YEBEH-05426; No of Pages 5 Epilepsy & Behavior xxx (2017) xxx–xxx
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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
The European Association of Epilepsy Centers
The William Quarrier Scottish Epilepsy Centre, Glasgow, Scotland Aline J.C. Russell ⁎, James Anderson, Saif Razvi, Maria Oto, Joanne Hill, Gerard Gahagan
1. Historical background and recent developments The William Quarrier Scottish Epilepsy Centre (SEC) opened its new purpose-built, 12-bedded assessment unit for adults and young adults with complex epilepsy in April 2013. This transformation reflects the philanthropic activities of William Quarrier, a mid-nineteenth century philanthropist whose vision was to provide a protective and productive environment for vulnerable young people including those with epilepsy. Raised in poverty — his initial concern was for the plight of homeless children who roamed the streets of Glasgow, one of the poorest, most deprived, and overcrowded cities in Europe at the time. His first venture was to bring young people into employment in his boot- and shoemaking business — the Shoe Black Brigade. In return, they received an education. Later, he opened two homes for destitute children in Glasgow and then raised further funds to establish a children's village away from the city center. The Orphan Homes of Scotland was opened in 1878 — comprising of cottage homes along the lines of Dr. Barnado in England and the Rauhes Haus model of Johann Wichern in Germany. Quarrier then turned his attention to those incapacitated by incurable illness, particularly tuberculosis — opening Scotland's only sanatorium for tuberculosis. He was also the first in Scotland to show concern for people with epilepsy — considered a much stigmatized untreatable condition where many afflicted ended up in the poorhouse or asylum. After Quarrier visited the newly established Chalfont ‘Colony for Epileptics’, he raised £20,000 for his ‘Colony of Mercy’ for epileptics, which opened in 1906, 3 years following his death, at Bridge of Weir, a small village 20 miles from Glasgow. The ethos of the new colony was more a caring environment than medical; and patients were expected to work if able in the workshop and gardens. An extract from the medical officer's report from 1916 reads: ‘The medical work is really difficult. From the point of view of cure, it unfortunately is rather disappointing. Every case is studied, and each patient is treated individually. A few have their seizures apparently permanently arrested by drugs. Some are not influenced at all by medicines. A number are best when not receiving any form of prescription. We try many remedies. The disease seems to be a composite one, and the drug which to one patient is of inestimable value, to another is quite worthless. Our constant endeavor is to sift out the real cause of the disease, and by drugs or otherwise, remove that. There were 19,677 fits in the Colony during the year: 12,775 among the males, and 6,902 among the females (out of 102 patients).’
However, by the 1950s, the village had become increasingly isolated and institutionalized. Funding was now obtained coming from public authorities (to provide social care) rather than from donations. But, by 1950, a new technology was in use. ‘The (4 channel) electroencephalograph is being continually used in the study of our patients, and has been of particular help in children, where more definite abnormalities are found and changes in their records follow closely the clinical improvement.’ By the 1970s, the need for specialist medical input as well as social care was clear. The name Colony of Mercy was changed to the Epilepsy Centre, and as Quarrier had done in the 1880s, Dr. James Minto, the superintendent at that time, visited the epilepsy center at Chalfont, which had undergone a transformation from an institutionalized epilepsy colony and which now also included a medium-term assessment unit for patients with complex epilepsy. This had been achieved by Dr. John Laidlaw and his wife Mary, who was a nurse. Laidlaw, who also had an interest in EEG and antiepileptic drugs, particularly their adverse sedative effects from overtreatment, was then appointed, in 1979, by Minto as Chief Consultant to facilitate a similar transformation in Scotland. In 1980, in an annual report, it was stated: “As the national centre in Scotland we have a further function to act as a focus for education and training and to provide a shop window so that the general public can see how well even those considerably disabled can live and work happily and successfully despite their disadvantage. It is important to appreciate that the centre is an active and positive community, not a last resort ready to accept passively social casualties. Our centre is certainly not an institution, but it is quite large and it is a long way away from the homes of some of our residents. Therefore we must define very carefully those people whom we feel we can help…. Long term residents — These are those who have made the centre their home and for whom our community is a second family…Short term patients. Most people with epilepsy are able to manage on their own or perhaps with appropriate support…. However, there are quite a number who run into temporary difficulties…their seizures get out of control, they may be having too many or the wrong tablets…[or]… developed faulty attitudes to their epilepsy with consequent behavioral disturbances, or simply be overwhelmed by…problems. If these difficulties are not sorted out…a vicious cycle may be set up…until the patient becomes irrevocably a social casualty, unable to cope with ordinary living. …[Whereas] after a short
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Please cite this article as: Russell AJC, et al, The William Quarrier Scottish Epilepsy Centre, Glasgow, Scotland, Epilepsy Behav (2017), http:// dx.doi.org/10.1016/j.yebeh.2017.07.029
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term admission, could return to live ordinary lives in the open community. We have just taken delivery of a very advanced EEG system which makes it possible to record…for 24 hours…. This promises to be a great value both in planning treatment and in determining whether or not all attacks are epileptic.” Epilepsy monitoring with drug levels and ambulatory EEG to capture diagnostic attacks were, therefore, standard practice in the 1980s, while Mary Laidlaw was concerned with the more holistic needs of people with epilepsy. Laidlaw also supported psychological input for patients and collaborative research, e.g., with the Royal Hospital for Sick children, Glasgow — into Rett's Syndrome. The center was, however, still not well integrated with National Health Service (NHS) services, and following the Laidlaws' retirement in 1989, the epilepsy center was brought closer to mainstream health services with the successive appointments of further clinicians with interests in epilepsy: Drs. Jane Gray, Maria Oto, and Rod Duncan. The SEC now works in close partnership with the NHS with funding for patient assessments now coming from the NHS rather than social services. There was increasing integration with local health services including the west of Scotland epilepsy service based at Institute of Neurological Sciences at the Southern General Hospital in Glasgow — now part of the newly opened Queen Elizabeth University Hospital (QEUH). This has facilitated the development of specialist epilepsy nurse services, enhanced research, teaching, and improved clinical governance. The NHS and Community Care Act of 1990 required the dispersal of patients out of long-term institutional care into the community; but there was a continuing need for a medium-term residential assessment unit for patients with complex epilepsy and special needs. Quarriers continued to support, through contracts with social care, vulnerable adults living in the community including people with epilepsy. But by the late 1990s, the old and isolated assessment center at Bridge of Weir, sited in a much diminished ‘village’, where many of the original 19th century homes had been sold and converted into private homes, was no longer fit for purpose. The new Scottish Epilepsy Centre (SEC) came about as the result of a very successful fundraising campaign (£6,400,000) headed by a modern day philanthropist, Bill Scott, with significant donations from local businesses from around Glasgow and, to reflect the modern era, significant contributions from NHS boards and Scottish Government. The center continues to be owned by the charity, which bears William Quarrier's name, but now operates in close partnership with NHS Scotland, which also funds each patient stay in the SEC. 2. Service population The service population consists of any adult patient living in Scotland (population 5.6 million) with complex epilepsy or diagnostic issues that cannot adequately be assessed either as an NHS outpatient or following EEG monitoring in an NHS hospital and whose neurologist considers that a longer period of residential assessment with video and EEG is required. A small number of patients are also admitted from outside Scotland, particularly Northern Ireland and from the north of England. Referrals to the Scottish Epilepsy Centre are made in keeping within a nationally agreed framework for indications including the following: 1. Diagnostic clarification of epilepsy and epilepsy mimics, 2. Review and change of treatment strategies in a safe environment, 3. Classification of epilepsy and localization of focal epilepsy toward consideration of epilepsy surgery, 4. Review and optimization of rescue medications, and 5. Specific psychological and psychiatric evaluations and interventions. The SEC admits around 120 people (average age: 36 years, range: 14–78 years) per year with an average length of assessment of
23 days. Over 95% of individuals are on antiepileptic drugs (AED) on admission. The most common reasons for assessment are diagnostic clarification (72% of admissions) and review of treatment strategies (28%). The diagnoses at completion of assessment include epilepsy (30–40%), psychogenic nonepileptic seizures (PNES, 30–40%), and the remainder having a combination of epilepsy with PNES. Since 2015, younger patients, aged 14–16 years, are admitted with their parents with the support of pediatric neurology nursing and medical teams based at the Children's Hospital, Glasgow. 3. Main sectors of the SEC and strategic advantages of the services offered The SEC is a small independent hospital with only 12 beds, all in en suite single rooms. One of these beds is adapted for sleep studies and also for patients referred from forensic psychiatry services. Two bedrooms are connected to carer bedrooms, which allow parents or carers to stay with the patient during their stay. This is particularly helpful for young patients, those with significant psychological or psychiatric issues, and those with significant intellectual impairment. The bedrooms surround an inner courtyard and garden and link to a large dining area and two sitting rooms. There is also an activity room and a bathroom specially adapted for severe physical disability. The SEC, therefore, offers a compact yet welcoming environment with a small multidisciplinary team who work closely together. The unit is comfortable and relaxed, allowing most patients to tolerate admissions lasting several weeks. The old center at Bridge of Weir had embraced the ‘new’ technology of EEG monitoring. The ‘new build’ offered a great opportunity to start again with the latest technologies available. Our patients did not like being confined to their bedroom for cable EEG telemetry. So, while planning the new SEC, Dr. Aline Russell (Clinical Neurophysiologist, who has led the developments in EEG for more than 20 years) and Ms. Joanne Hill (Clinical Nurse Specialist) visited Thea Gutter at the Zwolle Center in the Netherlands where they were beginning to trial wireless EEG. We then designed a system of nearly complete camera coverage (bathrooms and carer bedrooms are excluded) with the ability to co-reregister with ambulatory EEG (wireless video-EEG telemetry (VT)). This has provided the unique ability, over a period of time, to examine and categorize patient events, an option that is not available in conventional NHS settings. The VOS (E.E.G. Technologies b.v.) system records sound as well as video in all patient bedrooms, communal and outdoors areas. If an event occurs, nurses will also record it, along with interrogation of the patient, using hand-held cameras for additional information. In the case of the not uncommon experience of a patient reporting an event later, or, only the end of an event; all video feeds are retained for a period of around 48 h so that camera footage (often from multiple angles in the public spaces) can be reviewed retrospectively and clinical events retained. As the EEG (Compumedics) is coregistered with VOS patients requiring EEG, the need for this is individually tailored during their stay. Patients remain free to roam, provided they tell the nurses where they are roaming to, without any other interruption of their normal activities. They are no longer confined to one area during EEG recording. Patients requiring to leave the unit can remain on an ambulatory EEG system, which is also used for patients spending a few days at home, especially those who report frequent events at home but experience none while in the unit. The SEC has a long record of integrating novel technological systems into the assessment of epilepsy. Continuing that tradition, we are also trialing a number of home VT systems to extend and complement our inpatient monitoring environment. In addition, patients interact with, and are observed by an expert nursing team experienced and trained in epilepsy, PNES, and learning disability. This also often brings to light certain factors that can help determine why some attacks occur and how they might be associated with behavior. Particular behaviors may be identified as e.g., post-ictal, or the triggers of PNES may be successfully identified. Often, multiple prior
Please cite this article as: Russell AJC, et al, The William Quarrier Scottish Epilepsy Centre, Glasgow, Scotland, Epilepsy Behav (2017), http:// dx.doi.org/10.1016/j.yebeh.2017.07.029
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outpatient consultations have failed to identify these factors. The SEC, therefore, addresses and meets the shortcomings of conventional VT units. The length of admission, safety ethos, and the patient freedom that the SEC provides, permits medication reduction and optimization in those patients with complex presentations, and allows individuals with learning disabilities to be accommodated in a friendly, quiet, and nonchallenging environment; with facilities for carers, physical, and behavioral needs. The SEC invests significant effort in identifying and measuring clinical outcomes. All patients admitted to the SEC have a list of desired outcomes on admission. Outcomes are assessed on a rolling basis, and the data are fed back to referring clinicians as well as NHS organizations. The primary aim of admission is achieved on average in approximately 95% of patients each year. 4. Personnel and organization The SEC (through the not-for-profit charity Quarriers) employs their own nursing, care, and administrative and catering staff (22 full-time staff). A Nurse Manager is responsible for a team that includes Senior Nurses, Registered Nurses, and skilled Healthcare Assistants. The head of service (Gerard Gahagan) is responsible to regulators for the management of the independent hospital. In Scotland, all independent hospitals are required to be registered with the Scottish Government healthcare regulatory body ‘Healthcare Improvement Scotland’ (HIS). Healthcare Improvement Scotland provides regulatory scrutiny including inspections to monitor quality of services delivered. The Scottish Epilepsy Centre demonstrates top of the sector performance scoring ‘very good’ or ‘excellent’ across all themes inspected by HIS. To support best clinical practice for person-centered, safe, and effective outcomes, the SEC has recruited a Clinical Governance Board. This is an independent group made up of volunteers with clinical expertise, who inform Quarriers Board of Trustees by providing scrutiny and reassurance concerning matters of clinical governance. The medical team, includes a neurologist, a neuropsychiatrist, a neuropsychologist, and a clinical neurophysiologist. All have a special interest in epilepsy, are contracted from the NHS and hold appointments at the SEC. Neurophysiology expertise is provided by a full-time senior neurophysiology technician, supported by technical staff based at the nearby Queen Elizabeth University Hospital (QEUH) clinical neurophysiology department. Clinical physics is also contracted in to provide local support for the VOS and EEG systems. Qualified nursing support (form both general and learning disability trained nurses) is available 24 h a day. Out of hours support is provided by the neurology service of the QEUH. Quarriers provides an excellent IT support service — critical for the effectiveness of the technology in place at the SEC along with other administrative support (human resources, grant application and promotional support). Patients admitted to the SEC are temporarily registered with a local NHS general practice, which looks after their general medical care. Essential to the functioning of the SEC is an expert senior epilepsy nurse specialist who is also a nurse prescriber. She plays a crucial role: reviewing patients daily with the SEC nurses, liaising with medical and neurophysiology staff, and monitoring and adjusting drug charts as required. She coordinates the weekly multidisciplinary team unit meeting when all patients are discussed along with proposed admissions, and liaises closely with medical staff over referrals to the unit and with outpatient clinics. Because some of our patients come from quite remote areas, telephone consultations are common and the SEC also has a telemedicine facility supported by the Scottish Centre for Telehealth, enabling doctors and patients from remote areas to access the service. We also have a number of temporary research staff, students, and trainees. The SEC offers training placements of varying lengths in medical, nursing, psychology, and neurophysiology for students from three universities. We have a visiting fellow, Dr. Aileen McGonigal from Marseille, who supports research at the SEC.
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5. Cooperation and networking, especially with the university hospitals The SEC has national ambitions. It aims to provide a national presence and serves to champion the needs of those people with epilepsy. Our experience is that healthcare and patient needs are becoming more complex. Scotland, like many developed nations, is faced with an aging population — often with multiple conditions. We, therefore, believe that working across different services and organizations can transform epilepsy care in Scotland. Currently, we have links with patients, the Scottish Government, charity, and health boards along with local universities. We are a formal member of the European Association of Epilepsy Centers, the National Advisory Group for Neurological Conditions (for the Scottish Government), and the organization, which brings together those with a charitable interest in epilepsy (the Epilepsy Consortium). The Scottish Government vision is to be “consistently person-centered, effective and safe for every person, all the time”. This ambition has guided the building of the SEC, while the NHS, Scottish Government, and charities, as well as hospital trusts, individuals, and organizations have worked together to make the SEC a reality. Our relationship with our university hospital, the newly opened QEUH, which includes the Glasgow Institute of Neurological Sciences and the Children's Hospital, has been strengthened by the proximity with the resited SEC, and medical and technical staff holding contracts of employment with both centers. The three consultant medical staffs also hold honorary appointments with the University of Glasgow. The training program for undergraduate medical students from the University of Glasgow includes regular attendance at the SEC for formal teaching, and students are encouraged to return for their special study modules. The SEC also hosts postgraduate neurology training for junior doctors and attachments for senior trainees in neurology, psychiatry, or clinical neurophysiology who express an interest in epilepsy and/or EEG and who may be based in any part of Scotland. Involvement in the training of nurses and EEG technicians at the SEC has facilitated collaborations with other universities, e.g., Glasgow Caledonian University. The SEC has hosted a number of clinical psychology trainees. Clinical staff is involved in the training of psychologists through the University of Glasgow and through the Masters in Clinical Neuropsychology course. There have been collaborative projects that have shared psychology staff and resources across the SEC and QEUH. There are close working relationships with the NHS. The QEUH and the Institute of Neurological Sciences are the sites for the West of Scotland Epilepsy Surgery Program. Medical staff working at both sites allows the SEC to share detailed assessment information with the program to assist surgical planning. The SEC's close involvement with NHS epilepsy services allowed (through Professor Sameer Zuberi) us to support his successful bid for Glasgow to join EPICARE. This is a European initiative to identify European centers of excellence. This will provide a clinical framework for standards of care in epilepsy and also a potential framework for optimizing research collaborations within Scotland and between European centers. Our close collaboration with the NHS allows information sharing to support clinical decision making. It also permits access to records for the purpose of tracking outcome and ensuring continuity of care. Research arrangements exist such that the SEC has negotiated that certain research governance duties are undertaken by the university hospital — lessening administrative burden and ensuring best practice for patients. 6. Scientific contributions, education, information, and public relations 6.1. Education and information Outside of the day-to-day work there is a recognition that more can be done to support the specialist epilepsy community. Therefore, the
Please cite this article as: Russell AJC, et al, The William Quarrier Scottish Epilepsy Centre, Glasgow, Scotland, Epilepsy Behav (2017), http:// dx.doi.org/10.1016/j.yebeh.2017.07.029
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SEC includes dedicated meeting spaces for lectures and seminars and a research area. This allows us to attract specialists, the epilepsy community and our partners from the NHS and universities to share knowledge expertise and explore developments in epilepsy care. We aim to facilitate, nurture, and support future specialists with the medical field including trainees in neurology, psychiatry, neurophysiology, psychology, and nursing. We currently support and provide educational opportunities for medical, psychology, and nursing students and provide epilepsy teaching to GPs and those supporting people with epilepsy in the community. We are working with the research community and the universities to ensure that the SEC facilitates better understanding around the condition of epilepsy and to contribute to local developing research networks. We hope this will extend the reach of the specialist to many more people who have epilepsy than has previously been possible. As part of this function, we have hosted a number of events. In June 2013, we hosted ‘Challenging Epilepsy’. The conference attracted leading professionals in the field from all over the world. This was well received, and while a small unit, it was noted that we had added something to the assessment of the complex patient. “We were particularly impressed with the high tech monitoring systems that you have installed — it has certainly taken video telemetry to a new and better level.” In January of 2015, we hosted the European Association of Epilepsy Centers (EAEC) for the first time as the newest center in the Association. In June of 2015, following the review of the Scottish Intercollegiate Guidelines Network: Epilepsy Adult Guideline, the SEC hosted a unique implementation planning event bringing together SIGN, HIS, and the National Neurological Advisory Group. In May 2017, we will be hosting the UK Epilepsy Surgery Network meeting.
6.2. Scientific contributions Our clinical staff is active in research and publication. Recent publications include a study that demonstrated considerable reduction in neurological health resource use (HRU) in the years following admission at the SEC. As part of a Scottish Government grant, the SEC has recently completed a project (led by Dr. Oto) looking at the provision of services to those with learning disability and epilepsy. This demonstrated the high quality, but variability of access, specialist services across Scotland. This project was assisted by a steering group including members from the NHS, local universities, and experts in the field of learning disability and epidemiological studies. This project was well received and has the potential to change and improve practice at a national level. We have also completed data collection on a longitudinal project that is considering in more detail the change in seizure frequency and the impact on the individual patient as a result of their admission. A further project is considering the outcomes in those with psychogenic nonepileptic seizures (PNES) in more detail. Given the novel environment of the center and patient safety issues, we have closely considered, and presented at conferences, response to seizure time for staff and have contributed to the British Society for Clinical Neurophysiology UK audit of induction of PNES during EEG sharing data and protocols, with a view to the development of UK guidelines. The SEC, through the assistance of a Scottish Government grant, are developing a seizure-risk assessment tool to help formalize and act as an adjunct to clinical decision making and communication on the ward. As the SEC has a wealth of expertise and detailed observations of seizures (both epilepsy and PNES), we are actively studying the environmental aspects of seizure occurrence, in collaboration with Prof. Markus Reuber's team in Sheffield. Dr. Russell has a long involvement in epilepsy research and is currently the UK coordinator for the European Pregnancy Register (EURAP).
Consistent with our desire to have an impact greater than our hospital, the SEC and Quarriers run fieldwork services. These are community-based services that provide a wide range of support and advocacy for people with epilepsy in the community. This work has recently been recognized and supported by a £500,000 grant. The SEC is currently seeking grant funds to further explore and quantify the value of this community-based direct service in the lives of people with epilepsy. Continuing our interest in expert and novel technology, we are currently trialing a number of patient-worn, seizure detection, and physiology devices with the goal of integrating them into existing patient safety systems. We also have interest in self-control of seizures using biofeedback and cognitive change after medication optimization. Biofeedback is already being pursued in Marseille and other UK neurosciences centers; work to establish a collaborative research project in this area is ongoing. Medical staff has contributed to the most recent Epilepsy SIGN guidelines. The SEC and senior staff sit on various advisory groups that contribute to large pieces of work in the NHS, local-managed care networks, Government groups, and workforce planning. This allows our expertise to inform practice in Scotland more generally. Dr. Oto is an editor for ‘Seizure’, and the members of the clinical team are active reviewers for major epilepsy journals. 7. Financial perspectives and strategic deliberations for future developments In Scotland, there has been increasing focus at local and government level (Keys for Life http://www.gov.scot/resource/0042/00424389.pdf, SIGN guidelines, National Advisory Group for Neurological Conditions) to ensure that those with long-term neurological conditions have their needs met. This has placed the SEC in a key position to influence these developments. We, however, operate in a unique environment. We are registered as an independent hospital yet run by a charity and notfor-profit, providing services to a national health service. Our independence and charity ethos informs our service. As a charity, our desire has always been to augment and support NHS services, not to seek to supplement or derive a profit from our partnership. There is, however, a consciousness that in times of fiscal constraint, services must seek to be efficient and effective. Also, there is a desire across the Scottish health service to reduce any reliance on expensive or private services, which, while delivering a service, may operate to the detriment of establishing robust, affordable and sustainable NHS services. This has seen national drives to reduce the use of private health services and locum companies for staff. At the SEC, we are different. Sharing of staff, capital financial support from the NHS for the new hospital and transparency around the service we provide means that partnership is embedded in how we interact with the NHS and we provide a good and cost-effective service. There are, of course, risks. We are vulnerable to individual funding decisions made by each health Board, and we offer a service to a small group of complex people. Even if a service is valuable, it may face financial constraint. This situation has informed our service development and the data we have collected. We have sought to deliver an excellent service but also be critical of the outcomes and intelligent around their collection. 8. How to overcome future barriers The SEC is the youngest and smallest member of the European Association of Epilepsy Centers. Our origins are very similar to many of the other centers — but UK and Scottish law has changed our structure over the last twenty years. Our previous long-term residents now live in the community under the auspices of social care.
Please cite this article as: Russell AJC, et al, The William Quarrier Scottish Epilepsy Centre, Glasgow, Scotland, Epilepsy Behav (2017), http:// dx.doi.org/10.1016/j.yebeh.2017.07.029
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Hence, our focus is on effective, efficient, and accessible mediumterm assessment of people with complex epilepsy and diagnostic issues, education of patients and healthcare personnel, research, and having an impact on the lives of all those living with epilepsy; through partnership rather than direct care. As the way we deliver our service has changed, we have been able to consider changing our arrangement with the NHS. The SEC is looking to move to a model (which is used for unique national services) where we seek collective funding from a national NHS body. This is an exciting proposition. It would support our service over the long-term, and allow economies of scale and efficiency. We would be able to admit more people with less administrative burden and provide a service on an equitable basis, irrespective of where people live in Scotland.
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Aline J.C. Russell⁎ James Anderson Saif Razvi Maria Oto Joanne Hill Gerard Gahagan The William Quarrier Scottish Epilepsy Centre, 20 St. Kenneth Drive, Glasgow G51 4QD, United Kingdom ⁎Corresponding author. E-mail address:
[email protected] (A.J.C. Russell). URL: http://www.scottishepilepsycentre.org.uk/ (A.J.C. Russell). 24 June 2017 Available online xxxx
Conflict of interest The authors declare no conflict of interest.
Please cite this article as: Russell AJC, et al, The William Quarrier Scottish Epilepsy Centre, Glasgow, Scotland, Epilepsy Behav (2017), http:// dx.doi.org/10.1016/j.yebeh.2017.07.029