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 email@example.com 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 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
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.
Diana Crowe, MS-UK's Head of Services, met locally with H Goodwin, Suzanne Howe and Amy Melton from United in Kind, an organisation which is aiming to put an end to loneliness in our communities. It was great to share with each other about the work we have been doing.
There are eleven United in Kind coaches in total whose roles are to connect communities through kindness to reduce loneliness and social isolation.
It was interesting to hear how the coaches are building relationships across Essex with hundreds of community, charity and voluntary groups to reconnect communities.
The organisation needs everyone in the community to come together, so if you know of any community activities that might be of interest to others in your area, please share by sending an email to email@example.com. Local coaches can also help set up activities in your area. To find out more about your local coach go to www.unitedinkind.org.
You can follow United in Kind’s activity on social media using the hashtag #UnitedinKind and by visiting www.facebook.com/unitedinkind, www.twitter.com/unitedinkind and www.instagram.com/unitedinkind.
I just wanted to let you know our opening hours for the festive period as we get closer to the mince pies!
Tuesday 24 December - Open 9am to 1pm
Wednesday 25 December to Wednesday 01 January - Closed
Thursday 02 January - Open from 9am
If you attend our wellness centre in Essex, Josephs Court, we will also be opening for a couple of days so you can continue your exercises throughout the festive period. Josephs Court will be open from 9am to 1pm on Friday 27 December and Monday 30 December.
During the holidays, you can always contact our helpline team and we will respond in the New Year when we return.
If you would like to speak to someone before then, the Samaritans are open 24/7 and you can contact them in a variety of ways. You can visit the Samaritans website or call them on 116 123.
Wishing you a merry time if you are celebrating Christmas and a very happy New Year from all the teams here at MS-UK!
Head of Services
MS-UK is celebrating this week after achieving a Trusted Charity Mark award recognising the excellent work it does in the third sector across the UK.
We were awarded the highly respected status after being recognised for effective governance and management by the National Council of Voluntary Organisations (NCVO).
Trusted Charity is part of the National Council for Voluntary Organisations (NCVO) and is the only UK quality standard designed to help third sector organisations operate more effectively and efficiently. We were assessed against the 11 standards of effective practice in Trusted Charity, including in governance, leadership and management, managing staff and volunteers and managing money, and proved to meet all standards.
‘We are delighted to receive recognition for the hard work we put into running MS-UK. Good governance and management is essential to maintain the high standards we have set at our charity and we owe it to people affected by multiple sclerosis (MS) and our supporters to ensure these are maintained so we are here for many more years to come,’ says MS-UK CEO, Amy Woolf.
MS-UK is a national charity that supports many of the 130,000 people affected by multiple sclerosis (MS) in the UK, that's one in every 500. We are here for anyone affected by MS, to empower them to live healthier and happier lives. We aim to improve the understanding of the condition and providing support where it is needed most. We offer a number of supportive services, such as MS-UK Counselling, the MS-UK Helpline, its magazine New Pathways and its Essex-based wellness centre, Josephs Court.
Nadeem Razvi, Trusted Charity Programme Manager, NCVO said, “We are delighted for the trustees, staff and volunteers of MS-UK that they have achieved the Trusted Charity Mark. We know that organisations using the Trusted Charity standard have better governance, better systems and procedures and better quality of services for their users and it is great that the community of Trusted Charity users in England/Wales/Scotland/Ireland is growing”.