Mindfulness expert Anna Wille shares advice
For more information please visit www.annawille.com
Last week, the government sent letters out to, or in some cases phoned, people in the UK it deems to be most vulnerable and at risk from the coronavirus. The letters call for people in this category to ‘shield’ or self-isolate for 12 weeks, starting from the day they receive it.
This is to protect the most vulnerable people in society.
Many people with multiple sclerosis (MS) will receive the letter, but lots won’t too. That’s because the condition is different for everyone. You are considered to be in the highest risk group if you
Those self-isolating because they have recently taken alemtuzumab or cladribine will only need to do it for the 12 weeks from their infusion.
Those self-isolating for HSCT should ask their medical team about the length of time they need to continue for, as it may now be increased.
All the government’s letters should have reached people by Sunday 29 March. If you think you should have received one but haven’t, and have not been contacted by your GP, call your hospital doctor or GP, or contact them online.
Even if you receive a letter and you don’t think you are in the at-risk group, you still have a right to self-isolate for 12 weeks, and you should do this to protect both yourself and the NHS.
If you are classed as vulnerable and are worried about getting essential supplies, you can register for help here https://www.gov.uk/coronavirus-extremely-vulnerable
Boredom can really set in when we are unable to leave the house or have visitors. Thankfully, there are a few apps which have really come into their own recently, which allow you to communicate with friends and family, learn new things and generally have some fun! Here’s our roundup. You’ll find these on the App Store or Google Play.
Use your time at home to learn a new language - after all, last year there was a study which found learning a second language increases the brain volume of people with multiple sclerosis (MS). Duolingo aims to help you learn the basics of other languages, and the service also has community features that let you connect with other people who are learning the same language you are.
Even if you’re in total isolation you can still have a virtual gathering. It’s been popular with teenagers for a while, and now many adults are discovering virtual hangout app Houseparty. The app enables ‘shared experiences’ - games people can play with each other, or screen-sharing services that allow friends to watch TV together or go on dating apps.
Zoom is an easy-to-use video chat app on which lots of people can join together. It’s free but there is a premium tier too - though you won’t need it. The free version allows groups to chat for up to 40 minutes, but you can just redial and get another 40 minutes immediately.
This app lets you connect remotely to your friends and have fun back and forth. Choose something to draw and watch while they try and guess what it is you’re penning. It’ll make the time pass quicker.
Musée du Louvre Official App
Have you always wanted to explore the Louvre in Paris? Those plans have to go on hold for now, but you can access the beautiful artworks from the comfort of your own home with your smartphone. The museum’s official app will show you the paintings and you can learn about their history to enrich your mind.
Are there any apps that you’ve found useful? Let us know so we can share them with everyone!
We’ve put together a roundup of websites you might find helpful at the moment.
Our wellness coaches have produced a series of easy-to-follow videos and uploaded them to our YouTube channel. Why not try a few out? You’ll find them here.
Many people with multiple sclerosis (MS) that are taking disease modifying therapies (DMTs) may be concerned that because some medication affects how the immune system functions, they should stop taking it as it might make them more at risk of contracting the coronavirus COVID-19. Professor Giovannoni, an experienced neurologist who specialises in MS and who currently works in the National Health Service (NHS) in England, has shared his opinion on this in detail here sites.google.com/giovannoni.net/clinicspeak-dmt/home
The MS Society has regularly updated information on MS and COVID-19, including the opinions of various neurologists on DMTs. Find it here www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifying-therapies/covid-19-coronavirus-and-ms
The NHS’s Every Mind Matters website has practical advice on mental health, including how to look after yours while you have to stay at home, and steps you can take to manage any anxiety you may feel about COVID-19. Find it here www.nhs.uk/oneyou/every-mind-matters/
Following the outbreak of COVID-19 across the globe, digital charity and peer support network for people living with MS Shift.ms has launched a 1-2-1 video service for those in isolation. ‘Co-vid Companion’ aims to reduce the isolation and loneliness that can exist during a pandemic by connecting people with MS (MSers) who are self-isolating or experiencing heightened levels of loneliness due to coronavirus. Find it here shift.ms/category/healthy-living/coronavirus
My MS Gym is a movement and mind-set training resource and community for people with MS. You will find lots of safe exercises to do while you are at home www.themsgym.com/
I wanted to let you know that MS-UK staff are now working remotely to ensure that we can keep as many of our services available to support people living with multiple sclerosis (MS) as possible.
Due to a high volume of calls, responses from our helpline service may be delayed. However, if there is no one available to take your call please leave information about your query, email address and telephone number and a Helpline Information Officer will get back to you as soon as possible. Please note that it is likely that we will be able to respond to emails faster than telephone messages and that you may receive responses outside of office hours. To contact the MS-UK Helpline email email@example.com or call 0800 783 0518.
The MS-UK Counselling service will continue to run as normal and is unaffected. To register for MS-UK Counselling visit www.ms-uk.org/counselling.
If you attend Josephs Court, we will be ensuring you hear from us regularly and have created some exercise videos to support your activity at home. You can find them on our YouTube channel.
We appreciate your support and wish you all well during this challenging time.
Amy Woolf, CEO of MS-UK
Allergy UK is calling for people to consider the needs of people with food allergies and avoid stockpiling Free From products. At MS-UK, we received a call from a lady with multiple sclerosis (MS) who was worried she would soon not have anything at all to eat. ‘I’m away from home at the moment visiting my son who is in a care home,’ she said. ‘I have various stomach issues and when I’m unwell all I can manage are two Alpro yoghurts per day – that’s what keeps me alive. But there is only one Tesco where I live, and it is a 25-mile round trip to get to. I will have to go every day, and only be allowed three each time, that’s if they have any.
‘I feel like people with severe allergies should be able to buy more than three, because we are so limited on what we can actually eat.
Allergy UK, the leading charity for people living with allergies, says it is appealing to shoppers to think about those that require the “free-from” produce to feed their families.
For those who are elderly, vulnerable, or work for the NHS, supermarkets have created special allocate shopping hours. They are as follows:
8-9am every Monday, Wednesday and Friday reserved for NHS and social care workers alongside elderly and vulnerable customers.
NHS hour 7am-8am every day but not on Sundays. Must show NHS ID.
No special hours for the elderly.
Prioritised a one-hour slot for elderly and vulnerable every Monday, Wednesday and Friday at 9am in all stores except smaller Express shops.
NHS staff can visit large stores one hour before the usual opening time every Sunday.
Prioritising NHS workers and elderly in larger stores every Monday, Wednesday and Friday from 8-9am.
OAPs. The first hour every Monday and Thursday.
NHS and emergency service workers. First hour each Tuesday and Friday.
On Friday, it launched a protected shopping period for the elderly and vulnerable at every store which will take place during the first opening hour.
The first hour of trading – Priority hours for elderly and vulnerable people.
The final hour of trading - NHS staff only, ID must be shown.
We hope you are keeping well during this difficult time. As we are sure you are all aware, by now you should all be self-isolating and minimising your social interactions. We know how important it is for people living with multiple sclerosis (MS) to exercise, it can keep you MS at bay, help you maintain your mobility and it's also good for our mental health. Which is why our wellness coaches from Josephs Court have put together several accessible exercise and mobility routines which can all be done from the comfort of your own home!
All of the videos are available on our Youtube channel www.youtube.com/ms-uk so give them a try and let us know what you think! Is there something else you would like to see? Let us know and we can create more great content just for you.
If you are having any specific mobility issues or would like advice from our wellness coaches on exercise and mobility, please do not hesitate to send us a message on our Josephs Court Facebook page.
Enjoy and stay safe,
Click the images below for links to each exercise video
This week, the government has released further advice and is sending letters out to 1.5 million people in England deemed most vulnerable due to health conditions.
This is known as ‘shielding’ and people who fall into this category will need to self-isolate for at least 12 weeks from today.
The most vulnerable
It’s possible some people with multiple sclerosis (MS) will fall into this category if they are taking disease modifying therapies, as included in the category is ‘People on immunosuppression therapies sufficient to significantly increase risk of infection.’
The government say the following people are most at risk from COVID-19 and must follow the measures -
1. Solid organ transplant recipients
2. People with specific cancers
• people with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
• people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
• people having immunotherapy or other continuing antibody treatments for cancer
• people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
• people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
4. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
5. People on immunosuppression therapies sufficient to significantly increase risk of infection.
6. Women who are pregnant with significant heart disease, congenital or acquired.
The NHS in England is directly contacting people with these conditions to provide further advice.
If you think you fall into one of the categories of extremely vulnerable people listed above and you have not received a letter by Sunday 29 March 2020 or been contacted by your GP, you should discuss your concerns with your GP or hospital clinician.
Visits from people who provide essential support should continue, but carers and care workers must stay away if they have any of the symptoms of coronavirus. Here is government guidance on home care provision. All people coming to your home should wash their hands with soap and water for at least 20 seconds on arrival to your house and often whilst they are there.
MS-UK Counsellor Kerry Trevethick offers her advice
With COVID-19 continuing to spread, the Government has started to implement social distancing. This means increasing our distance from others including avoiding social places such as pubs, theatres and gatherings, avoiding unnecessary travelling and working from home where possible. For people living with multiple sclerosis (MS) and some groups of people, the advice is that they should self-isolate and stay at home for up to 12 weeks.
Whilst these measures are supposed to protect the most vulnerable in our society and slow down the spread of the virus, they can have a detrimental impact on our mental and emotional wellbeing. Below are some tips that may help you manage your mental health during this difficult time.
Try to spend some time in nature. The advice is, you are currently able to go for a walk if you keep a safe distance from other people. If you are unable to do this then try to get outside – spending time in the garden or on a balcony can be helpful. If this isn’t possible try sitting by an open window and watching the birds and trees.
Mindful activities such as colouring in, guided meditation and puzzles, for example, can help you manage anxiety. There are several apps that can help with this such as subscription apps like Calm and Headspace along with some free apps such as Elefriends and What’s Up? All can be found on the app store on your phone or tablet device.
Limit the amount of time you are reading or watching the news. You may also need to limit your use of social media, as there are lots of negative stories at the moment which may make you feel more anxious.
Keep to a routine. It may be tempting to sit in your pyjamas all day if you are not going out, but a routine can be important for our mental health. This includes regular meal times, setting up a structure for working and getting up and going to bed at healthy times to ensure you are getting enough sleep, along with finding some time for leisure. It is important that you also do enough in the day to stimulate yourself rather than using the time to lie in bed or sleep.
It may be tempting to spend more time in front of a screen, be that the computer, TV, phone or tablet. Make sure you are doing other things such as reading, listening to podcasts, arts and crafts, baking, or doing your favourite hobby.
Keep connected. Just because you are self-isolating, this doesn’t mean that you have to cut yourself off from everybody. Keep connected with your friends and family via phone, email, video call or social media.
Talk about your feelings, anxieties, worries or concerns with friends or family members. If this isn’t possible then try using a helpline such as the Samaritans on 116 123. If you have any worries about how this may impact your MS then call the MS-UK Helpline free on 0800 783 0518 or think about accessing the counselling service.
Lots of people in communities are offering help at the moment, be that going to the shop for you, or for a friendly phone call – if you need the support, please use it, you are not a burden.
Try to maintain a healthy diet and keep as physically active as possible.
Remember that these measures are just temporary, they will pass, and it is important to look after yourself both physically and emotionally at this time.
You may have seen the PMs announcement last night updating measures in response to the coronavirus (COVID-19). You can find the latest information here. Please take note of the changes regarding self-isolation.
For the first time, multiple sclerosis (MS) is listed as one of the long term health conditions where people are considered to be especially vulnerable. You can find their information about social distancing here.
Due to these measures, whilst some staff are working from home, our national services are continuing to operate unless you hear from us otherwise.
If you need information or emotional support please call the MS-UK Helpline free on 0800 783 0518. The Helpline team have also produced a coronavirus frequently asked questions blog, which you can read by clicking here.
To register for MS-UK Counselling, visit www.ms-uk.org/counselling.
We are taking all the required precautions at our Essex-based wellness centre, Josephs Court. Many of our clients have currently decided that they still wish to attend and therefore, we have taken the decision to cancel our social activities but remain open for people with MS to exercise at this time.
I wish you all well during this challenging time.
Amy Woolf, CEO of MS-UK
The MS-UK Helpline team have been working really hard to answer all of your questions around how coronavirus will affect your multiple sclerosis (MS). Here are some of your frequently asked questions answered.
I’m taking a disease-modifying drug for my MS, does this leave my immune system compromised?
The answer to this question depends on which MS drug you are taking. Some will leave you with a weakened immune system and others won’t. The MS Society published some useful guidance on which drugs leave you most susceptible. Click here to read more. For more information about coronavirus and disease-modifying therapies in MS the Association of British Neurologists (ABN) has also released some guidance.
I have MS but do not take any immunosuppressant drugs, how will coronavirus affect me?
For the first time yesterday, the PM announced that people with MS should be practising social distancing. Social distancing encourages those that can to work from home, avoid large public gatherings and public transport, and avoid anyone displaying symptoms. Click here for more information.
Someone in my house is living with multiple sclerosis. What can I do to protect them?
You can also practise social distancing with them to reduce your chances of contracting the virus and bringing it home. Taking it one step further, the person living with MS in your house could self isolate in one room away from the rest of the household to further limit their chances of contracting the virus. Click here to see the guidance on social distancing and self-isolation.
For the latest information on coronavirus, visit www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response.
Last night the government updated advice on the coronavirus situation in the UK. Here is what you need to know.
Anyone who has a new and persistent cough or a high temperature is being asked to self-isolate at home for seven days. It’s possible that these are mild symptoms of coronavirus and you do not need to ring 111 for advice unless your condition dramatically worsens.
Testing for COVID-19 is no longer happening for people in isolation, only in hospitals.
Schools have been advised to cancel planned trips abroad, and people aged over 70 and those with pre-existing health conditions have been told not to go on cruises.
Government advisors are working on the assumption that the peak of infection might not arrive in Britain for up to three months’ time.
It’s thought that stricter self-isolation guidelines could come into place soon, such as if one household member becomes ill, everyone living with them may be asked to stay home for 14 days.
It’s also thought that more social contact advice will come into play as the epidemic reaches its peak, with the elderly and those with pre-existing health conditions told to stay at home and cut social contact for protection.
How to self-isolate
Public Health England has given the following advice for anyone who needs to self-isolate
I’m still going!
This week will be my 18th swim which means I will have swum a third of my target, whoo hoo! That will be 1,080 lengths which is 27km. Lucy in our fundraising team has just informed me that is almost 17 miles.
I swim every week at Clacton Leisure Centre and the distance from the pool to our office in Colchester is just under 15 miles. I am amazed that I have swum further than that. It puts it into perspective for me that’s for sure.
I looked up distances for even more perspective and it appears that The Strait of Dover, which is the narrowest part of the English Channel, is 33.3km / 20.7 miles. Looks as though I am almost there then!
I must admit the last few weeks have been really difficult to stay motivated. I thought the winter months would be hard but wow it’s actually become a chore to get out of the house and go. I’ve had a knee problem that made swimming quite uncomfortable. I mostly swim breaststroke so I found it was aggravating it. Last week I tried to swim more front crawl which I do not find easy at all but my knee is much improved now anyway.
So far I have raised £325 which is great. I didn’t set a target as my swim is more of a personal challenge for me, than a fundraiser. I am delighted I have raised that much though and hope I can raise a bit more too as I still have several more lengths to go.
I’ll keep you posted.
If you would like to donate to Laura's fundrasing challenge then you can do so here https://justgiving.com/fundraising/80kmfor80yrs
As Kate Collins gears up for the Virgin Money London Marathon she shares why she is running and how she has reached her fundraising target!
‘Runnin’,’ by Naughty Boy ft. Beyoncé seems to be the soundtrack to describe my life right now! I am currently in the midst of training for the Virgin Money London Marathon 2020 and boy do my family and friends sure know it! All my daily chats now involve running-related topics such as; routes, ailments and the weather!
I started running from an early age, from runs in the park with my Dad and dog, representing the County a couple of times during secondary school for cross country, to running various amateur 10k and half marathon races. I have never been the best runner but I’ve always lived by the mantra ‘it’s the taking part that counts!’
My friends didn’t have much of interest in the sport when I was growing up and didn’t share my love of longingly watching the Virgin Money London Marathon take place wishing I was in and amongst the thousands of runners. What was once a dream is soon going to become a reality (hopefully!).
For the past three years, I have tried and failed at gaining a place for the London Marathon and swore this year would be my last time entering. I decided to try my chances at gaining a place through a charity this year and to my amazement, it worked!
As a teenager, I always said if I was ever lucky enough to run the Virgin Money London Marathon I would raise money for a multiple sclerosis (MS) charity. For over 25 years now my Mum has lived with MS. She does not allow this diagnosis to consume her life nor does she allow it to dictate what she can and cannot do. Instead, she tackles daily challenges with sheer determination and never uses her diagnosis as ‘an excuse.’ Her outlook on life is extremely positive and now, as a retired teacher, she continues to help others through volunteer work.
My Dad has been a constant rock from the time of diagnosis for my Mum and as a family, we would be lost without him. But alongside this Mum has received an unfathomable amount of support from NHS health care professionals, in particular MS nurses. Without support from these highly trained and skilled professionals, my Mum’s quality of life would not be what it is today. And so, running the Virgin Money London Marathon 2020 is my way of saying, “thank you” to all health care professionals who support and care for people living with MS.
I am currently in the 6th week of training for the marathon and it’s starting to hurt! Fortunately, I am extremely lucky to be running the marathon alongside my best friend who is also running for a charity that supports her mum. Having a training partner shares the load psychologically – if only it would also physically! The cold, stormy and dark nights and mornings do not entice us to train but we constantly keep reminding each other the reason why we are running and that’s all the determination we need.
Ironically, although training is hard, I am finding fundraising harder! Naturally, I am not an outspoken person and I try to blend into the background. This is the first time I am raising money for a charity solely on my own. At first, I completely shied away from the concept of having to ask people for money, hoping I would one day just open up my JustGiving page and there would miraculously be money donated into it without me having to ask anybody!
Initially, I just advertised my Just Giving with one post on my social media accounts (Facebook and Instagram), and I couldn’t believe how many donations came flooding in within the first couple of days. I was completely overwhelmed at how generous people were being just by adding a link to my pages but this also gave me the confidence boost needed to actually do some fundraising.
The first ‘event’ I held was a tea and coffee stall at my brother’s football team – ‘Dale Park Girls.’ This proved very popular on a very cold Saturday morning and is something I shall be doing again in the future. After that, I held a boot sale – being a complete novice I was not prepared for the early bargain hunters but once they heard I was donating all funds to MS-UK they were more generous with their offerings!
The following fundraising events I have undertaken I cannot take credit for as these have been organised by close friends and family of mine. They have all been unique in how they have helped me to raise money, from Father Christmas collecting donations for me in a café, a quiz night in a local pub and donation collecting at local pubs and clubs. Again, it is so amazing the love and support I have been given by friends and family and their wanting to help me raise money for MS-UK is incredible.
I still need to reach my target of £2,000 but I am not far off. I have a few more ideas up my sleeve such as holding a ‘colour run’ event at the school I work in and a possible football tournament. I’ll also give tea and coffee stall and a boot sale a go again – once the weather fairs up!
Never underestimate the power of social media though, for fundraising, this is the ultimate tool to connect you to people. As I am running with my friend we decided to document our training on Instagram (@sole_mate_runners). To document our journey but also connect with other runners and like-minded people. This page has only been up for a couple of weeks, however, we have both already received donations on out pages through it.
I’d like to take this opportunity to thank MS-UK for giving me a place on their team – it is the ultimate runner's prize running the Virgin Money London Marathon and it is something I am not taking for granted. It will be an absolute honour wearing purple on the day to represent #TeamPurple and what a coincidence purple is my favourite colour! Good luck fellow runners and fundraisers!
If you would like to donate to Kate’s JustGiving page, visit www.justgiving.com/fundraising/kate-collins16.
We’re crowdfunding to help improve the mental health of people living with multiple sclerosis (MS).
In 2017, we launched the only national telephone counselling for people with MS, and have delivered more than 2,000 sessions to more than 300 people. But with your donation, we can help even more people who are living with MS improve their mental health by providing video counselling. Our crowdfunding campaign is now live, click here to support us! https://www.avivacommunityfund.co.uk/ms-uk-counselling
We want to run a six-month trial of video counselling to help people with MS live happier, healthier lives. The MS community told us that while they find our telephone counselling very helpful, for some people, being able to talk to their counsellor would be even more beneficial as they would be able to maintain eye contact and read body language.
Here’s just some of the feedback we’ve had from people who have accessed our counselling service:
‘Counselling has helped me realise that it is okay to share my fears and worries with my partner. Being able to do this with you first really helped.’
This is an all-or-nothing campaign. If we don’t reach our target, we get nothing, your pledge will be refunded by Crowdfunder and this pilot will be delayed. It's a risky move but it's the best way to prove we have your support.
How else can I help?
If you've already donated (thanks!) or can't donate just now, there are other ways to support...
Tell the World
If you love our idea please tell friends, family and anyone else you know!
Sharing is Caring
Every share on social media can raise around £20 so please share and help us reach our goal. A personal message will often lead to a donation!
If you write or blog we'd love it if you wrote about our project. If you have any questions do get in touch. Please share what you write with us and tag us online – we are @MultipleSclerosisUK on Facebook, @MSUK6 on Twitter and multiplesclerosis_uk on Instagram.
How will I get an update down the line?
Please sign up to our MS-UK fundraisers e-newsletter here