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 email@example.com 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.
MS-UK was invited to attend a medicinal cannabis event in London on Monday 16 September. The event was set up and facilitated by Medical Choices UK a non-profit medicinal cannabis and education organisation. Its mission is ‘to help bring medicinal cannabis to those who need it by educating those who can prescribe it and lobbying those who can improve access’. MS-UK’s Helpline and Information Officer, Ryan Jones and Head of Services Diana Crowe went along to find out more.
The event gave information on:
Amongst the very knowledgeable and experienced presenters was Dr Julie Moltke who qualified as a Doctor at Copenhagen University of Medicine and studied in both Stockholm and Paris. She has a strong holistic approach, a passion for mental health and is a certified yoga and mindfulness teacher. She has set up an online magazine-style website called ‘dosage’. As part of her work Julie is currently travelling the world and exploring the cannabis industry.
After the event, Ryan said, “One of the things that I took away from Julie’s presentation was to dispel the common myth that Cannabidiol (CBD) is not psychoactive. Julie said that CBD still has an effect on the brain, so is therefore psychoactive, but is best described as ‘non-intoxicating’. That makes a lot of sense and has cleared up a misconception that I held”.
We also heard from a Director of Medical Choices UK Michael Platt who is an anaesthetics and pain medicine specialist based in London. He has been a consultant and honorary senior lecturer in pain medicine and anaesthetics since 1991. He recently became the medical director at Sapphire Medical Clinics, a new clinic for medicinal cannabis. He gave a good round-up of the current evidence and data available relating to medicinal cannabis and spoke passionately about being pleased that he now has another ‘tool’ to treat pain.
Most interestingly, we also heard from Jason Jordan from Perth, Western Australia, who lives with primary progressive MS and is a medicinal cannabis advocate. Jason was the first person in Australia to have been prescribed medicinal cannabis and he described its effect on his quality of life as a ‘game-changer’. He was quite explicit about the fact that he was not a recreational cannabis user and that he had been able to manage his symptoms so much better since receiving his prescription.
Both Diana and Ryan both came away from the event feeling more informed and a little clearer about how medicinal cannabis can be accessed here in the UK.
For more information about cannabis and MS download our Choices leaflet here.
On Sunday I had the privilege of cheering on our amazing #TeamPurple runners at the Simplyhealth Great North Run!
The weather was warm (if a little windy!) as I joined crowds of well over 200,000 people lining the route of the run, right from Newcastle to South Shields. Over the whole weekend around 58,000 people took part in events, from the 5k run through to the Great Tees 10k, but I was there to support the amazing runners taking on the Great North Run in aid of MS-UK.
This was the first year I have travelled North to support #TeamPurple at the Great North Run and I was amazed at the dedication and energy of our runners. It was a brilliant atmosphere and I would like to say a big thank you to everyone who wore our purple running vests with pride.
Every penny raised from this event helps us support even more people across the whole of the UK who may be living with multiple sclerosis (MS). One service we offer is being able to listen to people’s worries and concerns through the MS-UK Helpline and offer lots of information and support at times when it is really needed. Our amazing fundraisers make this possible.
The date for next year is already out – 13 September 2020 – so if you want to join #TeamPurple please get in touch with me to register your interest. I would love to be cheering you across the finish line at this unforgettable event next year!
Events Fundraiser, MS-UK
This week the UK is set to see soaring temperatures, with most places reaching temperatures between 34-35 degrees according to The Met Office. They have also reported that the South East of England could see it rise to an immense 37 degrees. Whilst some may bask in the fact that we’d normally have to pay to experience such hot weather outside of the UK, 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, which is why we are going to give you some top tips on how to keep cool in this weather…
1 ) Wear weather appropriate clothes
Whilst wearing shorts or loose clothing are apparent ways of keeping cool, changing your choice of footwear is a good way to go 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. Switching to some appropriate sandals can help your feet 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 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. Although your own body heat will heat 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.
4) Unplug electrical plugs 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.
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.
This week, 17-21 June 2019, is Loneliness Awareness Week. Introduced by The Marmalade Trust three years ago, the theme aims to remove the stigma around loneliness and combat people feeling this way. In order to do this, we need to encourage people to talk about it more.
Research has found loneliness to be an unpleasant, deeply personal experience and emotionally distressing. Loneliness can be for a longer duration perhaps when a change has occurred, or chronic if it is for more than two years. However, it doesn’t necessarily need to be for an extended period of time, it can be brief or occasional. A 2017 report even found that loneliness was as harmful as smoking 15 cigarettes a day.
Specific research into loneliness and MS has been conducted by the MS Society, which shows that out of 869 respondents, 60% said they felt lonely due to being affected by multiple sclerosis (MS). Unfortunately, this figure is up from an average of 50% of people that are affected by any disability generally. So what can we do to combat this, and how do we strive towards pushing this statistic down?
The MS Society found that 78% of people affected by MS see ‘meeting other people affected by MS’ as the most significant aspect of their local group in reducing feelings of loneliness. Such research suggests that strong local community groups are important to people with MS, so we need to continuously build on this.
Alongside the unique information that The Marmalade Trust produce, they have also assembled an interactive map so everyone can see where community events are happening nationally. This can be a great way to meet new people. To see what events are near you, visit marmaladetrust.org/law/#Interactivemap.
Understandably, not everyone will have events listed in their area. This is where we can help. Our helpline team here at MS-UK are available to talk to you, even if it’s just a chat. We would like to remove the stigma around loneliness, and it’s okay to say ‘I’ve been lonely’. We believe that nobody should face MS alone and our helpline staff are here to support you no matter what the issue is.
In 2018, our helpline supported over a thousand people and you can reach out to us knowing you will receive unbiased and professional support. The MS-UK Helpline is open from 9am-5pm, Monday to Friday. We are available to you on the telephone or online through our live web chat or email – we will support you in a way that’s right for you.
The Marmalade Trust has created a basic guide about what you can do in relation to loneliness, or what you can do for someone who you think is experiencing it. You can find this guide online at marmaladetrust.org/what-we-do/marmalades-3-step-process-to-feeling-less-lonely/.
When we looking at our new strategy, we were told that there was simply not enough support available to the MS community to overcome isolation and loneliness. We are now running a survey to find out more about these issues.
You can share your own thoughts today in our online survey at www.surveymonkey.com/r/MSUKLoneliness.
MS-UK’s Helpline team recently worked with MS-UK’s wellness centre Josephs Court in Essex to run an information session relating to services and support organisations working with people in its local community.
The session was well-received with one attendee saying: ‘I enjoyed the variety of different topics and the speakers. It was informative and gave us the opportunity to meet new people and share experiences.’
The MS-UK Helpline and Josephs Court teams worked together to bring in a range of guest speakers from a variety of organisations to give short presentations on their services, the support they provide and how they can help people with a disability.
The first speaker was Lesley Bysouth, Head of Communications for Motability. Lesley spoke about the fact that since it was set up in 1977, the Motability Scheme has provided over 4.5 million vehicles and has helped millions of disabled people and their families to enjoy the ‘road to freedom’. She let us know that last year they awarded more than 8,000 grants for wheelchair accessible vehicles, driving lessons for disabled people, advance payments for leased vehicles, adaptations, powerchairs and mobility scooters.
To join the Motability scheme, a person must be in receipt of the following benefits:
• Higher Rate Mobility Component of the Disability Living Allowance (DLA)
• Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP)
• War Pensioners’ Mobility Supplement (WPMS)
• Armed Forces Independence Payment (AFIP)
An individual interested in joining the scheme will need to have at least 12 months remaining of their allowance when they apply.
Click here to find out more information about how the Motability scheme works.
Next, we heard from John, a volunteer for Age UK Essex. John spoke passionately about his volunteering role and then spoke about the range of services the local charity has on offer for the over 50s. It was impressive to hear about the full range of services the local charity has to offer. They deliver information and advice, befriending, home help and much more.
Age UK Essex is a charity in its own right but is affiliated to the national organisation Age UK. Age UK has a range of detailed factsheets, a helpline and other services and they support and work with many other local Age UK charities. To find out what is in your area and the support they provide click on this link. You may well find that your local Age UK gives a wide range of options from practical help with welfare benefits and handyman services through to emotional support such as befriending and companionship support.
We then heard from Georgina Delves an Assistant Engagement Officer with Community 360, a Community and Voluntary Services hub organisation working across Colchester, Braintree (with some services in Tendring too!).
Georgina talked about the support the organisation gives to charities and third sector organisations and the services that they directly deliver such as community transport schemes and Shopmobility. Then Georgina let us know about the ‘My Social Prescription’ scheme, this exciting project helps people with a social need connect with local and appropriate community groups, clubs, peer networks and much more. Their skilled and knowledgeable team will help people map out the resources that are in the community and helps people find the right service, in the right place, the first time.
The Kings Fund has written about social prescribing and how it is being adopted up and down the country. There may well be a service in your area. If this is of interest to you, it is likely that either your GP practice or your local Community Voluntary Services hub will know.
After a cup of tea and a biscuit (or two!), we heard from Yvonne and Rosie from Carers First. Carers First is a large organisation working with and for unpaid/family carers across Kent, Essex, Lincolnshire, and some London boroughs. Yvonne and Rosie told us about the local services the organisation delivers and also talked about the rights that unpaid or family carers have to a carers assessment as well as rights in employment. It is almost certain that there will be a carer support organisation working in the area in which you live. Your local council will have information on how to get in contact with them if you are not already.
The next organisation we heard from was from a housing and support organisation that provides floating support or community outreach services. Peabody’s outreach support is a service that will work with people with a ‘housing-related need’ on a short term basis. The service is there for anyone in Essex over the age of 16 who needs support, guidance or advice. They can work with anyone regardless of their housing status, for example currently homeless, living in local authority homes, privately rented properties, as a housing association tenant or an owner or occupier. They can give help to resolve benefit and debt issues, help with problem neighbours, support people to gain skills to live independently and help people feel more confident.
Floating support or housing related outreach services are fairly common up and down the UK, some local authorities only fund it for certain groups of people (for instance people that are homeless or who are under 25 and have a housing need). If you want help to find a similar service in your area. Feel free to contact our MS-UK’s Helpline team and we will happily see if we can help find a relevant service.
The services and groups covered in our information session are just a snapshot of some of the services and support organisations working across the local area to Josephs Court.
Ryan, a Helpline and Information Officer with MS-UK’s Helpline then spoke about ‘filling some of the gaps’ and let the attendees know about just some of the other local options for getting help:
We are sure that there are other services, organisations and volunteer-led groups out in your community, up and down the country and often across the whole UK doing great work and giving the help that you and others need.
If there’s an organisation that you value that you think we should know about, please do get in touch on 0800 783 0518 or email us on firstname.lastname@example.org.
MS-UK will be closed on the bank holiday following this weekend, so just to remind you of the times:
Friday 24 May - open from 9am - 5pm
Monday 27 May - closed
Thank you all and do have a lovely bank holiday!
Best wishes, The MS-UK team
I wanted to invite you to complete our survey which launched today about loneliness and isolation.
Last year we consulted with the MS community to inform the development of our new strategy. The most talked about gap for people affected by multiple sclerosis (MS) across the UK was appropriate support to tackle loneliness and isolation. We were told that there was simply not enough support to overcome the barriers contributing toward their isolation and not enough available to help them feel a part of something, connected to the world and less lonely.
We are now beginning to look at this area and we would like to understand this issue a bit more. The voices of people affected by multiple sclerosis inform all our work and this insight is incredibly valuable as it brings us perspectives that no one else can give. I hope you will take five minutes to complete this short survey and help us stay on course to provide people affected by MS not only with what they want from us, but crucially, how they want it.
The topics of loneliness and isolation can be difficult to deal with at times, so if you would like any support at all please get in touch with our helpline. You can email the helpline, call us on 0800 783 0518 or connect with us online.
Thank you so much for your contribution,
Head of Services
So in today’s blog I’m going to talk about something a little more serious and the topic is dealing with my hair falling out due to the chemotherapy.
At first I will say and as you can see from the video, it was a bit funny and humorous to me. But those are the magic words, “to me” and just me. The bigger picture is obviously that multiple sclerosis (MS) affects twice as many women as it does men, so for every one of me as a man, there are two women. As I was washing my hair this morning in the shower, there was a nice ring of my hair about my feet, which to be honest was something of a surprise and not a terribly pleasant experience. It did leave me with a curious feeling, thinking about other people that may not be approaching this in the same way that I am. I can see that a woman would be very proud of her hair, or a man for that matter, a lot of men can get uppity about losing their hair. Nature takes some men on a biological one-way trip and their hair just falls out anyway regardless of chemotherapy and that’s just life, there are plenty of strapping bald men out there.
I did actually feel my heart sink a little bit when I thought about people who are proud of their hair and spend a lot of money on it. It can define some people. This is not meant to sound like it’s a vanity thing because it just isn’t, but watching my hair falling out as I was washing it this morning left me with a small feeling of dread for myself. What if it doesn’t grow back? Which isn’t too bad, as I used to shave my head all the time anyway. But for those that don’t view this the same way as I do, it must be such a huge heavy heart sinking feeling. I can see how it might feel at this stage of the initial HSCT chemotherapy, almost like a point of no return, the hair is going to go. Writing this, it makes me feel more than a bit solemn when I think about the big picture and the many different people that this will involve.
One of the few things I can think of that may help in this situation is to have a good positive mental attitude. I don’t mean to sound patronising, but it can become such a strong powerful weapon to have in your little arsenal and that is what gets me through. Yeah, the hair is going right now, but just look to the future not so far away. You’re talking six months from now, which is a snap in our lifetimes really and isn’t really that long at all. We would have collectively come through the other side of the chemotherapy, and we shall be growing fresh new baby soft hair, colour back in our cheeks, a spring in our step and no MS.
Another positive view on this was one my wife brought up. She said this is my old MS hair and it’s been removed to make way for my new non-MS hair for the new non-MS me. It’s a very useful sentiment and one I will carry closely with me as I go through each stage of treatment.
No MS is what we need to focus on right here, right now as the collective, going through the chemotherapy to rid ourselves of the MS that we are all battling with. My eyes are firmly fixed on that, and as I have said before I want to run, probably not for the first few weeks or months, but I will run. We the collective MSers now have a way out of the previously never-ending inescapable tunnel that I personally could never see the end of. HSCT is a gift that few are blessed to receive, so losing our hair in the meantime is an insignificantly small price to pay for us to have our lives back, with or without limitations.
Scott has decided that he will shave his beloved beard off to raise money for MS-UK. Anyone who has been following his story will know how much his beard means to him, so if you would like to donate, visit his JustGiving page or Facebook fundraisier.
If you’ve been effected by the topic discussed in this blog, please contact the MS-UK Hepline on 0800 783 0518.