Managing an employee with multiple sclerosis can be challenging, especially if they are working in a safety-critical capacity. Nancy Njuguna and Anne Harriss assess the important role occupational health can play in leading both return to work and support once back at work.
This article explores the occupational health (OH) care provided to Jade (pseudonym), a 38-year-old quality and safety assessor of electrical equipment.
Jade’s job role involved administrative tasks and live electrical testing. She had also been diagnosed with multiple sclerosis (MS) 18 months previously and had been absent from work for the previous four weeks. She had been referred by her manager for advice regarding appropriate workplace modifications.
About the authors
Nancy Njuguna is a specialist occupational health nurse and Professor Anne Harriss is emeritus professor at South Bank University
MS is associated with a range of physical and cognitive difficulties and is a leading non-traumatic cause of neurological disability in adults aged between 20-40 (Sweetland, 2010) affecting mobility and independent living (Bishop et al., 2013).
Many MS patients decide to take on less demanding work roles, some reducing their working hours or terminating their employment (Moore, 2013).
This demyelinating disease affects the central nervous system (CNS) and is characterised by the development of abnormal plaques in the brain and spinal cord (Kalincik, 2015).
The pathogenesis of MS is complex, although not fully understood. It is thought to result from autoimmune-mediated inflammatory damage, presenting clinical variability and progressive disability (Gottberg et al,2016).
It involves an abnormal autoimmune-based, type IV, hypersensitivity response, with the immune system attacking its own healthy tissues, mainly myelinated axons, which are primary components of brain white matter. Myelin and neuron axons are affected, so disrupting the transmission of neural impulses to the brain (Feysa et al., 2013).
Infections have been associated with the development of MS. Micro-organisms, including Epstein-Barr virus, human herpes virus-6, varicella zoster virus, chlamydia and pneumonia are suggested agents (Handel et al, 2010). The bouts of autoimmune attack occur over many months or years.
MS typically manifests different phases, with the early phase characterised by relapses and a later phase with progressive disability. There are four clinical subtypes, including:
- relapsing remitting MS
- primary progressive MS
- secondary progressive MS
- progressive relapsing MS
Relapsing remitting MS is the most common, and is characterised by bouts of exacerbation with periods of remission. Primary progressive MS incorporates constant attacks of myelin causing a steady progression of chronic disability. Secondary progressive MS initially mirrors relapsing remitting MS. However, over time the immune response becomes constant causing a steady progression of disability.
Fitness for work assessment (FFW)
A successful return to work (RTW) was a fundamental health outcome of the OH interview and important in promoting Jade’s sense of recovery.
At the time of the assessment Jade was absent from work because of fatigue and cognitive difficulties, both associated with her MS diagnosis. She was unable to fulfil her present role until adjustments could be made to mitigate her functional limitations (Holling and Harriss, 2018).
The Murugiah model incorporates cognisance of legal requirements; of particular relevance is the Equality Act 2010, which protects the rights of individuals with disabling long-term conditions. Employers also have responsibilities under the Health and Safety at Work Act 1974 (HSWA) to protect employees following a RTW, particularly if they are more vulnerable to risk as a result of illness, injury or disability (Health and Safety Executive 2004).
To effectively provide advice on appropriate job modifications, the OHN required an understanding of the pathology of MS and Jade’s job demands, linking these to risk assessments.
A detailed knowledge of the organisational purpose, roles, environment and workplace culture was also helpful. With this knowledge, the OHN was able to suggest appropriate modifications in compliance with the requirements of the Equality Act 2010. MS is one of few conditions covered by the Equality Act (2010) from the point of diagnosis.
In line with good practice, the management referral included details of Jade’s job requirements, confirmed her written consent to attend and for information to be shared with third parties.
The assessment aimed to establish her ability to carry out her contracted role safely. Her past and current medical history and treatment, job demands, responsibilities, working relationships and patterns of sickness absence were all noted. Barriers for returning to work were recognised, with the aim of making recommendations to address these.
The assessment commenced by an assurance of the confidential nature of the consultation. As Jade expressed concerns for her continuing employment, the OHN explained the aim of her assessment was to recommend possible workplace adjustments that would allow her to work effectively without compromising her health.
The biopsychosocial model of health, a systematic approach suggested by Engel (1980) considers the biological, psychological and social aspects of health and illness was used as a basis for the assessment (Wade and Halligan, 2017).
This approach incorporates coloured clinical “flags” associated with various physical and psychological symptoms. The fitness for work framework proposed by Murugiah et al, (2002), was also applied to facilitate a holistic assessment. This model incorporates four main elements: personal aspects, the workplace environment, characteristics of job role and legal aspects. It considers the physical, psychological, and sociological facets of health and overlaps with Engel’s biopsychosocial model. These models were used to develop a strategy for Jade’s RTW.
The initial consultation with Jade focused on understanding her health status and took account of her social history, current and past medical history. How MS affected her ability to perform activities of daily living both at work and in her private life was documented, as these are fundamental to effective history-taking.
Jade considered herself well until a year prior to her formal diagnosis. At that point she noted tingling in her hands, causing her difficulties in using door handles. She also experienced severe electric shock-like sensations in her head and neck when bending forward.
These symptoms, known as Lhermitte’s sign, are associated with spinal cord lesions. Jade consulted her GP. A subsequent neurology referral resulted in a diagnosis of relapsing remitting MS.
A series of work absences and two hospital admissions followed. On discharge, Jade was referred to a multidisciplinary support team for counselling and physio and occupational therapy. Multidisciplinary rehabilitation programmes facilitating collaborative decision-making and empowerment are important strategies in supporting people with MS (Simmons 2010).
Jade had recently experienced increasing episodes of tremors and prolonged fatigue, both associated with disease progression. For Jade, fatigue was the most frustrating symptom and can lead to disability (Asano and Finlayson 2014).
It was also the most significant barrier to Jade returning to work. For many MS patients, fatigue is associated with their decision to reduce their working hours or to leave work entirely (Moore et al, 2013).
Jade experienced nocturia, which exacerbated her already interrupted sleep patterns. Nocturia is associated with the effects of MS on the autonomic nervous system (Foschi et al, 2019), a red flag within the biopsychosocial model (Tur, 2016).
MS patients often experience the urge to void frequently at night, in turn affecting their life quality and increasing their levels of fatigue. Sleep hygiene advice was suggested.
The fatigue associated with MS is broadly divided into primary and secondary conditions (Tur 2016). Primary fatigue has no apparent cause and is specific to MS, whilst secondary fatigue relates to other conditions, some of which are MS-related (Tur, 2016). They nevertheless have a profound impact on social, occupational, psychological, physical and economic performance (Boissy and Cohen, 2014). Early treatment with disease-modifying therapies was essential in supporting her RTW.
Several systematic reviews advocate collaborative multidisciplinary rehabilitation for improving functional capability for MS patients experiencing mild to moderate disability and cognitive impairment (Khan and Amatya, 2017). Effective symptom management and development of an effective rehabilitation programme to support Jade to remain at work utilised multi-professional collaboration with clinicians including an MS specialist nurse, physical and cognitive behavioural therapists, the occupational physician, Jade’s GP and her neurologist.
Although pharmacological interventions using Amantadine can be used, current guidelines, based on randomised control trials, recommend non-pharmacological interventions to treat mixed physical/psychological MS-related fatigue, (Yang et al, 2017).
Jade had not been prescribed medication. Comprehensive symptom management, especially fatigue management, was initiated. This would help Jade cope with her lethargy and support the preservation of her employment status during any disease progression. Her occupational therapist considered exercise to be effective in the management of fatigue and recommended gentle exercise, including yoga.
Jade became tearful when describing her experiences of coping with her diagnosis. Her cognitive decline was apparent to her, affecting her concentration, memory and difficulties dealing with complex scenarios. Concentration and memory difficulties are often cited as reasons for individuals with MS leaving employment (Eng et al, 2014).
Jade’s cognitive impairments were a significant barrier to her RTW. She had a tendency to become emotional, which affected her coping skills. These were blue flags within the bio-psychosocial model of health. Her community support team had referred her for cognitive rehabilitation therapy (Guenter et al, 2015) for support in this regard.
The relationship between job retention and psychological factors, particularly for individuals with relapsing remitting MS, is unclear. Effective symptom management, social support, and psychological interventions are effective in aiding job retention (Eng et al, 2014). Jade had accessed a community-based intervention, Memory, Attention Problem Solving Skills-MS (MAPSS-MS).
Jade’s psychological wellbeing was assessed using the patient health questionnaire (PHQ)-9. She scored two on this 9-point scale, which discounted depression (NICE, 2015).
Jade was already accessing CBT, which was enhancing her mental wellbeing (Thornbory, 2014). To identify the extent of her cognitive deficits, the OHN liaised with an occupational physician, who referred Jade for a cognitive assessment test (Orla and Helmut, 2008). This indicated mild cognitive impairment.
Jade was a mother of two young children and had good support from her husband and her mother. She had recently been experiencing difficulties preparing meals for the family because of the fatigue she was experiencing. She feared being unable to support her husband in caring for their family in the long term and expressed anxieties regarding the financial toll her condition could have on her family. This is a yellow flag within the biopsychosocial model of health.
At work, Jade was withdrawing herself from colleagues, citing poor support from her manager and colleagues, including stating they did not understand the effects of MS on her functioning at work.
The OHN identified financial worries, job demands, long shift patterns and social isolation (Eng et al, 2014) as significant stressors affecting Jade’s psychological wellbeing. She suggested Jade might find it helpful to join MS support groups so that she could make contact with other MS patients, thereby giving opportunities for moral support and learn of their coping skills. She was given details of the national and local MS societies and support groups.
Functional capacity and work assessment
Jade experienced disabling mental and physical fatigue; she had low energy levels and lacked power in her limbs. Walking was becoming challenging and standing for more than half an hour was becoming increasingly difficult.
Fatigue was affecting all aspects of daily living, affecting her quality of life. Engaging in prolonged physical activities and hot environments exacerbated her fatigue. Jade also expressed her concern about experiencing hand tremors, particularly when tired.
Jade experienced concentration difficulties. Completing the intricate task of working with live electrical testing – a safety critical task – was becoming extremely demanding.
To facilitate Jade in undertaking her job role safely on her RTW, with Jade’s consent the OHN sought advice and support from the health and safety manager. A safe system of work to accommodate Jade’s health and health and safety needs within her role was developed. The plan, agreed between the OHN, Jade and her manager incorporated the advice given by the safety adviser.
Jade was considered well enough to return to her role on a phased return of six weeks. During the phased return period it was agreed she would not to work with live electricity.
Once completed, and provided Jade’s concentration was sufficient to allow her to work safely, a recommendation was made that, subject to the findings of a further risk assessment, work with live electricity could be gradually re-introduced and her ability to manage this element of her role should be reassessed.
It was suggested that Jade’s RTW was phased, commencing with four hours of work a day, building up over a six-week timescale to her full-time working hours. This regimen should be subject to continuous review, with a re-referral to OH if she experienced difficulties in managing this programme. A further recommendation was that she should be able to conduct her work from a seated position.
Uncomfortable working environments have the potential to reduce participation. Jade stated that where she worked could be cold in the winter and hot in the summer, and this affected her concentration. A thermal risk assessment was therefore recommended.
As a result of this management referral and the recommendations made by the OHN, Jade made a successful phased RTW. Both Jade and her manager were advised that, should she experience a further health deterioration or if she struggled in the workplace, a further OH review could be arranged. At the time of writing Jade’s condition was in remission and she was managing her home and workplace responsibilities.
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