MS Society funds new research into the needs of carers of people with multiple sclerosis

By Press Office

The MS Society is to fund a new study into the needs of families and carers of people with multiple sclerosis (MS) and the impact of MS on their lives.

The study will be carried out by researchers at Queen Margaret University in Edinburgh, who are specialists in person-centred practice, and will explore new ways of supporting families and carers of people with MS. They hope to improve future services and general support for families.

The nine month programme recently began, with final results expected in early 2017. The work will provide evidence to directly influence the development of services by the MS Society, but will also inform and influence other agencies or organisations who provide support for MS carers.

While a significant amount of research has previously been carried out into the impact of MS on families and carers, fewer studies have looked at the different ways of providing support and what works best for different people. The MS Society has therefore commissioned this study to bring together this existing evidence, along with new insights, to help families and carers of people with MS access the support they need.

Morna Simpkins, Director for Scotland, MS Society said: “ One of the biggest challenges is that MS is unpredictable - one day you can be fine, the next you might lose your sight or be unable to move. With over 11,000 people living with MS in Scotland, it’s therefore vital we continue to fund innovative research to help anyone who is affected by MS access the support they need. ”

Dr Cathy Bulley, leading the research project at QMU said: “This project brings together experts including people who are affected by MS, representatives of the MS Society and researchers. The ultimate aim is to help to improve the lives of families and carers of people living with MS. This project is an excellent example of the relevance of QMU’s research work in that it aims to shape policy and service provision that will improve the lives of people affected by a major health condition .” 

Professor Brendan McCormack, Associate Director of Queen Margaret University’s Centre for Person-centred Practice Research said : “We will use a number of contemporary methods to gather evidence including face-to-face and telephone interviews, as well as Facebook and online focus groups. This means that people all over the UK will have their voices heard.”

Researchers are receiving a grant of just under £48,000 from the MS Society to fund the work.

Notes to Editor

For further media information contact Carla Callaghan, MS Society Press office Scotland on 0131 335 4050 or email or Lynne Russell, Communications Manager at Queen Margaret University, Edinburgh on E:, T: 0131 474 0000, M: 07711 011239

About multiple sclerosis

  • MS affects more than 100,000 of us in UK
  • MS symptoms typically appear when people are in their 20s or 30s
  • MS attacks the nervous system. Symptoms include sight loss, pain, fatigue, incontinence and disability
  • MS is unpredictable – one day you can be fine, the next you might lose your sight or be unable to move. 

About the MS Society

  • The MS Society is the leading UK charity for people with MS
  • We have a free helpline - 0808 800 8000
  • We’re funding research to beat MS, we’re now at the start of a generation of MS research that holds incredible promise
  • With your help we’ll beat MS

About QMU

Learn more about the Centre for Person-centred Practice Research

About the research:

The project will begin with an evidence review, using the ‘Rapid Realist Review’ method, to identify what is valued by carers and families of people with MS (their needs or outcomes), what interventions or services could be useful, for who, and how they might work. The findings of this will then be tested through an online discussion, telephone interviews and face to face interviews with families and carers of people with MS. This will result in a theory or model of how outcomes, interventions (or services and support) and contextual factors relate.

This will be used to produce recommendations for the MS Society on:

  • Service development – what types of support might help people in different situations
  • Research - what evidence is still required to understand the needs of families & carers of people with MS and what types of support need to be tested and evaluated
  • Influencing – which organisations or agencies might be necessary for providing support

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