In the past month we’ve been updating some of our Choices leaflets, and you can now read them on our website.
Watch our short video today about how we update our Choices leaflets.
We have updated our leaflets about…
If you have any questions about any of the topics covered in our Choices leaflets, you can get in touch with me to any of the MS-UK Helpline team via live web chat or by calling us on 0800 783 0510.
Last month, I was one of the guest speakers at the Patient Information Forum conference talking about our experiences of Involving Users in Developing Health Information. Professor Theo Raynor, University of Leeds and Luto Research, set the context for the day and his presentation addressed how involving users is not just the right thing to do – it makes a real difference; and how ‘expert’ patients and ‘real’ patients both have a role to play in developing good information.
Trishna Bharadia, who was diagnosed with multiple sclerosis in 2008 and has since become an award-winning advocate, talked about her experiences of accessing health information and being involved in the development of health information from a patient’s perspective. In particular she gave an example of a case study on developing a Living Well With MS course for Sue Ryder in Nettlebed.
I spoke about how MS-UK uses a number of methods to engage with our clients. For example, our Virtual Insight Panel (VIP) helps us to review our Choices leaflets and our clients also provide us with real life quotes to bring these resources alive. We also consult with our VIP’s on other organisational decisions to ensure that we are listening to the voices of those that are affected by MS and using them to inform our work.
Earlier this year we also set up a Steering Group for our wellness centre, Josephs Court in Colchester, Essex. This group is made up of seven clients who volunteer their time every other month to meet us. These meetings enable us to consult with them about our plans, listen to their ideas and those of the clients of Joseph Court who they represent.
Overall, the key message I came away with from the conference with was that MS-UK needs to introduce a face to face user testing group to further improve the way we develop and produce our Choices leaflets. I am certainly excited about how we can incorporate this into our processes and continue to demonstrate our commitment to our mission and values which include providing high-quality, accessible and relevant information.
If you would like to join our VIP, register your interest at www.ms-uk.org/vip.
Diana Baxter, Head of Services
Well, today makes the beginning of Volunteers’ Week, and we are excited to be celebrating!
We have created a short video sharing some of our volunteers’ stories…check it out today on our You Tube channel!
We are here to support people affected by multiple sclerosis (MS) to make the most of today and live life to the full. But we couldn’t do it without our dedicated volunteers.
Every year, they take time out to help us make a difference. By volunteering with MS-UK, we can cheer on hundreds of MS-UK runners and cyclists, keep our office running smoothly and ensure the people who we support have a say in our services.
A huge thank you to everyone who volunteers with MS-UK, for making such a huge difference to our work, and for continuing to support us.
The MS-UK team
MS Awareness Week has arrived, and I am pleased to say we are celebrating with our beloved mascot Myles.
Here at MS-UK, we believe that anyone affected by multiple sclerosis should be able to access the support and information they need to make their own decisions. We aim to empower people living with MS to have choice and independence, and I hope you’ll join us this MS Awareness Week.
Thank you for being part of our #SmilesWithMyles campaign – you are helping us to spread a positive message this MS Awareness Week.
Last year we launched our 'Getting to know you' survey, asking questions all about yourself - from how old you are to what MS-UK services you may have used in the past. Everything is completely anonymous, and we don't ask you for any contact details at all.
The reason we do this is because we really like to know about the people we're supporting. MS-UK puts people affected by multiple sclerosis at the heart of our work, and we want to be able to provide services that really meet your needs. We also want to make sure we're reaching as many different people as possible.
You can take part in our survey online today - it shouldn't take you more than ten minutes. If you would like a paper copy, please do email me or call 01206 226500 and I will send you one in the post.
Thanks for your help with this,
The Helpline team have been working hard at reviewing our list of Choices leaflets. We have been running various surveys over the past few months through our e-newsletter and social media to include the voices of people affected by MS.
This has really helped us to update our leaflets and by including personal quotes, it can really help others. Drawing on other people’s experiences can really help make decisions where needed and to maybe try something new that hadn’t been tried or thought of before.
All of us in the Helpline team would like to thank everyone who has responded to our surveys so far, we couldn’t do it without you. We will continue to ask for your feedback throughout 2017, so don’t be shy, let us know your thoughts!
Why not join the MS-UK Virtual Insight Panel to continue having a say in what MS-UK does in future?
Throughout 2016 our Virtual Insights Panellists have been instrumental in setting the course for MS-UK. Each month they have given us their views on a different project. This has proven invaluable to us and has helped us to ensure we are providing people affected by MS with not only what they want, but how they want it.
Projects have varied from providing input for our newly diagnosed booklet, and a number of Choices leaflets, to helping us with a marketing campaign for World MS Day and giving us feedback to improve our e-newsletters.
For the most recent project we asked our VIP what our new national service should be – with an overwhelming majority, they chose counselling – so watch this space in 2017…
Thanks to the generosity of our VIP’s in volunteering both their time and their MS-related insights, we are able to ensure we remain a charity that listens to people affected by MS and use their voices to inform our work.
Sign up to join our VIP today and help us in our work to empower people affected by MS to make the most of today and live life to the full.
And to everyone who has had a say in our work in 2016 through being part of this community, thank you!
We are really pleased with how the ‘Newly diagnosed with multiple sclerosis’ booklet has been received. Producing the booklet was a fantastic collaborative experience with the teams here at MS-UK working in close partnership with people with MS to write and develop the booklet and make sure the tone and content was just right.
‘Congratulations on the Newly Diagnosed Booklet, I am sure it will be a big success and really helpful to those at the beginning of their new life with the challenge of multiple sclerosis.’ – VIP
We worked with over 150 people with MS to gain the experiences to help shape the content and then went to our Virtual Insight Panel (a group of people with MS, carers and MS professionals) to gain their thoughts on the content before finally publishing the booklet.
‘This looks really good – just what is needed!’ – VIP
The pack has been sent out to all the MS Therapy centres and to many of the specialist MS clinics across the UK. It has been so well received that we have even had many nurses and clinicians reorder additional copies.
‘The information is easy to read, informative and well presented.’ – MS Clinical Nurse Specialist
As well as the physical copies that have been sent out to individuals, clinics and MS Therapy Centres the booklet has been downloaded from our website by approximately 200 people!
We look forward to hearing what you all think of the booklet and will ensure that this is updated regularly and always includes the voices of real people with MS.
MS-UK Helpline Team
To celebrate this years MS Awareness Week, I am proud to present our new booklet for people newly diagnosed with multiple sclerosis.
MS-UK believes that we must listen to the voices of people affected by MS to shape our information and support as it is these people that bring us perspectives that no one else can give. So this booklet is packed full of quotes from real people living with MS.
I hope this booklet will give people the courage to learn more about the condition, when they are ready, and also the choices that are available to them, so they can feel empowered to take back some of the control they may at first feel they have lost.
Thank you for helping us spread a positive message this MS Awareness Week.
You may have received my email earlier this week, but I thought I’d share our news on this blog too!
This year we are going to create an information resource for people newly diagnosed with MS. But I want this resource to be different. Rather than something that is full of statistics and cold hard facts, I want our resource to share real insight and experiences. We will of course ensure we cover everything people need to know but we also want to be able to share hints and tips that can only be known by people that have been there – and that’s you!
I’m sure you remember what receiving a diagnosis was like for you or someone you know, and have views on what was useful and what you wish you had been told early on.
Please share your experiences today in our online survey. It will take about ten minutes, and really help us shape our new resources.
We will then use the results to help us draft our new information resource. Once we have our draft we will be sharing it with our VIP’s to make sure it truly reflects the voices of real people affected by MS.
Over 100 people have already completed the survey – thank you so much!
Together we can empower people affected by MS to make choices that are right for them,
P.S. The survey closes at 4pm on 10 March 2016.