Tony Marson and Pete Dixon address the practical challenges facing specialised commissioners in improving and expanding epilepsy services
The NHS is struggling to provide integrated care for epilepsy, with emergency care being left to pick up the pieces at an unsustainable cost; between 2007 and 2013, an average of £88.2 million per year was spent on admissions for suspected seizures in England.1
Service managers, commissioners, and neurology leaders in the NHS must work together to reduce referral bottlenecks and introduce an integrated epilepsy pathway with a focus on patient outcomes and service quality. However, epilepsy is challenging to manage because seizures are episodic and unpredictable: it affects people across the age spectrum, it is associated with significant physical, psychological, and social co‑morbidities, and there are many different seizure types and epilepsy syndromes (as classified by the International League Against Epilepsy).2,3
Evidence suggests that 70% of patients with epilepsy can become seizure-free with antiepileptic drug (AED) treatment, but nationally only 52% achieve seizure control.3 The remaining 18% may become seizure-free with appropriate management, and those with uncontrolled epilepsy may experience fewer seizures and be better managed in the community to avoid the need for emergency admission. The challenge is to design and deliver services that will meet these needs in light of financial and workforce constraints.
… 70% of patients with epilepsy can become seizure‑free with … treatment, but nationally only 52% achieve seizure control.
It is also important to highlight that epilepsy is largely a clinical diagnosis that requires specialist expertise to distinguish seizures from other causes of black outs and ‘funny turns’. The most common alternative cause is syncope; however, many patients with obvious syncope are currently put on pathways for seizure rather than transient loss of consciousness, adding an unnecessary burden to seizure services.4
The patient-centred care challenge
The focus of epilepsy treatment is to help patients control their epilepsy and achieve seizure freedom, allowing them to go about their day-to-day lives without fear of seizures. Many patients will achieve seizure freedom, but even for the patients who do not, achieving a significant reduction in the severity and frequency of their seizures would be a good outcome, as it would still greatly improve their quality of life.
Epilepsy is associated with significant stigma, so it can be socially isolating. This isolation only serves to make the stigma worse, because the public witnesses fewer seizures and becomes less aware of it than perhaps they should be. The healthcare system needs to help patients feel less like outsiders and tailor services to their needs by improving access to those services, for example through advice lines and epilepsy specialist nurses (ESNs). ESNs can offer routine guidance, support, and onward referral to an epilepsy specialist (usually a neurologist) where necessary.
The healthcare system needs to help patients feel less like outsiders and tailor services to their needs …
Neurologists and ESNs know that what works for one patient may not work for all, and they need to offer a range of treatments that are appropriate to each patient’s experiences and circumstances to achieve the best outcomes. Patients with poorly controlled epilepsy may require treatment with two or more AEDs and, in some cases, brain surgery may also be an option.5
Regular review with a neurology or ESN prescriber is necessary in the early stages to monitor seizure control and adverse effects in order to ensure the best outcomes. Epilepsy services must also respond to the particular needs of women of childbearing age (a third of people with epilepsy),6 for whom contraception and the risk of teratogenicity pose particular challenges, as well as the needs of those with co-morbidities, such as intellectual disability.
Understanding unmet patient needs
Providing tailored treatment for patients with chronic disease starts with a deep understanding of what patients need. The anonymous and de-identified comments of 500,000 patients were collected from some of the largest public forums for chronic diseases between 2010 and 2018, including general ones such as Patient.info, Inspire.com, and DailyStrength. org, along with more condition‑specific forums like Crohn’s Forum, BreastCancer.org, and ALZConnected, in an attempt to understand the unmet need from the collective voice of these patients.7
Providing tailored treatment for patients with chronic disease starts with a deep understanding of what patients need.
The comments were broadly categorised into either medical needs or emotional needs,7 and although not all comments were attributed to UK patients with epilepsy, there are lessons to learn about where patients feel their unmet need most acutely. For those patients with epilepsy, understanding of medications, side‑effects, and awareness of alternative treatment options ranked in the top eight unmet needs, as well as understanding epilepsy, its causes, and coping with daily life.7
Commissioners should acknowledge the gaps in services that these comments expose and address any deficiencies. A chronic disease service specification designed to provide patients with access to expert advice and guidance from a number of sources, not just face-to-face consultations, can support efforts to discover and address unmet need.
The quality improvement challenge
NHS England and NHS Improvement are working to improve the quality and productivity of epilepsy services by reducing the number of treatment failures that result in emergency admission. This works on the assumption that getting the quality of care right first time will control the overall cost of care and provide a better, more reliable quality of life for patients.
NHS England’s specialised commissioning neurosciences transformation programme includes an epilepsy workstream that has identified an ‘optimum clinical pathway’ to inform commissioning. In combination with other initiatives associated with the National Neurology Advisory Group, including NHS RightCare’s Commissioning for Value CCG focus packs and the Getting It Right First Time data deep‑dives, the project will encourage CCGs (and local partnership boards) to prioritise epilepsy within their sustainability and transformation partnership (STP).
After working out what a high‑quality service looks like in terms of the patient pathway within a local or regional footprint, the next step will be to determine whether such a service can be scaled up, with the aim of defining an optimum model for epilepsy care that can be rolled out across neurology services nationwide.
The service-wide model will then be tested across a local footprint to refine it. Following testing, tools will be developed to support regional specialised commissioning teams with the implementation of the model (years 3–5 of the programme of work). Other outputs from the work will include guidance on pathways, revisions to new service specifications as needed, and informative examples of best practice. Any changes to the provision of specialised neurology services will also be made during the implementation phase.
The clinical management challenge
The role of GPs in epilepsy care has traditionally been peripheral, although their perceived importance in preventing the deterioration of epileptic seizure control is increasing; the quality statements in the NICE Quality Standards (QS) for epilepsy in adults (NICE QS26)8 and children and young people (NICE QS27)9 provide a blueprint for extending or enhancing primary care epilepsy services as part of an integrated care pathway.
The NHS Long Term Plan acknowledges that primary care faces a challenge in finding the capacity necessary to meet patient needs, but also details how the NHS intends to develop the role of primary care and create ‘fully integrated community‑based healthcare’ hubs.10 Box 1 details some of the ways that commissioners can integrate primary care into epilepsy pathways.
Box 1: Primary care engagement challenge
Commissioners can achieve integration of primary care into an epilepsy care pathway in a number of ways, for example:
- Ensuring patients have adequate access to an ESN, particularly in deprived areas, as their skills are widely applicable for communicating with primary care. They can fulfil a wide variety of roles, such as:
- acting as a first point of contact for people with epilepsy, directing care, and identifying appropriate patient pathways
- ensuring patients have access to AED treatment and a care plan, which will make it easier for patients and carers to access treatment and referral when there is a dip in seizure control
- care plans with a community emergency element should offer telephone access to an ESN so that patients and carers can receive prompt advice about whether to attend the emergency department in the event of an incident
- optimising AED treatment to reduce the impact of epilepsy on patients and the number of emergency admissions
- taking a lead role in dose titration and adherence to help patients benefit fully from their AED treatment while not exposing them to seizure episodes resulting from maintenance on a sub-therapeutic dose for longer than necessary
- assessing the ongoing effectiveness of AED treatment in the community, including whether lifestyle factors (e.g. alcohol or drug use) are reducing efficacy
- if they are qualified as independent prescribers, enhancing the primary care multidisciplinary team and improving quality of care by responding directly to a patient’s changing needs by optimising their treatment
- pharmacist prescribers can also fulfil this role
- Improving local access to care where patients live to try and avoid patients ‘falling through the net’ and being repeatedly admitted via emergency care:
- consider assertively reaching out to homeless shelters and charities to extend coverage to homeless patients and those with more chaotic lives
- Ensuring GPs have access to an up-to-date summary of a patient’s ongoing treatment in their medical records
- Arranging for patients with epilepsy to have their care plan reviewed regularly, at least annually
- Introducing patient group sessions to give epilepsy patients an opportunity to meet and offer peer support; this will help to reinforce the value of their care plans and allow them to share their concerns
- Involving partners, family members, and carers in care planning; this allows them to actively support patients when they experience an episode of poor control.
ESN=epilepsy specialist nurse; AED=anti-epileptic drug
Neurology clinical directors will also need to lobby locally for a share of workforce development funding, which is to be devolved to local STP budgets11 so that some resources are secured for capacity and demand planning for epilepsy care. This funding will help to increase the number of ESNs, who are vital for the coordination of care and timely review of patients.
The integrated commissioning challenge
A division of responsibilities and budget of this kind can sometimes lead to misaligned incentives, insufficient investment in preventative interventions, and fragmented patient care.12
The need for integrated commissioning is identified by NHS England, who have suggested bringing local and national commissioners together to plan services, enabling them to:12
- ensure that services are built around the unique needs of the local population
- give local systems more influence on the spending of specialised budgets in their area
- guide decision making by using the insights local systems have into the needs of their patients.
NHS England recommends forming local specialised commissioning planning boards, which should prioritise those areas like epilepsy where there is a clear overlap with locally commissioned services. Many of NHS England’s proposals in this area are laid out in Annex E of the NHS Operational Planning and Contracting Guidance 2019/20.12
The network challenge
At present, healthcare sectors are often working in silos, which can result in patients getting ‘stuck’ in tertiary care. Without adequate networks between tertiary and secondary care, or systems able to facilitate better networks, there is unlikely to be enough clinician or patient trust to confidently repatriate to secondary care. Patients can get similarly ‘stuck’ in secondary care when care can be provided in the community, or there is a failure to refer to tertiary care. To try and solve this, networks should incorporate the community, secondary, and tertiary care sectors to increase capacity and improve confidence among partners.
The public health challenge
Between 2007 and 2013, there was an annual average unplanned care ‘iceberg’ of 50,111 unscheduled admissions among adults for suspected seizures nationally, with over half of these coded as epilepsy or status epilepticus.1 Without adequate opportunities to access expert advice and support, patients who present this way are more likely to access services chaotically during episodes of poor control in the future.
Non-elective (unplanned) admission of patients with epilepsy constitutes a considerable financial risk for commissioners, and successful prevention may create savings that can be reallocated further downstream in the pathway to prevent loss of seizure control in the first place. Each emergency admission has been estimated to cost £1,651,1 and some patients can be admitted multiple times a year, causing costs of non-elective care to escalate further.
Registries and the real-world evidence challenge
A good knowledge of the local epilepsy cohort and their expectations is key to helping them regain control of, and achieve freedom from, their seizures. Patient registries offer a way of studying patient outcomes in the real world, and offer NHS epilepsy clinical leadership an opportunity to closely follow epilepsy and prospectively assess the usefulness of different approaches to treatment by collecting data on outcomes and safety after 3, 6, and 12 months.
There is considerable unmet need in epilepsy, with 30% of those with epilepsy unresponsive to current AED treatment options,3 and highly refractory patients represent a considerable challenge to commissioners because of the high cost of unplanned care associated with them.
The data ‘analysis to insight’ challenge
Using Hospital Episode Statistics, the Connected Health Cities (CHC) team at Liverpool University have superimposed epilepsy hospital activity data on to small units of population called Lower Super-Output Areas (LSOA), which comprise 1000–3000 people.13 The CHC team has developed an algorithm to take account of epilepsy as a primary and secondary cause of admission to understand the true extent of unplanned care in epilepsy.14 This will allow mapping of epilepsy down to the local level, and the information this provides about how and where patients access services will enable planning of services for those local communities generating most of the non-elective activity at their local hospital trusts. This data analysis will also provide a basis for service configuration for the new Primary Care Networks (PCNs, each of which covers a population of 30,000–50,000 people)15 by aggregating data from 20–30 LSOAs that are in the same geographic area as the PCN.
Smart data analysis like this allows intelligent service innovation around the needs of patients and facilitates far deeper integration of care within the local service infrastructure, rather than leaving patients to randomly access emergency care.
The leadership challenge
The national leadership challenge in neurology is to facilitate, empower, and inspire confidence in neurologists and their teams to plainly articulate the needs of their service. If they can clearly explain how their service can be improved, it will be that much easier for epilepsy care to enter the healthcare mainstream and break the cycle of readmission.
Those leading service transformation should be focused on how to spread the excellent epilepsy care already available within neuroscience centres to other hospitals, and increasingly primary care hub practices, so that outstanding epilepsy care can be accessed across the pathway.
The quality of the outcome defines the value of the service, and so how services are designed to maximise their responsiveness is key. With a strong epilepsy service, patients can then win in their struggle to control unpredictable epileptic seizures.
Connected Health Cities is a Northern Health Science Alliance (NHSA)‑led programme funded by the DH and delivered by a consortium of academic and NHS organisations across the North of England. The work uses data collected by the NHS as part of their care and support. The views expressed are those of the authors and not necessarily those of the NHSA, NHS, or the DH.
- Dickson J, Jacques R, Reuber M et al. Emergency hospital care for adults with suspected seizures in the NHS in England 2007-2013: a cross sectional study. BMJ Open 2018; 8: e023352.
- Fisher R, Cross H, D’Souza C et al. Instruction manual for the ILAE 2017 operational classification of seizure types. Epilepsia 2017; 58 (4): 531–542.
- Epilepsy Action. Epilepsy facts and terminology. www.epilepsy.org.uk/press/facts (accessed 3 September 2019).
- Smith P. If it’s not epilepsy. J Neurol Neurosurg Psychiatry 2001; 70 (suppl II): ii9–ii14.
- NICE. Epilepsies: diagnosis and management. NICE Clinical Guideline 137. NICE, 2018. Available at: www.nice.org.uk/cg137
- Epilepsy Research UK. How do women with epilepsy take decisions about pregnancy? www.epilepsyresearch.org.uk/research_portfolio/how-do-women-with-epilepsy-take-decisions-about-pregnancy/ (accessed 3 September 2019).
- Tewarie B, Bailey V, Rebarber M, Xu J. Unmet needs: hearing the challenges of chronic patients with artificial intelligence. catalyst.nejm.org/unmet-needs-patient-forum-chronic-patients/ (accessed 3 September 2019).
- NICE. Epilepsy in adults. NICE Quality Standard 26. NICE, 2013. Available at: www.nice.org.uk/qs26
- NICE. Epilepsy in children and young people. NICE Quality Standard 27. NICE, 2013. Available at: www.nice.org.uk/qs27
- NHS England. The NHS Long Term Plan. www.longtermplan.nhs.uk (accessed 3 September 2019).
- Collins A. Responsibility for NHS workforce to be devolved locally. www.hsj.co.uk/workforce/responsibility-for-nhs-workforce-to-be-devolved-locally/7024581.article (accessed 3 September 2019).
- NHS England. NHS operational planning and contracting guidance 2019/20. Annex E—integration of specialised services with local health and care systems. London: NHS England, 2018. Available at: www.england.nhs.uk/wp-content/uploads/2018/12/ANNEXE1.pdf
- Office for National Statistics. Lower layer Super Output Area population estimates (supporting information). London: ONS, 2018. Available at: www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationestimates/datasets/lowersuperoutputareamidyearpopulationestimates
- Grainger R, Pearson M, Dixon P et al. Referral patterns after a seizure admission in an English region: an opportunity for effective intervention? An observational study of routine hospital data. BMJ Open 2016; 6: e010100.
- NHS England. Primary care networks. www.england.nhs.uk/primary-care/primary-care-networks/ (accessed 3 September 2019).