Thank you to CLARE NICHOLSON, Clinical Specialist OCCUPATIONAL THERAPIST, from the NATIONAL HOSPITAL for NEUROLOGY and NEUROSURGERY, LONDON for contributing this page to the site. Clare explains how she uses Occupational therapy in the multidisciplinary treatment of patients with functional neurological disorders. (updated January 2020)
What is Occupational Therapy?
The primary goal of occupational therapy is to enable people to participate in daily activities that they need to do, want to do or are expected to do. The ‘occupation’ in occupational therapy does not only refer to paid work, but also to all other daily activities e.g. getting washed and dressed, meal preparation, housework, child care, leisure activities, shopping, using public transport etc. Occupational therapists can help people with movement problems (in a similar way to physiotherapy), but they can also help with symptoms of fatigue, pain, dissociative seizures, cognitive difficulties, low confidence, anxiety and low mood to name just a few. Occupational therapists work with people with FND to identify the impact that symptoms have on abilities to carry out daily activities. Treatment will be based on the goals that are set by the person. The person with FND will then work collaboratively with their occupational therapist to develop strategies to overcome barriers to participation, improve abilities, independence and confidence.
Goal setting is an important part of rehabilitation for FND and occupational therapists can help people to set realistic and achievable goals. Carefully graded goals can help people to build confidence in their own abilities and progress at a faster rate.
An example format:
Identify your goals and write them down. It can be helpful to think of both short-term and long-term goals e.g. weekly, 1, 3, 6, 9, 12 month goals. Others prefer to set goals with flexible time frames – try it out and see what works best for you!
Break down the steps towards achieving each of your goals. These steps should be realistic and approached in a graded way i.e. don’t set the bar too high as unreachable goals can lead to frustration, cause anxiety and may knock your confidence.
Put the goals somewhere you can refer to them regularly e.g. on the fridge, in a workbook that you frequently use.
Talk about your goals with the important people in your life so that they can provide support.
Cross your goals off each time you feel that you have achieved them and then move forward.
Keep the achieved goals as a reference point for your progress.
Confidence is key! Don’t move forward until you have built your confidence with each step. This graded approach can be used for any goal that you set yourself.
Note: It is also important to remember that it is very common for functional symptoms to wax and wane and you will be more prone to symptom exacerbation when you are under physical or emotional stress. If you find that your function deteriorates on occasion, try not to feel despondent. Graded goal setting can help get you back on track. Go back a few steps (using the steps that you have previously worked through) and gradually grade up your activity again.
Fatigue and Pain Management / Graded Task Practise
Fatigue and pain management are a core feature of occupational therapy treatment for people with functional neurological disorder. This is often called ‘pacing education’. Occupational therapists aim to support people to identify and manage triggers to pain and fatigue e.g. ‘boom / bust’ activity levels, poor sleep hygiene, unhelpful postures, reduced engagement in self-care activities (personal care, healthy eating and hydration, exercise).
Graded task practise (in daily activities) using the work / rest principle whilst integrating other taught symptom management techniques (e.g. normal movement, relaxation strategies) is also a key feature of occupational therapy for FND (and integral to the management of pain and fatigue).
Working with Psychological Therapies
Occupational therapists work alongside psychological therapists to assist people with FND to manage stress, low mood, low motivation and anxiety. We may do this by:
- Improving self-awareness of the signs and symptoms of stress / anxiety (e.g. sweating, racing heart, jelly legs).
- Identification of what situations / activities the person may find stressful or difficult and why this might be.
- Exploration of relaxation and stress management techniques. Integration of these strategies into daily activities and daily routines.
- Supported graded exposure to difficult or stressful tasks / situations e.g. using public transport whilst using taught symptom management techniques.
- Re-establishing occupational balance within daily life to improve stress resilience.
- Helping people with FND to recapture their occupational identity – gaining back a sense of ‘I can’, breaking down reasons for avoidance of certain activities and encouraging positive risk taking.
Managing vocational roles (study, paid or voluntary employment)
FND can make staying in work / study or returning to work / study after a period of illness very difficult. People at work / at university are likely to have a limited understanding of the problems faced by people with FND and in fact some symptoms may be ‘hidden’ e.g. fatigue and are thus often hard to explain. Occupational therapists are well placed to assist with these issues. They can do this by:
- Helping to identify how symptoms impact upon abilities to undertake study, paid or voluntary working roles.
- Assisting with the integration of taught symptom management strategies into job tasks / work environment.
- Liaising with employers or education providers regarding the impact of symptoms and how the person can be best supported in their role.
- Offering advice on reasonable adjustments e.g. alternate working patterns, changes to working roles, extended submission dates for assignments, extended time for exams.
- Making appropriate referrals e.g. Access To Work to facilitate funding for taxi transport to and from work (to better manage fatigue).
Aids and Adaptations
Occupational therapists sometimes provide mobility equipment (such as wheelchairs), as well as other adaptive aids and environmental modifications (e.g. rails and ramps). Providing equipment is a complex issue. Many people with FND have the experience of being told that they should not use adaptive equipment. The reason why clinicians tell people this is that it is widely believed that adaptive equipment can adversely change the way that we move and thus prevent or delay improvement. Also, equipment often causes secondary problems such as joint pain and muscle deconditioning. Therefore, in most cases, it is usually better to avoid unnecessary equipment use, especially if symptoms have only just started. Rehabilitation can be helpful and may reduce the need for aids and adaptations but it is often difficult to access.
It is a different situation if a person is at risk of harm without equipment or if a person continues to experience disabling symptoms after they have completed treatment. In such cases, the right equipment can improve independence and quality of life. We recommend taking a common sense approach when thinking about using equipment and getting advice from an Occupational Therapist who understands FND.
Occupational Therapists can also help by providing advice in regards to managing care needs (informal i.e. family members or formal i.e. social services). Rehabilitation with an occupational therapist can also assist by improving independence and therefore reducing care needs over time. Although we appreciate that the use of carers may be essential and appropriate in some cases, the prolonged use of carers can cause:
- Reduced confidence
- Decreased fitness and conditioning
- Decreased independence
- If significant others are providing care this may also adversely affect relationships.
Occupational therapists therefore encourage and support people with FND to work on completing daily occupations in a normal way with reduced reliance on equipment and input from others. This serves to promote independence, as well as opportunities for rehabilitation and recovery. In this way occupational therapists encourage people to view participation in all daily activities as a form of rehabilitation as participation acts to build functional strength, endurance and confidence.