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 firstname.lastname@example.org 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