A co-ordinated approach to epilepsy care in Grampian
24-Oct-2002
Almost 4,000 people in the Grampian region have epilepsy. In Grampian, as across the UK, a better understanding of epilepsy is essential to allowing those with the condition to lead independent and healthy lives. Care for those living with epilepsy has to be co-ordinated and informed. Quarriers Epilepsy Fieldwork Service is working in the region to achieve just that.
The recent findings of a fatal accident enquiry into the death of Colette Findlay from Glasgow, who died from an epileptic seizure, have highlighted the importance of health professionals working more closely together to deliver a co-ordinated care plan. The Scottish Executive have pledged to work towards this through Managed Clinical Networks - a team of professionals who focus on the interaction of the range of services required by the individual.
The New Futures Initiative currently being implemented by Local Authorities and Health Boards, under the direction of the Scottish Executive, also focuses on working together in a co-ordinated way to prevent duplication of services. An agreed single assessment, joint budgets and clear communication with clients, carers and voluntary organisations will streamline services and make them more effective.
Quarriers Epilepsy Fieldwork Service has been active in Grampian since April 2000, ensuring that care is co-ordinated for those with epilepsy in the area, and proving the value of this approach - both to the individual and to the health and care professionals in avoiding duplication of services. The team of professionals provide advice and support for people with epilepsy, interact with health professionals to ensure they are aware of all aspects of the individual's care plan, and inform the wider community of the realities of daily life for those who live with the condition.
Epilepsy is a neurological condition where a person has a tendency to have recurrent seizures. Although one in every 200 people have epilepsy, the figure rises dramatically when referring to the number of people that will have a seizure at some time in their lives: one in twenty. More often than not, these seizures won't recur (and then be classified as epilepsy), but they can be frightening for the individual and those around them. First seizures can be the result of diabetes, stress or heart disease, or can be triggered by substance or alcohol misuse, and are more common in children and older people.
Four epilepsy fieldworkers attend to the four main localities within the Grampian region: North Aberdeenshire, Moray, Aberdeenshire Central and South, and Aberdeen City.
What do Quarriers Epilepsy Fieldworkers do?
Support for those with epilepsy
With the client's consent, fieldworkers share information with medical staff in the Grampian region to provide a full picture of the support the person with epilepsy requires. They can identify support required from health professionals, social work, and other voluntary and statutory organisations, and assist with treatment plans when the condition is newly diagnosed. By communicating with a network of occupational therapists, social workers and nurses, duplication of services is avoided. Fieldworkers can provide 'shadowing' days when a newly qualified nurse or social worker in training accompanies the fieldworker in order to train and become familiar with issues people with epilepsy face in their day-to-day lives, and the support they need. This co-ordinated approach to care is crucial - first and foremost to ensure the individual receives the best possible care, but also to avoid the duplication of services and waste of resources.
Information and support both practical and emotional is also on hand for those caring for someone with epilepsy at home. Carers can call on Quarriers fieldworkers to help them talk about issues that concern them, and to access information and training. Fieldworkers can support by advocating on the person's behalf, for example talking to employers about crisis situations that might require them to take time off.
Counselling, support and advice for those with epilepsy
Fieldworkers attend clinics and provide counselling and support to those who have recently been diagnosed as having epilepsy. They work on an individual basis with those who have epilepsy, to inform them about medication which can help control seizures, and adopting a healthy lifestyle; they provide support for those about to have, or who have just had, surgery for epilepsy.
Fieldworkers may act as an advocate for people with epilepsy to ensure their needs are both understood and met; and they provide counselling for those experiencing difficulties, lifestyle changes, stigma, social problems or difficulties dealing with a new diagnosis of epilepsy.
Women with epilepsy can feel confused about the health implications for themselves and their baby, but the workers in the Grampian region are able to provide them with information and support. The majority of women with epilepsy are able to have healthy pregnancies - Quarriers Epilepsy Fieldwork Service ensures women are aware of the latest information and research in the area so that they can make informed decisions.
Raising awareness: in the playground and in the workplace
Quarriers Epilepsy fieldworkers are able to liaise with employers to ensure they understand the needs of employees with epilepsy, and the implications of legislation that pertains to people with disabilities or long term conditions. They can provide training in the workplace and work with employers and employees to assess risk.
The team also have embarked upon their second year of providing epilepsy training in the area, with the intention of raising awareness and understanding of epilepsy amongst schoolchildren, therefore reducing the likelihood of bullying.
Quarriers Epilepsy Fieldwork Service piloted a scheme to raise young people's awareness of epilepsy in schools. First year classes at one large secondary school in the area received epilepsy awareness training to better their understanding and tolerance and therefore reduce bullying, and increase first aid abilities. As part of the school curriculum, the first year students' induction includes material on anti-bullying behaviour. Each class in that year had training by a member of Quarriers Epilepsy Fieldwork Service team, where children were asked if they knew anyone with epilepsy, and what their impressions of the condition were. The workshop then informed the children of the realities of living with epilepsy and taught them first aid techniques so that they would have greater knowledge and could assist should someone have a seizure in their presence.
Lynnette Oldman, project manager of the Service, and the project worker responsible for devising and delivering the schools awareness programme said she'd had very positive feedback about the workshops from the young people themselves, teachers and parents. She explained that increasing children's awareness and understanding of seizures and epilepsy helps reduce stigma or bullying: "I think in any realm, the unknown can be frightening. Many of the young people we see in schools know someone who has epilepsy, whether a family member or a friend. Teaching them about epilepsy, and helping them understand the condition helps them to deal with their fears. Bullying often comes out of fear, so the importance of raising awareness can't be underestimated. Children tend to have more open minds than adults too, so the younger you start, the better."
ENDS
Notes to Editor:
Quarriers is Scotland's third largest care charity, number SC001960. Established in 1871, it provides a wide range of care services for children, families, young people and adults with a disability from around 70 sites in west-central, south-west and north-east Scotland.
A Case Study may be available on request.
Quarriers Epilepsy Fieldwork Service local telephone numbers: North Aberdeenshire 01261 815056, Moray 01309 675900, Aberdeenshire Central and South 01569 767771, Aberdeen City 01224 558317.
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
This information from Shona O'Donnell of The Business, public relations support to Quarriers. For more information please contact: Tel: 0131 718 6022 Fax: 0131 718 6145 Mobile: 07879 842527
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