By Jo sopala | Jo Sopala
The fact that you have donated to the MS Trust via Global Giving, or are thinking doing so, tells me that Multiple Sclerosis (MS) is something that means a lot to you. Perhaps you have MS yourself, maybe for many years or maybe you are still coming to terms with a recent diagnosis. Or perhaps you have watched someone you care about struggle to cope with their MS, or have been inspired by their strength and resolve to live as full a life as possible.
Here at the MS Trust, it means a lot to us too. Our aim is to offer help and support to people affected by MS to ensure they live as full a life as possible, and our Enquiry Service – manned by our dedicated Information Team – is an important part of this. But something we are often asked is what value there is in this service in a digital age where most information is available at the click of a button? We believe that the value in this is huge. Priceless in fact.
Providing a connection
The UK has a shortage of MS Nurses with 2 out of 3 people – approximately 68,000 – living in areas where there are not enough. The MS Trust is working to change this by funding new MS Nurses where the need is greatest – something which you can also support via Global Giving!
But until there are more MS nurses, people will continue to miss out on the care and support needed – and this is where our Enquiry Line becomes vital. People with progressive MS who do not qualify for Disease Modifying Drugs (DMDs) are particularly vulnerable to disconnection. The clinical demands on MS nurses with regards to administering and monitoring DMDS mean progressive MS patients can often fall to the bottom of the priority list, and in cases where mobility is affected it can be very difficult to seek help at all. But the MS Trust Enquiry Line is always on hand to help and offer support where it might otherwise not be available.
A place where every question can be answered
MS effects everyone differently and beyond DMDs, treatment tends to depend on an individual’s particular symptoms and the relief possible for these. The result of this is that the list of possible symptoms, treatments and outcomes is endless. The breadth of knowledge required by the Information Team to handle these enquiries is enormous. But our information team rises to this challenge on a daily basis, with over 30 years’ experience of handling enquiries relating to MS between them. Being able to just call up and ask any question at the start of your diagnosis or as it changes over the years, and knowing that you will always be able to find the answers you need is a huge support.
Information you can trust
The Information Team are also responsible for collating all our print and digital publications with information on anything from bladder issues to fatigue, exercise to pregnancy with MS, in addition to all the resources available on the MS Trust website. All of our published information is completely free to those who want it and is accredited by the Information Standard, so when someone picks up one of our booklets or consult our website, they can be sure it’s information they can trust. Yes, there is information available online – an endless amount in fact. So much so, that working out what is MS fact and what is MS fiction can be a challenge. Search engine results can often offer false hope or worry where there needn’t be, so the MS Trust Enquiry Line offers an alternative one-stop shop for evidence based and up to date information to help people with MS to make informed decisions about their own treatment and lifestyle.
A friendly voice, ready to listen
And when all is said and done, the Enquiry Line also offers a friendly voice on the end of the phone, ready to listen, offer sympathy and to help people to see a way forward. The Information team are passionate about MS care and providing assistance where they can, and at a time of crisis or crossroads, the internet can be a very confusing and lonely place indeed.
I’d like to leave you with a quote from someone who was diagnosed with MS last year, and who has since been in regular contact with the MS Trust.
“When I was first diagnosed, I was handed some literature produced by the MS Trust. I was told it was the highest quality and most reliable information around and it certainly did allay my fears. And I know fellow MS sufferers who were given absolutely no information at all, and found a tower of strength and support in the MS Trust when seeking information for themselves.”
I think that says it all! So if you have supported our Enquiry Line and Information Team, or if you are thinking of doing so, please accept my most heartfelt thanks. We receive no government or NHS funding, so it is you, our wonderful supporters, who make all this possible and we could not be more grateful for your generosity.
Yours sincerely,
Jo Sopala
Director of Fundraising
By Jo Sopala | Director of Fundraising
By Jo Sopala | Director of Fundraising and Marketing
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