David, aged six, had just come in from a walk in the beautiful countryside around St Piers, the national centre for educating children and young people with epilepsy or other special needs in Lingfield, Surrey. He suddenly slouched against a wall, seemingly unconscious, but soon recovered and carried on taking off his jacket. He fell down again only to get up a few seconds later and begin again. This sequence was repeated three times in the next five minutes.
David has severe epilepsy: 400 seizures a day is not unusual for him, which means that he spends his life in a state of continuous interruption. Epilepsy is a condition often seen as a matter of a few "fits" now and again, and for some people this is the case, but for around 15,000 of the 75,000 children and young people with the condition in the UK it can be life shattering. David was exhibiting one type of seizure. Other sufferers have up to 4,000 seizures a day, during which consciousness clicks off for a second or less. Some have even more dramatic seizures. Epilepsy affects all aspects of their lives and can encompass behavioural, educational, cognitive and physical disability.
Up to 225 young people with very severe epilepsy, aged between five and 19, attend St Piers residential school and further education centre, receiving a full curriculum and engaging in a huge range of activities, including abseiling, riding and swimming.
Recognised as the most important residential service for these children in the country, with experience accumulated over 100 years, St Piers opened its national assessment service in 1998 jointly with London's Great Ormond Street Hospital for Children. Youngsters come from all over the UK, and sometimes beyond, to be seen by a multi-disciplinary medical team including psychologists, physiotherapists and specialist teachers and nurses. They stay for three days to six weeks for assessments which yield detailed diagnostic information and recommendations, including advice on the balance of medication.
The national assessment service is at the forefront of research into methods of diagnosing and controlling epilepsy. The good news for David is that there is a fair chace that his seizures can be brought under control. But what happens after the assessment? Epilepsy might be the world's most common severe neurological condition but it is probably also the least understood. The question St Piers has been asking itself is: how can they give local services, including schools, the understanding of severe epilepsy and its impact on all aspects of development that is necessary to enable them to support these children?
Last October the charity received a two-year Lottery grant of pound;172,799 to set up a research project which will look at how 40 children, who have all been assessed at St Piers, can be supported in their local communities. This pilot scheme will provide expert staff to liaise with families, teachers, nurses and others.
"The only way it will work is if real teamwork takes place in the local community and everyone understands what is needed to keep that child supported," says St Piers's chief executive, Bob Haughton. "The results will be monitored, assessed and published and we hope it will demonstrate how the specialised skills which organisations like St Piers have can be properly exported to support children in their local communities.
"The project is intended to create the model for a new service which we hope local authorities across the country will be able to use."
Also launched at St Piers last year was an epilepsy resource centre financed by a grant from the European Social Fund. It will provide information and organise study days and workshops for groups with an interest in epilepsy. "There is a great need for information among parents, carers, professionals and employers," says Mr Haughton. "We feel the resource centre will play a role in dispelling ignorance and misunderstanding about this very widespread condition."
St Piers continues to improve the quality of life of those in its residential school, providing them with a full education and a full life. This spring it is opening a purpose-built FE college in its grounds with better equipment and facilities. But the school is now also entering another phase in its history, one in which it hopes to improve the quality of life of young people with epilepsy in the wider community.
St Piers stand SN51 - Tel 01342 832243, www.stpiers.org.uk