Free helpline for 100,000 people with MS in UK

 
$2,270
$93,730
Raised
Remaining
Mar 11, 2013

Survey shows people value our enquiry service

"What
"What's the best thing about the service?"

During November 2012, we asked callers to our enquiry service to complete a survey about the support they received from the MS Trust. The 37 responses we received were on the whole very positive and showed that people really valued the information and support they were given.

Some of the common reasons for calling included help with treatment decisions, access to health services, support with work related issues, and people wanting to understand more about MS and how it might affect them or their loved ones.

On average, 83% of the people we surveyed said that contact with our enquiry service increased their understanding and knowledge of MS and 88% said it increased their confidence in dealing with the issue they called about.

“It helped us in deciding whether my husband should take the drug treatment being offered (he decided he would) and I intend to follow your suggestions about where to get first aid training to help my husband when he chokes on food.” Anon

94% of the people who responded to our survey said that they would contact the MS Trust again if they needed information about MS in the future.

 “You actually got to speak to a real person who seemed to have the time to talk through the things I needed to discuss. They were prepared to go away and research the information I needed and send it to me.” Anon

“It built my confidence to now tell people I have MS.” Anon

It costs £200 a day to keep our freephone enquiry service running. Thank you for donating towards this project and helping us to make a difference in the lives of people affected by multiple sclerosis.

During November 2012, we asked callers to our enquiry service to complete a survey about the support they received from the MS Trust. The 37 responses we received were on the whole very positive and showed that people really valued the information they were given.

 

Some of the common reasons for calling included help with treatment decisions, access to health services, support with work related issues, and people wanting to understand more about MS and how it might affect them or their loved ones.

 

On average, 83% of the people we surveyed said that contact with our Information Service increased their understanding and knowledge of MS and 88% said it increased their confidence in dealing with the issue they called about.

 

“It helped us in deciding whether my husband should take the drug treatment being offered (he decided he would) and I intend to follow your suggestions about where to get first aid training to help my husband when he chokes on food.” Anon

 

94% of the people who responded to our survey said that they would contact our Information Service again if they needed information about MS in the future.

 

 “You actually got to speak to a real person who seemed to have the time to talk through the things I needed to discuss. They were prepared to go away and research the information I needed and send it to me.” Anon

 

“It built my confidence to now tell people I have MS.” Anon

 

It costs £200 a day to keep our freephone Information Service running. Thank you for donating towards this project and helping us to make a difference in the lives of people affected by multiple sclerosis.

 

Links:

Nov 6, 2012

Research shows value of personalised information

Our latest research project looked at the information needs of those who are newly diagnosed with MS and those who support them. Appropriate information around the time of diagnosis is important as many people know little or nothing about MS when they, or a loved one, are diagnosed. Alternatively, they may know someone who has MS and assume that everyone's experience is the same.

This research provides information about what is most important to people around the time of diagnosis and will allow us to develop better resources for people newly diagnosed with MS in the future. It also highlights to health professionals the information preferences and needs of people with MS and should allow them to work more effectively.

Key findings were:

  • Neurologists and MS specialist nurses were the key providers of information around the time of diagnosis
  • The need for information changes over time, not always in a predictable way
  • Information should be offered in stages or layers, so that a person can choose how much information they receive on a particular topic at any particular time
  • Positive, practical, up to date information is important
  • Information tailored to the needs of an individual is useful
  • Information should be delivered in a variety of formats
  • The evidence base, or lack of evidence, should be made clear
  • Information can be empowering but too much information, or information at the wrong time, can be detrimental
  • Some people need support to use certain information, for example, when choosing a disease modifying treatment
  • Charities play an important role, including signposting to other organisations
  • Information was lacking in some areas especially on benefits and local services

We are only able to continue providing information to people with MS thanks to the support of generous donors like you. Thank you for helping to fund our free helpline and we look forward to updating you again soon.

Links:

Aug 3, 2012

Information needs at diagnosis - research complete

Our project on the information needs of people newly diagnosed with multiple sclerosis (MS) has reached the end of the research stage. 34 phone interviews, five face to face interviews and four focus groups took place. In addition, 26 people not selected for interview also submitted information. The majority (84%) were people with MS but family members also contributed.

Analysis of the responses is still underway. So far our research has highlighted factors that influence how people seek and use information after diagnosis including:

  • How they seek information in general (not just about MS)
  • Whether diagnosis was a drawn out process and largely expected, or whether it was quick and unexpected
  • What symptoms they are experiencing
  • The time needed to adjust to the idea of having MS
  • Support from friends, family or health professionals in using information, especially when deciding about treatments
  • MS nurses played a key role in providing information and supporting people to use it.

The MS Trust commissioned this research to help us develop better resources for people newly diagnosed with MS in the future. We will update you further on this project once the responses have been analyzed. Thank you for supporting us to provide the best possible information for people with MS through our helpline, website and free publications.

Links:

Apr 30, 2012

Amanda's Story

"I was diagnosed with multiple sclerosis by letter. It was a copy of the results from my recent brain scan. When I read that I had lesions in my brain that “suggested demyelination”, I had a pretty good idea what it meant. There was a number I could call for more information, but I tried and never got through.


"From the day that letter dropped in, back in 2008, I lost two stone. I couldn’t eat from the stress and anxiety. I just felt like I was going to get worse and worse and die within months. I couldn’t go out, couldn’t get dressed, couldn’t work; I didn’t know where to turn.

 

"A month later, when I was sent for a lumbar puncture, I picked up the MS Trust’s newsletter at the hospital. I rang the MS Trust and can’t explain the relief I felt when the person on the end of the phone said “we have people here who you can talk to”. It was as though I was on a boat adrift out in a wide ocean, then I threw a line out and somebody caught it.


"The lady I spoke with was extremely informative and more importantly for me, very understanding and empathetic. She told me that every single person with MS is different and took the time to talk with me about my concerns.


"I felt much better after the call. It’s really comforting for me knowing there’s somebody out there with the expertise about my condition that I can contact easily. For me, that’s all I need to put my mind at rest and enable me to get on with my life. I will be forever in debt to the MS Trust, for helping me at what was such a terrible and upsetting time."

Thank you for supporting this project, which helps people like Amanda every day,

Jan 19, 2012

Researching the information needs of people with MS

Thank you very much for supporting our free helpline for people with MS in the UK. This service is run entirely from voluntary contributions and without the support of generous donors like you, it could not continue.

Access to clear and accurate information is important for everyone, but people are individuals, and they differ in the kinds of information they need, where they get it and what form the information takes. Whilst knowing about multiple sclerosis and its treatment is crucially important, many people may also want to know more than just the medical facts. Family and friends will have their own information needs too. The information needed may change as the condition does and may differ according to the type of MS.

We are currently in the process of setting up a research project looking at the information needs of people newly diagnosed with MS. The results of this will inform the resources and materials we develop over the coming year and beyond, helping to ensure that we are providing the type of support that people really need via our helpline, website and publications.

To get the project started, we have commissioned a team of three independent and experienced researchers, Ros Levenson, Mercy Jeyasingham and Sarah Smith, to help us better understand the information needs and preferences of people who are newly diagnosed with MS in the UK. We are now recruiting participants for the study and look forward to updating you on how this research progresses.

Thank you again for helping us to provide the best possible information for people with MS. I hope you will continue to take an interest in our work.

“I was diagnosed with MS seven years ago. Since this time, the MS Trust has supported me both with printed materials and through the phone line. Without the MS Trust I would feel very isolated with my condition - it’s good to know you are there.” Anonymous user of our helpline

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Organization

Multiple Sclerosis Trust

Letchworth Garden City, Hertfordshire, United Kingdom
http://www.mstrust.org.uk/

Project Leader

Laura Percival

Fundraising Officer
Letchworth Garden City, Hertfordshire United Kingdom

Where is this project located?