Supporting people with multiple sclerosis, who have limited mobility or are full-time wheelchair users, to remain physically active with the use of Oswestry standing frames

Engaging with exercises in standing can be difficult for people whose walking and standing balance is limited. This means that the muscles controlling balance in standing are rarely used because of the fear of falling. As a result they weaken and this can lead to further problems with mobility and balance. This deterioration is often put down to a worsening of their MS, but in many cases it is the weakness caused by their inactivity that has increased their overall disability.

The objective of using Oswestry standing frames with people with MS, who have restricted standing or walking ability, was to provide them with a safe environment in which they could stand to carry out trunk exercises and activities and partake in regular exercise. The hope was that regular exercise in standing would reduce some of the insidious secondary complications that can arise from prolonged sitting and inactivity and maximise their strength at a stage of the condition when exercise was often difficult or impossible.

The specific aims were as follows: 

• To enable people to stand with their legs and hips supported but with their trunk free and to move and exercise in a way that was impossible from a sitting position.
• To maximise upper body strength and the muscles responsible for balance.
• To improve and then maximise functional activities such as rolling over in bed, sitting unsupported and transfers.
• To reduce spasm frequency.
• To reduce pain caused by poor sitting posture.
• To maintain muscle length and joint range at hips, knees and ankles.
• To improve bowel frequency.
• To find a way that people with severe MS could self-manage an exercise intervention long-term at home  with minimal support from a physiotherapist.

Many people with MS have problems with balance and lower-limb weakness which can severely restrict their ability to stand and walk. As a result, they spend much of their day sitting down. This can lead to the insidious development of deconditioning (muscle wasting), especially around the hips and trunk.

This secondary complication of inactivity can accelerate disability and dependence caused by the disease and compound the burden of care in people with MS. Long periods of inactivity can also lead to other preventable complications such as muscle contracture, pain, constipation, increased spasms and reduced breathing capacity.

It is well documented that regular exercise brings many health benefits to people of all ages. This includes people with long-term, progressive conditions such as MS. Yet finding ways of supporting people with MS, especially those with limited standing and walking ability, to remain active and engage regularly with exercise has been an on-going challenge for physiotherapists over many years.

Commonly, following assessment, physiotherapists provide a list of home exercises for people with MS. Following a qualitative study in 1999 carried out with people with MS in Norfolk, however, it became apparent that adherence to home exercise regimes was poor, especially for those who found standing difficult. Of the 24 people who were interviewed, 80% had given up the exercises after only a few days and many people found it difficult to continue once support from the physiotherapist was withdrawn.

Oswestry standing frames have been used since the 1970s and were designed to enable people with spinal cord injury to stand at home to prevent the development of secondary complications of inactivity. We began using these frames with people with MS in the 1980s and found that standing brought many benefits. A case study published in 2005 (1) showed that the regular use of a standing frame at home by a person with secondary progressive MS led to an improvement in strength, back pain, constipation and many activities of daily living. The person also expressed feelings of increased well-being and control when standing in a fully upright position and they were able to self-manage the frame at home. Self-management is an important aspect of many physiotherapeutic interventions.

A pilot study with nine people with severe MS (2) further demonstrated that regular standing improved motor ability, activities of daily living and spasms and also improved posture, bladder and bowel control, fall rate and breathing.

Oswestry standing frames may provide a cost-effective way for people with severe MS to engage with exercise over the long-term.  Regular, self-managed use may prevent or reduce the secondary complications of inactivity and enable people to regain a sense of well-being.

Refs:

(1) Hendrie, W. (2005) Stand and deliver: how the use of an Oswestry standing frame improved sitting balance and function in a case of secondary progressive MS. Synapse Autumn/Winter pp20-22

(2) Hendrie, WA. Watson, MJ. McArthur, M. (2014). A pilot mixed methods investigation of the use of Oswestry standing frames in the homes of nine people with severe multiple sclerosis. Disability and Rehabilitation 37(13):1178-1185

Oswestry standing frames are commonly found in physiotherapy outpatient departments and are used to enable people with neurological conditions such as spinal cord injury, stroke and Parkinson’s disease to regain a standing position as part of their rehabilitation.

Physiotherapists are familiar with the use of Oswestry standing frames but they are currently underused for people with MS, especially as an intervention that can be self-managed at home. This is either because therapists have not considered their use in this way or due to funding restrictions. Special purchase orders for frames can be made on a case-by-case basis. However, the request asks for evidence of benefit and this is currently scant. A randomised controlled trial looking at the effectiveness and cost-effectiveness of a home-based, self-managed standing frame programme, however, is currently underway (SUMS study: www.plymouth.ac.uk/research/sums).

Some Central Equipment Stores hold a small number of Oswestry frames for use in the community, but it is often difficult to get frames in the numbers required. In Norfolk, some people with MS have received a frame from the NHS, but others have either purchased them privately (£450.00) or money has been sourced from local charities. People with MS can also attend a weekly class, run voluntarily by a physiotherapist, where they can use an Oswestry frame, but this facility is unavailable in most parts of the UK.

The criteria for recommending frames for home use is:

• Problems with mobility or balance that limits standing.
• No history of conditions such as epilepsy, osteoporotic fractures, severe lower limb contracture.
• Able to pull into standing with minimal help.
• Room in the home for the frame.
• Standing assistant (spouse or carer) to secure straps.

People are advised to stand for at least 90 minutes per week, based on studies with people with spinal cord injury, although many stand for 30-60 mins per day. Exercises and functional activities can also be done in the frame.  People often take a few weeks to reach their maximum standing time and many experience transient symptoms of backache or muscle pain. Anyone experiencing long-term adverse effects is told to stop using the frame and inform their physiotherapist. Frames are easy to use and it has been our experience that people with MS and their standing assistant need up to two visits by a physiotherapist to explain how to use the frame followed up by phone-calls.

The benefits of regular frame use has been shown both clinically and by a quantitative and qualitative pilot study which was undertaken with nine people with MS in Norfolk.  Outcomes have shown that regular standing in an Oswestry standing frame improves some of the problems experienced by people with severe MS and also improves feelings of well-being.    

Quantitatively, people who stood regularly as part of a pilot study showed statistically significant improvements in motor ability (i.e. strength) as measured by the Amended Motor Club Assessment. This looks at upper and lower limb movement as well as functional activities such as rolling over, sitting and standing balance and transfers. Regular standing has also been shown to improve activities of daily living measured by the Canadian Occupational Performance Measure (COPM), especially activities of personal and domestic care such as showering, dressing and cooking as balance has improved with standing. Improvements have also been shown in spasm frequency (PENN spasm scale). 

Qualitative findings have shown that regular standing has given rise to a number of important psychological changes.

After standing, people with MS felt stronger in their trunk and told of how standing had helped them to regain some lost skills such as dressing and cooking. Mobility and transfers also improved and falls were reduced. Bladder and bowel control also improved. These changes gave rise to feelings of increased confidence and a greater sense of control.

Standing fully upright in the frame made them feel tall and straight and like their old selves again which increased their sense of well-being.

Standing allowed them to feel a sense of belonging again within the family and wider world. Sitting in a wheelchair had often limited their interactions with others. They felt as if the world was going on ‘up there’ without them and that by standing they were part of what was happening again.

After standing, people felt more optimistic about their future. 

Every person with MS who has been given a frame to use at home has successfully self-managed the frame following a short training session. Some people experience transient low back or leg pain at the outset of standing but this usually eases quickly. Unlike many exercise interventions, adherence with frame use has been shown to be excellent and many have used their frames 3 or more times a week for more than 10 years.

1. Oswestry standing frames may be a useful intervention for physiotherapists to recommend to people with MS to encourage engagement with activity and exercise over the long-term.
2. Oswestry standing frames are simple to use, relatively cheap and cost-effective (approximately £450) and can be self-managed by people with MS in their own homes. 
3. Their use can delay or prevent the onset of many secondary complications of inactivity experienced by people with MS who are restricted in their mobility.
4. Secondary complications of inactivity in MS, such as pressure ulcers, contractures and increased spasms can be hugely costly both to the person with MS and the NHS.
5. The benefits of regular standing are not only physical (increased strength, ability to perform activities of daily living, fewer falls, improved continence, decreased spasms) but standing also has a positive psychological effect. People reported feeling ‘normal’ again because of the upright position achieved in the frame. It also gave them hope for the future in that they      were achieving something rather than just spending their day inactive in a chair.

There are a variety of ways in which physiotherapists can support people with MS to remain physically active in a standing frame:

• Tailor the activities people do while standing to the lifestyle and personality of the patient e.g. drawing.
• Emphasise the importance of long-term activity. Health professionals need to emphasise the importance of ‘static success’ – the concept that staying the same is very important against the back-drop of a progressive disease. Regular standing may slow down the rate at which someone with MS deteriorates by maximising their strength. 
• Gyms and standing frames. Some gyms run classes for disabled people and could have standing frames as part of their equipment.  

Telemedicine/skype/text/email. Electronic reminders can help people to maintain activities. It can also be used to ask questions quickly and easily so that any challenges or problems are resolved quickly.