Source MS Trust: NICE will be assessing Plegridy to decide whether it should continue to be prescribed by the NHS in England. We’ll be telling NICE why we think it should be an option. If you are taking Plegridy we’d really like to know what you think of it, your experiences good and bad. 

If you would be happy to talk to a member of the Information Team about your experience of taking Plegridy, please email infoteam@mstrust.org.uk. 

Last year, NICE decided that Avonex, Extavia, Rebif, Copaxone and Brabio should continue to be available on the NHS in England. At the time NICE was unable to make a recommendation on Plegridy so they are now carrying out this separate appraisal. Whatever their final decision, if you are already taking Plegridy, you won’t be affected. Plegridy has already been approved for NHS use in Scotland and Wales.  Find out more about Plegridy here.

Source University of Nottingham: A new £1.85 million research study led by Professor Roshan das Nair at the Institute of Mental Health aims to develop a new computerised screening tool to detect the “invisible” cognitive impairments that can appear early in the life of a person living with multiple sclerosis (MS).

Approximately 100 people are diagnosed with MS every week in the UK and up to 70% have cognitive problems. People are most commonly diagnosed with MS in their 20s or 30s. There is currently no cure for the lifelong neurological condition that often gets progressively worse.  Read on.

Source MS Trust: Couples and families develop their own unique ways of dealing with an MS diagnosis. A recent UK study looked at how different family units affected by MS, cope with receiving MS health information. 

In this study, UK researchers wanted to understand how couples and families affected by MS cope with health information.

The researchers analysed interviews with 77 people affected by MS – 12 people with MS, 49 partners or spouses, 7 parents, 5 children, 2 siblings and 2 friends. Read the report here.

Source Multiple Sclerosis Net: Being diagnosed with an incurable, chronic illness such as Multiple Sclerosis is never a pleasant experience. However, for many people, getting that final confirmation creates an extreme sense of relief.

That sounds pretty peculiar to many people, as getting a diagnosis of Multiple Sclerosis is not an easy process. With no single test to determine the presence of the disease, symptoms that can mimic other illnesses, and doctors that may not be well qualified enough, the road to an MS diagnosis can be a long and uncertain one. After a long journey like that, finally understanding what is wrong with you can bring about a sense of calm and peace, despite what the future may hold.  Read on.

Source MS Trust: How your children will cope with your MS, is an ongoing concern for the majority of parents following diagnosis. Here Martin Baum, who was diagnosed with MS over 20 years ago and his son Josh, discuss how they coped and the impact it has had on them over the years.

Many years ago, when our son was about four or five, my wife and I were given a booklet.  It was called, I think, My dad has MS, or something like it.  It was a guide to help a child understand the complexities of having a parent living with Multiple Sclerosis.

As far as it went, it did exactly what it said on the front cover by explaining about the effects of MS in a child-friendly way.  This was something we appreciated greatly.  After that life, as they say, carried on while we tried our best not to make a big deal about my relapses no matter how much my MS was impacting upon our family life, 

The last thing we wanted to do was to add to his growing pains.  Life’s hard enough for a child as it is but, nevertheless, we never hid anything.  We tried to be as honest as we felt we could about why dad didn’t go bike riding or have a kick around in the garden.  This was his normality.  This was our reality.  Read on.