Standing Up in Multiple Sclerosis (SUMS)

Welcome to the SUMS Study website. SUMS is a multi-centre randomised controlled study to assess the effectiveness of a home-based self-management standing frame programme in people with progressive MS. 

This website provides a range of information about the study, and resources both for people affected by MS and physiotherapists, which we hope you will find helpful. The website will develop over the course of the study, with regular news updates to keep you informed about our progress. 

If there is additional information that you would find helpful please let us know via email so that we can improve the site for everyone.

Study summary

Standing upright is highly valued by most individuals, both psychologically (eg enabling eye to eye interaction) and physiologically (eg maintaining muscle strength). Standing frames are commonly used by people with spinal cord injury (SCI) who are unable to stand unaided. These frames provide support to enable even severely disabled patients to stand safely. Regular use has been shown to minimise the physical complications arising from prolonged immobility and increase feelings of well being.

Like those with SCI, many people with severe Multiple Sclerosis (MS) cannot stand independently, often developing disabling complications as a result of immobility. Two pilot studies have demonstrated that such people can obtain similar benefits to those with SCI by using a standing frame. However, in many areas frames are not issued due to limited scientific evidence. This study will provide robust evidence about their efficacy.

Many people with MS develop severe walking problems and consequently spend much of their day sitting down. The associated secondary problems (eg pressure sores, contractures, muscle wasting) impact on quality of life and result in increased healthcare needs. These problems can be minimised if physical activity is increased. However, without easy access to a frame people must travel to a rehabilitation/MS centre to stand, often incurring expensive travel costs. Using a standing frame at home may offer a solution which reduces the economic and social costs for the patient and NHS.

The SUMS study involves 140 severely physically impaired people with MS. Participants will be randomly allocated to either a home-based, self-management standing programme (with advice and support) along with their usual care or to usual care alone. Participants will be asked to stand three times weekly over 20 weeks. A range of outcomes, including motor function and balance, will be measured at intervals throughout the study and compared between the two groups.

How were people with MS involved in developing this research study?

This topic was first identified as a result of qualitative research by Dr Wendy Hendrie (SUMS Study research team member) who undertook 27 in-depth interviews with people with progressive MS who had participated in a standing programme. These interviews, which explored the feasibility and usefulness of a home-based standing programme, identified that people with MS highly value supported standing as a self-management intervention but found it difficult to access within the NHS, in part because of insufficient research evidence justifying its use. 

The MS Society/James Lind Alliance partnership identifies ten key research priorities important to people with MS, their carers and professionals. Our study contributes directly to five of these priorities, emphasising the importance of this topic.

Having identified this topic we began to work with people with MS to design the study. We undertook two discussion groups with 12 people with progressive MS to define the research question and develop and critique the study design. All of these people had significant disability. Seven regularly used a standing frame and five did not. We listened to their views about a wide range of issues (such as the acceptability of randomisation, the outcome measures to be used, and feasibility of the standing frame intervention) and made some changes to the study design. All in all there were three rounds of comments and changes until we finalised the study design

How to use an Oswestry Standing Frame

A video for participants and health professionals

Exercising in the Oswestry Standing Frame

A video for participants and health professionals

When more help is required to stand in the Oswestry Standing Frame

A video for participants and health professional

Study investigators  

Doctor Jenny Freeman (Chief Investigator - Physiotherapist), Plymouth University

Doctor Wendy Hendrie (Principal Investigator - Physiotherapist), Norfolk Community Health and Care Trust / Plymouth University 

Doctor Louise Jarrett (Principal Investigator – MS Nurse Specialist), Royal Devon and Exeter NHS Trust

Robert Kinsman (Lay person) 

Andy Barton (Methodologist), Plymouth University

Siobhan Creanor (Trial Statistician), Plymouth University

Doctor Anne-Marie Hawton (Health Economist), Exeter University

Professor Jonathan Marsden (Professor in Rehabilitation), Plymouth University 

Professor John Zajicek (Consultant Neurologist) 

Research Therapists  

Stephen Hooley (Research Assessor – Physiotherapist), Norfolk Community Health and Care Trust

Rachel Dennett   (Research Assessor and Study Coordinator), Plymouth University

Funding 

This three year study has been funded by a grant from the National Institute for Health Research , Research for Patient Benefit Programme, Ref number PB-PG-1013-32047.

Trial Sponsor: Plymouth Hospitals NHS Trust 

Ethical approval has been gained by: NRES Committee SouthWest – Frenchay (Rec Ref: 15/SW/00)

International Registered Trial Number (ISRCTN): 30081   

Study settings 

Sites involved in this study: 

Torbay and South Devon NHS Foundation Trust

Northern Devon Healthcare NHS Trust 

Livewell Southwest

Royal Devon and Exeter NHS Foundation Trust 

Cornwall Partnership NHS Foundation Trust

Norfolk Community Health and Care Trust 

Suffolk Community Health and Care Trust 

East Coast Community Healthcare


Research updates

Talks/Conference presentations

SUMS publications

Useful articles

Some interesting articles evaluating the use of the standing frame.

@SUMSstudy

Want to keep in touch?

If you would like to hear more from us throughout the project, and for us to tell you the results once they are available, follow us on Twitter