What is a regional conference?

The Epilepsy Action regional conferences provide an opportunity for people with epilepsy and their families to update themselves on the latest developments.

The conferences also provide an opportunity to meet other people with the condition, to meet and talk to Epilepsy Action staff, branch members and the possibility of speaking to an expert (nurse or consultant for example). Lunch and refreshments are provided and there is access to free literature about many aspects of epilepsy.

• Upcoming conference dates

To give you a flavour of the conferences, we have a report by Epilepsy Action's Ingrid Burns, on the Scarborough conference held in November 2004, organised by Sue Blake (National Manager, Regional Services) and Annie Thompson (Regional Services Manager, North).

I attended the conference primarily to brush up on my knowledge of epilepsy, but came away with a feeling of having been touched by the experiences of the delegates and speakers. The title of the conference was ‘Epilepsy: Making Choices’ and in light of the recent NICE guideline for the diagnosis and management of epilepsy, it proved a timely reminder that up-to-date clear information is essential if people with epilepsy are to be empowered to manage their own condition.

On the day of the conference, I made the train journey over from Leeds bright and early, accompanied by a colleague who was also a conference first-timer. We arrived at the venue, the Ambassador Hotel on the Esplanade in Scarborough, just after 8.30am and were greeted by the magnificent sight of the sea glittering in the early morning sunshine.

Upon entering the hotel we discovered a hive of activity, as our colleagues, local Epilepsy Action branch members and volunteers were already hard at work setting the registration desk up and welcoming enthusiastic early arrivals! The advice and information stand and displays from the membership and fundraising departments of Epilepsy Action were already on display downstairs in the main conference hall, and the hotel staff were busy preparing tea, coffee and delicious looking biscuits.

My first task of the day was to register the arrival of delegates and speakers. Although registration was scheduled to begin at 9.30am, by the time I arrived a number of people were already milling around the lounge area where the registration desk was set up. There was a friendly and informal atmosphere as many people relaxed, enjoying the refreshments available, and catching up with old friends. Others wandered around the hotel, discovering the superb indoor pool and spacious conference room where they could view the various Epilepsy Action displays at their own leisure.

It surprised me how many names I recognised on the delegate list from my three months of working at Epilepsy Action and I spent an enjoyable but busy hour meeting and greeting nearly 100 delegates and finally putting faces to names! It was nice to see the interest shown by people staying at the hotel who came over to the desk to ask about the organisation and the type of event that was taking place. The collection tin was soon rattling healthily!

At 9:45am people started to move downstairs to the conference room for the first of the day’s presentations. The set up here was eye-catching, but still managed to retain an informality that typified the day for me. Tiered rows of seats faced a ground-level clearing with a speakers table flanked by two large screens upon which could be projected the PowerPoint slides of the speakers. An Epilepsy Action information banner took centre stage behind the speakers.

The proceedings started with a warm welcome from Sue Blake, who paid tribute to the generous support of Kirsty Morgan’s family, Flaxton Trust (Scarborough), Epilepsy Action’s Hull Branch and the Royal Order of Buffalos (Withersea) for supporting the event. Sue went onto introduce Annie Thompson, chairperson for the day.

The first speaker was Richard Brown, Epilepsy Action deputy epilepsy services manager, who was thrust into the limelight after only attending his first conference in April 2004. Richard’s presentation, ‘Here to Help – Epilepsy Action – YOUR Organisation’ introduced new members to Epilepsy Action and detailed how we provide support and information to people living with epilepsy, their families and carers.

This may sound simple but is in fact no mean feat: Richard covered our advice and information services, the website and newsletter, Epilepsy Today and Bubble, our professional and lay conferences, the nine new Epilepsy Action accredited volunteers recruited this year, the Sapphire Scheme through which 70 nursing posts have been funded so far, and the branches. He then moved onto our awareness-raising work, involving research, prizes, bursaries, and including our work with the government, the pharmaceutical industry and the public sector – phew!!

Special mention was made of our new information services officer appointed with a grant from the Big Lottery Fund (the lottery to you and me), and the appointment of an education officer to address the needs of students with epilepsy at all stages of the education process. Having worked at Epilepsy Action for a couple of months, I am well aware of the sheer amount of vital work undertaken by the organisation, but I was still impressed by the diverse and numerous ways in which the organisation works tirelessly on behalf of people with epilepsy. Richard wound up his presentation with a look at the different ways in which people can support us – ranging from writing to your MP to climbing Ben Nevis!

Following Richard was Carol Ogden, Sapphire Nurse at Hull Royal Infirmary, who spoke about the ‘Role of the Epilepsy Specialist Nurse’.

Carol defined the role of the epilepsy specialist nurse (ESNs) as providing an additional link between patient, consultant and GP. Once again, I was surprised by the range of their work, from conducting nurse-led clinics, to developing care protocols, to monitoring and adapting drug changes. Given that consultants have 15-20 minutes for a new referral and 10 minutes for a follow-up, and GPs have between five and seven minutes per patient per year, whereas ESNs have the luxury of 30 minute appointments at nurse-led clinics, it’s not difficult to see why ESNs are proving to be an invaluable resource for people with epilepsy.

Carol was listened to with much interest and enthusiasm, and then it was the turn of Brian Chappell, national manager of Neuro Education, to stress the ‘Power of Information and Knowledge’.

In his presentation, Brian picked up on the ‘Making Choices’ theme and highlighted how the launch of the NICE Guideline is addressing the reluctance of the NHS to provide information. The NICE Guideline stresses the importance of people being fully involved with their specialist and GP, as a partner in all decisions about their condition. One thing that really stood out for me was the importance of exploring all avenues and attempting to obtain as much information as possible, in many different formats and from a variety of sources. Brian illustrated his presentation with details of some of the best information sources, including web links, and these quickly proved to be one of the highlights of the day as a stampede of people, keen to make sure they had taken the details down correctly, ensued at the next break!

Brian concluded his presentation with a quote from a mother who had successfully taken a Vocational Certificate in Epilepsy:

'When I visit my daughter’s clinic I now feel I can discuss her epilepsy on equal terms with the consultant.'

This acted as a forceful reminder of how important knowledge is in giving people the confidence and power to move forward independently and positively. All in all, Brian’s presentation was a constructive reminder that people with epilepsy can live an active and healthy life – a perfect note upon which to take a well-deserved comfort break!

Once everyone had returned to their seats, Ian Walker, chair of Epilepsy Action’s Conwy and district Branch, began his presentation on 'Running a Branch in a Tourist Resort and the Epilepsy Awareness Roadshow'.

Ian’s technical background quickly became apparent as a beautiful picture of the Conwy landscape took centre stage, followed by visually appealing slides outlining the what, where and who of Conwy branch. Ian made a very thought provoking point about Conwy being one of the poorest regions of Europe with an economy that booms from March to September but goes into recession from September to March. The challenge for Ian and his team is to seek out activities or events through which they can fundraise during the lean months!

The sheer numbers involved in the organisation of Ian’s Epilepsy Awareness Roadshow would astound even the most seasoned event organiser. During 2003/2004 about 90 tonnes of equipment was transported nearly 3,000 miles and around 4,000 man-hours of voluntary work were undertaken (with members of the ‘Roadshow Team’ even sleeping on the stand)! Even more amazing are the achievements of this dedicated team of volunteers, as they attracted an estimated 2,750 visitors to their stands and events. Conwy’s Branch of the Year Award 2003 was undoubtedly well-deserved!

Next came an opportunity for the delegates to ask questions of the panel. This was taken full advantage of and the questions and comments put forward were wide ranging in their scope and handled well by the panel members. The topics covered were:

• Brian Chappell was asked for more information about the Vocation Certificate in Epilepsy run by Leeds Metropolitan University. Brian confirmed that each application is carefully considered. Although the work can be challenging, it is also very rewarding. As it is a distance learning course, most of the work can be done in your own front room, but there is an opportunity to meet the tutors at a workshop.

• A question to Carol Ogden highlighted the way in which Sapphire Nurses work in conjunction with NHS nurses and the fact that Epilepsy Action usually funds Sapphire Nurse posts for the first year. After the first year, the individual Primary Care Trust (PCT) is required to take over funding for the post.

• Interest in the formation of a Scarborough branch was shown and Annie Thompson informed delegates that four people have already registered their interest, so a branch will be up and running in the New Year.

• The carer of a young man with epilepsy enquired about whether any research has been done into the ability of dogs to recognise seizures. The panel were not aware of any published research into this subject, only anecdotal evidence. Details of Support Dogs, a Sheffield-based charity, and Epilepsy Action’s factsheet on seizure alert dogs were passed on.

• The topic swung back to Epilepsy Sapphire Nurses as Carol Ogden was asked whether ESNs are available nationally. She answered that ESNs are available on a national basis, but that Epilepsy Action negotiates with each PCT on an individual basis to secure their posts. Epilepsy Action provides lobbying packs for people interested in lobbying for a nurse in their area.

• A mother with epilepsy spoke about her experiences of being cared for by her young children and asked if there is any help available for young carers. Her attention was brought to Epilepsy Action leaflets on the topic. Carol Ogden mentioned support networks for children who are carers in Hull and suggested that our accredited volunteers could also provide support.

Once the questions and answers had been exhausted, it was time to break for lunch. At this point I thought that things would calm down and that I might get a short break myself. Not a bit of it! People were keen to chat about the morning sessions and the Advice and Information stand was busy, as it had been at the mid-morning break. Delegates took the opportunity to stock up on the latest information on memory problems associated with epilepsy, epilepsy treatments, living with difficult to control epilepsy, and new to epilepsy in later life. A huge amount of information was distributed - what we didn’t have on the day could easily be obtained through our Freephone Helpline.

Sometime during this rush I managed to grab some delicious food and was just going back for seconds when I realised the hour lunch break had flown by and it was time for us to return to our seats for the afternoon session.

Once everybody had settled back down and were resisting the temptation to have forty winks after enjoying the scrumptious spread, Maureen Lahiff from Epilepsy Bereaved began her address on ‘Epilepsy – Unexplained Death’.

Maureen’s presentation was very different to Ian’s, in that she used PowerPoint simply to show evocative pictures and underline simple but powerful messages, yet her presentation was incredibly moving and roused everyone out of their early afternoon stupor! Positive messages about the outlook for people with epilepsy flowed through Maureen’s presentation. She addressed the potential risks of seizures and the facts of Sudden Unexpected Death in Epilepsy (SUDEP) in a practical and down to earth manner, despite having lost her own son, David, to SUDEP. The ‘Making Choices’ theme was reprised in the emphasis on recognising that all risks are individual and that lifestyle choices can have an impact on risk level. The audience was visibly moved by quotes from bereaved families used by Maureen to illustrate need for improved services. For example:

'I didn’t know he had stopped taking his medication until after he had died…the last medication was well over a year before…they should have kept a check on him and made sure he was on medication.'

I was left with an overwhelming sense of how epilepsy does not just affect the life of the person with the condition, but the lives of their family and friends, making it vital to ensure that the information and education needs of all those concerned are met. Although epilepsy can be a very isolating condition, people with epilepsy rarely live in isolation. By helping people to share their experiences and knowledge, we can empower people to make the right decisions.

Following directly on from Maureen was Sally Gomersal, Epilepsy Awareness, with a presentation on ‘Your Influence in Epilepsy Services’. Without use of visual aids, Sally managed to captivate the audience by going back to the roots of epilepsy and reminding her audience about the history of epilepsy and of the leading epilepsy charities and organisations.

Moving onto a more personal note, Sally recounted her own experiences with the condition. From being diagnosed at only 15 months old and her feelings of isolation at school, to eventually wandering onto a train line during a seizure as a result of sheer exhaustion from mounting work and health problems. Sally was eventually told that she would not reach her 40th birthday unless her seizures could be stopped.

Better control of her seizures was eventually gained when she was referred to the National Society for Epilepsy assessment unit and an MRI scan revealed damage to her right temporal lobe caused by a prolonged febrile convulsion as a baby. It is a tribute to Sally’s own determination and perseverance, and to the support she received from epilepsy organisations after the brain surgery which finally stopped her seizures, that she was able to stand in front of us at the tender age of 42 and deliver her presentation!

Before we knew it, it was time for another comfort break, after which Dr Henry Smithson burst onto the stage, with a lively, professional, and most of all, highly entertaining presentation. Whilst much of the information outlined on Dr Smithson’s PowerPoint slides was complex and technical, Dr Smithson remained firmly focussed on the human aspects to epilepsy and delivered his material with humour and understanding. The strong relationship that can be built between patient and GP really shone through - indeed friendly heckling from Dr Smithson’s own patients amongst the audience demonstrated the kind of relationship that can be nurtured. Dr Smithson successfully demonstrated how much can be achieved by establishing respect and mutual understanding between patient and GP.
Another opportunity for delegates to ask questions followed:

• The first question asked was how to persuade your consultant to listen/talk to you and arrange a follow-up review. The problem of communicating with your healthcare professional is one that often crops up and Dr Smithson suggested asking your GP or ESN to write a letter to your consultant raising any issues that concern you. Patients can also now make use of the NICE Guideline, which sets out clear recommendations for the treatment and management of epilepsy.

• A lady had a question about the results of her EEG scan, which the health care professionals present were unable to comment specifically on, but she was advised to raise any questions or concerns with her consultant at the earliest opportunity.

Following this, the session turned into a free for all with delegates chatting freely with each other and the speakers. As I listened to the chatter around me, I was again impressed by the enthusiasm, depth of knowledge and understanding displayed.

Finally, Sue Blake and Annie Thompson called time on the proceedings. The speakers were thanked and presented with small gifts. The volunteers and staff of Epilepsy Action were praised for the level of commitment and sheer hard work that had gone into the conference. And of course thanks were delivered to the Ambassador Hotel, as the hospitality shown by the staff was excellent and much appreciated throughout the day, by delegates and conference workers alike.

To round off a fantastic day, Annie made the announcement that due to a high level of interest shown in the creation of a Scarborough branch by delegates, the first meeting of the branch has been confirmed - 10 January 2005 – good news for Scarborough!

At the end of the day, as the hotel staff were clearing away the discarded cups and glasses, we began talking to one of the staff who told us that the organisation would soon have a new member. It turned out that his mother had lived with epilepsy for many years, but had died recently. He was obviously moved by what he had heard throughout the day and seemed sad that his family had not had access to this kind of information or to vital support networks while his mother was alive. His story really struck a cord and at the end of an enjoyable and busy day, he reminded us of the difference such events can make to people’s lives.

After helping my colleagues and the hotel staff clear up, I started my journey back to Leeds. Looking back on the day now, the impressions that really stick with me are of how professional yet approachable the speakers were. The focus was very firmly on people’s real experiences with epilepsy and just meeting the delegates and hearing their stories forcibly reminded me that epilepsy is an incredibly complex condition. Although everyone’s experience differs, what unites people whose lives have been touched by the condition is their spirit and tenacity. I discovered that regional conferences are overwhelmingly positive occasions, which can raise vital awareness and contribute significantly to the well-being and quality of life of those involved.

I would like to say a big thank you to everyone involved as facilitator, speaker, or delegate – I feel privileged to have been involved in such an informative, fun and inspiring event, and look forward to the next one.

Ingrid Burns, Epilepsy Action

November 2004