The epilepsy nurse specialist is a pivotal member of the epilepsy team and should be a key element in the care of the child with epilepsy and their family. Both NICE and Epilepsy12 highlights the need for Epilepsy specialist nurses to be part of a network of care for epilepsy. Epilepsy12 youth advocates voiced they felt knowing who their epilepsy nurse specialist service were and how to contact them, including their hours of services, what to do out of hours, and what services the epilepsy nurse offered would be beneficial.
Our service is part of the wider epilepsy team working with the consultant to manage the child’s epilepsy, offer support and provide information to the family through difficult times. We also provide education and advice to carers and support organisations who are part of the child’s life.
- ShapeTelephone advice to patients and professionals
- Participation in multidisciplinary team meetings
- Complete home visits if clinically indicated
- Provide epilepsy medication reviews
- Nurse led Vagus Nerve Stimulation (VNS) service
- Training to education settings, respite, community & inpatient clinical areas
- Professional liaison with community, hospital, primary care and educational settings
- An aim to reduce, where clinically possible, hospital admissions for children and young people living with epilepsy under our care
- Participation in national and trust audits to promote excellence
- Engagement in regular professional supervision and oversight
- Clinics; New Patient, Review (Virtually & Face to Face), Community complex epilepsy & VNS
We now have a transition nurse dedicated to epilepsy who will provide a smoother transition into the adult sector.
All of the Epilepsy Nurses are registered Children’s Nurses, and the majority of the team are supported by Roald Dahl Charity.
Meet the team
Laura Neely – Team Leader
Laurie Bibby – VNS Lead
Louise Morgan Nilsen – Community Nurse
Cheryl Haigh – Telephone and Ward Liaison
The majority of people with epilepsy have their seizures controlled by anti-seizure medication. A great deal of progress has been made in this field over the years and now approximately 70% of children with epilepsy will have their seizures totally controlled or greatly reduced by taking regular medication. The choice of medication depends not only on the type of seizure, but also the epilepsy syndrome and upon the individual. It may take some time to achieve the right dose for each person. Ideally, the clinician should always aim for monotherapy (one medication), this is not always possible and so a second medication may be given in addition to the first line medication. There is no evidence to suggest more than 2 medications work any better but for a small number of children this is required to improve their seizure control.
Medication will only help with controlling the epilepsy it will not cure it. It is most important to take the prescribed dose at the prescribed time and we encourage families not to make changes to medication without medical advice. The ultimate aim of medication is to prevent or reduce seizures. Anti-seizure medications should never be stopped abruptly without medical advice as there is a risk this could cause status epilepticus, a life threatening emergency.
Medication, along with the CYP’s epilepsy is always reviewed at each clinic visit and this should occur at least once every year. Telephone reviews can always take place in between visits if so required.
The ketogenic diet is a specialised diet with a high fat and low carbohydrate content and can be classified in the following subtypes;
- MCT (Medium Chain Triglyceride)
- Modified MCT (John Radcliffe)
- Modified Atkins
- Low GI
This is a consultant neurologist led service with support from specialist trained ketogenic dieticians. A pathway is in place to review children eligible for this form of treatment and they require review and monitoring on a regular basis to assess for any side effects. Children and young people with drug resistant epilepsy or specific genetic conditions may be considered. It is recommended that each child has an individually designed diet. The ketogenic diet has shown efficacy and should be considered for use with children with drug-resistant epilepsy, however, the diet is not without side effects which should be considered alongside the risk-benefit of other treatments when planning the management of these children.
Alder Hey, jointly with Manchester Children’s hospital is one of four regional tertiary centres commissioned by NHS England that offers resective surgery for treating epilepsy. Further information is given on this website.
Vagus Nerve stimulation (VNS)
For those CYP where resective surgery is not an option, VNS may be considered. This is a pacemaker – like device that is implanted surgically in the left chest wall. The device will send impulses via a lead to titanium coils wrapped around the left vagus nerve however the true mechanism of the VNS is not yet completely understood. Children and young people are discussed at the NorCess multi disciplinary team meeting and reviewed in a specialist clinic. Once the device is implanted the family are reviewed regularly by VNS lead nurse Laurie Bibby to review and alter device settings.
As medicine evolves there continues to be new medications introduced and trialled in the United Kingdom such as the use of cannabidiol medication such as Epidiolex. Epidiolex is licensed specifically for Dravet Syndrome and Lennox-Gastaut syndrome but current research is limited and further studies are required to assess just how effective medications containing cannabidiol are for people living with epilepsy (NICE, 2019). Medications such as Epidiolex are strictly legislated and are prescribed under specialist guidance from the BPNA (British Paediatric Neurology association), NHS England and Trust Guidance.
This is a Neurology Consultant led service and the individual CYP must be initially referred to a paediatric Neurologist.
- Prevention of ED attendances
- EHCP completion enable appropriate supervision in school
- Safeguarding diligence prevent harm to child/Young person
- School meetings enable CYP to be able to attend school
- Support from the team have enabled CYP attend outside activities
- Improvement in epilepsy management due accessibility
Consultant only referral via Meditech order.
Child or young person MUST have been given a confirmed diagnosis of epilepsy and parents/carers advised of this.
0151 252 5927 (answer machine)
The team is based within the Neurology department in office 2B but we use a hybrid concept and on occasion work from home.
More information about Epilepsy
Epilepsy is the most common disease affecting the brain. It presents with the tendency to have recurrent seizures (previously known as ‘fits’).
An epileptic seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption in the normal messages passing between neurones. This disruption results in the brain’s messages becoming halted or mixed up.
Epilepsy is a disease characterized by the occurrence of epileptic seizures and by the neurobiological, cognitive, psychological, and social consequences of this condition. In summary: a seizure is an event and epilepsy is the disease involving recurrent unprovoked seizures.
Epilepsy tends to be diagnosed when an individual has had two unprovoked seizures more than 24 hours apart.
On occasion some individuals who have had only one unprovoked seizure but other risk factors which make it very likely that they will have another seizure may be diagnosed with epilepsy and prescribed regular anti-seizure medication.
Some people can be identified as having an epilepsy syndrome and so may meet the definition for having epilepsy even after just one seizure.
Epilepsy is often a symptom of an underlying neurological (brain) problem. Clinicians should consider an underlying cause (aetiology) for epilepsy which can be characterised into; Structural, Genetic, Infectious, metabolic or Immune causes.
There are still a number of people that don’t find the underlying cause for their epilepsy, and they would be characterised as an ‘Unknown’ aetiology. Understanding aetiology can aide in treatment and prognosis as well as managing expectations and improving information sharing.