing to share their experiences.
• Volunteers to look after our delegates and professionals.
• People who can run interactive presentations on epilepsy or can facilitate workshops.
• Fundraisers to help us meet the costs of the event – so that we can keep charges down.
• People to meet and greet – helping make guests feel welcome!
• People who can chat to – and listen to – people with epilepsy of all ages. This may be supporting parents and carers or inspiring young people with the condition.
• Develop networks for keeping in touch in the future.
• People who can demonstrate how to get the best from websites.

My thanks go to Epilepsy Action North London branch who have already committed £4,000 towards this exciting venture. I’d also like to thank the professionals who have already agreed to give their time and skills. Everyone has something to offer no matter what their skills. To find out how you can get involved or to attend the event, contact the local services team on +44 (0)113 210 8800. You book a place at the Weekend For All by completing a booking form in our online shop.