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Getting the right support when you're diagnosed with MS

Dealing with a diagnosis of MS can be daunting and getting the right support can be crucial.

One of our Research Network members caught up with Professor Roshan das Nair from the University of Nottingham, who is working to improve the experience of people at diagnosis.

What advice would you give to someone who’s recently been diagnosed with MS?

MS is different for everyone and being diagnosed is a very individual experience. The amount of information out there can be quite daunting. I would encourage everyone to get all the support they can – from their neurologist and MS nurse, to friends and patient groups like the MS Society. 

It’s important to go to reliable sources of information, and take time to explain things to family, who might also be confused.

What difference will your research around diagnosis make?

We want people with MS to have a good package of support around their time of diagnosis, making sure they feel emotionally supported and have all the information they need.

So we're carrying out a study called "Providing Emotional Support around the point of MS Diagnosis – PrEliMS”. We've reviewed existing studies around the world, looking at the different approaches that have been suggested to make sure people get the best support around diagnosis.

But to decide what might work in the UK, we need to hear from people living with MS in Britain. So a major part of our work is consulting people with MS, carers and MS professionals about their experiences.

What will this new support look like?

We won’t know what the package will look like until we hear from people with MS about what they think will work best. But we do know that at diagnosis, many people are understandably confused, possibly scared, or even in denial.

Everyone has their own reaction. So we might need a mixture of support, with some of it starting in the clinic. But others may want different forms of help, like getting in touch with the MS Society. 

If it’s going to work, it also needs to be affordable, meaning we need to think about support outside of the NHS as well as inside it.

Will it be useful for all forms of MS?

Our focus is on someone’s initial diagnosis, which for most people is relapsing MS, but we think everyone deserves emotional and practical support. That includes people who don’t yet have a definite diagnosis or have progressive MS.

The last but really important stage of our project is testing the support package before we roll it out. By running a feasibility study we can get some preliminary ideas about whether the package is helpful and not harmful, and that it meets your needs, whatever your diagnosis. 

I was diagnosed last year – can I get involved in your study?

We want to hear from anyone diagnosed within the past five years who’s ready to share their experiences. Please get in touch by emailing prelims@nottingham.ac.uk  and ask about the MS diagnosis study.

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This blog first appeared in Research Matters magazine. If you’d like to receive Research Matters by post, email supportercare@mssociety.org.uk to ask about subscription. You can also download the full issue for free.