Good practice examples

How to improve a paediatric epilepsy service: a case study

Epilepsy Action aim to share examples of good practice in the delivery of care for adults and children with epilepsy. This quality improvement has been written up by Peri O’Connor our Healthcare projects co-ordinator following her visit and conversations with staff in the paediatric epilepsy service delivered by Hull University Teaching Hospitals Trust.


The paediatric epilepsy service in Hull has changed and improved over the past few years, with children, young people and their parents and careers at the centre of every change. The service works with 420 epilepsy patients, including fourteen patients with VNS, three with cannabis oil and 50 CESS referrals leading to two patients undergoing surgery.

The whole team identified their vision for how they wanted to improve the service and what they wanted to achieve. The quality improvements needed included improved flow of patients through redesigned care pathways, reduced non-attenders at appointments and reduced waiting times.

These issues were potentially linked. A wasted appointment slot means a rebooking and someone waiting longer to be seen. Here we describe the quality improvements made by the team.

What were the drivers behind this change?

  • A new consultant starting, increasing the team to two full-time paediatricians and two ESNs
  • An increase in more complex patients and the need to adapt the service to accommodate their needs
  • Epilepsy was chosen as a pilot within the neurology department with the involvement of external service improvement facilitators
  • A service review in paediatrics, specifically epilepsy. With external support, the team looked at the patient pathway to discuss what was working now and what could be improved

How did the team go about making changes?

Consulting and gaining input from a wide range of people, from outpatients, patient admin, data coding and secretaries to business managers, the matron and the whole epilepsy team, was a crucial part in planning for success. Many post-it notes were used to work out what went well and what could be different, including a fish-bone diagram and other tools for service improvement.

This led to a business case for a third nurse, which proved successful, following 14 versions of the new job description and person specification! The business case highlighted the fact that the team could not manage as they were, and emphasised they were at crisis point.

The team identified three options for change – highlighting the impact for each:

  1. Do nothing and carry on, including the risks of remaining the same;
  2. Stop doing some clinics and therefore stop seeing a percentage of patients;
  3. Employ a third epilepsy nurse

What issues did the team face and how did they tackle them?

Establishing locality clinics

Issue: Patients were not attending clinics and DNA (Did Not Attend) rates increased.


  • A move to identify more possible community clinics was identified. This was a win–win situation succeeding in reducing DNAs.
  • When there are DNAs in locality clinics patients are sent a letter. To help understanding parents or carers now also receive a phone call to ask why.
  • If a patient does not turn up for two consecutive appointments the ESNs will refer the parents or carers to social services for advice.
  • The team can even offer home visits if safeguarding is involved.
  • It also has good links with the safeguarding team and has a quarterly meeting looking at socio-economic issues, complexity and cultural difficulties of patients where plans are made.
  • The team are continually reviewing and have recently cancelled the Withensea and Goole clinics as the DNA rate was too high.
  • The Trust continues to look at improving DNA rates as an issue.

Special schools

Issue: Patients with learning disabilities were finding the travel to clinics stressful and challenging and DNA rates were higher than desired.


  • A key area which has addressed DNAs is developing clinics in special schools where three or four patients can be seen at the same time without the children or young people having to travel to clinic.
  • There are however challenges. The special schools being non-profit organisations and part of the City Healthcare Partnership are dependent on citywide KPIs. Recently the                                                                                                                                                                                                                                                   KPI was stopped and the schools could no longer provide a nurse to facilitate the process of the visit. This has now changed, school nurses are now available and the special school based visits have been very effective.
  • The team now work in four special schools in Hull and two in East Riding.
  • Feedback has proved that it is far better for the young person with complex needs to not have to travel to clinic and be seen in familiar surroundings.

VNS and CESS pathway

Issue: An acknowledgement that more patients could benefit from VNS.


  • After a conscious decision to speed up the referral service, consultants are now referring quicker into CESS programme.
  • The CESS pathway has been a definite driver for change. Three years ago there were no patients with a VNS - now there are 14.
  • The team identified that there was a huge amount of travelling involved for patients not only having to travel to Leeds to get the VNS implanted, but also to have it switched on and periodically ramped up. These children and young people were also often having active seizures, which placed a strain on them and their families.
  • The team decided to set up a specific VNS clinic in Hull (this is a high tariff clinic).
  • One ESN learned first, then the other learnt how to switch on and ramp up the VNS through support from Liva Nova.
  • Now both ESNs run a joint VNS clinic, the only time they get to work together!


Issue: The transition clinic has been running several years. Historically the adult epilepsy service would not accept patients from paediatrics until age 19. This was an obvious issue for young people aged 16 to 18.


  • The issue was identified and the team met to see how they could improve the way transition was handled. Through discussion with the adult epilepsy team the age of transition was changed to be appropriate for the young person. A one page transition proforma is used (using ‘Ready, steady, go!) to prepare the young person. This is introduced before transition and revisited at least 3 times.
  • Joint clinics were also set up with both adult and both paediatric nurses in attendance. Initially this was during the evening, but this was not well attended. Once the team moved clinics to during the day the clinic was well attended and appreciated by both young people and their families.
  • Recently transition has been improved further with young people with moderate to severe learning disabilities being seen by the newest nurse, often in school or at home.
  • The paediatric team holds the young person’s file until the date of their first appointment in adult services. This allows for concerns to be answered right up until transfer and has proved to be reassuring for both parents and young people.

Two-week wait

Issue: The team faced an issue with the wait to see an epilepsy specialist from referral by GP or being discharged from ward following a first seizure.


  • The team sat down to look at how this could be improved and decided to run nurse-led clinics so all patients can be seen within the recommended NICE guidelines.
  • All patients with suspected seizures are now seen in a nurse-led clinic within 2 weeks of referral in a slot within an existing clinic by either of the ESNs.
  • The ESNs are able to provide safety advice, advice about what to do in an emergency, offer their contact details, information about keeping a diary, and advise parents about the importance of and to video a seizure, before seeing the consultant.
  • They can also order ECG, or EEG tests and have the results ready for the first consultant appointment.
  • This provides a continuity of care, alleviating anxiety, and potentially the patient may have less seizures whilst waiting to see a consultant.
  • A new initiative which has proved to be incredibly helpful for both parents and the consultants is the creation of a WhatsApp link. Parents can use this to send secure videos of their child having a seizure to the team’s mobile phone. This allows the team to:
    • observe and assess seizures, both before the first consultant meeting and during the diagnostic process
    • assess whether the seizure is or isn’t epilepsy at a much earlier stage
  • Alternatively, parents set up a You Tube channel linked only to the consultant, this is a far more secure method than using traditional memory sticks.
  • The less than two week wait following a first seizure is achieved through slotting new patients into spaces in every clinic. There is not a separate first seizure clinic. The ESNs run nurse led clinics seeing seven patients in a morning and six in an afternoon clinic, seeing each patient for 30 minutes.
  • The ESNs also try and see patients in clinics closest to their home, but this has to equate with seeing new patients as quickly as possible. The team see approximately 10 new patients a week.
  • Suspected epilepsy patients are mainly referred from GPs, but also from A&E as many children and young people are admitted to the ward for observation.
  • Clinics are different each week, with VNS, transition, special schools and locality clinics timetabled monthly.
  • The team aim for a six-monthly follow up for patients, or 4 months if complex and severe.

Complex patients

Issue: The number of complex patients was rapidly increasing.


  • With the recognition that the number of complex patients was increasing the team looked at how they could support patients with complex needs better.
  • The team instigated ‘the red list’.
  • The whole team meet weekly for supervision, going through the patients on ‘the red list’ regularly with the process being strictly adhered to. This means all members of the team are aware of all the complex patients, so if one person was not around other people could assist working with and take on each other’s patients.

Point of contact

Issue: Feedback was received from patients and their parents and carers asking for easy access to ESNs between their appointment times.


  • The ESNs are now available to be contacted either via the nurses’ secretary or an answering machine, which is always responded to within 24 hours.
  • There is also a dedicated epilepsy nurse email, patients and parents can use to contact the team.
  • The ESNs have an excellent relationship with the A&E staff and will often get calls from A&E colleagues asking for their wisdom!
  • The team also have excellent relationships with the tertiary consultants in Leeds. This helps with smooth transition of VNS implants from Leeds to Hull.
  • Being contactable at any time via phone or email helps patients and their parents stick to the allocated 30 minutes for appointments.
  • The new nurse is now linking with the most complex patients. She has been in post for a year but will not run nurse let clinics until mid-2020. She currently sits in with the ESNs and paediatricians. She is currently working on easy read materials and has recently undertaken a review of the CESS process. She has responsibility for training for the team.

Clinical psychologists

Issue: The number of children with epilepsy and mental health concerns was increasing.


  • There two clinical psychologists linked to the team, one in Hull and one in East Riding. They both have dedicated time to see children with epilepsy. They have joint meetings with the epilepsy team, looking at patients, discussing referrals, and plans for action.
  • In East Riding the clinical psychologist provides tips and strategies to improve cognitive difficulties. They are also involved in the pre-CESS pathway.

A key success factor - relationships

  • The team has a fantastic relationship with their EEG colleagues. They meet monthly to discuss patients and referrals. They are currently piloting electronic prescribing. If the team are worried about a patient a personal call to the EEG team will result in them being as flexible as they can to fit someone in.
  • The team has an excellent relationship with gynaecological team so if a young woman has seizures affected by menstruation the ESNs can refer to the team.
  • The team also have an excellent relationship with the orthotics team for helmets and can refer electronically.
  • These relationships all help with patients being seen in a timely fashion, again the patient is central to the work.

How do the team know the changes have worked?

The team came off a block contract and now everything they do is monitored separately. All clinic codes are recorded separately and the team can see the financial impact of their work.

On-going improvement

The team are continually reviewing and improving. They have recently reviewed their SUDEP process. The whole team are very good at explaining SUDEP at diagnosis, but there is improvement to be made in raising it again on a regular basis. This is something they will look at next.

Having a good level of epilepsy experience within the team helped to identify and make the necessary improvements. The ESNs understood what questions to ask and, given their prescriber expertise, they knew what might be needed to make improvements. The excellent working relationships within the team have also been a key contributing factor to the team’s success.

The consultants have been in post for 10 and 5 years and both have an interest in epilepsy. Two of the ESNs have been in post many years, with a new member of the team recently joining and bringing new ideas.

Summary of improvements made

  • Following a first seizure patients are now seen within two weeks as recommended by NICE. Relevant information is provided, a request for a video is made, a seizure diary is explained plus an EEG is undertaken before the patient meets with the consultant.
  • The service now provides age 14 to 16 nurse led clinics
  • New nurse led VNS clinics have been introduced  
  • Transition clinics have been introduced using ‘Ready, steady, go!’ to prepare patients.
  • Weekly supervision now exists for the whole team focussing on complex patients using the red list.
  • The team have an excellent working relationship with the paediatric epilepsy tertiary service in Leeds
  • There has been an audit of the CESS pathway through parental questionnaires.
  • Easy read information has been produced.
  • New locality clinics have been established – Lemon Tree, (8 years) Central Hull, (8 years) Hornsey, (5 years) Beverley Hospital, (2 years) Mayfleets, (18 months)
  • The DNA rate has been reduced
  • Follow up appointments are now provided within 18 weeks
  • If a patient misses two outpatient appointments the team will refer the parents or carers to social care for advice
  • A monthly complex MDT meeting is now in place.
  • Excellent links with LD nurses exist
  • There is now access to a clinical psychologist who has been commissioned to provide a service for neurology patients
  • The team accept student placements which allows epilepsy to be on their agenda

Summary of how this was achieved

  • An analysis of a patient journey from all stakeholders highlighting points where good practice did not happen, divided into themes with the whole team working out ways of getting round the blockages.
  • Monitoring was undertaken to prove the worth of the nursing service.
  • Not being on a block contract has enabled the team to prove their worth financially.
  • Everything is now coded.
  • Fantastic relationships with colleagues have been developed throughout Hull and the surrounding areas.



An example of effective epilepsy service development

Juliet Bransgrove describes the business case behind expanding the Norfolk epilepsy community service from 1.6 whole time equivalent (WTE) ESNs to 4.5 between 2016 and 2018.


I want to share how the Norfolk adult community service epilepsy specialist nurse (ESN) team expanded between March 2016 and November 2018. The team went from 1.6 whole time equivalent (WTE) ESNs (0.8 Band 7 and 0.8 Band 6) to four WTE Band 7s, 0.5 Band 6 and 1 WTE Band 3. It’s been quite a journey with plenty of learning to impart to anyone else embarking on a similar voyage.

The recipe for success included having lead consultant neurologists’ or neuropsychiatrists' endorsement from Norfolk and Norwich University Hospital (NNUH), Queen Elizabeth Hospital King’s Lynn (QEHKL) and West Suffolk Hospital (WSH). It also involved having patient engagement. I was also fortunate to have Norfolk Community Health and Care (NCH&C) Trust’s support in letting me work directly with the Clinical Commissioning Groups (CCGs).

Our venture was also rooted in best practice guidelines and plans from the NHS to improve care. The National Institute for Health and Care Excellence (NICE) guidelines on epilepsy [NICE, 2012] state that ESNs should be an integral part of the network of care of individuals with epilepsy. The NHS Long Term Plan [NHS, 2019] set out the NHS’s aims for the next 10 years. They include ‘bringing together different professionals to coordinate care better’ and ‘developing more rapid community response teams to prevent unnecessary hospital spells’. This also underpinned the vision for our community ESN service.

The NHS Long Term plan addresses doing things differently. A part of this is encouraging more collaboration between GPs, their teams and community services, to increase the services they can provide jointly. Joined up collaborative approach with patients and their families is a vital factor for our service.

Juliet Bransgrove
Epilepsy specialist nurse
Norfolk Community Health and Care NHS Trust

A background to our services

We serve the population of patients with epilepsy from the age of 16 years across four CCGs – North Norfolk, Norwich, South Norfolk and West Norfolk. This is a community-based service, managing patients in local settings in nurse-led clinics, or through home visits, residential home visits and the telephone. We work closely with the secondary care hospitals and a well-established children’s and adult nurse-led transitional service for patients from the age of 16.

National statistics [JEC, 2011] predict that about 70% of patients could be seizure free on appropriate treatment and 30% will have uncontrolled seizures due to medically refractory epilepsy. Therefore, the vulnerable, at-risk epilepsy population among over 18-year-olds across the four Norfolk CCGs (total over 18-year-old epilepsy population is 5,660) is estimated at 1,698. Additionally, 50% of patients with a moderate to severe learning disability have epilepsy [JEC, 2011].

According to the guidance for General Medical Services (GMS) contract 2018/19, ‘the contractor establishes and maintains a register of patients aged 18 or over receiving drug treatment for epilepsy’ [NHS England et al, 2018]. The register for our service is detailed in Figure 1.

For many years, the small but highly experienced team of 1.6 ESNs covered a large rural geography, which eventually led to a breakdown in resilience and sustainability. It was difficult for the team to promote the service as this would have impacted on an already overstretched resource. The care given was of very high quality but, despite many negotiations and the best efforts of the lead ESN, Dee Elleray, the service was unable to expand.

Our vision for better services

I started in post in April 2016, as the previous Band 7 nurse (Dee Elleray) retired, bringing the team to 1.8 WTE ESNs. On 10 June 2016, I was fortunate to be invited to a meeting with Dr Cochius, neurologist with a special interest in epilepsy, Dr Staufenberg, neuropsychiatrist, and commissioners from North Norfolk CCG at NNUH. There was unanimous agreement that the provision of ESNs across Norfolk was insufficient and  unstainable. Our vision was ambitious: to have one WTE Band 7 and one WTE Band 6 for each Norfolk CCG. Ann Touray, commissioning lead from North Norfolk CCG and I were tasked to make the case for an increased establishment of community ESNs. We had a meeting (with biscuits) to get to know each other and understand each other’s priorities and drivers. We needed to find those all-important hooks, with competing priorities and a challenging financial climate.

We explored all avenues on how we could make the case, starting with the implementation of national guidance NICE quality standards [NICE, 2012]:

  • Statement 4. Children, young people and adults with epilepsy have an agreed and comprehensive written epilepsy care plan
  • Statement 5. Children, young people and adults with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews
  • Statement 6. Children, young people and adults with a history of prolonged or repeated seizures have an agreed written emergency care plan
  • Statement 9. Young people with epilepsy have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services

Evidence on supporting medical teams and financial savings

We had evidence of the effectiveness of the ESNs and the impact their absence had in 2012/13 when both nurses were on long-term leave. Figure 2 illustrates the rise in non-elective admissions seen across all CCGs in this year.

Another compelling factor was saving GP time.

The General Practice Forward View [NHS England, 2016] said that according to an international survey, British GPs are under far greater pressure than their counterparts. They face rising workloads and patient concerns about convenient access. The document explained that the Primary Care Workforce Commission set out how the talents of the wider workforce can be better deployed to reduce the workload burden on GPs. It suggests this would help meet patients’ needs and free GPs up to do what they do best.

We identified that the ESN could achieve this by:

  • Implementing and monitoring medication titrations advised by neurologists
  • GPs being able to task ESNs directly on SystmOne with patient reviews
  • Ensuring clinic letters are communicated clearly and promptly with GPs no later than 14 days after the appointment, aiming for 24 hours
  • Accepting self-referral of patients discharged from the service without the need for GPs to write a referral letter
  • Referring directly to neurologists or neuropsychiatrists for a neurological opinion, saving the GP making the referral
  • Liaising directly with neurologists or neuropsychiatrists by secure email for advice and guidance, including chasing investigations and results
  • Being a point of contact for paramedics to refer patients to the ESN team instead of GPs
  • Organising concessionary bus pass forms, support for benefits applications and appeals, evidence for continuing healthcare decision meetings, referrals onto social services, learning disability teams etc
  • Supporting patients to self-care through high quality care planning with patients and families or carers
  • Undertaking medication reviews
  • Establishing close working pathways with community pharmacists
  • Reducing the associated mortality rates of avoidable deaths through care planning and education of both patients and families or carers about risk and safety issues. This includes mitigating risks of sudden unexpected death in epilepsy (SUDEP)

Other factors that supported our cases included improving demand management by freeing up neurologists’ and neuropsychiatrists’ time. This allows for more appointments for new patients, thereby reducing the waiting lists for new patients to be seen within the 18-week target. This would realise a financial saving of £116 per follow up appointment.

The tools we used

We used the NHS Rightcare Commissioning for Value Pack [NHS Rightcare, 2016] which demonstrated where the four Norfolk CCGs were an outlier compared to the 10 most similar CCGs, in either:

  • Non-elective spend
  • Achieving seizure freedom in past 12 months
  • Spend on anti-epileptic medication
  • Mortality rates

We used guidance on what the ideal caseload for an ESN should be. We referenced the research undertaken by Fiona Irvine [Epilepsy Action, 2010] where she acknowledged that a recognised caseload for a 1 WTE ESN should be 250 patients.

Initially, only 250 patients out of a possible 1,698 (with refractory, uncontrolled seizures) across the four Norfolk CCGs were registered with the service. Those patients not known to the service were likely:

  • To not have appropriate care plans drawn up
  • To not have medication reviews
  • To be at risk of injury and harm due to safety advice not being given, including at preconception and during pregnancy
  • To be at risk of poor self-management through lack of training
  • To potentially make unnecessary visits to A&E (with associated ambulance costs)
  • To potentially make unnecessary visits to GP practices
  • To have higher than expected, inappropriate prescribing of emergency medication (buccal midazolam)

We agreed the key performance indicator for the service would be at least 95% of patients on the ESN caseload to have a seizure care plan. These would have a read code attributed to them on SystmOne to allow for monthly monitoring.

We were lucky to be able to use SystmOne through working for the NCH&C Trust. Through this, the Commissioning Support Unit (CSU) was able to provide data on various aspects. These included the patients referred to the service since 2015, the amount of A&E attendances and admissions, and cost a year prior to and post referral. They could also inform on the number of appointments with neurologist and the cost, again a year pre- and post-referral to the ESN service. Both datasets provided the crucial evidence to forecast the financial savings for the business case.

Outcomes of more ESNs at the service

North Norfolk CCG commissioned 1 WTE Band 7 in February 2017. The task was then to present to a planned care meeting with all the CCGs across Norfolk with endorsement of the Clinical Commissioning Board. This happened in September 2017 and, one by one, three more CCGs came on board. This involved working closely with each CCG, making the business case come to life from a clinical perspective. Once the business cases were accepted from a clinical and quality need for patients, the next step was selling the case in five minutes at a clinical executive meeting.

The respective clinical executive reference groups strongly supported the proposal. Comments made included:

  • “This is a patient cohort who would benefit from enhanced specialist support as they are not known well by GPs”
  • “This will have a positive impact for patients’ quality of life, including reduced hospitalisation”
  • “A suggestion would be to see whether we can learn from learning disability mortality reviews”
  • “Education for families and patients is key to reducing risks”
  • “It will reduce workload for GPs”
  • “It does not feel like the enhanced service would need to visit all GP practices as new referrals would be easily identifiable”
  • “One proposal would be to recruit to the Band 7 ESN initially and then the Band 6 ESN when caseload demand required it”
  • “The service would have a quick route back in for patients when their situation started to destabilise”
  • “Transition from paediatrics to adults will be carefully managed”
  • “Improved patient outcomes plus supports new model of care, Quality, Innovation, Productivity and Prevention programme (QIPP), demand management, and GP Forward View”
  • “This will provide coordinated management with the neurology departments, GPs, practice nurses and pharmacists to implement the MHRA pregnancy prevention programme for women of childbearing potential taking sodium valproate”

The outcomes have been significant. We have grown from seeing patients in six locations to 23 across the geography of the four CCGs. These venues range from NCH&C hospitals and clinics, GP practices, secondary care hospitals and residential homes. Patients can also be seen at home where reasonable adjustments need to be made for patients with a learning disability. This has led to a dramatic decrease in the ‘did not attend’ rates, from 20% down to 0% in some months, and improved patient satisfaction of the range of appointment settings.The monthly reporting  from the CSU is showing a downward trend in admissions, A&E attendances and neurology outpatient appointments and an increase in cost savings.

We have been fortunate to recruit Dee Elleray out of retirement as the 0.5 WTE Band 6 ESN, to focus on the MHRA pregnancy prevention programme.

The caseload for our service has grown from 250 in April 2016 to 1,110 in February 2019. Patients who have been seizure free for 12-18 months have been discharged, with self-referral back to the service if needed.

The seizure care plan has been reviewed and updated following feedback from patients, families and carers. We have been able to achieve our target of 95%.

Pathways have been set up to integrate the service with teams where a patient presents with seizures. There is a greater awareness of the team, leading to the increase in referrals. This has resulted from attending GP practice meetings and promoting the service and how it can support GPs and patients. Joint working with the neurology departments at NNUH, QEHKL and WSH has also been instrumental.

We have been able to work closely with the voluntary sector, specifically the Epilepsy Action coffee and chat group in our area. This was an award-winning group of the year in 2018. The group has helped with reviewing the care plan and service leaflet, making sure it reflects the needs of people with epilepsy. We have 52 funded places for the online self-management 'Epilepsy and You' course, through Epilepsy Action and Coventry University. This uses the Patient Activation Measure to test the activation improvements from undertaking the course.

The team works as one Norfolk service, based from Dereham hospital in the centre of Norfolk. We have one phone number so if one of the team are on leave a patient or family member can always speak to an ESN for advice. The access to SystmOne allows for proactive continuity of care and direct communication with GPs. The NHS Long Term Plan also describes backing the NHS workforce. It said “we will also make the NHS a better place to work, so more staff stay in the NHS and feel able to make better use of their skills and experience for patients”.

Our expanded service quickly got a very favourable reputation as a team nurses would want to come and work in. This was demonstrated by the final recruitment for the South Norfolk post attracting five highly qualified candidates, internally and externally, applying for the post.

What's next?

Now the team is formed, but our work has just begun. We will aim to enhance the pathways we’ve started, especially working closely with out-of-hours and ambulance services. We have signed off the contract variation with the four CCGs and have a comprehensive monthly reporting on all the outcomes including service development.

Once we have proved the worth of the investment in our new establishment, we will also be looking to commission a community ESN for Great Yarmouth and Waveney CCG. This post will complement the newly appointed adult ESN at the James Paget University hospital.

We are happy to share the business case and have already had enquires from CCGs and neurology departments across the country.

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