Children’s Epilepsy Nursing Service
The Children’s Epilepsy Nursing Service is a holistic service, seeking to provide for patients aged 0-19 years within Norfolk Community Health Care and who have an NHS Norfolk GP. We work in partnership with children and their families, who have or are likely to have a diagnosis of Epilepsy.
The overall goal of managing epilepsy is to enable the child or young person and their family to lead a life as free as possible from clinical and psychosocial complications. This is achieved through access to the Children’s Epilepsy Specialist Nurses and other associated colleagues (Norwich Epilepsy Group – medical, psychological and technical support) who have effective links to schools, secondary care and other services accessed by the child and family. The particular needs of adolescents are managed in the “nurse-led young person’s epilepsy service”.
The Children’s Epilepsy Nursing Service will:
- Provide a service which is accessible, responsive and effective in a variety of settings appropriate to the child’s needs
- To offer a holistic service for children and young people with epilepsy, their families and carers. This will be achieved by:
- Providing detailed information and advice at an appropriate time during diagnosis and treatment by the use of resources available (leaflets, videos, DVDs etc)
- Formulating packages of care following referrals according to holistic, individual need. This may involve visits to home, nurseries, playgroups, schools and hospital
- Attend defined epilepsy clinics held by acute and community paediatricians, where possible
- Provide information and training as required to staff and carers in all areas of the statutory and voluntary sectors, to include nurseries, playgroups and social services
- Provide information and training to the UEA School of Nursing
- Develop a link nurse network between primary and secondary care
- Provide a “nurse-led young person’s epilepsy service” for patients on transfer to the adult epilepsy service
- Provide a telephone helpline service for children, young people, families and carers
- Identify, initiate and or participate in audit, research and developments activities to enhance service delivery
- Act in accordance with Norfolk Health Safeguarding Children Team (ACPC) recommendations on Child Protection Procedures in relation to Child Protection issues
Priority will be given to:
- Newly diagnosed patients, where there is a change in seizure pattern and or medication, monitoring medication regimes and side-effects
- Patients with refractory epilepsy
Referrals for the Children’s Epilepsy Service primarily come from the Children’s Epilepsy Clinics held at the Norfolk and Norwich University Hospital and at Queen Elizabeth Hospital in King’s Lynn. We also accept referrals from community paediatricians.
Nurse-Led Young Person’s Epilepsy Service
The Young Person’s Epilepsy Service was set up in 2003 to smooth the transition of patients from the Children’s Epilepsy Service into the Adult Epilepsy Service.
Clinics are currently held in the adult neurology department on the 1st Friday of each month. Each clinic is attended by the Children’s Epilepsy Specialist Nurse and the Adult Specialist Epilepsy Nurse. Each appointment is 60 minutes long. The first 30-40 minutes are spent with the young person, individually, and parents/carers are asked to join the consultation room for the remaining time.
The consultation is based around the discussion of the “Upfront” pack from Epilepsy Action which is specifically designed for young people with epilepsy. On agreement with the young person a letter is sent to their consultant, with a copy for them.
The service aims to:
- Empower the young person and improve of their quality of life through an improved understanding of their condition
- Provide access to expert knowledge
- Demonstrate consideration that the psychosocial aspects of living with epilepsy share equal importance with the medical aspects e.g. lifestyle, education, employment, driving
- Address quality of life issues
- Monitor medication – assess adherence, efficacy and toxicity and liaise with the appropriate medical personnel to effect relevant change
- Provide a point of contact through meeting with the adult epilepsy nurses