Reflecting on the care of a person with a learning disability and uncontrolled epilepsy
Intended for healthcare professionals
Evidence and practice    

Reflecting on the care of a person with a learning disability and uncontrolled epilepsy

Sandra Elaine Morton-Nance Hospital liaison nurse specialist learning disabilities, Broomfield Hospital, Mid and South Essex NHS Foundation Trust, Chelmsford, England

Why you should read this article:
  • To recognise that people with learning disabilities and a long-term health condition are at risk of avoidable and premature death

  • To identify how a combination of reflective practice and the introduction of a virtual nurse-led clinic improved health outcomes for a patient with a learning disability and uncontrolled epilepsy

  • To understand how reflection can enhance your practice

This article presents a reflection on a case study by a hospital liaison nurse for patients with learning disabilities. The case study details the care of a patient with a learning disability and uncontrolled epilepsy who was at risk of premature and avoidable death. Following frequent hospital episodes, reasonable adjustments to the patient’s care and support needs were essential. An integrated approach was adopted through the setting up of a nurse-led virtual clinic to monitor and coordinate care for patients with learning disabilities and long-term conditions. The clinic was instrumental in improving patient safety and optimising health outcomes.

Learning Disability Practice. doi: 10.7748/ldp.2022.e2174

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Correspondence

sandie.sunburst@btinternet.com

Conflict of interest

None declared

Morton-Nance SE (2022) Reflecting on the care of a person with a learning disability and uncontrolled epilepsy. Learning Disability Practice. doi: 10.7748/ldp.2022.e2174

Published online: 10 February 2022

Reflective practice has become an important part of daily practice for nurses and is fundamental to revalidation, the process that all nurses and midwives in the UK and nursing associates in England must follow to maintain their registration with the Nursing and Midwifery Council (NMC) (2021a) (Royal College of Nursing (RCN) 2020). Reflective practice in nursing is based on practical strategies, gained from the insight of the practitioner (Johns 2017). There are various models of reflection, including those formulated by Kolb (1983), Schön (1983), Gibbs (1988), Johns (1995) and Johns and Freshwater (1998). These models each hold equal validity in nursing practice.

For the example of reflective practice used in this article, the author refers to Schön’s seminal model of reflective practice (Schön 1983, 1991), which is linked to intuition and identifies two principal types of reflection:

  • Reflection-in-action – thinking and theorising about clinical practice during a clinical event.

  • Reflection-on-action – conscious exploration of experiences and thinking about clinical practice after a clinical event.

In this context, a previous clinical event was chosen for ‘reflection-on-action’ by the author, a hospital liaison nurse for patients with learning disabilities. The event was chosen because of the various challenges arising when managing care for a patient with complex needs. This reflection describes how the actions taken improved the person’s quality of life and affected patient safety and organisational outcomes. The case study is relevant to nursing because it demonstrates the significant role of formal and informal reflective practice. It also reveals that an integrated whole-systems approach, alongside a theoretical nursing model and framework for practice, is essential during all assessments (RCN 2014, Moulster et al 2019).

To respect people’s right to privacy and confidentiality identified by the Code: Professional Standards of Practice and Behaviour for Nurses, Midwives and Nursing Associates (NMC 2018), the pseudonyms ‘Margaret and Ted’ are used in the case study.

Case study

Margaret is a married 47-year-old woman with a moderate learning disability who had been diagnosed with epilepsy as a child. Margaret and her husband Ted live independently with occasional support offered from family and friends when required. Ted has a mild learning disability and took responsibility for Margaret’s care and managing all of her medicine regimens. Recently, Margaret was taken to the emergency department (ED) by ambulance with status epilepticus, a condition that resulted in several emergency hospital admissions between March 2019 and September 2019. ED staff had raised safeguarding concerns about the significant injuries sustained by Margaret either during her seizure episodes or post-seizure, which resulted in the involvement of social services.

As part of her professional role, the hospital liaison nurse (the author) coordinated the acute hospital journey for patients with learning disabilities.

Reflection-before-action

Status epilepticus is a medical emergency characterised as either a prolonged seizure or a series of seizures lasting approximately 5-10 minutes, and resulting in an altered state of consciousness and without recovery in between (Ryan et al 2021). Margaret’s seizure threshold was described previously by Ted as being well controlled with anticonvulsant medicines.

Ongoing neurological review and investigations were conducted during Margaret’s hospital admissions. The computed tomography head scans and magnetic resonance imaging head scans showed no clinical indication of head trauma, stroke or tumours. Routine electroencephalogram recordings showed no significant changes in comparison to the previous tests. Blood tests all indicated normal ranges and showed no raised inflammatory markers to indicate infection. There was no history of psychiatric issues and no current input from either health or social care professionals in the community.

Over time, due to Margaret’s high number of revolving-door admissions and a lack of detectable abnormalities, the neurologist recorded Margaret as a patient presenting with ‘drug-resistant epilepsy’. Although a precise definition has remained obscure, the term drug-resistant epilepsy is often used interchangeably with refractory, intractable or pharmacoresistant epilepsy (Kalilani et al 2018).

During Margaret’s hospital admissions, Ted became a frequent visitor to the ward and was concerned for Margaret’s welfare. He would often arrive in an agitated state, asserting to clinicians that Margaret was not getting the right treatment she required for her medical condition despite regular outpatient epilepsy clinic appointments with the neurologist. As part of the post-discharge plans, additional emergency appointments were made for Margaret to attend the outpatient epilepsy clinic.

Paradoxically, despite the regular and emergency outpatient epilepsy clinic appointments made for Margaret, she had not always attended. This was disconcerting for everyone because it was clear that healthcare professionals were providing the services that were required to monitor and manage Margaret’s condition. The hospital liaison nurse was perplexed and knew intuitively that all was not well with Margaret, suspecting that there must be a hidden reason for her non-attendance at the outpatients’ clinics, although Margaret was unable to offer an explanation. This was the starting point for a pragmatic solution. A new emphasis was placed on connecting with Margaret more effectively to prevent her continuing to disengage from services.

Setting up a virtual clinic

A pilot nurse-led virtual clinic designed by the hospital liaison nurse had been set up in the acute hospital as a ‘reasonable adjustment’ to service provision. In the UK, the Equality Act 2010 requires organisations, including healthcare services, to make reasonable adjustments for people with disabilities, including learning disabilities. The aim of the virtual clinic was to monitor and coordinate care effectively for patients with learning disabilities coupled with long-term health conditions. The liaison nurse took on the role of care coordinator. The virtual clinic was a remote service using video and phone consultations to regularly monitor the care and support needs of people with learning disabilities coupled with two or more long-term conditions.

This virtual service was implemented as a direct result of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities, which had reviewed the avoidable or premature deaths of people with intellectual disabilities in England (Heslop et al 2013). The report recommended that a named person should coordinate care for people with complex or multiple health conditions, or two or more long-term conditions (Heslop et al 2013). Table 1 shows the inclusion and exclusion criteria for the virtual clinic.

Table 1.

Inclusion and exclusion criteria for virtual clinic

Criteria Inclusion Exclusion
Age
  • >18 years

  • <18 years

Diagnosis
  • Patients with learning disabilities and long-term conditions

  • Patients without learning disabilities

  • Patients with learning disabilities but without long-term conditions

Co-morbidities
  • Long-term conditions: clinical progression of primary (basic) physical co-morbidity – cancers, organ failure, dementia and frailty

  • Aetiological co-morbidity: genetic disorders, brain injury, epilepsy, dysphagia and congenital disorders and/or infections

  • Complicated co-morbidity: brittle diabetic nephropathy, hypertension, obesity, sleep apnoea, polypharmacy and malnutrition

  • Non-physical health facilitation

  • Dual diagnosis: learning disability/mental health, co-morbid psychiatric disorders, substance misuse

  • Adults with learning disabilities detained by Her Majesty’s Prison Service: offending behaviours

Reflection-in-action

The hospital liaison nurse made a spontaneous, clinical judgement that Margaret met the criteria for inclusion in the pilot virtual clinic. The considerable risk of potential premature and avoidable death for Margaret, and the values and belief system of the hospital liaison nurse, provided full justification for inclusion. Table 2 outlines how this clinical event fitted Schön’s (1991) principle of reflection-in-action.

Table 2.

Reflection-in-action

Practice Patient: identified issues Hospital liaison nurse: thoughts and actions
Reflection-in-action
  • Margaret has increased frequency and severity of epileptic seizures, resulting in prolonged episodes of hospitalisation

  • Margaret is not attending her outpatient epilepsy clinic appointments

  • Margaret’s husband believes that clinicians could do more to support her

  • Nurse intuitively knows something is amiss

  • Nurse thinks if she works more closely with Margaret, this may support Margaret to participate more fully in her healthcare

  • Nurse engages closely with Margaret through the virtual clinic

(Adapted from Schön 1991)

Initial patient assessment

The hospital liaison nurse approached Margaret on the ward during one of her frequent hospital admissions. Margaret agreed to be involved in the virtual clinic and identified the telephone as her preferred contact method rather than video. Margaret gave verbal consent for the hospital liaison nurse to take her collateral history, along with access to and sharing of her health records.

After a full review of all the clinical information to hand, the hospital liaison nurse established the date of Margaret’s epilepsy diagnosis along with her medicine history, current medicines and previous professional input. On further analysis of the data relating to the emergency presentations and admissions, it became clear that the severity and frequency of Margaret’s seizures had changed dramatically. This was particularly evident over the previous two years, despite neurology input, ongoing review and frequent changes in prescribed anticonvulsant medicines.

Virtual clinic schedule and consultation

The hospital liaison nurse scheduled the virtual clinic appointments on a regular basis according to patient need. In Margaret’s case, fortnightly appointments were initially offered because of professional curiosity, clinical intuition and genuine concern. At each appointment, the hospital liaison nurse asked Margaret a set of three questions about noticeable changes in her health, medicines and levels of dependency. The hospital liaison nurse made clinical decisions according to the responses given.

Over time, there were positive indicators identifying Margaret’s health deterioration and a change in support needs. For example, the risk factors associated with the increased frequency and severity of Margaret’s seizures and the injuries she had sustained had a multifaceted effect on her care needs, which also affected her mental health.

During one of the virtual clinic appointments, Margaret informed the hospital liaison nurse that two years earlier Ted had experienced a cerebrovascular accident (CVA) or stroke. Margaret had not shared this information previously in the acute setting. However, it was important because, although Ted had recovered, it was not known at this stage whether he had returned to baseline health or was still at risk of further CVAs.

Follow-up

Margaret’s disclosure concerning Ted’s CVA initiated urgent follow-up arrangements across multiple agencies. The hospital liaison nurse organised multidisciplinary team (MDT) meetings using Microsoft Teams. The MDT deliberated over Margaret’s case, which involved primary and secondary health and social care professionals across a broad range of specialisms.

Although there had been no input into Margaret’s case from health or social care professionals in the community, social services had been involved in the past due to the safeguarding concerns previously raised by ED staff. Therefore, a small social care package for carer support in the home was actioned, with Margaret’s full agreement. However, information shared at subsequent MDT meetings indicated that when the carer would arrive at the house, Margaret and Ted would notify them that they were managing quite well and therefore did not need anything. At other times, they were not at home when the carer arrived. Margaret’s continuing disengagement with care services was disappointing because her emergency hospital admissions were still frequent.

It was clear that Margaret and Ted had the capacity to make day-to-day decisions. However, their level of understanding about the benefits and risks of taking or not taking anticonvulsant medicines was not known. Consequently, following one of the ward visits when Margaret was an inpatient, the hospital liaison nurse obtained verbal consent from Margaret and Ted to conduct a mental capacity assessment in the hospital setting. A mental capacity assessment is a process used to determine whether an individual can safely make specific decisions about their health and welfare.

The results indicated that Margaret lacked capacity in fully understanding and retaining the information offered. However, Ted was able to show capacity since he was able to recall all the names of the prescribed medicines and the times to administer them. He was also aware of the risk of further ill health if Margaret did not take her medicines.

The status quo continued, all overseen by the hospital liaison nurse, with Ted managing the medicines, virtual clinic consultations with Margaret and ongoing collaboration with all other professionals. The neurologist maintained the position of drug-resistant epilepsy, which appeared likely. Drug-resistant epilepsy occurs when the person does not become seizure-free, despite ongoing review and trialling two or more appropriate anticonvulsant medicines (Case and Blake 2020). Through ongoing discussions, the members of the MDT agreed that there was a professional duty of care to Margaret. Therefore, all procedural assessments and care plans were to be jointly actioned and shared. One of the agreed actions was for the community learning disability nurse to visit Margaret and Ted at home.

Home visit

The home visit by the community learning disability nurse was arranged to coincide with one of the carer’s visits. There was an expectation that any significant findings would be reported back to the wider MDT. The home visit proved to be significant and insightful for the community learning disability nurse who observed that Margaret and Ted were living in a chaotic manner. There was no evidence of an established daily routine and the environment was described as ‘cluttered’. Among the disorder, many pharmacy bags were discovered, which contained various unopened and unused anticonvulsant medicines. There was evidence of opened boxes where several tablets had been accidentally dropped and left on the floor. When asked about this, Ted responded by stating that the pharmacy always gave out far more medicines than they needed. Ted also disclosed to the community learning disability nurse that he had ongoing health issues and had experienced transient ischaemic attacks (TIAs) after his previous stroke.

Reflection-on-action

The Mental Capacity Act 2005 is a legal framework in England and Wales designed to protect and empower people who may lack the mental capacity to make their own decisions about their care and treatment (Department for Constitutional Affairs 2007). However, there was no legal framework in place identifying Ted as either holding a lasting power of attorney or a court-appointed guardianship. Therefore, in light of the revelation of Ted experiencing recurrent TIAs and Margaret lacking capacity in this area, a ‘best interests’ decision was justifiable and had the full involvement and agreement of the wider MDT. The best interests decision reached was for a management plan where the carer accessed, managed and administered the anticonvulsant medicine, which for safety was now to be kept in a locked medicines box.

Margaret and Ted had been involved in all the discussions. However, it was considered by the MDT that, even though the final decision had been made, once it was actioned it might become challenging for Margaret and Ted to accept. To mitigate any additional distress, face-to-face discussions were planned to take place in their home in the presence of the social worker, the community learning disability nurse, and a named long-term friend of Margaret and Ted, who they had nominated to act as an informal advocate.

The hospital liaison nurse was relieved when Margaret stated that she was keen to accept a care package. She agreed to the management care plan, which involved the carers managing her medicines. Margaret was enabled to express her fears and concerns about being frequently admitted to hospital and constantly feeling unwell. Although Ted appeared to accept the decisions made, he was initially more reticent about the plans. This situation improved with ongoing interaction, engagement and support, and Ted was reassured that the health and social care professionals were not attempting to relinquish him of his caring role.

Findings and analysis

Following a full review and analysis of the hospital episodes and scrutiny of the information gathered via the virtual clinic, it was evident that a correlation existed between the increase in Margaret’s seizure activity and Ted’s decline in physical health. Figure 1 shows the number of ED presentations, emergency admissions and follow-up outpatient appointments that took place as a result of Margaret’s seizure activity over a six-year period (2015-20). This is relevant, because it provides a visual indication of when the increased episodes of seizures requiring hospitalisation began, and where the seizures improved with MDT input.

Figure 1.

Number of emergency department presentations, emergency admissions and follow-up outpatient appointments that took place as a result of Margaret’s seizure activity over a six-year period (2015-20)

ldp.2022.e2174_0001.jpg

Reflection-on-action continued, with the hospital liaison nurse reviewing, analysing and evaluating all of the actions taken. Further insight was gained and new knowledge acquired, for example, on the effectiveness of close monitoring and care coordination using the virtual clinic.

Along with the nursing process, evidence-based practice and organisational protocols, intuition and critical reflection remain important in the clinical decision-making process (Miller and Hill 2018). The ongoing processes of clinical judgement made in nursing include noticing, interpreting, responding and reflecting, which links with Schön’s (1983, 1991) reflective model. The processes and clinical judgement used in Margaret’s case study are shown in Figure 2.

Figure 2.

Processes and clinical judgement used in Margaret’s case

ldp.2022.e2174_0002.jpg

The hospital liaison nurse was satisfied that the changes made in delivering effective integrated care via the virtual clinic had a positive effect on Margaret’s quality of life. The general crisis period appeared to have been averted. Margaret remained under remote surveillance from the hospital liaison nurse via the virtual clinic. Information offered on Ted’s health and welfare remained part of Margaret’s remit, whereby she voluntarily offered information and included Ted in the discussions via the virtual clinic.

Margaret agreed to a care package, which comprised three daily 15-minute visits from the formal carers with an additional four hours available weekly for flexible support. The community learning disability nurse was allocated for health facilitation measures; for example, to monitor Margaret’s seizures and the efficacy of Margaret’s medicines and her compliance with them, to improve access to outpatient services, and to offer ongoing support to Margaret and the new care team in the community.

The actions taken by the wider MDT have resulted in Margaret’s increased attendance at the outpatient clinics and a significant drop in emergency admissions. Margaret returned to close to her previous baseline of seizure activity, which had been recorded between 2015 and 2016 (Figure 1), and which continued to be the case at the time of writing this article.

Key points

  • An awareness of long-term health conditions is required for nurses caring for people with learning disabilities to ensure proactive care and future planning

  • A named lead professional is essential for effective coordination, communication and management of the care and support needs of a person with a learning disability and a long-term condition

  • Responding to increased emergency presentations requires collaboration between local health and care services with involvement from patients, carers and families

  • Compliance with key legislation and embedding this in clinical practice is vital to protect vulnerable people from harm

  • Reflection supports nurses to think analytically and gain insight into their practice, which ultimately leads to improved outcomes for the nurse and the patient

Discussion

There has been a campaign to increase the profile of learning disability nursing in the UK (RCN 2021). The number of learning disability nurses on the NMC register is decreasing: there were 17,503 learning disability nurses in 2017, which had reduced to 17,128 in March 2021 (NMC 2021b). In addition, named care coordinators are lacking (Heslop et al 2013). However, a registered nurse and care coordinator is often the single most important role, integral to the care of individual patients (Treadwell et al 2015). Where healthcare needs are not straightforward, the lack of learning disability nurses and named care coordinators may well have a negative effect on the quality of care and the health outcomes for people with learning disabilities.

The level and effect of a learning disability varies for each person, ranging from mild, moderate and severe to profound (Gates and Mafuba 2015). People with learning disabilities tend to have two or more long-term health conditions that are not always well-managed (Public Health England 2016). This can potentially lead to premature, avoidable deaths (Department of Health 2013, Heslop et al 2013, NHS England 2019).

Significantly, data indicate that about one in three people (32%) with a mild-to-moderate learning disability also have epilepsy, which is much higher in comparison to the general population (Epilepsy Society 2019). Furthermore, the more severe the learning disability, the greater the likelihood of epilepsy as a long-term condition. For most individuals, epilepsy can be managed well with medicines. However, there are up to 35% of individuals whose seizure threshold remains uncontrolled by anticonvulsant medicines (Schmidt 2009). The effects of inadequately controlled epilepsy include a reduced quality of life and an increased risk of premature death (Moore and Elliott 2015, Walker 2019, Stern et al 2020). Sudden death in epilepsy affects one in every 1,000 adults with epilepsy each year. This could potentially be avoided by effective management (Epilepsy Action 2019). In addition, the risk of injuries sustained during a seizure, including fractures, is high and can become a common cause for presentation to acute hospitals. Margaret often sustained serious injuries during or after a seizure. Inadequately controlled seizures, multiple medicines (polypharmacy), injuries sustained and frequent hospital admissions can place a significant burden on health services which could potentially be avoided (Glover and Evison 2013).

Reflection-beyond-action

There was a significant indication of a cause-and-effect relationship in this case study. Before his CVA, Ted had been able to manage Margaret’s medicines effectively. However, although Ted appeared to have capacity in this area, which was time and decision-specific, his capacity fluctuated. Ted’s perceived caring role and his accidental contributions to suboptimal medicines management became a contradiction in terms. However, over time, Ted was empowered in other areas such as being formally identified as a carer and being treated by MDT members as a partner-in-care, demonstrating a person-centred and family-centred approach to care (Riffin and Wolff 2021).

Although setting up and implementing a virtual clinic is not a ‘high-tech’ process, in this case the practical aspects of assessing and managing critical events to ensure effective care and patient safety, became a fundamental element of specialist learning disability nursing care.

Margaret’s care also involved several theoretical frameworks:

An understanding of Margaret’s seizure type, severity and frequency patterns was also important in noticing and responding to her significant health changes and decline. With no interventions in place, Margaret could have potentially become a statistic – another person with a learning disability experiencing suboptimal care, health inequalities and premature mortality (NHS England and NHS Improvement 2021). The opportune timing of the ongoing virtual clinic consultations enabled the identification and reduction of Margaret’s health risks. The ongoing evaluation of patient care via the virtual clinic also revealed the overall improvement in outcomes and patient safety as shown in Table 3.

Table 3.

Improvement in outcomes and patient safety as a result of the virtual clinic

Outcome category Virtual clinic input – condition-specific outcomes and observations of significant changes
Patient (Margaret)
  • Physical symptoms – reduction in admissions

  • Recognition of and rapid response to ill-health and/or deterioration and health risks

  • Coordination and management of long-term condition and prevention of complications

  • Psychosocial outcomes:

    • Person-centred, proactive care: developing patient pathways and safety measures

    • Consistency and continuity in approach to quality care

    • Family needs considered and addressed

    • Named care coordinator: familiarity with patient history, longevity

    • Improved health outcomes

    • Inclusion and empowerment

Organisational (hospital)
  • Hospital episodes reduced

  • Cost implications – unit costs, savings

  • Use of healthcare resources reduced

  • Digital technology – more productive time

  • Nursing hours per patient day – productive

Nursing (hospital liaison nurse)
  • Ongoing improvement in nursing knowledge and skills – consultancy level, biopsychosocial-educational approach

  • Contribution to developing the learning disability liaison nurse role – to coordinate care and develop services, professional development

  • Theoretical evidence-based practice combined with rights-based, patient-centred care – organising nursing care, creating patient trajectories, diagnosis, outcomes-based

  • Liaising across multidisciplinary team specialisms – strengthening pathways, rapid response to referrals

  • Holistic patient focus – advocacy, increased job satisfaction, improved quality outcomes

  • Autonomy

Conclusion

The emphasis of this reflective case study was learning from the patient. This was an unfolding account where the patient was not requesting support, but the presenting health issue was much more complex than had been previously realised. By making reasonable adjustments and understanding the support measures required, this case study demonstrates the unique contribution that the hospital liaison nurse can make to the lives of people with learning disabilities. Intuitive and reflective practice were intrinsic to the patient’s overall care.

The presenting challenges went beyond the conventional boundaries of a medical diagnosis and treatment to include naturalistic observations, ongoing assessments and the application of an integrated and coordinated approach to care. The case study demonstrated a positive outcome for a person with a learning disability and a long-term condition. In addition, improving patient safety and optimising patient health outcomes had a positive effect on organisational outcomes and on the reflective practitioner.

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