Epilepsy and Intellectual Disability Specialist Services

Our team

Sarah Pashley, Consultant Nurse in Epilepsy and Intellectual Disability

Lisa Flinton, Epilepsy and Intellectual Disability Specialist Nurse

Claire Hudson, Epilepsy and Intellectual Disability Specialist Nurse

We work with four consultant neurologists/epileptologists and adult epilepsy nurses employed by Nottingham University Hospitals NHS Trust.

 

Who we help

We mainly provide services to:

• Adults in whom diagnosis and treatment can be challenging, and special expertise is needed to diagnose and manage their condition. This includes people with complex behavioural, sleep, movement, communication, and psychiatric disorders
• Adults with poorly controlled epilepsy
• Patients who have difficulty accessing mainstream health services and clinical investigations
• People who have epilepsy in association with a genetic diagnoses, for example Rett Syndrome, Tuberous Sclerosis, and people with Down’s syndrome and dementia
• Teenagers in transition to adult services, to make the transition smooth for those with complex epilepsies, and teenagers with profound and multiple needs
• Healthcare professionals and community care providers who need specialist advice, education and training.

Our service also acts as a resource for the development of policies, procedures, guidelines and pathways.

We provide:

• Specialist epilepsy assessment, diagnosis and treatment
• Access to investigations (MRI, EEG, Neuropsychology)
• Inpatient video/EEG telemetry
• Epilepsy surgery assessment
• A vagal nerve stimulator service
• Information to help patients stay safe
• Transitional care from Paediatric Services
• Information and resources to increase understanding and concordance with treatment
• Liaison and signposting to other specialist intellectural disability services
• Advice about emergency / rescue treatment
• A telephone advice line
• Education and training
• Multi-disciplinary clinics

 

Epilepsy clinics

The Team provides regular clinics at the Queens Medical Centre, Nottingham City, King's Mill, Newark and Highbury Hospitals. Some clinics are jointly run with other specialists to meet individual’s specific health needs, such as:  

• Teenage transition clinics in local special schools and hospital based clinics with paediatric services
• Neurology and intellectural disability psychiatry clinics
• Community based clinics and home visits to those with complex behavioural or palliative care needs

Find out more about the service we provide at the Queen's Medical Centre.

We provide a range of accessible information about epilepsy treatment and management for service users as well as carer information. We hold a range of epilepsy related information booklets and leaflets and seizure monitoring charts.The national epilepsy voluntary organisations are a valuable source of information (see 'useful links' below).

The epilepsy and intellectural disability service operates a telephone advice service within working hours. Our advice line number is 0115 854 2248.
 

Sleep

Sleep is essential for good health and wellbeing. Most people have difficulty sleeping from time to time.

Click the links below for information to help you think about your current sleep habits and suggestions to help you sleep better.

• How to sleep well
• Managing Insomnia and Sleep Problems Booklet
• Sleep diary
• 10 rules for improved sleep hygiene

 

Seizure charts

• Daily seizure chart
• Annual seizure chart   
• Keeping Epilepsy Records

 

Vagal nerve stimulation

• Vagal Nerve Stimulation
• Insertion of a vagal nerve stimulator

 

Information leaflets

Please see below links on Epilepsy treatments:

• Epilepsy treatment | Epilepsy Society
• Anti-seizure medication (ASM) | Epilepsy Society
• List of anti-seizure medication | Epilepsy Society

 

Useful links

• Home - Epilepsy Action
• Epilepsy Society | Transforming lives through advocacy, research and care
• Epilepsy Research Institute - Radically advancing research into epilepsy (epilepsy-institute.org.uk)
• MedicAlert | Medical ID | Jewellery & Services
• SUDEP Action | Making every epilepsy death count
• UK Epilepsy & Pregnancy (epilepsyandpregnancy.co.uk)
• Non-Epileptic Attacks (google.com)

The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care Epilepsies: diagnosis and management | Guidance | NICE.

These seven short educational films have been made with the help of people with epilepsy and intellectual disability, together with Nottingham University Hospitals.
The films explain hospital tests, epilepsy treatment, transition between services and how to live well with epilepsy. Each film has an accompanying booklet.

 

Please click on the images below to view each film, or click on the title below this to view each booklet. We would welcome your feedback or comments about the films or booklets.

About our Service - Epilepsy and Intellectual Disability Service from Nottinghamshire Healthcare on Vimeo.

• About our service [PDF]

 

• Living well with epilepsy [PDF]

 

• Transition into adult services [PDF]

 

• Having an EEG booklet [PDF]

 

• Having video telemetry booklet [PDF]

 

• Having VNS surgery [PDF]

 

• Having an MRI scan [PDF]

Referral process 

We accept referrals from primary and secondary healthcare professionals, and community based health and social care professionals. Self referrals are not accepted. GPs can refer using SystMOne F12 button Neurology. Choose the Epilepsy and Intellectual Disabilities option. Referrals should otherwise be made in writing to:

Sarah Pashley, Epilepsy Intellectual Disability Consultant Nurse,
Fern House, Highbury Hospital, Bulwell,
Nottingham
NG6 9DR

Telephone:  0115 854 2248 (Team Secretary)

or

Sarah Pashley, Care of Dr O’Donoghue’s secretary
Department of Neurology
D Floor, West Block
Queen’s Medical Centre
Nottingham
NG7 2UH

Service pathway process map

We provide a range of education and training opportunities. The team run epilepsy workshops and also deliver epilepsy awareness and rescue medication training directly in to the workplace. 

Epilepsy Awareness Training:

Core components:

• What is epilepsy
• Causes
• Diagnosis and differential diagnosis (including non-epileptic attacks, facilitating access to investigations)
• Types of seizures and accompanying video clips
• Treatment: medication, side effects, Health comorbidities and drug interactions, concordance, Vagal Nerve Stimulation (on request)
• Living well with epilepsy
• Care planning and record keeping (including assessing risks, keeping safe)
• Preparing for outpatient appointments and GP reviews
• Sudden Unexpected Death in Epilepsy (SUDEP)
• Status epilepticus
• Treating prolonged seizures in the community (rescue medications)
• First aid
• Accessible resources and useful websites
• Electronic Session handouts

Rescue Medication Training

Participants should have already attended the Epilepsy Awareness Course or plan to do so within 12 months of undertaking this session

Core components:

• Staff competencies (individual responsibility and accountability)
• What is Rescue Medication (drug specific)
• Indications for use (includes status epilepticus and seizure clusters)
• Drug properties
• The effect of these drugs on the body (including potential side effects, misuse, and overdose)
• When and how to give rescue medication and practical demonstration (opportunity for staff to familiarise with equipment and practice)
• National Guidance, Local policies and procedures
• Care plans and record keeping
• First aid and when to seek medical help
• Electronic Session handouts

For enquiries about training please contact the Epilepsy team on 0115 8542248

• Best practice guidelines for training professional carers in the administration of Buccal (Oromucosal) Midazolam for the treatment of prolonged and / or clusters of epileptic seizures in the community.
  • ESNA-Midazolam-Guidelines