Hi, I am Diana and I have been Head of Services at MS-UK for four years now. My role is to oversee the running and development of our local and national services. These include
Earlier this year we also launched our report on Loneliness and Isolation and how the MS community has been affected by this. We are now working towards bringing the recommendations within the report to life by starting to offer online mindfulness courses, developing an online MS community and developing meaningful campaigns that raise awareness about MS. There is a lot to do but we will keep you informed with progress.
I have supported fundraising events in the past and have raised money for MS-UK by completing the Yorkshire Three Peaks a couple of years ago. I also supported my husband and his work colleague last year to complete Prudential Ride London which is the 100 mile bike ride for MS-UK. He also completed the virtual event this year for MS-UK which was a somewhat different experience!
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.
This evening we should have been getting ready for a night to remember at MS-UK’s annual Summer Ball.
It should have been a busy week for the fundraising team assembling prizes donated by many generous donors and businesses for our raffle and auction and getting all the finishing touches ready for a very special evening.
Each year we welcome around 150 lovely supporters for an evening of fine dining, fun and great entertainment in glamorous style at the luxurious Le Talbooth in Dedham, Essex near MS-UK’s home town of Colchester.
Every year, this black-tie event raises thousands of pounds for MS-UK so we can continue our work supporting people affected by multiple sclerosis.
Last June, we raised over £16,000 at our Summer Ball which is enough to fund our national helpline for over six weeks, providing vital information and emotional support to empower anyone that needs it.
Unfortunately, due to the pandemic and like many other events, the ball has been cancelled this year. This is a huge shame for both our guests who are missing a great night out and our fundraising.
If you would like to make a donation to our urgent appeal to help us at this difficult time, we would be most grateful. You can donate at www.justgiving.com/campaign/MS-UKAppeal.
One day we shall go to the ball and we are already looking forward to making the MS-UK Ball the biggest and best ever in 2021.
The date planned for 2021 is Friday 17 September 2021. If you would like to find out more information about the event please contact me on 01206 226500 or email Jill@ms-uk.org
Thank you for your continued support.
Stay safe and well,
MS-UK Fundraising Manager
Our helpline has been busy writing and putting together new publications this year to extend our range of Choices booklets. We asked the multiple sclerosis (MS) community for suggested subjects to write about, subjects that you, people affected by MS, wanted to read about and gain more understanding. Cognition was a popular subject.
Cognitive difficulties are experienced by around 50 per cent of people living with MS. Some will only experience mild, more manageable symptoms, whereas others will experience symptoms to a larger degree.
Speaking about cognition and how it can impact a person and those around them can be a difficult subject to discuss. It can be hard to acknowledge that a person’s cognitive abilities are not as they once were.
We wanted to make it easier to understand the different ways in which cognitive difficulties can impact and to provide a wealth of information on how to manage it including tips from those who currently live with the symptom.
You can download our Cognition 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.
All our Choices booklets are sent to our virtual insights panel (VIP) before publishing to gain feedback from people living with or affected by MS. The feedback we received on the Cognition booklet was very positive and included quotes such as:
‘I cannot express how pleased I am that you have brought this leaflet to my attention. I will be highlighting this to other people with MS.’
‘This leaflet is excellent, I feel very strongly that people do not see MS as having cognitive issues only physical ones.’
‘It will be a useful document for those of us (me included) who have issues with cognition.’
It is really helpful for us to receive this feedback to make sure we are producing what is really needed by the MS community. If you would like to join our panel please sign up here.
We will continue to review our current publications and also write new ones when required. We have another new booklet to be published soon too, all about spasms and spasticity. Keep a check on our website for when that comes. If you have any suggestions for other subjects that we are yet to cover please let us know. Email firstname.lastname@example.org We always welcome suggestions.
Laura & Ryan
MS-UK Helpline Click here to download your free Choices booklet
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.
MS-UK’s Head of Services, Diana Crowe reflects upon its latest report which gives valuable insight into the loneliness and isolation people living with multiple sclerosis can experience
Much of my time last year was spent exploring how people affected by multiple sclerosis (MS) experience loneliness and isolation and my findings are shared in our report that we have published this week. I don’t wish to repeat in this blog what is said in the report but rather reflect on my experiences whilst working on this project.
When I first started to scope out the work I realised that I needed to squirrel myself away at home one day a week to give me the time and space to research and read all of the amazing reports that had already been published and understand the landscape. This was a luxury to have this time (before we were all forced to work at home – thank you COVID-19!) but I soon discovered the irony of working on a project that was making me feel a little lonely and isolated from my colleagues.
As a community-led organisation, the next step was to reach out to the MS community to hear about their lived experiences. I always love this part of my job because it keeps me grounded and drives the passion that I have to really make a difference. We started by conducting an online survey which gave us a really good starting point and enabled us to drill down further into the challenges and barriers that the MS community were facing.
In the late summer, my colleague and I travelled the country on one plane, many trains and automobiles! We were so grateful to the MS Therapy Centres across the UK that opened their doors to us and enabled us to facilitate focus groups. The dynamics were different in each group – one was very emotional as people shared their experiences and tissues were needed and in others, we heard how some people used humour to deal with the challenges they faced. For example, someone pulled up their trouser leg to reveal a catheter bag and exclaimed ‘this is not a fashion accessory you know!’ We conducted telephone interviews with those we could not meet face to face and it was such a privilege to take this time and listen. Many cups of tea and cakes later we had a rich insight that has shaped the next steps you see in this report.
It has been a long time in the making and we had every intention of launching this report back in March but then we were all forced into isolation (thanks again COVID-19!) and we have all faced so many challenges both personally and professionally and it certainly did not seem appropriate at that moment.
However, this week is Loneliness Awareness Week and we felt this was the right time to share our work. This report and the recommendations within, build upon the work we are already doing and gives us a platform to develop new initiatives. This is just the beginning of what I hope will be an ongoing conversation and I encourage organisations to get in touch to talk about how we can build partnerships, learn from each other and keep this conversation alive. Only by working together can we tackle loneliness and isolation in the MS community.
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.
MS-UK is a small national charity dedicated to supporting people affected by multiple sclerosis (MS) to live happier and healthier lives. We have always been proud to be an independent charity that is mainly funded by the support of the MS community. It is through fundraising events and donations that we have been able to run our services all these years. It is the generosity of those that truly understand what life with MS is like, that keeps our essential work going.
However, with all events now cancelled, so much of our income has dried up over-night. And this at a time that those people who were already feeling lonely or isolated, or struggling with their mental health, need us now even more.
Could you do something fun to raise money for MS-UK whilst you are at home? Our fundraising team have been working hard to create some fun ways you can help raise funds for MS-UK and stave off the boredom of lockdown at the same time! From sponsored head shaves and quizzes to an Ice-olation Challenge, gaming marathons and fun with the kids, we’ve got it covered. Check out our Fundraising From Home webpage and choose an activity for you and your family.
Or are you able to make a donation to keep our services open?
Every penny raised, really will make a difference.
Thank you so much for your support, I wish you and your loved ones well.
Amy Woolf, CEO of MS-UK
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
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.