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
For Carers Week, Laura and Ryan from MS-UK’s Helpline explain what support is available for you
The theme of Carers Week this year is making caring visible. So often carers go about their day and others would not even realise what they carry on their shoulders. They may be out doing the shopping, yet worrying about the person at home they care for, all too often not thinking about themselves. Carers often don’t even identify with the label of being a ‘carer’.
It is so important that the role of the carer is recognised and also that they know where to go for support. We want carers to know there are organisations they can call when they need to chat or ask questions, there are support groups (online and in the community) that are just for them and there are people and organisations out there that care for carers.
Our Helpline would like to let all carers know they can call us when they need to. We are here for you, as well as the person living with multiple sclerosis (MS). We can provide an understanding listening ear, be at the end of the telephone or source you supportive information.
The kind of information we have sourced for carers has been things like
The role of an unpaid carer can be complex and we can help to work through issues at your pace, signposting to more specific organisations where it’s needed.
Our Helpline can be contacted by our freephone number 0800 783 0518, or via email and webchat.
Other great organisations who support carers are
The Carers Trust help to raise awareness of unpaid carers in the UK. You can use their website to search for carer services in your area.
Carers UK offer advice, information and support trough an expert telephone advice and support service. They help connect people through carers’ groups
Please get in touch, we are here if you need us.
Laura and Ryan
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.
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.
We have received some calls to our helpline about the recent news of COVID-19 and concerns about the impact it may have for people with multiple sclerosis (MS).
There is limited information and advice available specifically relating to MS. If you have MS, the risk of developing the virus is the same as the general population. This risk is currently considered low in the UK.
Generally, this virus can cause more severe symptoms in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease. Having MS does not mean your immune system is weakened.
However, some disease modifying drugs supress the immune system. These include Lemtrada, Ocrevus, Tysabri, Mavenclad and Gilenya. A side effect of these drugs is increased risk of infection.
Professor Gavin Giovannoni has written a blog post for the Barts MS blog which talks about the risk factors of these drugs in more detail. You can read more here:
As with other health issues, such as flu, cold, bladder infection, or any other viral issues, you can have a temporary worsening of your MS symptoms. Symptoms will likely settle down once you have recovered from the infection/virus.
Any concerns, we would suggest speaking with your MS team. As things stand it is not being recommended to stop and DMT treatment – always speak to a health professional in the first instance.
To avoid catching or spreading the virus, the advice from the NHS is as follows:
If you would like to chat through any concerns our helpline is available Monday to Friday, 9am – 5pm. Call 0800 783 0518.
The Helpline team
MS-UK Counsellor Rachel Murray reflects on the uncertainty of living with multiple sclerosis
We travel through life with varying degrees of and awareness of uncertainty. We like it when we feel certain - it feels safe - and we don’t like the anxiety and fear that uncertainty can bring – for many of us it feels scary and unsafe.
A diagnosis of multiple sclerosis (MS) and living with MS increases the uncertainty experience! Symptoms can be unpredictable and may or may not be connected to MS. Never knowing when a relapse may come along can be daunting, uncertainty about treatment options and their uncertain long and short term effects, uncertainty about MS in workplaces, MS in family life, and MS in the future. All of these are thought about through the lens of uncertainty and may frighten and worry us.
Living with uncertainty as a constant companion can be exhausting and frightening but what if the lens is changed so that uncertainty is viewed as an adventure, as a path we did not expect to be on but as we are… then let’s see what’s around the next corner and make the most of the journey anyway. What if uncertainty becomes openness with curiosity and a willingness to see what unfolds. What if we start to welcome and embrace uncertainty because it opens up a different experience and viewpoint?
What if you meet the challenge of processing and experiencing the journey with MS by choosing the lens of adventure and curiosity over the lens of uncertainty? You may find yourself being surprised along the way.
“Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious ambiguity.” — Gilda Radner
To find out more about MS-UK Counselling or sign up, visit www.ms-uk.org/counselling.
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
The MS-UK Helpline regularly receives calls from the multiple sclerosis (MS) community with questions about working with MS. Here’s some useful information and resources which could help answer some commonly asked questions.
Here are some of the frequently asked questions we receive
We will do our best to try to cover these issues in this blog.
When it comes to work and employment issues MS is a protected characteristic under the Equality Act (2010). This means that employers must make reasonable adjustments for disabled workers which will enable them to stay in their job. It is important to note however that employers are not required to change the basic nature of the role. The Equality Act includes people with MS from the point of diagnosis even though they may not see themselves as disabled.
Reasonable adjustments could include:
To gain this kind of support and get a reasonable adjustment to your working practices you would need to communicate with your employer about your MS and explain how it is affecting your ability to fulfil your role. This will help your employer to understand what it means for you as an individual. It is suggested that even if you have a good relationship with your employer that you put this in writing to them.
It may well be that you could get the help of an occupational therapist who can look into barriers at work and make suggestions as to how to get past them. For example, this may involve rearranging a workspace, getting some assistive equipment or specialist software. In some areas, they may be able to visit your workplace. Your MS nurse will be able to refer to an occupational therapist through the NHS.
Occupational health services are offered by some employers. The occupational health professional will discuss and assess any adjustments needed to the workplace or working arrangements. They will also make recommendations after their assessment. If you feel that this would be useful for you, it would be worth having a conversation with Human Resources (HR) staff for the organisation you work for. HR and occupational health can help you and your employer to work together to understand the impact of MS and any adjustments needed. HR professionals will also help your employer to understand their legal responsibilities towards you as an employee with a disability.
Reasonable adjustments must be bespoke and tailored to each individual, and it must be said that for some roles unfortunately there are very little adjustments that can be made. If this is the case and working becomes too much of a challenge, it is a good idea that you seek specialist employment or legal advice.
The MS-UK Helpline is here for you if you need someone to talk to about work and MS, or anything else. Our team is available 9am - 5pm Monday - Friday through our freephone line on 0800 783 0518, email on firstname.lastname@example.org or through webchat.
Part two of this blog coming soon – Organisations that support working with MS.
When it comes to exercise and multiple sclerosis (MS) we know exercise has been shown to improve the overall health outcomes for people with MS. However for people living with MS there are often many barriers to adopting a well-planned bespoke exercise programme with an emphasis on health and wellness.
One area that the MS-UK Helpline often offer support is mapping out where people can go to find supported or assisted exercise in their community that will understand MS or have experience of supporting people with long term conditions.
There are around 60 MS Therapy Centres in the UK. All are independent charities and offer a variety of different types of exercise and physiotherapy. The common theme across all of the centres is ‘self-help is our way of action’. Many of the larger centres may have support groups, MS nurse clinics, counselling and benefits advice. Some of the smaller centres will likely be volunteer led, only be open a couple of days a week and only offer limited services.
From looking at what kind of exercise support is available we have seen examples ranging from gym work to hydrotherapy, from yoga to Pilates, from chair aerobics to specialised power assisted exercise equipment. The centres also offer various other therapies, some of which include oxygen therapy, massage and reflexology. If you have a therapy centre near you, it is worth seeing what services they provide.
The therapy centres are a great resource but there are many areas that do not have a centre and where options are few and far between.
What if there is no centre nearby, or you don’t really know what you are looking for, and maybe feel that a general gym isn’t quite enough? To find a gym instructor with a good understanding of MS or knowledge of exercises suitable for people with a long term condition can be tricky.
Having an assisted exercise and bespoke tailored program to suit your needs can make the whole experience much easier. Having something designed specifically for you can help to ensure that exercise will be maintained and you can stick to it over time. This can, therefore, help maintain ability, develop stamina and instil more confidence.
If there is no MS therapy centre near you there may be other options. There are some MS specific organisations that are not therapy centres that offer physio and exercise support. The MS Research and Relief Fund are based in the North East of England and offer a wide range of physiotherapy and fitness support from one to one sessions, seated exercise, exercise bikes, Pilates, classes and a vibrogym. They offer outreach across the region to enable as much accessibility as is possible.
MS-UK has a wellness centre Josephs Court in Colchester. The centre is open six days a week with some evening availability too. There is a range of specialist neurological rehabilitation equipment and power assisted exercise options, as well as items that you would expect to see in a more traditional exercise and physiotherapy environment. The centre also offers pain management services (APS therapy) complementary therapies, physiotherapy and social activities.
The MS Society and the majority of its local branches will offer some kind of activity and exercise options. They also have an ‘MS Physical Activity Specialist’ service who can be contacted via their helpline service. The MS Physical Activity Specialist can help find accessible activities in the area, complete an assessment of your needs, create an action plan and offer ongoing support over a 12 month period.
If you were wanting to exercise at home or at your local gym and were wanting to follow a programme developed by someone with a good understanding of MS, it may well be worth looking into connecting with Dom Thorpe. Dom is a specialist coach working with people with a disability. He has specialist programmes for people with MS called the MS warrior training programme and the MS custom fit programme. His services are chargeable. He does also have a Facebook group called ‘Multiple Sclerosis (MS) Fitness & Exercise Motivation with Dom Thorpe’. In this group, Dom and the members of the group share tips and give peer support to each other to help with exercise goals. Dom also has a series of YouTube videos which may be useful for you. He has worked in partnership with the MS Society to develop a programme that may well support you with work outs at home.
Mbodies Training Academy is an education provider specialising in Continued Professional Development (CPD) education for Physiotherapists, fitness focused medical professionals, Pilates Instructors and advanced fitness professionals. Mbodies have training and qualifications titled ‘Understanding Multiple Sclerosis for Exercise Professionals’, ‘Exercise for MS Specialist’, ‘Pilates for Multiple Sclerosis Specialist’, ‘Pilates for Neurological Conditions’, and ‘Exercises for Neurological Conditions’. The Mbodies website has a search for an instructor function to help you find a qualified professional near you.
We have now published part two of this blog. If there are any options that we have missed, please do drop us a line or call 0800 783 0518. We always listen to people affected by MS and it will inform the work of Helpline in future.