Have you thought about joining one of MS-UK's Peer Pods? Here, Peer Support Co-ordinator Vicky shares updates on this growing service for the multiple sclerosis (MS) community.
By now, I am hoping that you have all heard about our new service and the themed Peer Pods that we have been running since March. You may even already have attended one or more of our sessions and enjoyed meeting others online. At MS-UK, we are dedicated to letting the voices of the MS community inform the work we do – so I am pleased to announce that we will be launching three new Peer Pods, based on what our Virtual Insights Panel or VIP (made up of people living with MS) told us they would like to see.
We understand that there are some symptoms and issues that can be difficult to talk about, particularly when they are around sensitive subjects, so we hope that by having these specific groups, people will feel more comfortable discussing the topics that really matter to them.
We also know that 'newly diagnosed' is not necessarily just those that have been diagnosed in the last month or year, or even the last five years. We understand that many people when first diagnosed can spend several years not engaging with health services or the 'MS community' and so this pod is for all those that may only now, for whatever reason, be finally feeling ready to talk.
Unlike our current pods, these sessions will have no particular theme, which means that anything can be a topic of conversation and a chance to share stories and learn from each other.
We know from experience what great benefits there are to be gained from speaking with others that are living with similar challenges, and how this can help people to feel less isolated and alone – regardless of whether you have a good support network of family and friends.
But don’t just take my word for it! Here is what some of the attendees of our pods have said so far:
'Thank you so much for your support. I really enjoyed the zoom get together yesterday, what a fantastic group of people! It was very interesting hearing everyone’s story and I’d really like to join you again in a couple of weeks.'
'I am so happy that I’ve met you, your positivity is infectious, thank you so much!'
'Thanks so much Vicky, I will pop in again next week. I really benefitted from the laughs & sharing experiences.'
'That was lovely! I nearly didn’t join as I was having a bad day, but so glad I did! Thank you so much for setting up the Peer Pods Vicky, it’s like a massive breath of fresh air seeing you all and chatting so freely!'
'So good to chat, ladies. It felt totally ok being able to share with each other in such a brilliant safe space'
'You have all helped me when I was at my lowest and loneliest.'
It needn’t stop there either! We are always happy to hear from you, so if you have any suggestions for a Peer Pod that you would like to see in the future – or if you like the idea of volunteering with us and facilitating a pod yourself – then please do get in touch!
Fancy joining one of our current or future Peer Pods? Simply contact us by emailing email@example.com
I look forward to ‘seeing’ you soon!
Hosted by the Marmalade Trust, Loneliness Awareness Week is here to recognise that we all get lonely. As humans this is a natural emotion that we feel as sociable beings. In the past year in particular, being made to isolate and stay in our homes has been a particularly lonely experience, despite a unifying one. Being separated from friends, family, colleagues and human interaction overall has been difficult for many at times. As the world reopens, it's easy to get overwhelmed so check out this blog from MS-UK Counsellor Mark Howe on tips to socialising in this new version of the world.
This year, the Marmalade Trust is campaigning to remove the stigma attached to loneliness and accept that it exists. It can be a difficult topic to talk about and sometimes tricky to recognise that you’re feeling this way. By increasing our understanding of loneliness, we can further help ourselves and others who experience loneliness. By removing negative language and stereotypes associated with it, loneliness becomes a widely accepted emotion and experience. The Marmalade Trust has this set of resources to help you learn more about loneliness. From the physical effects, how to talk about it and self-care, there’s something for everyone.
Here at MS-UK, we’ve been working with multiple sclerosis (MS) community to improve the services available to people who are experiencing loneliness. The Peer Support Service was launched at the beginning of this year, with a selection of Peer Pods available for anyone living with multiple sclerosis to join.
The Loneliness and Isolation report was released last year, and you can read the full report and findings here. Click the here to read Diana’s blog about the steps MS-UK is taking or watch her video below.
Last year MS-UK launched our report on Loneliness and Isolation during Loneliness Awareness Week in the height of the COVID-19 and lockdown number one where we were all been forced into isolation! A year on we have made delivered on some of the next steps which Diana Crowe, Head of Services here at MS-UK would like to share. Here's just some of the highlights.
We said we would look at creating a new online forum for people affected by multiple sclerosis (MS) however when we conducted our research we realised that there were already so many great forums out there. Instead, we shared videos on all of our social media channels about what online forums are, how to access them and how to stay safe when using them. We also created a webpage to share the different forums with the MS community.
At the beginning of 2021 we also launched our peer support service which is part of MS-UK Online. We are connecting people within the MS community who have common interests through our different online Peer Pods. Please email firstname.lastname@example.org if you would like to find out more how you can meet others.
We have continued to provide our online counselling service which is delivered by telephone and also by Zoom. We launched in September single session therapy which is a one-off session with a counsellor who helps to find a way forward with a specific MS-related issue that is impacting on life right now. Due to current high demand we are unable to take any referrals but are working hard to increase capacity and reduce waiting times. Please email email@example.com if you want to register your interest in the service and be informed when we are taking referrals again.
We continue to offer Mindfulness courses that are designed to help people with MS live more consciously and to help manage their MS. We have a nine-week Mindfulness Based Stress Reduction course and a four-week course which offers a less intensive option and is a good introduction. Please email firstname.lastname@example.org if you would like more information.
In October 2020 we ran a campaign on World Mental Health day which enabled us to share information about support available at MS-UK and other resources and services with different mental health organisations. In March this year we ran a campaign during National Complementary Therapy week to showcase the many therapies that for some really benefit individuals. Please take a look at our Choices booklet.
Promoting kindness was really important for the MS community so we ran a campaigns on World Kindness Day last year and in February this year on Random Acts of Kindness Day. We encouraged people to send one our postcards to reach out to someone in a random act of kindness which can make such a difference to wellbeing. Watch this video if you missed it to hear some of the stories you shared!
We will continue to do what we are doing and ensure that we do not lose sight of the issues of loneliness and isolation and work with our staff to help them recognise signs and how to support people more effectively. We are starting to talk with link workers within social prescribing services to make sure they are aware of the support available to people affected by MS.
This week we will be launching our three new Peer Pods to continue to grow our Peer Support service. They have all been chosen by our Virtual Insight Panel and we invite you to take a look and get involved. Please visit the webpage about our Peer Support Service for more information.
Watch Diana's video on Loneliness Awareness Week
Do you ever wonder if you’re doing the appropriate exercises to help you reach your goals? Or maybe you’re wondering if improving your strength and mobility is even possible with a progressive condition like MS?
The information sessions with Dr Gretchen Hawley, will not only answer those questions, but they’ll leave you feeling empowered and informed. You’ll understand the process your brain goes through to create new neural connections, resulting in improved strength and movement. You’ll also learn appropriate exercises and techniques to improve your balance and muscle tightness, leading to better function in your day-to-day activities.
Dr Gretchen Hawley is a physiotherapist and Multiple Sclerosis Certified Specialist. Her expertise in MS-specific exercise and wellness strategies often result in her clients feeling more control over their MS. Her tools and strategies are easy to understand and implement into your daily routine.
The sessions covered so far have reviewed neuroplasticity and brain changes with exercise, how to exercise to improve your mobility, fatigue management, and spasticity management.
If you would like to know more about our upcoming information session by Dr Hawley, please click here.
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 email@example.com 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 firstname.lastname@example.org 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 email@example.com 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.
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.
MS-UK Counsellor Kerry Trevethick shares her words of advice on how to manage the easing of lockdowns across the UK, as the end of restrictions is in sight and how to be kind to yourself during this time.
Across the UK, lockdown is easing and whilst many people can’t wait for restrictions to be eased and be able to socialise with friends and family again, many others may feel anxious or apprehensive about returning to things we haven’t done for a while and our old routines. Lockdown may have been difficult for many reasons but it provided a level of certainty and clarity on the rules and what we were to expect. However the easing of restrictions is less clear cut, and this can be stressful and anxiety provoking.
There are a range of different emotions that you may be experiencing such as:
It’s important to acknowledge that these feelings are valid and reasonable, and just like it may have taken time to adjust to going into the first lockdown, it may take time for us to adjust to life post-lockdown. It is okay if it takes time to adjust to life changing again.
Some people may find it very difficult in making decisions about how to keep safe now, who they should see or avoid, where should they go or not go - this is normal. For a long time, these decisions were made for us. We may feel that the responsibility of this decision making is too much, but you can take things at your own pace and remember there is no rush to get back to your old routines – you can be in control of how fast things move for you but be wary of avoidance as this can help maintain anxiety.
For some people, life post-lockdown will look very different. Maybe you have been bereaved, lost a job or had a relationship breakdown, and it is okay to feel this grief and there are organisations that can help you.
There are things that we can do to help ourselves manage our feelings as lockdown is eased and these are outlined below:
It is a pleasure to be able to put together a series of masterclasses around exercise and education in MS. I spend a lot of time working and educating people around their symptoms and seeing the effects that MS has on their bodies, whether walking, sitting or tasks of daily living. By helping people have better knowledge and understanding about their MS symptoms, it allows people to have more independence and improve their quality of life.
As a Level 4 Exercise Coach for Long term Neurological Conditions, I have been working with people with MS and other neurological conditions for the past nine years and if you have been following our online classes or joined in one of the many information sessions from our fellow professionals, you will be building a wealth of understanding that will help you on a day to day level, reduce symptoms and help maintain a more stable condition.
People with MS experience different symptoms with their condition from muscle weakness, fatigue, spasms, numbness/ tingling, difficulty walking, coordination, balance issues, are just a few symptoms associated with MS. One of the many symptoms I am asked about is foot drop, the inability to lift the toes and flex the foot at the ankle. Many of you may have found yourself walking normally and then after some time your foot starting to drag or catch on the floor, maybe having more trips and falls, a high stepping gait or throwing the leg out to the side when trying to walk.
During the next masterclass, I will address some of these areas and demonstrate some exercises that can be beneficial for foot drop. I will talk about types of equipment that can be used like foot drop stimulators and foot orthosis that assist for the foot drop condition.
The exercises will help to support a better functional capacity and help maintain a more neutral foot position. We will also look at the global effects that it has on the rest of the body when sitting, standing and walking itself.
If you like the sound of this masterclass, please come and join us! To register for the session, please click here. There is a suggested donation of £5, but you can donate any amount from £1 to attend.
Every month, our online masterclasses offer insight to different topics and special areas of interest that have been suggested by participants who attend our exercise classes. The masterclasses complement our weekly online exercise classes which take place every Tuesday and Thursday from 11am. The aim of each masterclass is to focus on a chosen topic area that people have identified as needing to know more about.
The masterclasses are led by Alan Pearson, our level four exercise specialist who has nearly a decade of experience providing exercise prescription as a means of managing the symptoms of multiple sclerosis (MS). Alan structures each masterclasses to first provide the understanding behind the theory of a problem such as foot drop and then demonstrates techniques to help manage the issues experienced through the use of exercise.
Our next masterclass is on Friday 16 April at 11am, which is second in the series of our online masterclasses where we will be focusing on corrective stretching. If you would like to know more about the session or how to register, click here.
See below some of the feedback we have received from our masterclasses that have taken place so far
“I thought the session was nothing less than brilliant. So practical, so reassuring, and so understanding. Alan is amazing.” – Jackie
“Alan's balance masterclass was excellent. I can't tell you how very helpful it is to get these insights into how our brains and bodies work together and the effects that damage can have and how we can work to maintain and improve those links. They are really motivational too.” - Sarah
“It’s so helpful to learn about what’s going on in the brain and body and to understand more about the links between them. It’s obvious that Alan knows his stuff.” - Lisa