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.
Improving patient 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.
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.
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.
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.
Epilepsy specialist nurse
Norfolk Community Health and Care NHS Trust