Epilepsy and Intellectual Disability Specialist Service

We provide assessment and treatment for adults with complex epilepsy and intellectual disabilities across Nottinghamshire. We take a holistic approach to patients' neurological problems, diagnosing and treating epilepsy and associated health conditions. Our focus is on better seizure control and improved quality of life.

 

Our learning disability qualified epilepsy specialist nurses provide clinical services into the Queen’s Medical Centre (QMC), City Hospital and Highbury Hospital in Nottingham, and King's Mill Hospital in Mansfield. 

 

Information for women and girls taking medicine containing valproate:

Our team and who we help

Our team

Sarah Pashley, Consultant Nurse in Epilepsy and Intellectural Disability

Lisa Flinton, Epilepsy and Intellectural 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.

What the service offers

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 Hospital, King's Mill Hospital and Highbury Hospital. 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.

Resources and advice

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.

 

Seizure charts

 

Vagal nerve stimulation

 

Information leaflets

Our service is provided in partnership with Nottingham University Hospitals NHS Trust. For the full selection of information leaflets, please visit their website.

 

Useful links

The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care www.nice.org.uk/cg137

 

Information in other languages

This video is available to watch in English, Bengali, Cantonese, Hindi, Somali, Turkish and Urdu.

Epilepsy films and books

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 services film

 

Living well with epilepsy film

 

Transition into adult services film

 

Having an EEG film

 

Having video telemetry film

 

Having VNS Surgery film

 

Having an MRI scan film

How to make a referral

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 [pdf] 48KB

Education and training

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 sessions include:

  • Diagnosing epilepsy, understanding the carer’s role
  • Causes of epilepsy
  • Making sense of seizure types
  • How to record seizures
  • Risk assessment and care planning
  • Epilepsy related health issues
  • Drug treatments and rescue medication
  • Vagal nerve stimulation

The epilepsy service provides bespoke training for carers working with individuals with complex epilepsy and to health professionals. A nominal charge is made applicable to private agencies.

 

 

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