Meet Laura, a member of our Board of Trustees here at MS-UK. Everyone on the board is a volunteer, bringing their expertise to the table to help deliver MS-UK's strategy and help the community.
I know first hand the value of volunteers in the planning and running of a charity through my own employment and hospice work. Volunteering gives you a unique and privileged position to influence the care and support that those with conditions like Multiple Sclerosis need in their journey of living the life they want to lead. This was the main reason I wanted to be a trustee at MSUK. I truly admire the approach of holding those people with MS at the centre of MSUK’s work. The ongoing positive messages that MSUK gives those individuals it supports, maintaining openness to current literature and research, is an approach that provides empowerment to those with MS to live healthier and happier lives. The knowledge I have gained through my own employment I hope has been of value to the trustee board in providing direction and making decisions that directly impact the work of MSUK. I have also enjoyed learning new skills and having the opportunity to see the vast considerations needed to ensure a charity runs to the best ability it can. It has been extremely rewarding to see decisions made at board level playing out to the positive results to those supported by MSUK. It is a privilege to volunteer as a trustee for MSUK and I hope that others will consider the skills and knowledge they may have that could support others in a volunteer capacity to ensure life-line charities are able to continue with their hard work that so many clearly benefit from.
This week, it's Volunteers Week! It's a chance to honour and celebrate all of out wonderful volunteers across MS-UK, from our fundraisers to our Community Champions, our Board of Trustees and the Virtual Insights Panel (VIP). Everyone at MS-UK appreciates all of the hard work that you do, and we couldn't offer the services we provide without your help to further help the MS community. Sally-Ann is one of our Community Champions and this is her story.
Hi, I’m Sally-Ann and I’ve only recently started to volunteer for MS-UK and straight away felt so welcomed to what I felt like was an extended family.
I myself have had MS for 9 years now and am extremely lucky that I’m still able to work full time and lead a pretty normal life with a few limitations. My late mother also had MS and so when I got my diagnosis it was not something new to me. My mother was primary progressive, confined to a wheelchair and my father her full time career.
I know how awful this disease can be and how things can change overnight. Since my diagnosis it changed my life, and I’ve tried to do something to raise money for charity every year. This means I’ve walked 26 miles, climbed Snowdonia (twice), 100 miles in a month and various other things.
I’ve always wanted to raise awareness for MS and share my story to help others affected by MS.
When I saw the advert for a Community Champion I thought I could do that. I’d be able to get the name out there and get people thinking, raising the awareness and then raise money at the same time. Ticks all the boxes of what I what to achieve.
From day one MS-UK have welcomed me with open arms and I really feel like they are an extended family, and because of this it makes me want to do more for them. I want to think of other ways to raise money and awareness.
I get so much from knowing every little penny I raise helps them so much and they are so thankful, and I know this as they will ring and tell me.
So I know everything I do means so much to them, and therefore it means so much more to me. Thank you MS-UK!
Research student and MSer, Hannah Morris shares the findings of a survey to determine the impact of COVID-19 on people living with multiple sclerosis (MS).
As COVID-19 restrictions are gradually being eased and the number of people contracting the disease goes down, we can’t help but reflect on the whirlwind of changes that we have had to endure over the last year and beyond. Not a single person in the world has not been affected by the situation to some extent or another, whether it be directly by catching it, or simply having to change the daily routine to adhere to social distancing protocol regardless of if you have even known anyone to have had COVID-19.
Our article was recently published in the latest edition of the New Pathways magazine, relating to out interesting findings on the experience and impact of COVID-19 on people with multiple sclerosis (MS) and I wanted to use this opportunity to share a summary of findings to those who may not have had a chance to read the article.
Most people, like myself, reported that the COVID-19 pandemic has had a neutral impact on them and in most cases, this was due to a mixture of positive and negative things that have come out of the situation. The negatives people mentioned were mostly due to anxieties as a result of treatment interruption, whether it be related to medication, various therapies, or even just routine appointments. The positives mostly related to being able to use the extra time at home to engage in hobbies, be with family more, or just to rest, something that those of us who suffer with MS fatigue are massively grateful for!
Unfortunately, however, for just over a third of those who took part in the survey, the COVID-19 pandemic has had a negative impact on their mental health causing additional anxieties related to fear of themselves, or loved ones catching COVID-19, or the impact on treatment leaving them vulnerable to having a relapse or progressing. People who are younger, have a progressive diagnosis of MS and have existing psychological symptoms were more likely to report a negative impact.
We believe that these are the subgroup of people with MS that would benefit from additional support, perhaps by drawing upon the things that are working for those who have been managing well at this time. However, as we now see things returning to some level of ‘normal’ it is hoped that the negative impact may be lessened as treatments recommence and the risk of catching COVID-19 decreases.
This is just a summary of the findings, but if you’d like to read more, you can see the full article here: https://rdcu.be/cjTqW
Invitation to the MS community to support the development of a psychological intervention
As we make one final call for people to support in the next step towards developing a psychological intervention for people with MS to bridge a gap that is missing, yet needed for so many, we invite anyone who hasn’t yet to complete our survey here: https://forms.gle/5YTssp4pDVFciYEe9
You can also read more about our research on the topic here: https://research.reading.ac.uk/neurodegenerative-diseases/multiple-sclerosis/
This World MS Day (WMSD), multiple sclerosis (MS) blogger, Martin Baum shares his thoughts on raising awareness of MS in mainstream media outlets.
Just a couple of weeks ago was MS Awareness Week, an annual opportunity to help people better understand life with MS. An occasion for others to become inspired to do whatever it takes to change the world for people like me living with MS. The goal of this social media campaign was - and is - to raise awareness about MS and today (5th May) I searched the internet to see for myself what impact MSAW had made in the national press.
On Google there was an abundance of websites with MSAW headlines to attract clicks to links for MS awareness content with specific lead-ins such as:
March is Multiple Sclerosis Awareness Month, so let's help those suffering from it... The aim of the awareness week, which ends on Sunday, is to give people affected by MS... Every March is Multiple Sclerosis Awareness month, a time for sufferers, family...
Regrettably, not one of these teasers failed to hook any national newspaper or internet coverage outside of their own MS bubble. The same applied last year for World MS Day which makes me wonder if this year will be any different in raising the media profile for MS and MSers alike.
Of course, it’s easy to shrug, do nothing and continue to be a victim of media indifference towards an illness that has been with me for almost 40 years. This was why I recently felt compelled to write an open letter to the producers of Coronation Street after they inaccurately suggested Charles Bonnet Syndrome (CBS) – a condition that causes hallucinations – was something people living with MS commonly develop.
For a syndrome too obscure and extremely rare for the MS Society, the MS Trust, OMS (Overcoming MS), and MS-UK search engines to recognize, CBS has its own support group, Esme’s Umbrella, as it is a standalone condition. Yet the producers who believe, and I quote, that “MS is still a taboo subject”, have remained unapologetic for the distress caused for portraying its MSer character Johnny Connor as losing his mind.
News of my correspondence made its way into the pages of The Times, Telegraph, and even The Daily Star here in the UK. It was calculated that the articles secured a combined circulation of more than 500,000 readers. By my calculation, this is half a million more than is and was seen in the media for either World MS Day 2020 or MS Awareness Week 2021.
In the run up to WMSD, given that the Coronation Street MS storyline is still ongoing, my wish is for World MS Day is for television companies to never again misuse MS for a cheap storyline as they have in 2021, just as PT Barnum did with his freak show back in 1919.
Our Fundraisers of the Month, Lucy and Kate share their story about what they're doing to support MS-UK and why
Remember those really warm days just over a month ago? Yes, REALLY it was very warm - it was actually so sunny and warm that on one of those beautiful days I got a little sunburn - in March! The reason for this is I was out walking for a good four and a half hours, here is why:
My sister Kate and I had decided to walk the length of Suffolk, along St Edmund Way, aiming for people to sponsor us to raise money in support of MS-UK, and (luckily) we started our first leg of the walk on the warmest day of the year so far. Our mum had MS and, although she didn't really need the support from MS-UK that much, Mum felt they were always there if she needed them. I remember her saying that she felt ‘lucky’ as she was diagnosed late in life, “I’m getting old anyway!” she would say, but she also felt MS-UK is a very valuable charity to others with MS.
Sadly, we lost Mum to cancer four years ago. After Mum died, I walked the Essex Way, and managed to raise money for the new Cancer Centre at Colchester Hospital. I’d spoken about it with Mum as she felt she wanted to support the new centre in some way, which just goes to show that she was thinking about other people, as she so often did - she knew there was no way that the centre would be built in time for her to benefit from it. She was happy that I had a plan. Just after her birthday and just before the 4th anniversary of losing Mum, my sister Kate and I thought it was about time we did something else in her memory.
We decided on the 80 mile route running the length of Suffolk, winding its way through some beautiful, quintessentially English, and typically Suffolk villages along the way. Our first leg was from Manningtree train station on the Essex/Suffolk border to Stoke by Nayland, approximately 11 miles, so a good chunk of it to start.
As soon as we stepped onto the track just beside Manningtree station we heard a chiff-chaff in the trees beside us, the first I’ve heard this year, reminding us that Spring has arrived. At the end of the lane, just before we turned to walk through the red brick tunnel holding the train tracks above us, we saw the first of the signs for St Edmund Way, letting us know that we were on the right route. We continued to look for these markers along the route in reassurance, despite me carrying a paper copy of the Ordnance Survey Map in my backpack (and having the app on my phone)!
Still in Essex, but only just - along on the banks of the River Stour we spotted a pair of goldfinches, bouncing along the blackthorn that was lining the path. The flash of yellow and red brightened our walk and made me think of the huge tub of bird feed, bigger than your average kitchen bin, that Mum always had filled to the brim, ensuring that she helped the birds through winter.
Mum loved her wildflowers too, sometimes not necessarily knowing their more common names, usually referring to them with their old country folk names, I was pleased to spot a few stitchwort flowers just about opening, of course Mum called these ‘shirt buttons’. Soon the banks and hedgerows will be full of these pretty little white stars, just in time to coincide with the bluebells, which make for a beautiful combination, especially with a few red campion thrown in for measure!
As it turns out, it has been rather cold for a while now and nature has very slowly been waking up, the bluebells are only just here and the hawthorn is still in bud. We have now completed three sections of our walk and have reached Melford Country Park. We have enjoyed an abundance of wildlife, wildflowers and other sights along the way, including a pair of red kite circling above us at Nayland, the dragon on the walls of St Mary the Virgin at Wiston, peacock, brimstone and orange tip butterflies, swallows over Sudbury Meadows, and a little mouse, busy in the bottom of the hedgerow, that we quietly watched for a few seconds but it felt like several minutes.
Mum loved Suffolk and would have loved all the wildlife we have seen so far, she would have been able to identify so much more of it, but we are working on our knowledge and can’t wait to see what we discover next!
Check out Lucy and Kate’s fundraising page for an update on their challenge and to offer your support. If you are inspired by Lucy’s story and thinking of taking on a personal challenge, get in touch today and we can help you make it happen! Call 01206 226500 or email email@example.com
I am very proud and excited to be launching our MS awareness e-learning course which is aimed at anyone who is working with or supporting someone with multiple sclerosis (MS). If you want to increase your understanding and knowledge of this long-term health condition then please do sign up by clicking here and register.
Professionals here at MS-UK have worked together with the MS community to create this interactive course. It provides an overview of MS, what causes it, the different types of MS and how someone gets diagnosed. We also describe the different kinds of symptoms people experience and what treatments are available. We share real-life experiences and what professional support is available.
It is has been approved by The CPD Certification Service so will count towards your continuing professional development. It takes approximately 1.5 to 2 hours to complete and costs £20 (plus VAT) which is paid via PayPal. Alternatively, you can contact firstname.lastname@example.org if you would like to enrol and pay in a different format.
If you are interested in enrolling a group of more than five professionals, please email email@example.com to discuss a group discount rate.
Should you want further information or have any questions please do not hesitate to contact Diana Crowe, Head of Services at firstname.lastname@example.org or by calling 01206 226500.
As part of MS-UK's Online services, we have developed the Peer Support Service. Within this, there's several Peer Pods and each of them are hosted by someone living with multiple sclerosis. There's ones for specific interests and hobbies, and a general one where you can meet people in a similar situation who understand MS and the challenges it can bring. This blog is from one of our Peer Pod members. If you fancy taking part in one, click here.
I stumbled across the MS-UK website and the Peer Pods almost by accident and I thought why not give them a try? I am so glad I did, it has opened a whole new world to me, there are other people out there with MS who just get it.
The Peer Pods and the virtual friends I have made attending have been a great support to me as I was only diagnosed with RRMS in March 2021, after previously being diagnosed with CIS in 2014. The Peer Pods are a great space to talk not only about symptoms and treatments but mostly about other areas of interest such as TV, podcasts, craft and nature.
One of the members of the Peer Pod has also offered to buddy up with me so I can contact him anytime about the weird and wonderful symptoms and get support and advice. This has been a great comfort blanket.
The Pods include a great mix of people of all ages, with different types of MS including those that have been living with MS for several years. Everyone is made to feel welcome.
Some of Peer Pods also have WhatsApp groups which are great way to keep in touch and offer help and support to each other. After being widowed in January the group are always there to offer a word of comfort and support which I have found invaluable.
This has all resulted in volunteering to be an MS-UK VIP as I want to give something back to the charity that has helped me so much. In short giving the Peer Pods a try has given me such much and whole new group of friends that I hope will be around for a very long time.
Everyone with a diagnosis of multiple sclerosis (MS) in the UK should have access to an MS nurse, but sometimes patients do not know what they should contact them about or the support they can offer. Sometimes they just don’t want to be a bother, but actually, your MS nurse should be your first point of contact if there are any changes in your MS and you’re not bothering them, it’s their job.
What does an MS nurse do?
MS specialist nurses are trained to offer direct support and clinical advice. They can also refer you to other services such as physiotherapy, occupational therapy, counselling and urology to name a few.
How often should I see my MS nurse?
How often you see your MS nurse will depend on how active your MS is. MS patients should see or have a telephone appointment with their MS nurse at least once a year or every 6 months, but if your MS is more active or you are taking a disease-modifying therapy you will see them more often. Even if there has been no change to your condition since the last time you spoke it’s important to just check-in and document that on your records. It is also a good opportunity for your MS nurse to share any recent developments in the world of MS and anything new that might be of help to you.
Tip: Between appointments keep a list of questions you want to ask. Sometimes you may have lots of questions you want to ask and when the appointment finally comes around, you forget what we wanted to ask. Alternatively, you can download this free helpful list of suggested questions, which might help get you started.
I don’t have an MS nurse, how do I get one?
If you do not have an MS nurse or perhaps you’ve not engaged in a while and need to get back in touch, the MS Trust offers a map, detailing all the MS nurses in the country and how to get in touch with them. Click here to visit the map and find your MS nurse.
Ella Shaul explains how multiple sclerosis counselling helped her in so many ways
I decided to start counselling with MS-UK as I had a recent relapse, and have struggled for most of my life with depression, anxiety and mood swings. I have been experiencing multiple sclerosis (MS) symptoms for about 10 years with no diagnosis until two years ago.
I wanted to talk through how I was feeling with someone who would understand, and start to feel that I was making a step forward to feeling better and facing my condition and my depression. I wanted to find an acceptance of my illness.
It was fantastic having Jaz to talk to each week, especially through the difficult times – what with the pandemic and the uncertainty of MS and the world around us.
I had a really good sense of wellbeing after my counselling sessions. I also realised I was enough just being myself, and not focusing on what I can or can't do anymore. I learnt to put my health and wellbeing before other things so I was then able to manage life better. I stopped putting as much pressure on myself to be doing everything.
I found it was easier to ask for help, and be more upfront when I was struggling, instead of just carrying on and making myself feel more unwell. I have been able to stop criticising myself, or if I do, I am able to change the way I’m thinking before it spirals.
Family and friends have noticed a difference in me lately. My son has even said how calm I am and much happier I've been.
I have started to connect with others with MS and it’s been really positive. It's been great knowing people who have the same struggles and discuss the similar tools that we all seem to have to help ourselves.
I would recommend counselling to anyone. At first I was unsure about it all, especially being in lockdown and having to home school – I thought I wouldn't be able to manage it all. I found taking the time out to speak with Jaz so beneficial. It's definitely a non-judgmental, safe place to offload and navigate ways to help yourself. Also I like that you can speak again with your counsellor again after six months to check how everything is going.
This week, 10-16 May is National Vegetarian Week. Diet can have an impact on multiple sclerosis, and some people use it as a way to contribute to the management of the condition. Click here to read more about diet and supplements with our Choices booklet. Here, this recipe for stuffed aubergines is a great swap packed with protein and tasty vegetables for a meat-free meal. Why not give it a go this week?
1. Preheat the oven to 220°C fan. Cut the aubergines in half and place on to a baking tray. Score the flesh with a knife (being careful not to cut all the way through), drizzle with olive oil and salt, and roast for 35-40 minutes until soft. Once soft, remove from the oven and leave to cool.
2. Turn the oven down to 180°C fan. While the aubergines are in the oven, cook the quinoa. Place a medium saucepan over a medium heat and add the quinoa and boiling water. Bring to a simmer and cook for 12–15 minutes until the water has been absorbed. Once cooked, remove from the heat and leave to one side until cool.
3. Using a large spoon, scrape the flesh out of the aubergines and on to a board. Roughly chop into pieces then put into a large bowl. Add the tomatoes, balsamic vinegar, pine nuts, harissa and quinoa. Season with a large pinch of salt and pepper.
4. Using a tablespoon, scoop equal amounts of the mixture back into each aubergine skin. Place them back on the baking tray and bake in the oven for 20 minutes. Sprinkle the parsley on top before serving.
From Deliciously Ella Quick & Easy: Plant-based Deliciousness by Ella Mills (Yellow Kite, £19.99).