Epilepsy12 - Quality improvement case studies 2023

The Epilepsy12 audit supports continuous improvement activities within paediatric epilepsy services in England and Wales. We aim to improve clinical outcomes and reduce variation in care quality for children and young people with epilepsy.
Last modified
3 January 2024

Our quality improvement activities

This audit supports QI activities in a number of ways:

Local

  • The Epilepsy Quality Improvement Programme (EQIP) supports paediatric epilepsy services to identify and implement sustainable improvement interventions.
  • The audit provides Trust/Health Board level reports to participating organisations with regional and national benchmarks. The results are used to develop local strategy, provide an evidence base for improvement projects, and to highlight successes and identify ongoing needs. 
  • We deliver an outlier identification and management process (download on our methodology and data submission page) and share the results with the CQC and Welsh government to facilitate improvement and reduce variation in practice. 

Public

  • The Epilepsy12 Youth Advocates (epilepsy experienced children, young people, families, and two epilepsy specialist nurses) provide their views to influence the audit and lead improvement activities. 
  • The RCPCH &Us programme's Impact and Influence of CYP Voice aims to create products, videos, and training resources for the public and for epilepsy services to drive quality improvement across these groups.
  • Epilepsy12 has commissioned the Association for Young People's Health (AYPH) to carry out an engagement and scoping project to understand the experiences of young people with epilepsy from communities that experience marginalisation.

National

  • Epilepsy12 national reports set out national recommendations developed in conjunction with system stakeholders.
  • NHS England Epilepsy Oversight Group use evidence from the audit to support policy and improvements in their four priority areas of epilepsy care: Mental Health, Children's Epilepsy Surgery; Variation in Care and Transition.
  • Epilepsy12 is funding the Professional Record Standards Body (PRSB) to conduct the discovery phase for a project that will develop information standards for epilepsy health and social care records. 
  • Epilepsy12 hosts the OPEN UK Working Group, and sits on the UK Epilepsy Programme Board, bringing stakeholders together to support improvement in epilepsy care. 
  • The Epilepsy12/OPEN UK National Conference takes place annually and brings together healthcare professionals, CYP, charity organisations, commissioners and other Epilepsy12 stakeholders to discuss how to support and improve paediatric epilepsy care. 

Quality improvement strategy

We engaged with stakeholders and quality improvement experts to identify our priority areas of care and agree on five quality improvement goals for 2022-25. 

Our quality improvement strategy (PDF) outlines our plans to facilitate and evaluate our QI activities with these goals in mind.

Case studies

Epilepsy12 invited epilepsy services in England and Wales to provide case studies of their quality improvement activities undertaken in the last year to improve the care provided to children and young people with epilepsies.

The full case studies are available in the Downloads box below

Cambridgeshire Community Services NHS Trust

With the support of Cambridge University Hospital, Cambridge Community services introduced in-school appointments for children with epilepsy in SEND schools. They identified that attendance at hospital appointments can be challenging and may result in time off work, time off school, travel costs, and having to find childcare for siblings. Furthermore, parents often have their own learning needs and face financial constraints.  

By delivering epilepsy care in schools, both clinicians and school teams could gain a more holistic understanding of a children and young people’s needs. Better links were made between schools and community paediatricians, and schools could better support non-urgent care plans. Schools could also engage in management decisions and support the implementation of any changes.  

Parents could join appointments in-person or virtually, resulting in reduced cost associated with appointments. Children and young people also took less time out of school and were more relaxed within appointments. Both teachers and parents rated the process positively and the number of missed appointments decreased, ensuring the most was made from each appointment.  

Cwm Taf Morgannwg University Health Board

Cwm Taf Morgannwg University Health Board Paediatric Epilepsy Team alongside Paediatric Clinical Psychology identified mental health screening and support of children and young people with seizures and epilepsy as an area of improvement following the Epilepsy12 audit.  Previously referrals to Paediatric Clinical Psychology and the Child and Adolescent Mental Health Team occurred on an ad-hoc basis and relied on staff’s individual competencies and awareness around mental health issues. 

The Team reviewed several mental health measures for a paediatric population and identified three mental health screening measures PI-ED, PHQ-9 and GAD-7 to use based on reliability, ease of use and cost.  Instructions were developed to support staff in discussing mental health concerns and on administering and scoring the screening tools.  Decision flow charts and referral pathways were designed to determine the most appropriate ways forward following screening. 

The screening and referral processes are reviewed in regular multidisciplinary meetings.  As a result, services have found that more appropriate referrals are being made and that staff feel more confident in identifying and addressing mental health needs.  Furthermore, stemming from this project, a UK wide special interest group has been created between various paediatric clinical psychology services to discuss and impart the findings as well as improve clinical practice. 

The Team hopes to do a more detailed analysis of the data collected to help support a bid for dedicated paediatric clinical psychology support for children and young people with epilepsy.  

Epsom and St Helier University Hospitals NHS Trust

The team devised a project to establish which patients in the paediatric epilepsy clinic had mental health issues and to offer help and resources given that psychiatric and psychological support via referral is limited.  

A simple validated questionnaire was incorporated into the history taking of school-aged new patients. If a mental health concern was identified, an online resource was offered.  

Going forward, the team will monitor the engagement with and efficacy of the virtual resource. 

Hampshire Hospitals NHS Foundation Trust

The clinical team has developed and implemented the Child and young person Epilepsy Concerns Checklist (CHECC) to identify the wider needs of patients with epilepsy. This was to facilitate information sharing between education and epilepsy services, allowing them to: 

  • Identify concerns related to epilepsy, neurodevelopment, and mental health without the need for multiple screening tools.  
  • Confirm that support is in place, such as special educational needs provision.
  • Highlight areas of further evaluation.    

The CHECC was developed with input from families, charities, and healthcare professionals. Three different versions were created for parents/carers, education, and young people.  

So far, the CHECC has:

  • Identified main areas of difficulty including mood and behaviour, attention and concentration, communication and social interaction, learning and intellectual development.
  • Led to focused information gathering and evaluations, which were associated with formal cognitive assessments and diagnoses of learning disabilities and neurodevelopmental conditions.  
  • Been an efficient and effective way of enabling education providers to highlight broader educational concerns to the epilepsy team.
Harrogate and District NHS Foundation Trust

The epilepsy service at Harrogate and District NHS Foundation Trust introduced a clinic checklist to remind clinicians about the key items to be discussed in each appointment, including SUDEP.  

They audited patient notes before and after the introduction of the checklist to see if an improvement had been made in rates of SUDEP discussions. Prior to the checklist, only 5% of patients had documented discussions of SUDEP. Afterwards, this number rose to 66%. This improvement was particularly notable when looking at patients with only absence seizures – a group who were less likely to be informed of SUDEP as they have a lower risk.  

The team continue to implement changes with the hopes of raising the rate to 100%. They have replaced the checklist with a clinic letter template and have added SUDEP to the patient care plan reviewed annually.  

Hartlepool and North Tees NHS Trust

The Hartlepool and North Tees NHS Foundation Trust epilepsy service aimed to reduce waiting times for first paediatric assessments. Patients were waiting up to 16 weeks for their first assessment. NICE (2022) recommends that all patients are seen within two weeks of referral for a first seizure.   

They experienced an increase in new referrals, which were directed to individual paediatricians, each with varying caseloads and availability. The team enrolled in the RCPCH EQIP programme, and through this they dissected and analysed their referral pathway. In response, they increased the number of specialty epilepsy clinics and increased the number of new patient slots within each clinic. They also reworked the pathway so that referrals could not be directed to a specific clinician.  

They have found that there is now less variation in waiting times and, after 6 months, the average waiting time is now 4 weeks. The sources of referrals have broadened, with greater numbers of referrals from A&E and paediatricians.   

Several further ideas will be trialled as part of the project to ensure equity in waiting times for new referrals.  

Norfolk and Norwich University Hospital NHS Trust

The clinical team at the Norfolk and Norwich University Hospital NHS Trust aimed to develop and test a model of integrated psychology care within the epilepsy service.  

They identified the level of psychological need of the children seen within epilepsy clinics through a 3-week trial of psychological screening in routine epilepsy clinics. This found that about 50% of patients and 70% of families were at risk for poor health-related quality of life and many children and young people experienced emotional and behavioural difficulties. Qualitative findings showed that families struggled with isolation, anxiety, adjusting to their child’s epilepsy and impact on siblings.  

They then created and tested a service model co-designed with children, young people and families, generated qualitative and quantitative outcome data, and evaluated psychological interventions.  Group and individual psychological interventions were tested, as well as a psychology “on-call” service and psychological consultation for the MDT.  

Psychological support was offered to high-risk families, with many expressing a desire for 1:1 support and group support at certain points in the epilepsy journey. Over 100 families have been referred for individual psychological interventions. A Tree of Life narrative therapy group for children and young people was delivered and received positive feedback. 

Royal Berkshire NHS Foundation Trust

Epilepsy services should provide young people with support in transitioning to adult services and to be as independent as possible. A patient engagement project, in like with the RCPCH&Us engagement pilot programme, reviewed the current epilepsy transition service and the views of young people and families on what a transition service should entail. This was done through group engagement events for young people and parents.  

Young people wanted further information on their diagnosis and medication effects and side effects. Both young people and parents wanted information to be shared regarding alcohol, drugs, contraception and pregnancy. Parents of young people with learning disabilities wanted this information in a standardised format for them to share with their child if relevant.  

Young people and parents both saw benefit in group sessions for young people, without parents present, facilitated by epilepsy clinic staff. Patients and families felt positively about the engagement project and being able to meet others like them.  

The next steps are for the paediatric epilepsy team meets to discuss the results consider what might be possible within the existing workforce and with existing resources.  

South Tees Hospitals NHS Foundation Trust

Transition to adult epilepsy services is a key step in the management of young people with epilepsy. A trust-wide steering group supported a focused and formalised transition pathway using a recognised model to improve patient and carer experience of progression into adult services.  

A trust transition nurse was appointed and led a clinic for young people using a Ready, Steady, Go approach, which enabled time and space for support separate to clinical needs with both paediatric and adult ESNs. Young people were also seen for some of the appointment on their own.  

As a result, young people and their families or carers were empowered and prepared for the next stages of their care. The approach enabled discussion on care and safety risks, such as alcohol, sex and relationships. Relations between paediatrics and adult services improved as well. 

The team plan to implement the ‘Ready’ and ‘Steady’ stages of the programme earlier in patient care, with a focus on ‘Go’ in transition clinics. The project is being evaluated by a patient experience questionnaire.  

University College Hospitals NHS Foundation Trust

The clinical team at the Trust have aimed to increase the psychological support available in their service to young people with epilepsy through innovative engagement and delivery of care.  

They recruited a 0.2 WTE Clinical Psychologist who became an expert in the needs and common psychological difficulties experienced by young people with epilepsy. This new psychological provision included psychological presence at MDT meetings, monthly slots for psychological assessments dedicated to young people with epilepsy, and two new psychology-based groups: 

  • Tree of Life – A narrative therapy-based project helping young people build confidence and strengthen alternative stories of their life that do not foreground around epilepsy. The forum encourages discussion on the challenges of being a young person with epilepsy and collective exploration of responses to those challenges. 
  • Study skills for epilepsy – A workshop addressing, normalising, and providing support for common cognitive difficulties experienced by young people with epilepsy. A pamphlet was created with the information to be available for all young people with epilepsy at UCLH.  

The outcomes so far have been: 

  • Quicker access to a psychologist following referral.
  • Access to a psychologist with epilepsy specific expertise. 
  • Positive feedback from the team and patients.