On Wednesday 17 February 2021 we celebrated Random Acts of Kindness Day. To commemorate the day, we asked the multiple sclerosis (MS) community to share your stories. Here's what you said...
'This random act of kindness took place long before the pandemic - 40 years ago - but due to my MS and memory loss - I now experience this random act of kindness of the event through old photos I found while cleaning for lack of anything else to do during this pandemic. It sounds like a sad story but had a happy ending due to a wonderful doctor who cared.
'My wedding was all planned but my mother was was very ill and the doctor cared - he told us how much it meant to her and us for her to be there and helped us move up the wedding to the hospital chapel and all was arranged - even had music!
'Mom was there, all dressed up, guests too - doctor came too - dressed up - Mom died 10 days later. I am still married 40 years later to my hero...and trying to pass kindness forward.'
'After a long day in London, I used the Underground to catch my connection north. I had to change lines at some point, and the distance between stations was much greater than I’d anticipated. The further I walked, the more bent my posture became, until I was literally using the surface of walls to help me keep upright.
'I was passed by hundreds of racing commuters, possibly thinking I was drunk. I staggered on for a few more yards, following signs for the lift. When it appeared out of order however, I simply gave up, and slumped to the floor, wearing my best suit. Again, I was passed by many people, and at this stage I was feeling like a well-dressed busker and tearful!
'Amazingly, a man returned carrying drinks and a cupcake from Costa. To give me the refreshments, he must have passed me, exited the underground station, entered a Costa store to buy the items, and then retraced his steps, going against the walking traffic. I thanked him profusely after initially refusing his offer, and asked for his details in order that I could thank him properly. He refused, left me with the refreshments, and quickly disappeared again. I was speechless.'
'As two of my family members lived and died with MS prior to my diagnosis, I was well aware of their management techniques. Following my diagnosis, I declared instantly to doctors and nurses in the hospital that I was going on a diet avoiding saturated fats and milk.
'One day, all the patients were given their breakfasts of cheese sandwiches on the morning of my kindness day - so I left mine untouched and went back to sleep. Upon waking up, I saw a thick salami sandwich on my bed stand - although the kitchen did not have any dietary replacements that day.
'Other patients told me that a night nurse left me with her meal before going home. She did not wake me up, but left me her meal after a night 12 hour shift looking after patients. At the time, I was the only one at the ward being able to slowly wash myself and go to toilet. All other patients needed non stop care through the night and day. She must have been exhausted, hungry and not in a mood to "cure" MS by avoidance of cheese! Still, she decided that morning to be kind, supportive and selfless - saying nothing in the process.
'I will never forget such kindness in my time of sudden schock...please join me in wishing every blessing to "my" nurse.'
Thank you to everyone who shared your positive stories with us for the day and tuned in to our Facebook Live event.
You can find out more about why we celebrate kindness by visiting our Loneliness and Isolation Report webpage.
To commemorate Random Acts of Kindness Day 2021, we have designed a pack of postcards to help spread kindness far and wide.
In 2019, we began to research the issues of loneliness and isolation in the multiple sclerosis (MS) community. We found that 71 per cent of people affected by MS in the UK experience these issues, or have done in the past.
Our findings from this research also told us that the MS community believes in the power of kindness and friendship, and we should be sharing this message widely. So, whenever we have a chance to do this, we will!
There are many organisations in the world promoting kindness. Here are some we have found - do let us know if you think of any more we can add, just contact us with your suggestions...
The Government has published new advice for the clinically extremely vulnerable for keeping safe in the new lockdown which came into play at 12am today.
If you are in this group, you will previously have received a letter from the NHS or from your GP telling you this. You may have been advised to shield in the past.
If you are clinically extremely vulnerable, you are strongly advised to stay at home at all times except for exercising and doctors’ appointments. You are strongly advised not to go to any shops or to pharmacies.
You are encouraged to ask a friend, family member, carer or a volunteer (for example, one of the NHS Volunteer Responders) to collect your medicines for you. If none of these are available, contact your pharmacy to inform them you are clinically extremely vulnerable and need your medicines delivered. They will arrange this free of charge.
You should continue to seek support from the NHS and other health providers for your existing health conditions and any new health concerns.
You can access a range of NHS services from home, including ordering repeat prescriptions or contacting your health professional through an online consultation. To find out more, visit NHS Health at Home or download the NHS App. If you have an urgent medical need, call NHS 111 or, for a medical emergency, dial 999.
Any carers or visitors who support you, or a child or young person in your care, with everyday needs, can continue to visit. They should follow social distancing guidance where close or personal contact is not required.
You should also continue to access support from local charities, organisations and NHS Volunteer Responders. As well as helping with shopping and medicines delivery, NHS Volunteer Responders can help with a regular, friendly phone call and transport to and from medical appointments.
Call 0808 196 3646 between 8am and 8pm to arrange support or visit NHS Volunteer Responders.
Try to keep all contact with others to a minimum and avoid busy areas. Whenever you go out, continue to maintain strict social distancing, wash your hands regularly and avoid touching your face.
You should also try to stay two metres away from other people within your household, especially if they display symptoms of the virus or have been advised to self-isolate.
You can exercise with those you live with or in your support bubble. If you cannot work from home, you should not attend work. You may be eligible for statutory sick pay, employment and support allowance, universal credit or the coronavirus job retention scheme during this period of national measures.
The formal shielding notification you receive may act as evidence for your employer or the Department for Work and Pensions (DWP) that you are advised to follow shielding guidance and should not work outside of your home for the period stated in the letter.
If you were on payroll before 30 October 2020, you may also be eligible for the Coronavirus Job Retention Scheme (on furlough), which is being extended until 2 December. Speak to your employer if you think you are eligible.
Other people you live with who are not clinically extremely vulnerable themselves can still attend work if they cannot work from home, in line with the wider rules set out in the new national restrictions from 5 November.
People who are defined as clinically extremely vulnerable are at very high risk of severe illness from COVID-19. There are two ways you may be identified as clinically extremely vulnerable:
You have one or more of the conditions listed below, or
Your hospital clinician or GP has added you to the Shielded patients list because, based on their clinical judgement, they deem you to be at higher risk of serious illness if you catch the virus.
If you do not fall into either of these categories and have not been informed that you are on the Shielded patients list, follow the new national restrictions from 5 November.
If you think there are good clinical reasons why you should be added to the Shielded Patient List, discuss your concerns with your GP or hospital clinician.
Adults with the following conditions are automatically deemed clinically extremely vulnerable
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.
I write to you today with some very difficult news. MS-UK has been significantly affected by the Covid-19 pandemic. The team have worked incredibly hard to offset the huge reduction in our fundraising income this year while adapting our service delivery to ensure no one is left to face multiple sclerosis (MS) alone. As a result, we have seen a significant rise in the demand for digital services, but our prospects for 2021 look set to be even more challenging.
Given the impact that the pandemic has had, and will continue to have on fundraising events and our economy generally, and therefore all our income streams, it is unlikely that we will have the funds to continue to operate in our current form beyond next year.
We also recognise that the pandemic has accelerated the digital agenda and presents us with many opportunities to support even more people affected by MS than ever before.
We felt it was only right to review our strategy to ensure that despite the adversity MS-UK is facing we can stay true to our values and continue to support as many people affected by MS as possible in their time of need.
However, this has led us to make some very tough decisions to ensure we can still be here in the future. After long and careful consideration it brings me great sadness to tell you that the board of trustees and management team at MS-UK have made the very difficult decision that we will no longer offer face-to-face services. This means that we will be closing our wellness centre, Josephs Court. We do not wish to leave our clients unsupported, who we know will be as upset by this news as we are, so we will be working with our clients to establish how we can best support them through a transition period to online services.
We remain committed to supporting people affected by MS both nationally and locally. We will work with the MS-UK steering group to explore how we can not only continue the remote services that we have provided since the pandemic began but also how we can expand our online services so that, in time, we may offer a wider range of digital services to provide holistic support to even more people affected by MS than ever before.
We know that Covid-19 isn’t going to go away overnight and the country will be dealing with the repercussions for months and even years to come. The road ahead is uncertain and we will continue to consider every available opportunity with the best interests of the charity and the people we support at heart.
I hope you are all keeping safe and well. I'm writing to you today to update you on the progress of our urgent appeal. Thank you to everyone who has already contributed, your donations will help ensure we can continue to support people affected by multiple sclerosis (MS). MS-UK saw a 44% increase in calls to our helpline in the first month of lockdown alone, with the MS community searching for essential information and emotional support. We have also seen a surge in demand for our counselling service, so it is clear to us that our community needs us, but like many other charities, we are facing very uncertain times. With fundraising events cancelled we estimate a loss of £300,000 as a direct result of COVID-19 in 2020 alone.
Our recently published Loneliness and Isolation report revealed that before COVID-19, 71% of people living with or affected by MS in the UK experience loneliness and isolation, or have done in the past. We knew all too well just how damaging this pandemic could be to our community, so we quickly found ways to adapt our services to maintain the essential support our clients need from us on very little or no income to ensure no one has to face MS alone. Our clients have seen the value and truly appreciate these new ways of receiving support, like our online accessible exercise classes and coffee mornings, but we need your donations to ensure we can continue to be here for those who need us most now and in the future.
Living with MS can be isolating enough without having to deal with the complications a pandemic brings and as the country begins to emerge from lockdown, for people living with MS life could become even more complexed. They will have many more questions, such as is it safe to return to work, can I socialise with my family, should I take my MS drugs, and our helpline team will seek out the best information and resources available so they can make informed decisions about how they too can return to ‘normal’ life.
The pandemic is not over and there are more uncertain times ahead, but together, with your help, we can ensure people living with MS emerge from lockdown safely and with the right support. It costs £2,520 to run the national MS-UK Helpline for just one week and a single counselling session for someone struggling with their mental health costs £50, so any donation you can make, big or small, will help us sustain our all-important services. To make a donation visit www.justgiving.com/campaign/MS-UKAppeal, text URGENT5, URGENT10 or URGENT20 to 70456 to donate £5, £10 or £20, or you can send a cheque to FREEPOST MS-UK.
Early summer so far has seen some glorius weather so far but, whilst some may bask in the fact that we’d normally have to pay to go on holiday to get this heat, others may have feelings on the opposite end of the spectrum. People who are affected by multiple sclerosis (MS) have widely differing symptoms when it comes to heat sensitivity. Here are some tips to help you in the hot weather.
1 ) Think about your clothing
Whilst wearing shorts or loose clothing are obvious ways of keeping cool, changing your choice of footwear ican make a big difference, too. Wearing trainers or closed-off shoes can affect your whole body in hot weather, as there are lots of pulse points around your feet and ankles. Liberate your feet with appropriate sandals to help them breathe, or alternatively, dunking your feet in some cool water when you take off your shoes to cool off!
2) Chilling your sheets before bed
Despite being only a short-term solution, chilling your sheets in a sealed bag in the fridge for a couple of hours before you go to sleep can help you feel cooler, or try the freezer for faster results. Although your own body heat will warm up the sheets fairly quickly, it can help your body cool in that period, which in turn could help you drift off to sleep easier.
3) While you’re out of the house, close your curtains
When you leave your curtains open, it allows sunlight to come through and essentially heat the area like a greenhouse. When closed, the curtains will prevent this greenhouse effect beyond your window sill and keep your house much cooler. It can make a huge difference, especially if your house faces the sun.
4) Unplug electricals that aren’t in use
Plug sockets that are filled with electronics that you aren’t using will generate more heat. If the plugs become too hot, especially in a heatwave, it increases the chance of a fire hazard as well. So it may be a good idea to lose the unnecessary electricals at this time of year!
5) Invest in Kool-Ties or Cooling Vests
Kool-Ties are simply something you tie around your neck, can work for up to three days, and cool the whole body through cooling your neck. Cooling Vests have special cooling crystals incorporated into the material which are soaked in cold water, then can hold the temperature for a substantial period of time. You can even get versions for dogs!
Other ways to help keep cool in this hot weather can be taking regular cold drinks and wrapping a cold damp towel around your neck.
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
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.
Every year at MS-UK we get into the Christmas spirit with a team lunch and Secret Santa. It's a great time to come together and reflect on the past year.
This year we decided at MS-UK to do something in our local community too - so we organised a food bank donation. Over the weeks tins and essentials kept piling up beside my desk and I kept thinking, this must be it? But no, our lovely staff kept giving and I was absolutely thrilled to be able to deliver 36.2 kilograms of items to our local foodbank in Colchester earlier this week!
Over 90% of the food distributed by foodbanks in The Trussell Trust network is donated by the public – everyone referred to them is offered a balanced and nutritious three day supply of food.
You can find out more about them on their website. When I went along to drop off our donation the staff were really helpful and were thrilled we had pulled together to do something in our area!
A big thank you to all the staff at MS-UK for getting involved - hopefully we have begun a new tradition!