Evidence
[Text on screen] “Noticing a difference”

[Narrator 1] It’s made a real difference to me, I'm certainly happier to stand, that the backs of my knees don't ache quite as much, and I think I'm stronger, I'm hoping. And I also know that it's, you know, strengthened my core. I'm much happier moving, moving myself around. And, it’s you know, it's made an, it’s made an amazing difference to our lives.
We’re sometimes using it just to get me dressed in the morning. You know, I put my wheelchair commode up to it and I, and I, and I stand without putting my frame behind my ankles. So I'm standing enough and leaning over and then I can support myself standing, holding on, and you know up go, me knickers get pulled up and me trousers get pulled up and it's really fantastic. We've been using it, quite a lot to help us aid other movements.

[Narrator 2] Yesterday I went to lunch with a, at a friend's house, and she has quite a narrow, sort of hallway, and I always find it difficult to take my rollator. So because I have had no falls since I've been using the standing frame, and I've been feeling a little more confident with my balance, I decided to use my husband's arm and a crutch to see if I could manage to walk into her house. It was fine, I managed fine, although there were a couple of steps up to get into her house, moving around inside the house it was absolutely perfect.
So I'm so pleased, because I'm absolutely certain that standing, the improved feeling that I have that I can balance now, it was just really absolutely brilliant. And getting back into the car and everything, I'm just so happy that I managed to do it.

[Narrator 3] We suddenly noticed, he was past the salad bowl and he reached in with the two salad servers and helped himself. He's never been able to do that before, because he's always had to hold on with one hand. And then I caught him piling the plates, reaching across the table, picking out plates, putting them on top of each other, and taking them out to the kitchen. It's just, um, been fantastic.

[Narrator 4] I don’t have the spasms I used to have, by any means. In fact I really cut down on that Baclofen which is the anti-spasm drug. And bowels, and things like that, where I’d always struggled to the toilet, I think obviously because I'm sitting down too much, and within about a couple of weeks I suppose, that felt so much easier, and I could go on demand. It sounds horrible but I could, so that’s really really good.

[Narrator 5] He's now been doing this for two weeks, and we're already noticing a difference. A couple of days ago I realized he was getting back into his chair much more easily, i.e. when he's standing up, he used to just go ‘flop’ backwards into his chair and you had to hope it was in the right position, but now he goes in a very controlled manner into the sitting position.

[Narrator 6] Today we noticed while I'm driving the car that he's not holding on. It's not because I drive so badly, but he usually hangs on for grim death as we go around corners, because he can't hold himself up. But now, he notices he doesn't have to. So it's not that my driving has improved, it’s his core stability has improved, so all great and as I say he's in a frightfully good mood.

Logo: SUMS Standing Up in People with Multiple Sclerosis.
[Text on screen] With thanks to those who shared their stories about using a standing frame as part of the Standing Up in Multiple Sclerosis (SUMS) research trial.

Logo: NHS
[Text on screen] National Institute for Health Research
This study was funded by the NIHR RfPB programme (project number PB-PG-1013-32047).
The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

Logos: Torbay and South Devon NHS Foundation Trust, Suffolk Community Healthcare, Northern Devon Healthcare NHS Trust, University of Plymouth, East Coast Community Healthcare, Livewell Southwest, Plymouth Hospitals NHS Trust, Royal Devon and Exeter NHS Foundation Trust, Cornwall Partnership NHS Foundation Trust, Norfolk Community Health and Care NHS Trust
[Text on screen] With thanks to all the participating trusts

A standing frame allows people with severe multiple sclerosis to enjoy a sense of normality

Multiple sclerosis (MS) is a lifelong condition affecting the brain and spinal cord. For some people, symptoms are mild, but others develop serious problems with their sight, movement and balance. People with severe MS may be unable to stand unsupported. 

The Standing Up in Multiple Sclerosis (SUMS) trial was set up to find out whether people with severe MS would benefit from using a standing frame at home to stand up for longer periods. It explored a programme of regular self-managed use of a standing frame. The results showed that regular frame standing slightly improved motor function, and was feasible and cost-effective for the NHS to implement. Importantly, two in three participants wanted to keep the frames at the end of the trial so they could continue to use them.

The current study explored study participants’ day-to-day experiences. It showed that standing in the standing frame helped people with progressive MS feel more like their old selves and gave them a sense of normality and enjoyment. People were more able to participate in activities they valued, and they noticed improvements in both physical and psychological symptoms. They said that key factors in the success of the standing programme were support from a physiotherapist and recognition of the variable nature of their condition.

These findings indicate that this programme should be offered to people with progressive MS who have impaired mobility and difficulty standing unaided. The researchers say this evidence should be considered when national and local guidelines on mobility interventions for people with MS are updated.

What’s the issue?

More than 130,000 people in the UK are living with MS. The condition is caused when the body’s immune system mistakenly attacks the central nervous system, leading to a variety of potential symptoms such as problems with vision, movement, sensation or balance.

MS affects everyone differently. A person’s symptoms may come and go in phases or get steadily worse over time (progress). Many people with progressive MS will eventually rely on a wheelchair. Spending most of their day sitting down puts them at risk of other health problems, such as muscle wasting, as well as negatively affecting their emotional well-being and quality of life.

A standing frame allows people with limited ability to stand independently for extended periods. The device could help people with severe MS to increase their physical activity through regular supported standing. 

The SUMS trial recruited 140 people with severe progressive MS from eight healthcare organisations in two regions (East Anglia; Devon and Cornwall).  Participants all had their usual care but some were randomly allocated to receive, in addition, a home-based, self-managed standing programme. The programme involved two sessions at home with a physiotherapist. People were then given printed information, DVDs and web-based resources, and encouraged to stand three times a week. Use of the standing frame led to some improvements in people’s motor function and balance, and was feasible and cost-effective for the NHS to implement.

In the current study, some of the participants were asked in detail about their experience of using a standing frame in daily life. This gave a more complete understanding of the benefits and drawbacks of the intervention.

What’s new?

Twelve people with progressive MS, and eight standing assistants (who were mostly their spouses) were included. They kept audio diaries of their day-to-day experiences during the 36 week long trial

Four overarching themes emerged from the transcriptions:

    • ‘Feeling like the old me’. Standing helped people reconnect with their old, more able selves in a positive way. They enjoyed standing safely upright in the frame and the feelings that standing evoked. Some reported physical improvements which further changed their behaviour, for example prompting them to take part in social activities with family and friends. Standing gave them a sense of normality and control, which persisted throughout the trial even after the novelty of using the frame had worn off. One man described standing to give a speech at his daughter’s wedding, another was reminded of how surfing felt, and many reported on the importance of looking at others face to face.
    • ‘Noticing a difference’. People perceived positive changes in activities such as walking, transfers, posture and sitting balance, and a wide range of MS symptoms. These improvements appeared to increase their confidence and enable them to engage more in everyday life. The researchers note that some of these improvements, such as in sitting balance, were not seen in the larger original study.
    • ‘I want to do it right’.  Initially some participants lacked confidence in using the frame. With increased practice, and support from the physiotherapist, their confidence grew. They became able to modify the standing programme to suit their own needs and manage difficulties that arose. Some had no side effects, but others had minor back and leg pains which often resolved as they got used to standing.
    • ‘You have a good day, you have a bad day’. Participants said the fluctuating nature of their condition meant their enthusiasm for using the standing frame could change from day to day. They also had different expectations of the programme, and some struggled to balance their aspirations with the reality of their achievements. 

Why is this important?

Simple interventions can make a huge difference to the lives of people with long–term conditions. The original trial found that a standing frame programme slightly improved motor function in people with severe MS. It was also cost-effective to implement.

This study adds to the understanding of people’s experiences with the standing frame programme. Participants described enjoyable experiences which had positive knock-on effects on other aspects of their lives. People who enjoy an activity are more likely to continue with it over the long term.

While some in the study were more hesitant, especially at first, the standing frame appeared to be a popular intervention which they continued to use throughout the trial. 

Taken together, the studies indicate that the standing programme should be offered to anyone with MS who finds it difficult to stand and walk more than about 20 metres with sticks or a walking frame. They suggest it should be included when national guidelines on mobility for people with MS are updated.

What’s next?

Some people in the study would have valued more support when learning to use the frame.  The researchers have compiled participants’ experiences in short videos which are freely available. They hope this will increase the confidence of others as they start to use a standing frame. 

More research is needed to explore whether standing frames improve motor function and quality of life in people who are less severely disabled. Those who can walk 100 metres with a walking aid might also benefit. 

It will also be important to investigate whether regular frame standing can lead to improvements in other health complications. Prolonged sitting and inactivity in people with MS is linked to constipation, muscle pain or ulcers.

You may be interested to read

The full paper: Dennett R, and others. “I’m in a very good frame of mind”: a qualitative exploration of the experience of standing frame use in people with progressive multiple sclerosis. BMJ Open 2020;10:e037680 

A paper reporting the results of the SUMS clinical trial: Freeman J, and others. Assessment of a home-based standing frame programme in people with progressive multiple sclerosis (SUMS): a pragmatic, multi-centre, randomised, controlled trial and cost-effectiveness analysis. Lancet Neurology 2019;18:8 

Free resources for both clinicians and people with MS about standing frames: Standing Up in Multiple Sclerosis (SUMS) 

NICE clinical guideline [CG186] on diagnosing and managing multiple sclerosis in people aged 18 and over: Multiple sclerosis in adults: management

Information for patients about MS on the NHS website

 

Funding: This study is funded by the National Institute for Health Research (NIHR) Research for Patient Benefit Programme. 

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Commentaries

Study author

The evidence is strong enough to indicate that this standing programme should be offered to anyone with MS who has impaired mobility and difficulty standing unaided. However, accessing these frames can be difficult with some areas of the country providing frames and others not.

The pandemic has highlighted how important it is for people with a long-term condition to have access to the equipment they are confident in using in their everyday lives.  The standing frame enabled them to continue to engage in physical activity and self-management within their home environment and without the need for ongoing face-to-face intervention with a health professional.

Jenny Freeman, Professor in Physiotherapy and Rehabilitation, University of Plymouth 

Multiple Sclerosis Society

Living with MS can be relentless, painful and disabling, and for those with progressive MS treatment options are limited – or even non-existent. This is why self-management programmes like this cannot be underestimated.

What makes this type of research so valuable is that it goes beyond how it can help people in physical ways by exploring how using a standing frame makes people feel. The fact that people in the trial wanted to continue using the frame even if they had not seen many physical improvements, demonstrates the value of giving people the sense of enjoyment, normality and freedom described in the study.” 

Clare Walton, Head of Research, Multiple Sclerosis (MS) Society

Lived experience

I have MS and am active in the MS community. This research is highly relevant to many people with progressive forms of MS and could allow them to live a more normal life. It certainly indicates a change in perception. It suggests that people with the condition are less regarded as just ‘sitting around and decaying slowly’ to being people who could be included in normal activities with a bit of inventive thinking.

The health benefits of something as simple as being able to stand – to hold conversations at face level, to see further down the garden, to feel normal for a while – cannot be underestimated. I hope that this will be added to the NICE guidelines, which are currently being revised, as something that should be offered to all people living with progressive MS.

Helen Burchmore, Public contributor, Exeter

Clinician 

The paper supports the idea that standing frame programmes are valued and enjoyed by people living with MS. It provides support for the acceptability of standing frame programmes and their prescription as part of standard care for patients with the condition.

This research is relevant to therapists prescribing assistive devices, such as standing frames. It provides greater understanding of how these devices are perceived by service users and how they fit into other aspects of daily life when used at home. 

A participant describing using their standing frame while delivering a father-of-the-bride speech gives a rich understanding of the value of this intervention, to consider alongside the quantitative clinical outcomes from the trial. 

Research such as this, which focuses on subjective experience, is especially important in degenerative conditions where interventions are aiming to manage symptoms, maximise independence and improve quality of life.

Alison McCracken, Clinical Research Therapist, University Hospitals of Morecambe Bay NHS Foundation Trust and Liverpool University