MS Services research
As well as funding biomedical research in to the causes of, and better treatments for MS, we are committed to improving the day-to-day lives of the people it affects.
Over the past five years we’ve expanded our research programme to help make this happen, by including research into improving MS services.
Once we've proven that a service makes a difference, it makes it easier to obtain funding and roll out these programmes across the UK. This way, we can make sure that people with MS have access to the services they're entitled to.
This research is already changing the lives of people affected by MS in the UK.
Current projects
- Exploring the onset of secondary progressive MS
- Helping people with MS stay in work
- Adjusting to MS: are group therapies more effective?
- Quality of life in people with MS
- Childhood MS - families' experiences and support needs
- SWIMS: A long-term study of MS from the patient perspective
- Do different ethnic groups have different experiences of MS?
- Working yet worried II
- Using quality adjusted life years in MS
- The UK MS Register – putting MS on the map
- Developing better ways of measuring treatment effectiveness in clinical trials
- The Mii-vitaliSe Study: testing the safety and feasibility of using the Nintendo Wii™ home gaming system in people with MS
Exploring the onset of secondary progressive MS
Dr Antonio Scalfari
Imperial College London
£112,768
What’s the project about?
Currently we don’t have any accurate way of knowing which people with relapsing remitting MS are most likely to go on to develop secondary progressive MS. Dr Scalfari will be leading this two year project to improve our understanding of this.
The London Ontario MS database is a natural history database which collects lots of information about people with MS – for example type of MS or treatments taken – over a long period of time, often many decades. In this project this database will be explored to look for any common factors in people who go on to develop secondary progressive and when this might occur.
How will it help people with MS?
If successful, this research could highlight similarities or predictive factors for secondary progressive MS. It is hoped that this work will also be used in clinical trials to highlight people who are most likely to respond to a treatment.
The difference you can make
Most people with relapsing remitting MS will eventually develop secondary progressive MS. It varies widely from person to person, but on average, around 65 per cent of people with relapsing remitting MS will develop secondary progressive MS 15 years after being diagnosed. Having more accurate ways of knowing how and when this will happen could lead to more effective and timely treatments. Help us by supporting this vital
Helping people with MS stay in work
Dr Helen Ford
Leeds General Infirmary
£155,815
What’s the project about?
Some people with MS leave their jobs earlier than people who don’t have MS. This could be for many different reasons. MS comes with uncertainties and can be unpredictable which could make managing a job and symptoms difficult. Dr Ford has already led research in this area to develop a tool which helps to show when someone’s job may be coming under threat. This three-year project will explore what can be done to help people with MS stay in work.
200 people with MS who are working will take part in the project. They will complete a set of questionnaires four times over two and a half years to explore how many people leave their job in this time and what the people who stay in work have in common.
How will it help people with MS?
This work could lead to a better understanding of why some people with MS leave their jobs early and could lead to better ways of supporting them to remain in work.
The difference you can make
Many people continue to work for many years after being diagnosed with MS. Others find that MS symptoms make working difficult, or that having MS changes their priorities. Help us find more way to support people with MS to stay in work. Donate today.
Adjusting to MS: are group therapies more effective?
Professor Nadina Lincoln
University of Nottingham
£65,669
What’s the project about?
We know that adjusting to MS can lead to changes in mood such as depression or anxiety. Many different therapies have been shown to improve mood in people with MS and some research suggests that group therapies are more effective at doing this.
Professor Lincoln is leading a three year study to see if a group therapy to treat low mood in people with MS is better than an individual therapy.
The researchers will:
- interview ten people with MS who have already received a group therapy to improve low mood to gather their experiences
- send questionnaires to 200 people with MS to gather information on their attitudes to being part of a group, how MS effects them and how they are adjusting to their MS in general
- compare an individual therapy to a group therapy to treat low mood in 30 people with MS
How will it help people with MS?
This project builds on previous research funded by the MS Society which showed that a group therapy improved low mood in people with MS. This project will help us to better understand why this group therapy was effective and could lead to better therapies and treatments to help people adjust to having MS.
The difference you can make
Living with a long term condition, especially one with unpredictable symptoms, can take its toll emotionally.
Please donate today so that we can develop more effective therapies to help people adjust to life with MS.
Quality of life in people with MS
Helen Willis
Anglia Ruskin University
£12,000
What’s the project about?
Quality of life is often used as a measure by researchers to see what impact a new treatment or service has on people.
Currently there are several different questionnaires used to measure quality of life. However there are few which are tailored specifically to people with MS and are designed to be used in a routine clinical setting, instead of within a research study.
In this project the researchers will look at how useful and effective these questionnaires are in people with MS and, based on these findings, will develop a new questionnaire which will look at quality of life specifically in MS to be used in the clinic.
How will it help people with MS?
People with MS face specific challenges that can be poorly understood. A new way of measuring quality of life will take these specific challenges associated with MS into account and may lead to a better understanding of how well treatments and services work.
The difference you can make
With so many hidden symptoms associated with MS, it’s essential that we find accurate and useful ways to measure what impact new treatments and services have to ensure that people with MS get the best care possible.
Childhood MS - families' experiences and support needs
Dr Susan Kirk
University of Manchester
£122,836
What’s the project about?
There are an increasing number of children and young people being diagnosed with MS, but we know little about their experiences of living with MS, and whether the support they receive is sufficient and appropriate.
Dr Susan Kirk will lead this two year project which aims to:
- better understand the experiences and needs of young people with MS and their parents or carers
- assess if the services and support young people with MS receive are appropriate and sufficient
- identify how these services could be improved
The researchers will conduct interviews with young people with MS, their parents or carers, and with health professionals to gather their views and experiences of living with MS and supporting people living with MS.
How will it help people with MS?
The results of this study will be used to develop recommendations about how to provide acceptable and appropriate support for young people with MS and their parents or carers.
The difference you can make
MS is a condition that affects the whole family. It can affect communication, relationships, mood and daily interactions.
Learning how to live with an unpredictable condition can be hard on everyone.
You can help us support families who are living with MS by donating to MS research.
SWIMS: A long-term study of MS from the patient perspective
Dr John Zajicek
Universities of Exeter and Plymouth
£282,738
What’s the project about?
This long-term project based in Devon and Cornwall involved more than 1,200 people living with MS.
Participants are asked to complete regular surveys for up to 10 years. The surveys are aimed at understanding how MS impacts on the lives of people living with it.
At the end of the project the results from the surveys will be collated to develop a long-term picture of how MS affects people.
How will it help people with MS?
This project aims to:
- promote better understanding of the impact of MS from the perspective of those living with it
- develop ways of measuring the impact of MS in order to support clinical trials
- develop tools that may predict the future impact of MS on individuals
The difference you can make
There is still so much we don’t understand about how MS affects people in the long term. This project will put us one step closer to understanding that – so that we can develop treatments and services that support people with MS.
Please help us to beat MS by donating today.
Do different ethnic groups have different experiences of MS?
Dr Jonathan Koffman
King’s College London
£106,709
What’s the project about?
The number of people with MS from different ethnic backgrounds has increased in recent years – but we know little about how MS affects people from different backgrounds.
This two and a half year project will explore whether ethnicity has an effect on different aspects related to MS, looking specifically at people who are severely affected by MS and their palliative care needs.
The researchers will:
- conduct a questionnaire of 40 black Caribbean and 40 white British people severely affected by MS and their family members to gather their opinions on palliative care and palliative care services
- randomly select 30 of these people and a further 10 Asian people severely affected by MS to be interviewed for their suggestions on the palliative care services they believe would make a difference to their lives and their families
How will it help people with MS?
The results from this research will:
- improve the knowledge of challenging symptoms of MS amongst health care professionals
- improve services that are acceptable to people with severe forms of MS
- take cultural preferences into account when developing services for people with MS
The difference you can make
There is still so much that we don’t understand about how MS affects different groups of people.
Help us support everyone affected by MS by donating today.
Working yet worried II
Dr Diane Playford
Institute of Neurology (University College London)
£155,610
What’s the project about?
It is estimated that between 23 and 32 per cent of people with MS are in employment – but many more could be if they received more support. Much more needs to be done to support people with MS who would like to remain in work.
Research done in an initial study, working yet worried, developed a service aimed at helping people with MS remain in work.
The next study will build on that progress.
Researchers will:
- develop a manual to help employers to support their employees make adjustments to remain in work
- help between 20-30 people with MS return to work after a considerable absence
How will it help people with MS
There are many misconceptions about MS and it’s important that employers understand what living with MS is really like if they are to help their employees remain in work.
This project will help employers support their employees with MS make adjustments that will help them remain in work – if they choose to do so.
The difference you can make
This project could mean the difference between not being able to work and enjoying a fulfilling job.
Please help us to make a difference by donating to research that will change the lives of people with MS in the here and now.
Using quality adjusted life years in MS
Dr Colin Green
Universities of Exeter and Plymouth
£106,301
What’s the project about?
A quality-adjusted life year (QALY) is a health economic tool used to compare different treatments and interventions – so that the NHS can make decisions on which treatments to fund.
QALY’s are a generic measurement, however, and don’t take specifics about how MS can impact on a person’s life into account. This means that some treatments and services that could be helpful to people with MS might not be available on the NHS.
Dr Green will lead a three year project aiming to develop a QALY measurement specifically for people with MS.
He will:
- adapt the Multiple Sclerosis Impact Scale–29 (MSIS-29), a scale used to assess the physical and psychological impact of MS, to ensure it covers the full impact of MS
- develop a QALY specific to MS
- conduct a web-based survey of 1000 people in the general population – comparing various measures of quality of life with those of people with MS
How will it help people with MS?
People with MS face specific challenges that can be poorly understood. A new QALY measurement will take these specific challenges associated with MS into account.
We hope this will help professionals to make more informed decisions about what treatments and services to fund on the NHS.
The difference you can make
With so many hidden symptoms associated with the condition, it’s often difficult for people with MS to fight for the treatments and services they deserve.
We hope this research will change the way that health care professionals evaluate treatments and services for people living with MS – so that people with MS can access the treatments they need.
Help support people with MS by joining our campaigns community.
The UK MS Register – putting MS on the map
David Ford
University of Swansea
£693,650
What’s the project about?
The UK MS Register is a three year pilot project launching in May 2011.
The Register’s aim is to put MS on the map in the UK.
This will be the first Register of its kind, in any medical condition, to gather information from neurologists on the NHS and from people with MS themselves.
This information will be combined in five pilot sites (Belfast, Edinburgh, Nottingham, London and Swansea) to give us a more accurate picture of how MS affects people’s lives in those areas.
We hope that the pilot MS Register project will develop the technology to roll this project out to the whole of the UK.
Once that technology has been established, we will be in a position to launch a UK-wide MS Register.
How will it help people with MS?
In the long-term, the possibilities of a UK MS Register of this kind are endless:
- it could transform the delivery of care, enabling us to develop new services that better meet people’s needs
- it could revolutionise the focus of MS research, opening new avenues for us to explore
- it will provide new and more accurate evidence with which to work with government for better funding and support for people with MS
The difference you can make
Join the UK MS Register today. The MS Register provides a unique opportunity for people with MS who live in the UK to put their MS on the map.
Find out how others are putting MS on the map.
Developing better ways of measuring treatment effectiveness in clinical trials
Dr Jeremy Hobart
University of Exeter
£64,056
What’s the project about?
Clinical trials are used to find out if a treatment works and if it is safe. Assessing this usually involves measuring results against standard scales. There are lots of different scales that can be used to measure different things and we don’t always know which scale is the most appropriate for measuring various aspects of MS. Dr Hobart is leading a one year project to find out which scales are the most appropriate for capturing and measuring the effects of MS treatments.
How will it help people with MS?
From this work, the researcher’s aim is to ensure that clinical trials involving MS use the best scales available for measuring how effective a treatment is. This work will give us a better understanding of how effective treatments are so they can be given to people who will benefit the most.
The difference you can make
There are many ways you can get involved in MS research – by taking part in clinical trials or small studies, or by guiding the research process as a member of the MS Society Research Network.
The Mii-vitaliSe Study: testing the safety and feasibility of using the Nintendo Wii™ home gaming system in people with MS
Dr Sarah Thomas
£127,072
Poole Hospital NHS Foundation Trust
What’s the study about?
The first phase of this project will involve developing an intervention package (Mii-vitaliSe) incorporating specific guidance and physiotherapist input, to support people with MS to use the Wii™ at home.
The second phase is a pilot randomised controlled trial comparing:
- people with MS receiving the Mii-vitaliSe package
- people with MS not using the Wii™
Activity levels, vitality and general wellbeing of all participants will be assessed over the course of a year.
How will it help people with MS?
Exercise is beneficial to people with MS and researchers are always looking for fun, easy and convenient ways for people with MS to do exercise in their own home.
If researchers can demonstrate that using the Wii™ is beneficial and safe then this system could be developed within a larger study.
The ultimate aim would be to make the Mii-vitaliSe package more widely available to people with MS.
The difference you can make
People with MS need exercise programmes that are easy to use. This study aims to help develop an exercise programme that can be done at home.
Please help support research like this that will make a difference to people living with MS in the here and now.
We can't fund vital research projects without your help.