With more than 50 people being diagnosed with MS every week in the UK, and with new treatment options developing all the time, the MS Trust’s information team is receiving more enquiries than ever before. Enquiries are up 16% on this time last year.
People contact us by phone, email, post and even via Facebook and Twitter to ask all kinds of questions about life with MS. Sometimes we can answer straight away; sometimes we will need to do some additional research, but either way we will find them the information they need, based on the latest evidence available.
The MS Trust is the only place that offers a service like this and we have recently been certified with The Information Standard from the Department of Health to acknowledge the quality of the information we provide. Good information has been shown to increase confidence and involvement in making decisions, reduce isolation and anxiety, and improve clinical outcomes.
Thank you for supporting this service, which makes a real difference to the lives of people with MS.
“The MS Trust has opened up a world of information and contacts. You feel welcome whatever your issue or question. At times MS can be extremely hard on every family member, however the Trust's Open Door newsletter always sat on the table, looking quite dog-eared by the time the next one comes along. Thank you for being there.” Naomi-Jane, who was diagnosed with MS in 1998
Firstly a big thank you to everyone who has made a donation towards the MS Trust's helpline for people with MS in the UK. We are very grateful for your support.
The last three months (December 2010 to February 2011 inclusive) have been particularly busy for our Information Team who answer the calls, emails and inquiries we receive. We suspect the increase is partly to do with the Government's proposed changes to the NHS which is a real worry for people with MS as MS services are likely to be affected. Our support line will therefore be even more vital as a first point of call for those who are stressed and do not know what to do next.
We have helped the following number of people in the last three months by answering their questions and/or providing them with information about MS related issues:
February 2011 = 933, January 2011 = 685, December 2010 = 267 (Total of 1,885 - the total for the previous three months was 1,431)
The majority of the calls we receive are from people with MS; 1,414 over the last three months. We received 266 calls from MS health professionals including nurses and therapists, and 118 from family members who are affected by MS.
The most common inquiries were about core stability and MS nurses. Our most requested information book was 'Primary progressive MS exposed', and most popular factsheet was 'cognition' (memory and thinking).
Louise, aged 46, is married with two children and was diagnosed with MS in 2003.
Initially Louise didn’t want to know about MS. Then she started researching and found out too much – with MS, it is like asking “How long is a piece of string?” – it is just too big to comprehend. But Louise feels she has now reached a point at which she can’t deny where she is, so she now wants as much information as she can get. The information and support she gets from the MS Trust helps her to make her own choices about the management and treatment of her MS. Louise says "I really appreciate the MS Trust's helpline and information service and know that it is a trusted source of information. It's my first point of call!"
Thank you to everyone who has donated towards our free helpline for people with MS in the UK. The donations we have received have helped us to continue answering telephone calls and emails from people who are desperately seeking information or support.
Since posting this project in November 2010 (which was our third busiest month in ten years!), we have answered nearly 800 calls and have provided people with MS and health professionals with the personalised information they have needed. Symptoms and treatments have been the two most asked about subjects. In 2010, we received 15% more calls than in 2009. The proposed changes to the NHS are likely to have an impact on people with MS so we are expecting to see an increase in calls in 2011. This means it will be vital that we continue to seek the support of individuals and organisations to help us fund our services.
Here is a message we received from one of the beneficiaries of our helpline:
"I can't stress enough how much I value the support and information I get from you. No matter if by telephone, email or via your newsletters, you (and my physiotherapist) have been my lifeline throughout the past two years. Thank you."
It is only with the support of individuals that we will be able to continue providing services, such as our helpline, for people affected by MS.
Thank you again from everyone at the Multiple Sclerosis Trust.
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