The UK MS Register had a visit from four members of Sardis Chapel in Ystradgynlais, Swansea yesterday.
After holding a concert in Sardis Chapel that involved a Welsh Female Choir accompanied in parts by some local children, the group managed to raise £600 for charity. Half of the proceeds went to Diabetes UK and the other they wanted to donate to MS. They came along to the Swansea University to present a cheque of £300 for us to pass on to the MS Society towards Research.
Presenting the cheque to Rod Middleton, Project Manager of the UK MS Register
On behalf of the MS Society, thank you very much everyone from Sardis Chapel in Ystradgynlais!
Our colleagues at Barts and the London would like to know how you prefer to be referred to by academics and clinicians in both formal (scientific publications and grants) and informal (online, in social media etc) settings.
Whilst we appreciate that no one likes to be labelled, it is required when academics, clinicians or journalists report ideas or results in social media,… publications, articles etc. The team at Barts and the London plan to publish a scientific paper on the results and we will, of course, let you know what we find in our newsletter and blog.
Katie and Rod from UK MS Register Team attended UCL Partners 6th Research day on Saturday 21st March in London.
The event was set up so that people affected by MS were not only able to listen to presentations about existing and emerging therapies in MS and several other research topics, but where they also had chances to talk to the researchers themselves face to face. After each presentation, a different researcher joined each table in the main hall and attendees had 15 minutes in which to ask them questions. It was a great way for people with MS to engage with researchers.
The UK MS Register is expanding the clinical sites that we are working with which include a number of the UCL Partners hospitals, including the Royal London, The National Hospital for Neurology and Neurosurgery, Queens Square and Basildon. It was great to meet so many people from these hospitals and everyone was keen to sign up to the Register – thank you!
Our new questionnaire ‘Prognosis in MS’ (PiMS) has been live for three weeks now. In the first week, over 1500 answered, so thank you very much! For those of you who haven’t logged back on to complete it yet, it will be available until around the 25th May 2015. It is being carried out in collaboration with Southampton University and we will let you know the results later on this year.
Here is a link to a blog about the study by the MS Society
We are working in collaboration with colleagues from Southampton University who have designed a research study asking your opinions on on-line program that estimates long-term prognosis for people with MS.
The main aim of this study is to improve the experience of people with MS when their prognosis is being discussed with health professionals. Prognosis is a term used to describe the prediction of how their condition is likely to progress. We know that people who understand their condition in more detail have greater control over their own care and are better equipped to make informed choices about their treatment.
The delivery of a prognosis is ordinarily a very personal matter, which needs to be tailored to the individual. This project is studying the potential use of a new, on-line program they have developed which can estimate an individual’s long-term outlook. They would like to know how people envisage that this program might enhance their experience of discussions around prognosis. For example, whether, when, where and how should this program be used? Is it likely to improve on existing information channels and ultimately provide benefit to the MS community? How do people with MS deal with uncertainty about their prognosis, and how would this program affect this?
In the next few weeks, you will find the questionnaire at the bottom of the list of your usual questionnaires. We will send you an email when it is live and ready to go. We will let you know what the final results of this poll are when we get the results in October 2015.
The Register team took part in #ichallengeMS and wore a bright orange wig every Wednesday throughout September.
It was great fun to take part and we received some very strange looks, especially in Boston on the way to, and at the largest MS conference for MS in the world and at the Swansea University Freshers Fayre.
We raised £110.74 sponsorship for the MS Society – thanks to all who donated!
The UK MS Register team attended the worlds largest conference about Multiple Sclerosis earlier this month in Boston. We attended talks and lectures and met with many of our current partner Neurologists and future collaborators.
All of these international Neurologists and Charities coming together in one place leads to great opportunities. One of which is the MS Society teaming up with other MS Charities across the world to fund 22 projects aimed at developing successful treatments for people with progressive MS. More than £17 million has been allocated for this new alliance and research.
The UK MS Register is not, as it may sound, a count of all those who have MS in the UK, but a unique ground-breaking study designed to increase our knowledge of living with MS in the UK. The answers to the questionnaires on the website are compiled and researched by the team at Swansea University and other researchers across the UK – all aiming to understand MS and the effects it has on people’s lives.
There are nearly 11,000 people who have signed up so far, however, only 57 people have answered “I am British Asian (Indian / Pakistani / Bangladeshi)” in the ethnicity questionnaire. That works out to be just over 0.5% of the participants who are answering questions on the UK MS Register website. We need more representation from all ethnic groups!
The Ethnicity Question is based on the current standard NHS ethnicity monitoring questionnaire and does not allow for the greatest detail, but the number of people who have answered this question from an Asian background is low!
The Register currently has over 10% of the estimated 100,000 people with MS in the UK on board with us and we can see that the data that we are getting from the questionnaires is representative of the UK MS Population (for example the number of males and females with MS or the proportions of MS type), so please help us help get Asians’ with MS represented as accurately as possible. Data from the Register works towards influencing policy and improving care of MS in the UK.
Some of the reasons that are considered barriers to the Register in general, are thought to be limited IT access or skills and language barriers, but we are trying to encourage family members of friends to help their loved ones with MS to go online and answer our questionnaires.
So in order for your voice to be heard, please tell your friends, relatives and your local groups to encourage anyone with MS, to please log onto www.ukmsregister.org and start helping to make sense of MS.
You can call Katie from the UK MS Register Team on 01792 606 354 or email the team email@example.com if you need any help or have any questions.
A letter has been published today (14th August 2014) in various newspapers from Norman Baker MP, the Drugs Minister to Jeremy Hunt, Health Secretary. He suggests that drug laws should be relaxed to allow people with MS and other health conditions to use cannabis for medicinal purposes. Sativex – which is made from cannabis and is licensed to treat muscle spasms and stiffness in people with MS is not currently available on the NHS. There are concerns that people are being forced to break the law to secure the only substance that can help to relieve their condition.
The UK MS Register is going to the 5th MS Research day in London this weekend. The event is hosted by UCL Partners and is an opportunity for people with multiple sclerosis (MS), family, friends and carers to get an update on current advice and guidance for self-management, details of what is happening in research and meet MS Health Care Providers in an informal setting.
We are attending MS Life 2014 and have some new goodies to give away! If you are going to be there too, then come along to our stand, log on to show us that you are an ‘Active user’ and receive a free thank you gift.
It’s also a good chance to meet the team and ask any questions about the Register or even suggest some ideas. As part of the Emotional Well-being lecture, Associate Professor Kerina Jones, lead researcher from the MS Register is also talking about Register data on anxiety and depression levels in people with MS. (Saturday 26th April,14:00-15:00 in MS Life theatre, MS Life 2014)
Don’t worry if you can’t make it, we will be having some postal give-aways over the next few months – keep an eye on your emails.
These pages will keep you informed with all the things that the MS Register discovers from YOUR answers. You’ll find links to the research we have carried out, information about us, links to other useful sites and will also keep you up to date with what is happening with the UK MS Register Project.