Working with MS: experiences of people with MS and professionals
Gail Townsend, Research Occupational Therapist
Buckinghamshire PCT
Way Ahead 2008;12(2):10-12
Introduction
An extensive literature review in 2004, found that very little research into the experiences of people with MS (pwMS) at work had been carried out in the UK. A comparatively greater number of studies exploring both the problems of pwMS at work and the interventions that may help support them in employment has been carried out in North America [1-7]. Though such studies offer useful insight, the UK has a different health and social structure meaning that the experiences of pwMS in the UK may differ from that of pwMS living in North America. During 2005 and 2006 this project was developed to explore the experiences of people with MS and the professionals who may be supporting them in employment. In March 2005 the Department of Health launched the National Service Framework for Long-term Conditions [8]. This has a Quality Requirement for vocational rehabilitation (QR6). However, while the need for people to continue in valued life roles such as work was recognised, evidence to guide good practice in this area was in short supply. Expert opinion had also identified that resources and skills to deliver vocational rehabilitation had been eroded over the previous 20 years [9].
Methods
The study had two distinct parts: the experience of people with MS; and the experience and practice of professionals. The experience of the pwMS was gained in three ways: focus groups; postal questionnaires; and post-questionnaire interviews. A postal questionnaire was also used to identify the experience and practice of professionals. Recruitment to the groups and questionnaires was via advertisement in print and electronic media and recruitment to the interviews was from the people who took part in the focus groups. The collected data; both quantitative and qualitative, was then subject to the relevant computer-based analysis programs.
Findings
A total of 166 people took part in the study: 96 pwMS and 70 professionals. 14 people with MS contributed to the development of the questionnaire and three of these people took part in the post-questionnaire interviews. A breakdown of the 82 pwMS and the professional participants is shown in the tables below.
Survey participants (pwMS)
| Number (percentage) | Mean time since diagnosis | Employed | Self Employed | Not working | |
|---|---|---|---|---|---|
| Male | 29 (35%) | 6 years 3 months | 21 | 2 | 6 |
| Female | 53 (65%) | 6 years 5 months | 42 | 3 | 8 |
Professional participants
| Discipline | Number of respondents | Mean years qualified | Mean years working with people with MS |
|---|---|---|---|
| Occupational Therapists | 32 | 12.09 | 7.10 |
| MS specialist nurses | 26 | 20.34 | 7.81 |
| MS specialist physiotherapists | 4 | 25.00 | 18.37 |
| Disability employment advisors | 8 | 9.7 (years working as a DEA) | n/a |
Though people with MS value being in employment, the survey revealed that they face a number of day to day difficulties and problems. Respondents to the postal survey reported a mean of 5.4 MS problems (range 0-12). The table below shows the ten most common MS problems. They also reported a mean of three barriers in the workplace (see graph). 14 people identified other workplace problems such as specific job demands, noisy or hazardous environment.
The top 10 MS problems reported by people with MS
- Fatigue - 89% (73 people)
- Mobility - 63% (52)
- Balance - 61% (50)
- Continence - 47% (39)
- Fine hand movements - 47% (39)
- Concentration - 47% (39)
- Memory - 45% (37)
- Pain - 37% (31)
- Organising myself or my work - 24% (19)
- Visual problems - 22% (18)
When the pwMS were asked about the workplace support they had received, 39 reported that they had received no support in the workplace. Surprisingly, while 37 pwMS reported that they had difficulty with travel to work, only four reported that they had received help with fares to work.
Difficulties associated with the workplace
- Stairs - 53
- Getting around inside building - 35
- Getting into building - 32
- Too warm or too cold - 32
- Parking - 28
- Driving to work -20
- Toilet facilities - 18
- Public transport - 17
- Other difficulties - 14
The pwMS were also asked about what help or support they had received from health or social care professionals for work issues. 34 pwMS wrote 'none', (four people didn't answer this question). Of those that had had some help, doctors were the most frequently mentioned, with 13 mentioning their GP, and 14 specifying some other type of doctor. MS nurses were the next most frequent (12), but therapists were mentioned only rarely. The kind of help they said was given fell into the following categories:
- information
- signposting
- advice to reduce or stop work
- symptom management
- sick certification; and
- promoting a healthy lifestyle
A number of pwMS reported a mixed experience with inconsistent levels of support from various professionals:
"MS Nurse - excellent help - but doesn't understand my role - so although great in terms of understanding my MS and work, not easy to pass info on to work"
"Just some leaflets and a booklet"
"Suggestions have been made that I slow down and not drive as many miles. This I have done and doctors have suggested that I might need to go onto incapacity or long term sick. This I will fight as long as I can"
Others felt fully supported in their roles:
"OH [Occupational Health] doctor has been very helpful and supportive advising and pushing for gradual return to normal working hours rather than short time. GP also very supportive, he recognises my need to work, as well as offering to lend support should I wish to cease"
As part of their survey, professionals were asked what interventions they offered pwMS in relation to work. 56 of the 70 professional respondents (80%) completed this section of the questionnaire. There was wide variation in what individual professionals offered. Some professionals offered a number of different interventions, for example if an individual offered one workplace intervention such as workplace assessment, then they often offered another such as advocacy or equipment assessment. This compares to other respondents where information was the only intervention offered.
Breakdown of intervention type
- Information - 52
- Advice or programme for management of fatigue - 40
- Form completion - 26
- Workplace assessment - 19
- Support and/or advocacy in the workplace - 15
- Other symptom management - 13
- Advice or programme for management of cognitive difficulties - 10
- Assessment for equipment - 7
- Letter of support - 4
Respondents reported a number of barriers to providing vocational support to pwMS. A common theme emerged in relation to ensuring the pwMS received timely information and support.
"I think a lot of pwMS give up work before they need to. The challenge is to get the right information and support to them before they give up"
"Although I am linked into our regional neurological unit it is still difficult to get referrals early enough to prevent patients giving up work. It seems they drop out of the system post-diagnosis and then visit their GP with work related problems and are advised, 'it's time to give up work'"
"I wonder if I saw these people earlier when they were still at work, if the long-term prognosis would be changed at all?"
Another major barrier was identified within resources and service culture:
"It is an essential component of rehabilitation for individuals with MS but is often not prioritised within the NHS"
"Very time consuming and input is long term. Very few people are afforded the luxury of ongoing advice from OTs"
Conclusions
People with MS were generally positive about staying in employment. However, they faced a number of problems and barriers in the workplace and did not appear to receive the support that may have helped them stay in employment for as long as they wished. Their perceived lack of support from health and social care professionals may be a reflection of the barriers faced by healthcare professionals in delivering support to maintain employment. The pressures healthcare professionals are up against often includes scarcity of resources and timeliness of referral.
While supporting people with long term conditions in employment is moving up the national agenda, there needs to be further research and development to enable health and social services deliver that support at the right place, the right time, and in the right way. Following on from this study, a further project is underway to develop a practice toolkit for health and social care professionals to support them in delivering vocational interventions to people with MS.M
Acknowledgements
I should like to thank all the people who took part in this study and shared their experiences with me, the MS Trust for their ongoing support of this project, and my supervisors at Oxford Brookes University.
The MS Trust has produced a booklet aimed to offer support to people with MS in the workplace. At Work with MS contains lots of useful information and features contributions from participants in this research project.
References
- Dyck I, Jongbloed L
Women with multiple sclerosis and employment issues: a focus on social and institutional environments
Can J Occup Ther, 2000; 67(5):337-346. - Johnson KL, Fraser RT
Mitigating the impact of multiple sclerosis on employment
Phys Med Rehabil Clin N Am 2005; 16(2):571-582. - Rumrill PD, et al
Issues in employment and career development for people with multiple sclerosis: meeting the needs of an emerging vocational rehabilitation clientele
J Vocational Rehabil 2000; 14(2):109-117. - Gulick EE, Yam M, Touw MM
Performance by persons with multiple sclerosis: conditions that impede or enable performance of work
Int J Nurs Stud 1989;26:01-11. - Beatty WW, et al
Demographic, clinical and cognitive characteristics of multiple sclerosis patients who continue to work
J Neurol Rehabil 1995; 9(3):167-173. - Fraser RT, et al
Vocational rehabilitation in multiple sclerosis (MS): A profile of clients seeking services
Work 2003; 21(1): 69-76. - Roessler RT, Rumrill PD, Fitzgerald SM
Predictors of employment status for people with multiple sclerosis
Rehabil Couns Bull 2004; 47(2):96-103. - Department of Health
The National Service Framework for Long-Term Conditions
London:DH; 2005. - British Society of Rehabilitation Medicine
Vocational rehabilitation - the way forward
2nd ed. London: British Society of Rehabilitation Medicine; 2003.
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