Dean Jeffreys, Online Programmes and Project Manager, explains MS-UK’s new national service and why you should get involved
Hello! I am the newly appointed online programmes and project manager here at MS-UK. I have the pleasure of launching our new and exciting online service for 2021. I have been working at MS-UK for just over three years now, and I will be using this experience to deliver and offer a wide range of online activities for the multiple sclerosis (MS) community.
This year, we will begin by launching our online exercise classes that are accessible for all abilities, and showing you how to get the most out of exercising from home. In addition, we will be starting other new classes and courses that will be the core offering from MS-UK. This includes mindfulness courses, chair yoga sessions, and our peer support service that will help you connect and stay socially active with others.
As we move forward in the year, we will be adding many more activities that you can get involved in. This includes live information sessions on topic areas such as diet and nutrition, symptom management, and complementary therapies. We will also offer alternative activities to those that get you physically active, including sessions on things such as poetry classes and arts and crafts.
As with everything we do at MS-UK, it is community-led, so if you have suggestions for activities you would like to see us hold online, you can email us firstname.lastname@example.org and tell us what activities you would like to see in the future.
Online exercise classes
Starting in January 2021, we have our new online exercise classes, with six classes taking place every week on a Tuesday and Thursday from 11am. The classes are structured in a way that will make them accessible for all.
The classes themselves have been specifically designed to help people stay active at home, and will be delivered by our Exercise Specialist, Alan Pearson. These classes will give you the confidence to manage your wellbeing independently by attending the classes and practising the exercises in your own time.
How the classes are structured
Find out more
Please visit our website page www.ms-uk.org/ms-uk-online to see what we have going on and to book a class. If you have any questions and would like to know more about what we are offering, please email email@example.com or call MS-UK on 01206 226500.
Thank you for reading and I hope to see you in a class with us soon!
In October this year, I decided to run a virtual marathon, my first one. I began training, building up and getting the miles in my legs, tentatively at first to avoid injury but building up the distances as I went. It was very hard but didn’t take long and like my dad, I (quietly) don’t give up.
My motivation… my dad. An athlete, a footballer, champion snooker and darts player, canoeist and lifelong fisherman. He received his multiple sclerosis (MS) diagnosis when he was 27 years old, not long after I was born. He is now 66 and although the progression of the disease has been relatively gradual, it has taken away all those things. He has lost the vast majority of the mobility control in his legs amongst other things. Having lived with MS for 40 years I cannot believe how resilient and calm he is and yet open. We all keep a little back from our loved ones and I do not doubt that he does because this is his and he owns it. He shares what he wants and faces into what he doesn’t. He doesn’t complain, he doesn’t moan and he doesn't give up.
I originally intended to run the Official 2020 Virtual TCS New York City Marathon solo and self-supported, however, an ambitious practice run turned into the full distance a week ahead of schedule! I was out on the trails and things were working out well so decided to push on to make sure I understood what the ‘real thing’ would be like… good job too as I learnt a lot about what my body needs when under this much pressure. I thought of my dad.
On the day, after designing my route and packing my vest with food and water, I decided to set off from my dad’s home and take a nostalgic run through the old days along roads, towns and villages I remember when growing up. The weather was shocking with heavy rain and being soft underfoot - so Garmin ‘Set', crime audiobook ‘On’ (Dad loves detective stories), head down, swing the arms and see where the legs take you!
20 miles in and to be honest I’d had enough of natural beauty, enough of my audiobook, my body was rejecting food and all the water in the world was not hydrating me. There was no reason I could be, but I was bored! So I called my wife and spoke to my kids who buoyed me up. Then called my dad who picked up just as the wind and rain returned and couldn’t hear a damn word I was saying! They say the last six miles are the worst. That said, I completed it, solo and self-supported while playing detective in the pouring rain.
My reward (medal) is still in the mail from US however the New York Road Runners app provided this augmented reality one which really lifts the spirits when you award it yourself while you pose for as good a selfie as you can get (or care about getting!). My other reward was a cold, then hot bath, a can of American Cream Soda, nine sausages with huge amounts of Dad's mash.
I was reading about MS-UK and what caught my eye, in particular, was their focus on the mental health of individuals with a multiple sclerosis diagnosis. My dad, my brothers and I are all fortunate to have one another to provide all kinds of support, particularly through lockdown, but we all know there will be some serious and important decisions to make in the next few years. We will need to strike a balance between support and independence. There will also be times when we do not know what to do, or if it is the ‘right’ thing and we will need the support of MS-UK.
As for fundraising, I told my story to those at work, those I run with or who I know run. With so many charities, particularly in 2020, needing more support than ever I didn’t want to appear to pressure them but when explaining the reason for my choice and the impact the support of MS-UK will one day have, people gave what they could.
Simon has raised an incredible £737.53 for MS-UK, here is the link to his fundraising page https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=SimonGardner11&pageUrl=1
If you would like to take on your own challenge to raise money for MS-UK like Simon did, please contact Lucy today on 01206 226500 or firstname.lastname@example.org
We have been very busy on the MS-UK Helpline, not only answering all your calls, emails and web chats but writing new publications so you can be as informed as possible when it comes to managing your multiple sclerosis (MS).
Spasms and spasticity is a subject that you, the MS community, asked us to write about. Symptoms that are commonly experienced but not always really known what they are, what the difference is, or the many ways in which they can be managed.
This booklet will really help people to understand these symptoms, what causes them and the effects they can have. The booklet explains a variety of self-management techniques, as well as information on physiotherapy, different treatment options, complementary therapies and more.
We surveyed the MS community about how they deal with their spasms and/or spasticity and we had great feedback. Thank you to those who shared their experiences. We have included a number of quotes within the booklet which really help to bring it to life. We do this with all our booklets because we can all learn from other people’s experiences. What works for one person will almost certainly help another.
You can download our new booklet from our website here. It is also available in plain text format. You can also order a hard copy and we will post this to you as soon as we are able. Please order via our website here.
To take a look at our full range of Choices booklets visit our website here. If you can’t find what you are looking for then please do contact our helpline and we will be happy to speak to you. We are here to provide unbiased information and professional support. We also provide emotional support should you just need someone to talk to.
We are here to help you to live a happier and healthier life.
Laura and Ryan
Thank you to everyone in the MS-UK community who got involved with our World Mental Health Day event on Saturday 10 October. We just wanted to bring all the resources together in one handy place, so anyone can access them in the future.
Here's a list of links for the resources. If you would like any support, please get in touch. MS-UK is here for anyone affected by multiple sclerosis (MS) and you can reach us on 0800 783 0518 or by contacting us via our online web form.
This year we commemorated World Mental Health Day by sharing the findings of our Loneliness and Isolation Report. You can find out more about this piece of research by reading the full report below or visiting the web page.
Across the UK, there are a range of mental health charities and organisations offering support and information. Here we have listed some well-known organisations which you may find useful.
For a longer list of organisations that specialise in certain areas, visit the NHS website.
The NHS urgent mental health helplines provide 24-hour advice and support for anyone living in England. You can find a helpline number using the NHS website.
If you feel you or someone else is at risk of serious harm or injury, please call 999.
The Mental Health Foundation aims to help people understand, protect and maintain their mental health. The offer community and peer programmes, undertake research, give advice to people affected by mental health conditions and campaign for change.
Mind provides advice and support to empower anyone experiencing a mental health problem. They also campaign to improve services, raise awareness and promote understanding. They run an Infoline, a Legal Line and produce publications about a wide range of mental health issues.
Across the UK, Mind have a network of independent local Minds that are run by local people, for local people. They provide support like advocacy, counselling, housing advice and more.
Rethink Mental Illness offer a network of 140 local groups and services and they offer expert information via their website. They also campaign to make sure everyone affected by severe mental illness has a good quality of life.
Samaritans offer a 24-hour helpline that anyone can contact if they are struggling with their mental health. You can call them any time, 365 days a year, on 116 123 for free. Samaritans also accept email enquiries, letters and have a self-help app on their website.
SANE provides emotional support, guidance and information to anyone affected by mental illness, including families, friends and carers.
You can read our Choices booklet about MS and mental health online today or order a printed copy.
Saturday 10 October 2020 is World Mental Health Day. Here at MS-UK we are reflecting on the findings of our Loneliness and Isolation Report, hoping to bring these important issues into the light.
We are also sharing mental health resources live throughout the day on our Facebook page (join us on Facebook between 10am - 3pm).
There are a number of health professionals who can help to support you if you are experiencing mental health issues.
This is often a good starting point if you are feeling anxious, having trouble sleeping or beginning to worry about your mental wellbeing. It can be difficult to start this conversation but your GP will be able to offer advice and refer you on to mental health services if they feel it is needed. Your GP may mention the IAPT programme, which stands for 'Improving Access to Psychological Therapies. You can find out more about IAPT on the NHS website.
MS nurses are familiar with multiple sclerosis (MS) in a way that means they can spot signs of low mood or depression, sometimes before you notice them yourself. Talk to your MS nurse if you have any worries and they will be able to signpost you or refer you on to other support.
Counsellors do not offer advice and will not tell you what to do but can help you to talk about your experiences to make it easier to find a way forward. MS is an unpredictable condition and learning to live with this uncertainty can be challenging. Counsellors can help you to explore how MS may be affecting your wellbeing and how you are adapting emotionally.
MS-UK Counselling is a telephone service that is available to anyone with a diagnosis of MS. You can register online for MS-UK Counselling or ask a health professional to refer you. If you would like to try face-to-face counselling, check if your local MS Therapy Centre or local MS Society group offers this. You can also search for a therapist through the BACP website.
You can read our Choices booklet about MS and mental health online today or order a printed copy.
Mobile phone or tablet apps can be really useful for supporting your mental wellbeing, so this World Mental Health Day we take a look at what is available in the app store at the moment.
At MS-UK, we believe in offering people affected by multiple sclerosis (MS) as much information as possible, so you can make your own informed choices. That's why we have listed as many apps as possible, but which ones you try out are up to you. Where we can, we have also included links to the app websites.
You can download any of these apps via Google Play or the apple store straight to your smartphone or tablet.
This app helps people manage their emotions and get a restful nights sleep. It gives options to subscribe for personalised mindfulness meditations as well. The idea behind the app is to find strength and rest through using Aura when you feel stressed or anxious. Visit the Aura website.
This app is all about managing your breathing to reduce stress. It features instructions and practice exercises to help users learn the stress management skill called 'diaphragmatic breathing'.
This is a free app that helps you manage feelings of anxiety and depression by turning negative thoughts into positive ones.
Another free app, Chill Panda measures your heart rate and suggests tasks to suit your state of mind. Visit the Chill Panda website.
This app is all about developing a mindful approach. It includes guided exercises, videos and meditation. Find out more on the Headspace website.
This is a free meditation app, with paid features you can subscribe to as well. Visit the InsightTimer website.
This app has simple learning modules to help you manage fear, anxiety and stress and tackle unhelpful thinking. It is free, but has some in-app purchases as well. Visit the My Possible Self website.
This is Mind's online community, which used to be called Elefriends. It is a forum where you can listen, share and be heard thorugh posting, commenting and private messaging. Visit the Side by Side website
This is an app that offers a free eight-week course to help you manage anxiety and stress, designed to be completed in your own time and at your own pace. You can find out more about the course on the SilverCloud website.
This app lets you track your mood for free and access targeted mindfulness practices. The app suggests you spend 10 minutes a day to help bring more balance into your life. Visit the Smiling Mind website.
This is a free online community, offering digital mental health support for anyone aged 16 and over. You can find out more about the forum on the Togetherall website.
This free app aims to help you take control of your worries, one at a time. It helps you record, manage and solve your worries based on Cognitive Behavioural Therapy (CBT) techniques. Find out more on the WorryTree website.
On Saturday 10 October, MS-UK is posting live on our Facebook page to commemorate World Mental Health Day. This year, the theme for the day is 'mental health for all' and we are sharing the findings of our Loneliness and Isolation Report to highlight how important mental health support is for people affected by multiple sclerosis.
At MS-UK, we believe in listening to people affected by multiple sclerosis (MS). Over the years, we have heard from more and more people who have found that MS impacts their mental health. That's why we launched MS-UK Counselling a few years ago, which is a telephone service available to anyone in the UK who has recieved a diagnosis of MS.
Counselling is a talking therapy. It gives you the opportunity to talk and reflect in a confidential and supportive space with a qualified counsellor who is registered or accredited with the British Association for Counselling and Psychotherapy (BACP). Counsellors do not offer advice or tell you what to do but help you to talk about your experiences to make it easier to find a way forward.
Counsellors help you to explore how MS may be affecting your wellbeing and how you are adapting emotionally.
MS-UK Counselling can support you with:
First of all you will have an assessment with a MS-UK Counsellor, to make sure this service is right for you. If everyone agrees to go ahead, you will have six sessions that are on the same day and time each week. Each session lasts 50 minutes, and can be delivered over the phone or via a video link. All clients must be over 18. At the end you will have the chance to give us feedback, or seek further support if you feel you need it.
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.
You can register online using our web form, or give us a call on 0800 783 0518 and we can support you to register for MS-UK Counselling.
MS-UK is piloting single session therapy as a response to the anxieties and concerns that MSers have shared with us about the impact of COVID-19. There are currently only 20 spaces available for this first pilot so book quickly, but should this pilot be successful we would look to continue to offer it as a regular service.
What is Single Session Therapy?
Single session therapy is a focussed one-off session with an MS-UK counsellor who uses their counselling skills to listen and help you find a way forward with a specific MS-related issue that is impacting on your daily life right now. The session will be conducted either by telephone or Zoom to ensure the service is accessible UK wide.
How do I sign up?
If you want to find out more about this pilot then please email Diana Crowe, Head of Services at email@example.com who will send you more information about how to take part. Please note that you must have an MS diagnosis to qualify for this pilot.
About MS-UK Counselling
Counselling is a talking therapy. It gives you the opportunity to talk and reflect in a confidential and supportive space with a qualified counsellor who is registered or accredited with the British Association for Counselling and Psychotherapy (BACP). MS-UK is a BACP organisational member and our number is 275169.
Counsellors do not offer advice or tell you what to do but help you to talk about your experiences to make it easier to find a way forward.
Your mental health and emotional wellbeing are linked to your experience of MS so our counsellors have had training about living with MS.
Counsellors help you to explore how the pandemic and MS may be affecting your wellbeing and how you are adapting emotionally.
If you have recently been diagnosed with multiple sclerosis (MS), you may well be feeling overwhelmed. You may even feel a sense of relief that you now have some answers. A whole range of thoughts and feelings are whizzing around your brain and you are wondering what to do now and where to go from here.
A diagnosis of MS may make you think quite differently about your life. It is normal to worry about what is going to happen, if a little twinge is another sign or symptom, or how the condition might progress and how it might affect your life. You may also be concerned about the effect MS will have on your family, friends, employment or hobbies. There is no right or wrong way to react to a diagnosis. It is your MS and how it affects you will be unique to you. Do not be afraid to openly discuss your emotions with family, friends, healthcare professionals or charities like us.
Everyone differs in how long it takes to accept their diagnosis. Some people may even say that they still don’t after many years. Acceptance is important in enabling you to live your life to the full and to reach a point where you are empowered to do so. This will not happen overnight, don’t ever feel there is a time limit, as it will differ for everybody. Just remember to be kind to yourself and give yourself the time you need.
Our Newly Diagnosed Choices booklet has a wealth of information for anyone who has MS. You can download the booklet from our website or order a printed version by filling out a form.