IntroductionOccupational Therapists (OTs) have a number of skills and techniques that can be helpful to people with lupus.They are employed by the NHS and work in OT Departments in District General Hospitals, where they offer both in-patient and out-patient services, as well as in the Community from where they tend to work with people in their own homes. There are also OTs employed by Social Services who are involved in Home Assessments, the provision of equipment and the planning of structural alterations. All these OTs are in touch with each other and provide a network of care for people in need of their services. They can be accessed via Hospital Specialists, General Practitioners or Social Workers. Others work free-lance or for private agencies.
Not every person with lupus will need OT support but specialist advice can be particularly helpful under the following circumstances:
ArthritisPhysiotherapy is often appropriate but OT is particularly helpful where the upper limb is affected, especially the hands and wrists. When the arthritis is acute splints are custom-made to support the joints of the hands and wrists to provide rest and pain relief as well as to hold the joints in optimal positions to prevent the shortening of tendons and ligaments that may result in deformity. The splints may be for night use or for daytime wear to provide support during activity. Whilst Physiotherapists tend to work on muscle power in the bigger muscles, OTs teach exercises to promote the fine movements and tasks performed by the hands. They will also teach a regime of 'joint sparing' in Activities of Daily Living (ADL) to decrease the stress on inflamed joints. The use of thickened grips and handles on utensils, tap levers etc. are examples of these measures.
Aids and AppliancesWhen there is some degree of physical disability due, for instance, to arthritis, neurological lesions, shortness of breath or extreme fatigue, considerable benefit may be derived from the provision of aids and appliances. A wide variety of these are available through the NHS, Social Services or by private purchase so advice on which are the most suitable is helpful. OTs will carry out an assessment of ADL which includes washing, dressing, toiletting, mobility, cooking, hobbies, work tasks etc. and is best done in the home and workplace. Solutions vary from simple gadgets like long-handled shoehorns to adapted keyboards for computer users or 'hands free' telephones. The OT will also give advice on how to apply for equipment that is available from the Statutory Services and on suppliers from whom other items can be purchased.
Mobility AidsThere are a variety of frames and walkers (some folding), perching stools, high seats and sprung cushions for aiding getting up and walking. For people with more severe mobility problems a folding manual wheelchair or an electric-powered wheelchair would facilitate getting about and may well expand activities and widen horizons. Again, there are many different types and it is important for a wheelchair user to have an appropriate model to provide good position and seating and to meet the required range of activities. Some are available through the NHS via the District Wheelchair Service which provides a range of manual and electric powered chairs. A Voucher Scheme has been introduced for people eligible for wheelchairs but perhaps wishing a wider choice. It is usual for OTs to make the referral to the Wheelchair Service.
Home AdaptationsNecessary Home Adaptations may include widening doorways and fitting access ramps to facilitate wheelchair use, lowering kitchen work surfaces, installing showers and fitting lifts or stair lifts. People with severe physical disability may need special mattresses, slings and hoists or, perhaps, a specially designed en-suite bathroom. Sometimes the preferred option would be to move house to ground floor or specially adapted accommodation. These are major and complex issues and the OTs attached to Social Services are expert at assessing needs and solutions and giving advice. Under some circumstances financial help is available and OTs and Social Workers will advise on eligibility and how to apply.
Workplace AdaptationsWhen someone with a physical disability needs special equipment, structural adaptations or special training to obtain or retain work there may be help available from the Employment Service. In such a case it would often be an OT who would do the initial assessments of need and would then make a referral to the Employment Service via the Disability Employment Adviser based at a Jobcentre.
Dr Sylvia Lachmann FRCP
Lecturer in Rehabilitation Medicine (Retired)
University of Cambridge