Epilepsy
Epilepsy is one of our workstreams and the North Thames Paediatric Epilepsy Network (NTPEN) run meetings quarterly to cover the most important aspects of care for epilepsy patients in the region. These meetings provide professionals with the opportunity to come together and brainstorm how to provide holistic and equitable care for children and young people (CYP) with epilepsy.
Epilepsy is one of the five key clinical priorities within the CYP CORE20PLUS5 framework and reducing emergency admissions and improving quality of care for CYP with long-term conditions, such as epilepsy, is included in the NHS Long Term Plan. The CYP Transformation Programme Epilepsy Oversight Group has been working to deliver the recommendations of the Long Term Plan based on the Epilepsy12 audit.
Epilepsy Nursing Pilot
Our epilepsy nursing pilot is funded by the NHS England Children and Young People Transformation team and is hosted by the North Thames Paediatric Network for a fixed term period until March 2025. This work arose from the publication of the new epilepsy bundle of care and has the CORE20PLUS5 principles at its core to reduce health inequalities faced by babies, children and young people (BCYP) with epilepsy. We have big plans for the year to focus our nursing pilot and our main focus will be addressing the National bundles of care for children and young people with epilepsy to achieve this.
We will focus on:
- Analysis of the current epilepsy care within the North Thames Paediatric Network
- Engagement of BCYP themselves to give them a voice in the nursing pilot through survey evaluation.
- Ensuring access to epilepsy specialist nursing to BCYP with Intellectual Disabilities, Autism/ASD and Complex health Needs by running one epilepsy nursing clinic pilot in North Centre London ICB and one in North East London ICB.
- Promoting the new paediatric SUDEP checklist across all North Thames Paediatric Epilepsy Network sites.
- Development of a shared care checklist to ensure services are meeting a high standard of shared care between tertiary and secondary epilepsy services.
- Nursing input into a new version of a 'Universal Care Plan'.
- Development of a transition package for all young people with epilepsy to give them and their families information on what happens during this process.
- Joint working with the South Thames Paediatric Network to ensure London wide resources such as 'The Epilepsy in Schools Guide'.
These are our main priorities for our nursing pilot until April 2025 and to ensure the health inequalities experienced by BCYP with epilepsy are met.
Epilepsy Transition Resources
Click on the headings below for more information.
SUDEP Resources
Meet the team
Dr Amit Bali
Clinical Lead
About
Amit is a general paediatric consultant with an expertise in epilepsy, working at Barts Health NHS Trust. He also has a background in clinical leadership, with a lot of his work having been centred around establishing holistic, integrated care for CYP with epilepsy.
Denise Edwards
Lead Nurse
About
Denise is an experienced nurse who has been working in the NHS for 39 years across acute, tertiary and community Trusts. She brings with her a wealth of experience and passion for working with children impacted by epilepsy. Working with the children and their families to make a difference to their lives and supporting them to live, learn and grow in the communities they reside in. Denise is looking forward to influencing and driving forward improvement in practice across the North Thames Paediatric Network working across tertiary, acute and community providers. This is a part time role and Denise will still be remaining with NELFTs Barking and Dagenham Childrens Services.
During Denise’s adult nurse training, her passion about understanding epilepsy and working with children with additional needs first emerged following her experience on the children’s ward at Harold Wood Hospital. Since then, Denise has gone on to complete her adult nursing, children’s nursing and health visiting at each step developing her commitment to children with additional needs working with all to ensure they receive the best care and support in the community. Her passion for working and improving the lives of children with epilepsy has been long standing and culminated in completion of her MSc in Epilepsy at Kings College London university after which she then proceeded to complete the Non-medical Prescribers course.
Denise’s experience and knowledge of community work will stand her in good stead for the new challenge of working across the North Thames Region.
I am excited to start this secondment and raise the profile of children with epilepsy and hopefully shape care for the future across North Thames Network for epilepsy.
Lee Butler
Epilepsy Specialist Nurse
About
Lee is an experienced Learning Disability and Children’s Nurse. Lee has a wide range of experience which he brings to this role having working in paediatric neuro-rehabilitation, paediatric hospice care, respiratory medicine and most recently in paediatric intensive care at GOSH. Lee has recently completed his MSc in Children’s nursing and is already planning more learning. Lee is excited to take on this new role and improve the care of children and young people with epilepsy.
Dr Laurence Hasson
Clinical Psychologist
About
Laurence is an experienced clinical psychologist who has been working in the NHS for 10 years. He completed his Doctorate in Clinical Psychology in 2019, and began working in Community Paediatrics in Hertfordshire, specialising in neurodevelopmental assessment. His special interests include autism assessment and diagnosis, behaviour and mental health, and epilepsy.
In 2021, Laurence moved to Great Ormond Street Hospital and joined the Neurodisability stream in the Developmental Epilepsy Clinic, assessing children and young people on the Childrens Epilepsy Surgery Service (CESS) pathway. Laurence frequently assessed cognition, memory, social communication, attention, and mental health in children and young people with epilepsy.
Laurence’s experience and knowledge of epilepsy and mental health will stand him in good stead for the new challenge of working across the North Thames Region, and he is excited to begin implementing this NHS England pilot project to improve mental health care for young people with epilepsy.
