Occupational therapy services
What do people with multiple sclerosis want from an occupational therapy service?
Dr Jenny Preston, Consultant Occupational Therapist,
Lynn Lamont, MS Specialist Occupational Therapist,
Douglas Grant Rehabilitation Centre, Irvine
Way Ahead 2010;14(2):8-9
Introduction
The Douglas Grant Rehabilitation Centre is a neurological rehabilitation service which was established in the west of Scotland in 1990. A full range of rehabilitation services are offered by a comprehensive multidisciplinary team across the NHS Ayrshire and Arran health board area. The occupational therapy department provides services to patients with a range of neurological conditions including MS. There are currently approximately 1,200 patients with a diagnosis of multiple sclerosis known to the Ayrshire Multiple Sclerosis Service.
From professional discussion within the occupational therapy service it became apparent that differences existed between the clinical practices of individual therapists with considerable variation in the longer term management of multiple sclerosis.
An audit was subsequently commissioned in 1998 which involved a retrospective analysis of 200 randomly selected occupational therapy records. The key outcomes from this audit highlighted inconsistent use of standardised assessment tools; lack of a clear management plan for people with MS, including poorly coordinated review programmes; lack of clear outcomes following occupational therapy intervention; and a lack of service user involvement in the development of services.
In response to these findings the occupational therapy staff developed a clinical guideline for the management of MS. This incorporated a range of packages for assessment, rehabilitation and management aimed at different disease phases, nominally: diagnosis; minimal disability; moderate disability; and severe disability. Specific programmes of occupational therapy interventions were identified for each stage.
One of the key components of these guidelines was the introduction of a programme of planned reviews for people with MS. Every person with a diagnosis of MS known to the occupational therapy service would be offered six monthly review appointments either within the centre or within their own homes. The guidelines were implemented in June 1999 and a review audit was completed in August 2000.
Figure 1 Occupational therapy review plan
Using a similar approach, a retrospective audit of 100 occupational therapy cases records was completed. As Figure 1 illustrates, there was a significant improvement in the number of planned reviews which were being carried out compared to the previous audit. The data presented in Figure 2 confirms a significant improvement in the planning and delivery of regular review programmes.
Figure 2 Completed occupational therapy reviews
Aims
Despite significant progress there was still recognition of the lack of service user involvement in the review of the service. With the support of the MS Trust and the MS Society Scotland a research study was conducted in an attempt to understand how people with MS experienced the occupational therapy service and to try to identify what they would want and expect from future services.
Methodology
The data from this qualitative study were generated through nine focus groups including two groups for partners/carers (n=10), one group for occupational therapy staff (n=6) and six groups for people with MS (n=30). People with MS were divided into groups according to their disease duration in an attempt to capture potentially different needs and expectations. Five people with MS had been diagnosed less than 5 years previously; 10 people had been diagnosed between 6 and 10 years; and 15 people had been diagnosed more than 10 years ago. 7 men and 23 women were included within the study and the ages of the MS participants ranged from 32 years to 61 years.
Findings
Occupational therapy, as a line of work and potential help, was not widely recognised by the participants; few people knew what the service offered, and even less knew what could be done for them. The real comprehension of occupational therapy seems to come only after direct involvement with the service.
There were two key factors which appeared to act as barriers to the uptake and continued use of occupational therapy. The first is the way that an occupational therapy service presents itself to its service users, especially through the use of diagnostic tools and therapeutic activities. The second is the less immediate impact on a person's wellbeing that occupational therapy seems to have when compared to interventions like physiotherapy.
This is not a comment on the relative merits of occupational therapy, but recognition of the challenges that lie in how it is perceived.
While some of the carers felt that physiotherapy was of more use than occupational therapy, this was at odds with people with MS who felt both were different and mutually useful. There were also differences between participants in the way MS had affected them that influenced how they perceived an occupational therapy service. For example, those who had experienced a relapse found the occupational therapy service extremely useful in helping them to get back some of the abilities they had lost.
While the occupational therapy participants felt that home visits facilitated a far greater 'disclosure' by the person with MS than a visit to a centre, some participants stated that they initially found it difficult to accept help in their home and perceived it as an invasion of their privacy. The importance of space away from families to speak openly and honestly about their condition was also very important to those with MS.
The adaptations made to participants' homes were on the whole seen as excellent and much appreciated, with the majority of changes reported to have made an improvement in their quality of life. In many respects, such physical changes were people's most 'tangible' point of contact with the occupational therapy service. The services in Ayrshire and Arran were generally regarded as impressive by those who used them but the inequality between the different Local Authorities in Ayrshire in the provision of and support for their occupational therapy services was highlighted. It was felt improved coordination and awareness of services was needed.
A key factor recognised by both the occupational therapists and people with MS was the importance of developing a rapport between the occupational therapist and the person with MS. In relation to the occupational therapy services provided through the Douglas Grant Rehabilitation Centre, the interpersonal and relationship skills of the team were seen as very strong.
Respondents felt that there was a good balance between independence and assistance offered by the occupational therapy service at the Douglas Grant Rehabilitation Centre and the six month reminder appeared to suit the majority of participants.
Key findings
- There is a clear need to raise the profile of occupational therapy.
- Occupational therapists would prefer to have earlier involvement with people once they have been given a diagnosis of MS.
- The facilities at the centre were recognised as extremely good and it was felt that it was important that all people with MS had access to them.
- The majority of those currently using the occupational therapy service thought that the follow up every six months was very useful.
- The differences in the equipment which could be provided by local authorities were stark in the focus groups. If improvements could be made in this area, they would be well appreciated by those with MS and those who care for them.
Acknowledgement
The Douglas Grant Rehabilitation Centre Occupational Therapy Service would like to thank the MS Trust for a research grant to support this study and the Multiple Sclerosis Society, Scotland for additional funding.
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