Quarriers' Epilepsy Awareness & First Aid Training Project
The journey through adolescence can become intolerable for children with epilepsy, according to Quarriers' epilepsy fieldworker Helen MacDonald who is working to bridge the gap in specialised support services for young people with the condition in Lanarkshire.
The stigma associated with epilepsy combined with the constant fear of the next seizure causes acute anxiety and makes depression more common in this group than with any other chronic disorder. Suicide is also five times higher than the general population and twenty five times higher in cases of temporal lobe epilepsy.
Scotland's leading care charity, which ranks support for people with epilepsy as one of its core services, has plans for two innovative services for children and young people with epilepsy in Lanarkshire where preliminary investigations have established a need for extra support.
Quarriers' Epilepsy Awareness and First Aid Training Project, run in partnership with Lanarkshire Council and funded by the Roald Dahl Trust, provides basic training for 200 teachers and 3,200 children in nine local schools, since August 2003 when the project launched, over 1600 pupils and 80 teachers have been reached. The purpose is to raise awareness and develop more positive attitudes to youngsters with epilepsy.
By tackling misconceptions of staff and pupils, the project aims to reduce stigma allowing children to develop their potential as confident young men and women. It should also improve education attainment in the longer term, reducing the number of adults experiencing unemployment and poverty.
Helen MacDonald, Quarriers Epilepsy Fieldworker, said: "Despite epilepsy's low profile, prevalence rates are very high with one child in one hundred experiencing any of 40 different types of epileptic seizures. Eighty per cent of those with the condition attend mainstream schools where many underachieve leaving with fewer qualifications than their peers. While neurological factors can affect learning, the attitude of others can be more wearing than the condition itself. Sufferers try to hide it and this contributes to social isolation, low self esteem and lack of skills.
"Even though many children will know someone who has epilepsy, the condition is not well understood and the unknown is frightening. Teaching them about epilepsy helps them deal with their fears. Bullying often comes out of fear so the importance of raising awareness can't be underestimated."
Educational underachievement is understood to be a major cause of the unacceptable levels of unemployment and poverty among adults with epilepsy. Sufferers are three times more likely to be unemployed and in poverty than the general population. The indirect costs of epilepsy to the UK in terms of unemployment and social services are estimated to be £1.93 billion every year and direct costs in terms of health services are said to be £600 million*.
One in three children experience difficulties in school with other children and a quarter experience difficulties with teachers because of their condition**. Quarriers' Epilepsy Awareness and First Aid Training Project will give first and second year classes awareness training and increase their first aid abilities. Children will be asked about their perceptions of epilepsy, then informed of the realities of living with the condition as well as first aid techniques so they could assist someone having a seizure.
Helen estimates that there could be approximately 80 children with epilepsy in the nine Lanarkshire schools in the pilot project and that this will generate referrals, identifying children who may well have a need for extra support such as advice and counselling through Quarriers Epilepsy Fieldwork Service.
She continued: "Some children have had to leave mainstream education simply because the school does not have the training or understanding of epilepsy required to support them. Few teachers receive even basic in-service training in the needs of children experiencing a seizure so children are often rushed to hospital. This can disrupt their schooling for several days whereas what they may really only need is to lie down for a short period.
"This project will make teachers better aware of the particular needs of children with epilepsy. It'll help them understand what it's like to live with the ever present threat of loosing control through a seizure and the importance of building children's self confidence and self esteem. Parents will be re-assured of their child's safety while in the school's care."
Quarriers' Telephone Helpline
Young people with epilepsy face exceptional difficulties during the period of transition to adulthood when often communication with their families about their condition breaks down. Helen said: "In some cases they have only recently been diagnosed with the condition and don't feel they can talk about it even to those closest to them. This is where a specialised Telephone Helpline can help."
Quarriers' recently launched an Epilepsy Helpline funded by the Lottery Community Fund, initially as a pilot project. The service is available to people in the North and South Lanarkshire areas and promoted via schools, health and youth services.
The aim is to support 250 young people although it is anticipated that parents, siblings and friends of the young people with epilepsy will also contact the centre. The helpline will be operated by 10 - 12 volunteers aged between 16 and 30 along with one full-time development worker. The volunteers may have epilepsy themselves or perhaps a close relative or friend with the condition.
Helen said: "The purpose is to reach isolated young epilepsy sufferers, helping them develop their social network and access the services they need. There is only one epilepsy helpline in Scotland but this is not specifically for young people.
"Young people face different social issues. They want the acceptance of their peers but face various degrees of stigma. They also want independence but often have to cope with the over protectiveness of parents. What they need is someone to talk to who has personal experience of what they are going through and we believe a telephone helpline is a great way to reach them."
Quarriers' Memory Awareness Training
Feedback from another of Quarriers services, Quarriers' Memory Awareness Training which ran for the first time in Lanarkshire in February 2003, suggests there is a real need for training for professionals who work with those experiencing the social impact of memory loss, including people with epilepsy.
Dr Julia Clark, Quarriers' clinical neuropsychologist, explained that the extent of memory problems may be underestimated by professionals as it is common practice to compare a person's memory to a population average rather than their own personal best.
She said: "For instance if someone who used to have an exceptionally good memory suffers memory difficulties they may still have an average memory but it will not be working in a normal way. Remembering will be much harder work. It'll cause anxiety and result in loss of self-esteem.
"The more resourceful someone is, the more able they are to hide a memory problem by using strategies and memory aids. They may 'function' as well as before but it is at a cost. They will be more tired, and irritable and they may wish to stick to a rigid schedule or timetable in order to ease the burden on their memory."
People with epilepsy have a greater challenge to overcome because they often have additional intermittent difficulties, for example with attention and concentration. If they have seizures, they are likely to have temporary problems with memory storage and retrieval.
Dr Clark concluded: "Poor memory has a social impact on relationships, education and work. In order to treat the problem successfully we need to make the people the patient mixes with every day aware of the effects. This training is therefore also suitable for sufferers, their relatives, colleagues and carers."
Hunter House, Quarriers Village, Bridge of Weir
Hunter House is the only residential epilepsy assessment centre in Scotland, offering all the facilities of a medical unit in a relaxed and comfortable atmosphere. The 12-bedded unit based in Quarriers Village offers:
- Residential assessment (for 2 to 8 weeks) of complex epilepsy using the latest EEG (Electro-Encephalogram) and video telemetry technology
- Care from trained nurses, counsellors and social workers
- Respite care for people with severe epilepsy.
ENDS
Notes to editor:
*/**: Statistics from The British Epilepsy Association.
Case study attached. Further case studies are available on request.
The provision of support to people with epilepsy has been a core activity of Quarriers since the 1960s. The charity runs Scotland's only residential epilepsy assessment centre, Hunter House in Renfrewshire, which receives the most complex cases in the country referred by health boards, GPs and neurologists. While its Epilepsy Fieldwork Service operates across the north east of Scotland and in the Glasgow area, ensuring that care is co-ordinated for those living locally.
FAST FACTS
- Epilepsy is a condition where an individual has recurrent seizures, due to a disturbance in the electrical charges that travel from the brain to the rest of the body
- 1 in 200 people in the UK have epilepsy. The figure for Grampian exactly matches the national average
- 1 in 20 people will have a single seizure at some time in their life, which may be the result of a head injury, or a lack of oxygen, and may not develop into epilepsy
- Epilepsy can have been present since birth, can be caused in later life due to an injury, infection, abnormality in the brain or various other reasons still not fully understood
- Epilepsy affects people of both sexes and all ages
- 75% of people in the UK who have epilepsy are able to control their seizures with medication
The symptoms if epilepsy are characterised by sudden, recurring seizures (sometimes known as fits), originating in electrical activity in the brain. These seizures range from 'absences' (brief lapses of awareness) to 'tonic clonic' or convulsive seizures with loss of consciousness and powerful muscle spasms. Though perceived as a medical condition, the social, emotional and psychological effects of epilepsy can be devastating, leading directly to levels of disadvantage which are severe, long term and difficult to manage.
Despite the low profile epilepsy receives, prevalence rates are very high indeed with 1 child in every 100 experiencing epileptic seizures, making this condition the most common serious neurological condition in the UK today. It is 10 times more prevalent than multiple sclerosis and 100 times more prevalent than motor neurone disease.
In 1990, the cost to the health service for each person with epilepsy was £600 in the year that epilepsy was diagnosed and £200 in subsequent years. However, due to the far-reaching psychological and social consequences, the cost to social services over the same period was five to ten times higher.
This information and further details from Jane Smith, The Business
T: 0131 718 6022.
M: 07780 666 136
E: janes@thebusinesspr.co.uk
Quarriers' Case Study
'Stacy'
Stacy contracted viral encephalitis when she was fifteen. The virus, which causes inflammation of the brain, can provoke seizures in the early stages. As they recover from encephalitis, some people have no further seizures and others can go on to develop epilepsy. In Stacy's case the virus left her with epilepsy and short-term memory difficulties.
Now 21, Stacy is able to lead a relatively healthy and independent life. She attends Aberdeen College, enrolled in Enterprise and Desk Top Publishing classes, and helps out at a local old folk's home every week. It took both Stacy and her parents some time to come to terms with her condition and to learn about epilepsy fully - the nature of seizures, medication and other forms of control available - and Stacy's mother Christine maintains that contact with Quarriers Epilepsy Fieldwork Service local fieldworker has been an enormous help to the family. The family were introduced to the Epilepsy Fieldwork Service by another parent at Rehab Scotland in Aberdeen, one of a network of rehabilitation centres to help people living with a disability cope with their condition and lead independent lives.
Christine said: "Our local fieldworker has been brilliant. When Stacy was first diagnosed, a fieldworker offered to go into the school to talk to Stacy's teachers or her classmates - she talked Stacy through all the things she could do for her to help people understand her condition better. As it turned out, Stacy didn't need this support at that time but it was good to have that offered. Through the years Stacy has been prescribed various different kinds of drugs to control her seizures, and our fieldworker has been on hand to tell us more about them, making sure we know what to expect from side effects and that sort of thing. At the moment Stacy has a vagus nerve stimulator implant - our Fieldworker took us a dummy implant before the operation and told us all about this method of controlling seizures before we went ahead."
She continued "Our Fieldworker makes sure we are in touch with all the different people that help Stacy - the Community Placement Team auxiliary that takes her to college, her doctors and so on - we feel better knowing that all the people that are looking after her are kept up to date on her epilepsy and her needs. It is a great comfort to know that Stacy, her father and I are all able to pick up the phone to our Fieldworker when something comes up - she's always willing to talk."
END
This information from Jane Smith, The Business:
T: 0131 718 6022.
M: 07780 666136
E: janes@thebusinesspr.co.uk
Press release index »
