Today we have launched a new video all about our plans for the next three years. At MS-UK, we want to be truly community-led and we have developed our next strategy with this in mind.
Way back in February 2018 the whole charity agreed that we wanted to involve people affected by multiple sclerosis (MS) in a meaningful way. We were really keen to make sure we didn't just tick boxes, we wanted people affected by MS to share their insights and experiences with us and help us develop a way forward that makes a difference where it's needed most.
We asked the MS community 'what is the biggest difference we could make for you today?' And you answered...through attending focus groups, joining our Virtual Insight Panel, completing surveys and sending emails, you let us know what matters to you.
So, what are our priorities for the next three years? Watch or listen to our film today to find out!
You can also read our Strategic Plan for more information.
I am very excited about planning for a healthier and happier future, a future where we can improve understanding of MS and provide the support that is needed most. Thank you so much for all of your feedback over the past year, you have made this possible,
In January 2016 I had a very frightening experience when my eyesight in one eye deteriorated quite quickly to the extent that I wasn't able to continue my work as a dentist. Over the next year and numerous tests I was no further forward and my eye made some recovery. Following a second episode with my other eye in 2017 I had further scans and a lumbar puncture which finally led to the diagnosis of RRMS or relapsing remitting multiple sclerosis.
I started to learn about treatments, being a medic I was sure I would follow the disease modifying therapies (DMTs) or daily injections of immunosuppressants, but I was encouraged to try another approach. My own GP put me in touch with a friend of hers who had been managing his own MS through diet and exercise, Alan Caldwell. Alan was a great inspiration to me and when I first met him he had just successfully completed the Virgin Money London Marathon running for MS-UK. This was exactly what I needed to hear at this time, I was in shock with an MS diagnosis and scared for the future. As we know no one can yet predict the outcome of your MS and indeed, it affects everyone differently, so to know that Alan was doing so well following the Best Bet Diet, an exercise regime and supplements meant I was going to look at all this first.
I embarked on the Best Bet Diet which I thought would be so difficult at first, particularly cutting out all dairy and gluten but I did it and haven’t looked back. My neurology team have also been supportive of my choices which again is encouraging.
During all the uncertainty with my health and before I had received an MS diagnosis I decided to start running. I joined local Five Star Active group based in Auchterarder and puffed and panted my way through 2 minute runs!! I was a complete beginner and whilst an outdoorsy type I had never run before. I remember the elation I felt when eventually running one dark Friday night we realised we had run for 12 minutes non-stop!!
From there I ran a 5k then a 10k. With news in December 2017 that I may be facing MS I decided to sign up for a Half Marathon as I was terrified if I didn't do it then it may never happen. So in May 2018 a month after my confirmed diagnosis I proudly completed Loch Leven Half in 2 hrs 17 minutes.
During the rest of 2018 I tried to keep my miles up and my fitness level as I started to come to terms with having this chronic disease. I was learning (and still am) when to push my body, and when to rest, how to fuel and which foods keep me healthy.
I had dark days and towards the end of 2018 my GP suggested I needed some counselling which I have received both privately and from MS-UK. The services MS-UK provide have been a source of great help for me so I am therefore delighted to be able to raise funds for MS-UK.
I was dubious about entering the Virgin Money London Marathon as I was concerned it may be too much for my MS but I have gone from strength to strength over the last year, I don't know what the future holds, none of us do, but I run and keep as healthy as possible and stay in the moment as much as possible.
In January several of my running club buddies were starting their training for the London Marathon, we have nine from our club heading south for the run, and I thought if I’m going to do it, it’s now or never. I sent a message to Jenny at MS-UK to find out if there was a chance my waiting list place would come up and after a very excitable phone call, she offered me a place.
If I had a doubt about the marathon it was dispelled that day with my overwhelming excitement about it and also how delighted my friends, family and running buddies were too.
The training is so far on track, we have a wonderful coach who has put a great programme together for me. She knows about my MS and together we monitor it, she insists on two days rest after my long run and I never run consecutive days. Having other running buddies makes it easier to motivate yourself and the MS-UK runners have also been great, we interact in a Facebook group and follow each other on Strava.
I have some fundraising events planned but most of my target has been met from my initial post on Facebook sharing my story and my JustGiving page. I was overwhelmed by the amount of support I received. Many people did not know what I was going through and the messages I received when I finally told the world gave me a huge boost.
I am excited for London and delighted to be part of Team Purple, see you at the finish!!
Find out all about fundraising and becoming part of #TeamPurple on our website today!
I just wanted to wish you, on behalf of myself and the whole team here at MS-UK, a very Merry Christmas and a Happy New Year.
This year we have been proud to commemorate our 25th anniversary of supporting people affected by multiple sclerosis.
We have seen our newest service, MS-UK Counselling, grow rapidly as more and more people seek confidential counselling that is grounded in a knowledge of living life with MS.
Our helpline has answered thousands of enquiries and our Choices leaflets have been downloaded over 70,000 times from our website. We now have over 20 different titles, encompassing a wide range of topics, from diet and nutrition through to complementary therapies.
Our magazine, New Pathways, landed on doormats every other month, connecting thousands of people with the wider MS community. And our wellness centre, Josephs Court, has extended its range of complementary therapies and social activities to better support people affected by MS in our local community.
Next year, we will be launching our new strategy. Until then, thank you for your support in 2018. We couldn’t have done it without you.
Amy Woolf, CEO
Holidays are coming, so here's an update about our opening hours over the next few weeks...
The MS-UK office will be closed from 5pm on Friday 21 December until 9am on Wednesday 02 January 2019.
Josephs Court, our Wellness Centre, will be open during these times:
Josephs Court will then reopen at 9am on Wednesday 02 January 2019.
MS-UK Counsellor, Louise Willis reveals what you can expect from MS-UK Counselling...
Multiple Sclerosis (MS) can present many physical challenges and some can be identified and treated by the medical profession, but what about the hidden emotional and mental challenges that can be faced?
MS affects around 110,000 people in the UK. Each person affected has a different life story, an individual set of beliefs and values, and ultimately a different way of dealing with diagnosis and the changes that MS can bring. There is no right or wrong way forward, but sometimes some extra support can be invaluable at any stage of MS. From diagnosis to new changes and developments, MS-UK counsellors are here for you every step of the way.
One of our trained counsellors will call you at a time that is suitable for you. We ask that you are alone at this time and in a quiet, confidential place and that you are comfortable as the call can take between 30 and 45 minutes. If you are unable to answer the call straight away, we will always ring back around 5 minutes later.
Yes, counselling is a safe and non-judgmental space for you to talk about any worries you might have about any aspect of your experience with MS. Any information we take down is kept on our encrypted servers here at MS-UK and is not passed on to any third parties unless you ask us to.
We will only break confidentiality in the event of a safeguarding issue which would mean any form of harm to either you or someone else.
We will ask you about what is bringing you to seek counselling and about any mental health issues you may have. We will also ask you what times and days are best for you for your counselling sessions. They will be at the same time and day each week for six weeks.
If you are unable to make one of your sessions, let us know as soon as you find out and we can reschedule. However, if this is within 24 hours of the session you may forfeit the session as all of our counsellors are booked in advance.
After your assessment we will pop a counselling contract in the post, or send it via email for you to sign ready to speak to one of our specially trained MS counsellors.
We look forward to meeting you!
A year, wow, how time flies. At the time of writing this it’s exactly a year since I was diagnosed with multiple sclerosis (MS). Before that day I had no idea what MS was. Now all I think about is MS. Instead of thinking about what I want to do in 3 years time I’m now planning what I can do in 3 hours time. Every day is a different day. On a Saturday night I’m looking forward to my run in the morning and pumped up ready to go…then the morning comes. It’s Sunday. I’m struggling. Time to change my plans.
That is one of the things I’ve learnt most about MS. I’ve always made plans months in advance let alone weeks, but now I look at this in a new light. At first if I missed a plan I would sink to a new level, I felt like MS was controlling my life, I felt that it was the end of the world. Now I look at it and even though I’m still upset, I remember it’s only one day, they’ll be others I can attend. If you have amazing friends like I do then they’ll understand, as long as you let them. This brings me on nicely to what else I’ve learnt.
Talking. Talking about my MS, my depression, my everything is possibly the best thing I’ve learnt since being diagnosed. You shouldn’t have to bottle up what’s inside, it’s scary telling people but how else can someone help you? I’m not afraid to say that I had counselling. I’m not afraid to say I went home and cried after some sessions. I’m not afraid to say it is one of the things that’s helped me the most. It gave me the confidence to speak to my family, my friends, my girlfriend. It’s why I’m happy to be so public about everything I’ve been and am going through! Because of this they all understand what’s happening with me. MS doesn’t just affect the sufferer. I know that people have cried over my diagnosis and the affect it’s had on me, but I also know that being open and approachable about it has helped them. If I had to give one piece of advice to anyone suffering with something it would be to talk about it.
Do you have something you love to do? Love to see? For me fitness is the one thing I love to do. I may complain about running on a cold Tuesday night in Swindon, or a rainy Colchester morning, but once I’m out there I love it. Ok I lie (don’t judge me) but I love to read too. This year I’ve read over 30 books and they’re not just tiny books either! Escaping in to another world, furthering my knowledge in something, allowing myself to become fully immersed in a book has helped me through this year. Find something you love to do. Find something you want to love to do. Hobbies, interests, whatever it is, give it your all and you’ll appreciate it afterwards.
A year on and I still don’t really know what MS is. Does anyone?! I ask numerous silly questions multiple times and I will carry on doing this for as long as I live! One year down and hopefully many, many more to come. I’ll get there one day, maybe come back and ask again next year?!
MS-UK Counselling is a confidential service open to anyone living with MS. You can talk about your thoughts and feelings with a qualified professional that also has an understanding of MS.
Everyone experiences stress in one way or another. It can affect you both physically and mentally, making you feel anxious and impatient. But stress doesn't have to dominate your daily routine.
To mark Stress Awareness Day 2018, we are giving you the opportunity to learn how to focus your mind with a series of stress-busting podcasts hosted by mindfulness coach Zoe Flint. Each step-by-step guide is designed to give you the tools you need to de-clutter your thoughts, focus on the present, and ultimately reduce your stress levels.
I am delighted to say that our Annual Review 2017 is now published. This booklet is our way to thank our supporters and celebrate our success in a public way, and I hope you enjoy reading it.
Our vision is a world where anyone affected by multiple sclerosis (MS) can access the information and support they need to make their own decisions. Since 1993 we have led the way in promoting choice, tackling taboos and remaining independently funded. We are built on a foundation of listening and acting according to the needs of people affected by MS. I am thrilled to see that this is reflected in our work from last year.
We are driven by our values, guiding principles that inform every aspect of our work. In 2017 we were able to bring these values to life, and our services supported thousands of people. Every service is shaped by people affected by MS. By listening to people, we are able to offer services that are truly community led.
Thank you to every single person who has shared their voice with MS-UK or supported us so on our journey so far.
Our work would not be possible without the support of so many people.
It’s World Mental Health Day, an annual day to highlight the importance of looking after your mental wellbeing that is recognised by the World Health Organisation.
To recognise the day, the Prime Minister Theresa May has appointed a minister for suicide prevention. Jackie Doyle-Price will add this to her role as Health Minister to help tackle the stigma surrounding suicide.
Here at MS-UK, we have been told that when it comes to living with multiple sclerosis (MS) the mind is often overlooked. That’s why this time last year we launched MS-UK Counselling, a confidential telephone counselling service for people with a diagnosis of MS.
I wanted to let you know a bit more about it, as it is World Mental Health Day. The only service of its kind, MS-UK Counselling is focused on helping people with MS explore the emotional impact of living with this condition.
It is very common for people to struggle with coming to terms with a diagnosis or dealing with the uncertainty of how their condition may progress. For some, MS-specific counselling is crucial in supporting them to come to terms with their condition, understand their feelings and live positively with MS.
So if you are thinking about your mental health today with all the media attention on World Mental Health Day, do visit our web page to find out more about MS-UK Counselling. Our team of counsellors are here to help and support you,
Head of Services
MS Awareness Week 2018 is drawing to a close – thank you so much for all your support!
Over the past few days our supporters have been making their voices heard and spreading the word of our newest national service, MS-UK Counselling.
We at MS-UK would like to thank everyone who championed our message that it’s ‘good to talk’ by sharing our posts on Facebook and Twitter, reading our blog, and opening up about life with multiple sclerosis (MS).
With your help, counsellors like Jonathan hope to be able to reach out to as many people across the UK affected by MS.