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Developing a nurse-led epilepsy service for adults

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[this needs page nos from proof]

Keywords: neurology, epilepsy, nurse-led service

[head] Developing a nurse-led epilepsy service for adults

Author Pamela Mantri, PG Cert Epilepsy Practice, BA, Dip Nurs, Dip Epilepsy Care, RNLD, Cert Ed, is epilepsy nurse specialist, County Durham PCT.

Abstract Mantri, P. (2008) Developing a nurse-led epilepsy service for adults. This is an extended version of the article published in Nursing Times; 104: 11, xx–yy.
This article outlines the development and implementation of a community-based nurse-led epilepsy service for adults. The benefits that developing a specialist nurse role affords patients, such as improved information-giving and self-management, are also outlined and details given on plans to further develop the service.

[main text]
[x head] Introduction
Epilepsy is the most common serious neurological condition, with an estimated prevalence of approximately 0.5% (MacDonald et al, 2000) and a misdiagnosis rate of 20–31% (Stokes et al, 2004). Mortality in people with epilepsy is 2-3 times higher than in the general population, with sudden unexpected death accounting for approximately 18% of epilepsy-related deaths (Walczak et al, 2001). Significant morbidity is associated with epilepsy, including social exclusion, disability and stigmatisation (Shaw et al, 2007). These issues impact on employment, driving and relationships. Sander (2004) advised that optimal treatment could render 70% of people with epilepsy in the UK seizure free, but Moran et al (2004) found that only 52% are actually seizure free.
In 2004 Durham and Chester-le-Street PCT - which has now merged with four others to form County Durham PCT - had a population of 152,075. With a national prevalence of 0.5–1%, it would be expected there would be 760–1,520 people with epilepsy living in the area. A local evaluation in 2004 identified 721 people with the condition.
A raft of reports over the last 55 years have criticised epilepsy care standards, with the most recent report published last year (All-Party Parliamentary Group on Epilepsy, 2007). Many guidelines and initiatives have been produced to try to improve this situation, such as the Chief Medical Officer’s report on improving services (CMO, 2001), the new GP contract (Department of Health, 2003), guidance from the Scottish Intercollegiate Guidelines Network (2003), Royal College of General Practitioners' guidance (Stokes et al, 2004) and The National Service Framework for Long-term Conditions (DH, 2005).
Bradley and Lindsay (2001a) summarised key criticisms as: lack of systematic follow-up; inappropriate use of investigations; patients seen in hospital by medical staff who are not neurologists; inappropriate drug combinations; non-adherence to treatment; poor communication between primary and secondary care; poor communication with patients; and sparse patient knowledge.
Several reports recommended employing ENSs to address some of these issues and the PCT responded to this. The Clinical Standards Advisory Group (1999) found that while only a minority of adults had seen an ENS, 74% of those who had done so thought that nurses helped them to cope better by providing information and advice, extra support and being easier to talk to. Stokes et al (2004) advocated that ENSs become an integral part of epilepsy care, supporting epilepsy specialists and generalists.
In addition to the significant, and sometimes avoidable, mortality and morbidity associated with epilepsy, there are also considerable resource implications. Stokes et al (2004) estimated that in the UK epilepsy-related costs total £160m annually but that a significant proportion of this is due to misdiagnosis and non-medical costs. By implication, many of these costs are avoidable. With limited resources PCTs must be accountable for their expenditure and use their resources effectively and efficiently. Epilepsy nurses are considered a cost-effective means of delivering specialist epilepsy management by releasing consultants’ time, reducing emergency hospital admissions and improving adherence (APPG on Epilepsy, 2007). Guidelines and best practice need to be at the centre of good epilepsy management and epilepsy nurses have a pivotal role in ensuring their implementation. In addition, the NHS Modernisation Agency (2003) has provided 13 statements outlining standards that PCTs should achieve (Box 1).

Box 1. PCT competencies
8.20.1 The PCT will have plans in place to support the delivery and development of epilepsy services
8.20.2 The PCT will have active development and education programmes with employers and schools in relation to epilepsy and the services that support people with epilepsy
8.20.3 The PCT will be actively working with the voluntary sector to improve services for people with epilepsy
8.20.4 The PCT will have developed primary care epilepsy services to an advanced level
8.20.5 The PCT will have an active up-to-date education programme for primary care practitioners
8.20.6 The PCT’s practices will work to treatment guidelines
8.20.7 All PCT practices will have an epilepsy register that is used to ensure that patients diagnosed with epilepsy are assessed regularly
8.20.8 The PCT, in conjunction with its practices and its specialists, will undertake regular check-ups with patients to assess progress, compliance to drug regimes etc

8.20.9 The PCT will have systems in place to ensure that specific client groups are effectively monitored, for example, women of child-bearing age

8.20.10 The PCT will have developed effective links with secondary care providers through specialist nurses or GPs with a specialist interest in epilepsy
8.20.11 The PCT will commission services to provide timely access to consultant care, tests and investigations
8.20.12 The PCT will have developed and implemented structured systems to ensure that particular patient groups have access to equitable services, for example, patients with learning disabilities

8.20.13 The PCT will be active in the development of joint working with service users and carers and will provide opportunities through helplines and Expert Patients Programmes to help patients participate fully in the development of their care
Source: NHS Modernisation Agency (2003)

[x head]Services at the PCT
Two visiting consultant neurologists provided weekly general neurology clinics at the local district hospital. Follow-up clinics were given around six months later or earlier if clinically indicated. Secondary and primary care liaison consisted of letters between GPs and neurologists with occasional telephone contact. If patients had problems between clinics they could contact their own GP or the neurologist’s secretary who would ensure that messages were forwarded. Although specialist management of epilepsy in secondary care was high-quality, it was insufficient, and there was no specialist follow-up in the community.
The specialist registrar in public health at Durham and Chester-le-Street PCT carried out a study in 2004 examining the local epilepsy service, which identified that secondary care services had limited capacity. Consequently, patients had difficulty in accessing services, and also wanted more information. The report concluded that the PCT should employ an ENS to liaise between primary and secondary care and support the development of epilepsy services based on best practice. The registrar recommended that the nurse support practices to achieve the clinical indicators in the new GP contract (DH, 2003), developing baseline standards for epilepsy care.
An epilepsy nurse specialist (ENS) post was set up in the PCT just over three years ago. This post was facilitated by Epilepsy Action as part of its Sapphire Nurse scheme and the post-holder was given the remit to plan, implement and develop community-based services for adults with epilepsy.

[x head] Model of care and rationale
While acknowledging that there is a lack of robust research, Bradley and Lindsay (2001b) concluded that there is currently no convincing evidence that epilepsy nurses improve outcomes of seizure frequency, psychosocial functioning, health status, lost work days, epilepsy knowledge, depression or anxiety. However, two of the reports they studied were hospital-based and none measured the long-term effect of interventions. These researchers advised that people with learning disabilities, patients who are newly diagnosed and have poor baseline knowledge and those with infrequent seizures may benefit from specialist nurse intervention. Ridsdale et al (1999) noted that patients valued the fact that epilepsy nurses had the time and specialist knowledge to provide advice and support, particularly in relation to psychosocial aspects. It is important to maintain these qualities in any model of care.
One of the neurologists at the trust had a special interest in epilepsy and started a monthly secondary care epilepsy clinic two months after the specialist nurse post began. The ENS supported this clinic and followed up patients in nurse-led community clinics, liaising with primary and secondary care.
The literature suggests that patients prefer primary care and nurse interventions (Thapar et al, 1998). Some non-specialist primary care practitioners report having less confidence, knowledge or time to carry out follow-up epilepsy management, with nurse specialists well placed to integrate epilepsy care (Kwan et al, 2000; Thapar et al, 1998). This lack of confidence may become more prevalent with the increasing number of guidelines and new antiepileptic drugs, while knowledge about epilepsy and its management is continually emerging and expanding.
Stokes et al (2004) advised that the ENS should be an integral part of the care network. Epilepsy nurses are valued by people with the condition for supporting the social aspects of care, providing information, reducing depression (Ridsdale et al, 1999) and improving independence (Mills et al, 1999). They can also titrate and prescribe antiepileptic drugs within locally agreed protocols to improve patient access to medicines (DH, 2006). It was therefore decided to set up a number of community-based nurse-led clinics offering accessible, patient-focused epilepsy management and timely, responsive interventions in an informal setting, ensuring adequate time for consultations and rapid access where required. Telephone consultations were offered as an alternative, or in addition, to nurse-led clinics in response to patient preference.

[x head] Epilepsy nurse specialist role
The PCT helped the epilepsy nurse to develop the community-based aspect of the post independently. From information gleaned from the literature, networking and professional experience, the nurse structured the service, identifying four key components to the role:
• Clinical management:
– Conducting assessments and care plans; receiving referrals from primary and secondary care; assessing in nurse-led clinics or in patients’ homes or workplace; planning care in partnership with patient;
– Implementing patient-focused interventions; managing risk; promoting self-management; giving information; nurse prescribing; managing medicines; arranging onward referrals/liaison with other agencies/professionals as required;
– Monitoring seizure control, adverse side-effects of antiepileptic drugs, adherence, interactions, anxiety, psychoses, coping mechanisms, deterioration; screening for co-morbid depression; encouraging use of seizure diaries.
• Strategy:
– Developing policy, protocols and proformas reflecting current best practice and evidence base; clinical governance; updating policy and practice as new evidence emerges; liaising with other care providers and commissioners.
• Professional development:
– Attending extended nurse prescribing course to support competency in prescribing and titrating antiepileptic drugs and understand pharmacokinetic properties and interactions;
– Taking an MSc in Epilepsy Practice at Leeds Metropolitan University to increase and update specialist epilepsy knowledge;
– Engaging in mentorship and in-clinic learning;
– Undertaking ENS e-networking, clinical supervision; having professional membership of EpilepSy Nurses Association (ESNA) and Epilepsy Action (EA); attending local meetings with peers;
– Publishing articles.
• Education:
– Teaching sessions on request by staff and organisations;
– Holding joint clinics with practice nurses; carrying out annual epilepsy reviews;
– Organising conferences and education events, such as ‘Epilepsy in Primary Care, 2006’, ‘Women with Epilepsy, 2007’.
Greenhill et al (2001) noted the ENS’s changing role with the advent of nurse prescribing and in the context of changing professional structures. While there is an important and expanding clinical component to the post, it is important for epilepsy nurses to retain their crucial role in information-giving and having the time to listen to patients’ concerns. Promoting self-management and improving communication are important aspects of the role.

[x head] Developing the service
Initially, the ENS supported and took referrals from the secondary care outpatient clinics only, until consistent practices were developed. Now direct referrals are also taken from GP practices. Neurology follow-up continues in secondary care, and the ENS developed a series of community-based nurse-led clinics. The ENS runs six clinics in different parts of the county each month with additional occasional clinics in less-populated areas. Clinics are also held in two local prisons in conjunction with two prison healthcare nurses. The neurologist continues to see some patients but refers some to the ENS and some back solely to primary care.
The nurse makes homes visits if indicated. Reasons for home visits have included anxiety, infirmity, behavioural issues, illness or the need to undertake a risk assessment in the home environment. Visits to places of education and employment have also been undertaken.
Telephone consultations may take place in addition to, or in place of, nurse-led clinics, depending on individual need and preference. Sometimes patients prefer to access this type of support to save taking time off work. Currently there is only capacity to offer clinics from Monday to Friday, 9am-5pm, which can mean some people have to take time off work to attend.

[sub head] Self-management
A new diagnosis of epilepsy can carry associated stigma, together with loss of self-esteem and independence. A significant number of people with epilepsy need support to make psychosocial adjustments and learn appropriate self-management behaviours (Kobau and Dilorio, 2003). The World Health Organization (2003) reported that adherence to antiepileptic drugs is estimated at only about 50%. Education and patient empowerment may be able to positively influence this poor rate.
The DH (2001) recommended that people with long-term conditions become ‘expert patients’. Shaw et al (2007) suggested that epilepsy self-management measures would include actions that improved quality of life such as antiepileptic drug adherence, modifying lifestyle to control seizure frequency, safety promotion and addressing psychosocial and occupational issues.
The quality of evidence available, however, did not allow the researchers to fully evaluate the efficacy of the self-management programmes or what components such programmes should include. Both the trials included in this study claimed improvements and advocated educating people with epilepsy. This is an area the epilepsy nurse plans to develop.

[sub head] Information-giving
Patients can only self-manage effectively if they understand their condition, so they need good-quality information on which to base their actions. Information empowers patients and both general and tailored information-giving is a key role of the epilepsy nurse. The National Society of Epilepsy’s (NSE) information network is seen as an example of good practice in the first quality requirement of The National Service Framework for Long-term Conditions (DH, 2005). The nurse is currently liaising with the society to implement this. Nurses must remember, however, that not all patients wish to self-manage.
Mills et al (2002) found ENS interventions enhanced patient and clinician communication and information provision. Information-giving was noted to be particularly pertinent for patients who had recently received their diagnosis or those contemplating lifestyle changes such as pregnancy. Greenhill et al (2001) found the ENS’ role in providing specialist information and support was critical to epilepsy management. Ridsdale et al (1999) noted that patients valued information about epilepsy as well as the opportunity to discuss issues. Stokes et al (2004) recommended that people with epilepsy have an accessible point of contact, and the ENS is ideally suited to this.
The ENS briefly explains the condition and seizures and discusses their implications with patients in secondary care after their consultation with the neurologist. This includes safety advice, information about antiepileptic drugs and titration where appropriate. The nurse gives Epilepsy Action booklets to patients and discusses the introduction of the epilepsy information network with the NSE. More in-depth tailored education is given to patients and family members/carers in nurse-led community clinics, with more opportunity to discuss aspects of epilepsy management and answer patients’ questions. Videotapes and DVDs are sometimes loaned to patients to give further information. An information checklist derived from Stokes et al (2004) is incorporated into the nurse’s assessment proforma, recording information given and its format. Patient-focused care is emphasised in nurse-led clinics with an agreed care plan, reflecting individual lifestyles and preferences.
A survey of patient perceptions of the new secondary care epilepsy clinic was carried out in its first six months to enable us to make improvements reflecting patients’ needs. As a result an information leaflet was developed explaining what to expect during and following the outpatient appointment and giving basic safety advice and sources of further information. In addition, the nurse issued cards to patients so they had a named point of contact.

[sub head] Communication
Interprofessional communication and communication between practitioners and patients are both essential components of safe, good-quality healthcare. Communication between healthcare providers remains a concern when there are several sets of notes. Patients’ secondary care medical notes are kept at two different hospital sites in the region. These are available at secondary care outpatient clinics but can be requested by the neurologist or nurse if required, although they would need to visit the hospital to access the notes. As these notes are not immediately available, the nurse maintains a further set of notes relating to each patient's epilepsy, while GPs maintain their own records. This situation will continue until shared electronic records are created. While it does not support safe practice it is beyond the nurse’s control.
In order to minimise the potential problems of fragmented patient records, the nurse outlines interventions from the nurse-led clinics, home visits or telephone consultations in a letter to the referrer. These letters are copied to the GP and patient so that information is shared. Other professionals, such as psychiatrists, psychologists and nurses, may be copied into correspondence where relevant, with patient consent.
As the nurse supports the neurologist’s clinic, these letters are discussed and acted on where necessary to ensure timely interventions. If the neurologist gives any advice to the nurse, this is recorded in a letter to the nurse, copying in the GP. The neurologist also copies the nurse into any correspondence with the GP. In addition, the nurse writes a separate letter to the GP outlining any more general issues that could be more appropriately managed in general practice.
Requests for referrals to other professionals, such as counselling or psychology services, may be detailed. The nurse outlines the quality and outcomes framework indicators, asking if the patient is included in the practice epilepsy register and advising whether the person records their seizures. This letter also advises when the patient’s antiepileptic drugs were last reviewed, by whom and details any changes made and whether the patient is seizure-free. If the patient is not seizure-free the date of the last known seizure is documented. The patient is copied into this letter.
Telephone liaison and advice also enhances communication between the different care providers. The ENS faxes through details of any prescriptions issued or titration changes made within one working day, with the more detailed clinic letter following.
There are 152 ENSs in England (APPG on Epilepsy, 2007) and most work alone as nurses, even if part of a wider multiprofessional team. They tend to work in isolation, but Mills et al (1999) found that they increased communication about epilepsy, particularly with GP practices and between patients and practitioners. Networking is an important way of overcoming this isolation and various electronic networks are available (Box 2).

Box 2: Epilepsy networks and educational resources

Epilepsy Action
EpilepSy Nurses Association
Jan-net Ltd epilepsy network
National Society for Epilepsy

[sub head] Evaluation of the service
There was enough capacity for the nurse to fulfil clinical commitments when referrals came only from secondary care, but it was expected that this would no longer be the case when direct referrals from primary care started.
Mills et al (1999) noted that evidence of ENSs’ effectiveness was limited by lack of formal long-term evaluation and Greenhill et al (2001) advised that it is necessary to define the effectiveness of the epilepsy nurse before measuring it. Epilepsy nurses need to demonstrate and publicise their effectiveness before being employed widely.

[x head] Planned developments
The community service is vulnerable as a single-person entity, and also limits the amount of activity that can be carried out. Box 3 lists ideas of what would improve and expand the services available to patients and professionals. Recognition of these issues led to the development of a business plan outlining the need for a GP with a special interest in epilepsy, a second ENS and dedicated administrative services. The PCT supported this, securing funding, and the service is currently expanding. Through liaison with secondary care colleagues it is hoped it will be supported by a consultant neurologist with a special interest in epilepsy.

Box 3. Planned developments
Introducing women’s groups
Establishing patient education groups
Hosting professional workshops
Supporting transition from paediatric services
Improving joint working with mental health services to support management of specific conditions, including psychoses of epilepsy
Improving joint working in primary care, including implementation of NICE guidelines and other models of best practice, and developing annual epilepsy reviews, registers and QOF indicators
Identifying and reducing non-elective hospital admissions
Increasing epilepsy awareness sessions with other agencies, including employers and local authorities (housing officers, occupational therapists, social workers)
Auditing waiting times for outpatient appointments and DNA rates
Monitoring adherence
Identifying reasons for non-elective hospital admissions and proposing proactive interventions to reduce these; developing alternative community-based strategies
Auditing and developing epilepsy management in prisons
Carrying out and publishing service audit and improvement

We also plan to develop a more robust epilepsy education programme for patients and health professionals. Following the conference organised by the ENS in 2007, several primary care practitioners highlighted the need for education about the psychosocial aspects of epilepsy. In response, a conference, 'The Impact of Epilepsy', is being organised for autumn 2008.

[x head] Conclusion
Three years ago the PCT did not have a community epilepsy service. Now, regular community epilepsy clinics are held in nine locations across the county with additional telephone access. This has facilitated improved access, communication, support in self-management and information-giving for patients. They also have more timely access to titration of antiepileptic medication. Communication between primary and secondary care has also begun to improve.
This article demonstrates the potential impact that an ENS can have on improving patient access to services. Patient consultation and service audit in relation to best practice are key areas to develop once the community epilepsy team is in place. This will promote an evidence-based, patient-focused community epilepsy service in County Durham PCT.


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