On Friday 21 June we held our annual MS-UK Summer Ball with the theme of a Midsummer Night. Our games, entertainment from The Lisa Graham Duo, alongside our sensational auction and raffle produced donations that we couldn’t be more grateful for, truly signifying how much a success the night was.
We managed to raise a staggering £17,010! This will go so far in helping us support even more people affected by multiple sclerosis (MS), thank you so much to everyone who attended!
Over 140 of you came along, fromour trustees, clients, marathon runners, volunteers, networking groups to our community champions. We kick-started the night with an entertaining quiz, the heads and tails game that was themed appropriately with summer themed questions, of course.
Following some entertainment, the auction was on its way. With an outstanding ten prizes on offer generously donated by various companies and people, there was a lot to bid for. From an Anthony Joshua signed glove, a spa break for two at Champneys, Six Nations 2020 tickets to a private BBQ for 20 guests, there was huge variety! Similarly, our raffle prizes had the wow-factor to match. From the three course dinner for two, a Bose portable speaker, to the family portrait photo shoot, there was a lot to play for.
Certainly the prizes were astounding but the reason everyone attended was for a much more heart-warming reason. It was to help us raise thousands of pounds so we can be here now and in the future. With the support of so many amazing people at events like this, we are able to offer our vital services to more people living with MS.
Gregg Rice, an attendee of our Summer Ball said ‘I like to support MS-UK as my partner is affected by MS. I’ve run two marathons as I’ve felt it’s important to support what MS-UK do. Again, this was another fantastic night raising money for such a worthwhile charity, and I’ve felt truly humbled by the atmosphere there’.
We would like to warmly thank all those that donated prizes for our raffle and auction and to all those that attended to bid for them. You made it a very magical evening.
See you next year!
Jill Purcell, Fundraising Manager
In 2013 my lovely mother got diagnosed with multiple sclerosis (MS). When we got the news of course we were devastated, not knowing much about the condition apart from the fact it was “incurable “ through medication and put her in a lot of pain, we just all did what we could to support her but for years I have felt helpless. She decided not to tell anyone but her close friends and family of the condition she was living with...why you ask?
My mum is one of the most strong, independent, driven and successful women you will ever come across. In 1999 she was awarded the Ernst & Young trophy winning Young Entrepreneur of the Year. From 1992 - 2012 she owned a very successful business expanding world wide in over twenty countries and for years she was on the panel of the DSA and was well respected in the industry she was in. Sadly, I believe because of all of this she put pressure on herself to portray this strong business women, I think she thought people would take pity on her or think she couldn’t get the job done if she came clean that she had MS. So instead she suffered in silence, for a few years she was CEO of a large network marketing business which was an extremely high pressured job and to get her through the pain day to day she would take morphine based pills which again is something none of her colleagues knew about.
In 2017 my mother found herself heading up Europe for one of the largest essential oils company in the world doTERRA, here again she would be working 70 hour weeks, another high pressured role but this time she would be taking over 100 flights a year around Europe. Anyone that has MS will know that one of the biggest struggles is tiredness, so it won’t come as a shock to you when I tell you that she was exhausted. But this time something was different, as she was now part of this essential oil business she discovered natural medicine and in time found the perfect essential oils to support her immune system and pain relief and now to this day is morphine free.
In June 2018, even though my mum was at her healthiest, her strongest, pain free and our “happy mum”, I still felt I needed to do something to help her and others with MS and also families that have lost loved ones through MS. I took the plunge and decided to apply to run the Virgin Money London Marathon 2019 to raise money for MS-UK. They help people and families through some of the darkest times. This journey has been incredible - I have not just been able to raise over £2,000 but I have also learnt so much about myself too, I feel so proud to be a part of it all and to have run for such a good cause with an amazing charity.
Last month my mum told me that I had given her the strength to tell the world what she had been hiding for years, she told her colleagues and thousands of people who work alongside her, friends she had not seen for years that she has had MS for over 6 years. People where stunned, some sad, some happy because her story had also helped them, but most of all no one took pity on her!
So my 'WHY' is my mum, I ran for her, for the strength she has shown, for never giving up, for still pursuing her career even though at times it was nearly impossible to get out of bed let alone run a business, for now helping so many other people with MS find a natural solution that works with them, for having the strength to tell everyone that she will fight and lastly for being the best mum I could wish for!
Applications are now open for MS-UK #TeamPurple places in the Virgin Money London Marathon 2020!
Far from being a substitute for therapy, mental health apps have gained a place in today’s culture of wanting help here and now. They are often seen as an adjunct to counselling and an introduction or a ‘step in the right direction’. People with multiple sclerosis (MS) can experience a range of issues and may not be ready to engage with counselling, but still require a level of help, here is where apps can come into their own. We asked MS-UK Counsellor Louise Willis for some of the best tried and tested apps on the market.
Possibly one of the most popular apps for mindfulness. It offers 10 free sessions that you can use over and over. If you wish to continue and progress with your mindfulness practice there is a one-year membership for £70, giving you access to hundreds of themed, guided meditations and mindfulness exercises although they often have price reduction offers.
A great free app from Mind, the mental health charity. This app features a ‘news feed’ style interactive main page where you can comment, read, or share your own thoughts and feelings with other like-minded users. There is also a private message facility.
This free app is chock full of tools to enable you to manage anxiety and calm an anxious mind and body, as well as objective help and advice on subjects such as anger, depression, self-esteem and stress. There is also an area to keep track of moods and new habits as you make them.
‘Check in with yourself’ with this comprehensive app from Oz, which enables you to track your mood along with hundreds of targeted mindfulness practices for young and old alike. Oh yes, and it’s free!
If interacting with humans is not your thing, MyPossibleSelf might be for you. Bloopy the assistant bot guides you through a free, and rather in depth eight week cognitive behavioral therapy based course. MyPossibleSelf offers the potential to help you work through your issues in the format of a text conversation.
This AI driven app has the option to subscribe and unlock a wealth of personalised mindfulness exercises. From improving mood to lessening anxiety, Aura’s narrators have a dignified sense of calm and the app has an outstanding amount of choice in the paid version.
Another great mindfulness app which you can access both paid and unpaid. A vast amount of exercises and options to choose from for all levels of ability. There is also a handy sound setting option where you can adjust the background volume or turn it off if you prefer.
This app is aimed at Young adults, older teens or anyone new to managing their anxiety. Using a comprehensive mix of CBT tools and interventions to retrain the mind, there is also a space to log the new changes and to do behavioural and mind ‘experiments’.
Endorsed by the NHS, this free app promises to be a helpfully concise addition to the mental health app scene. It gives the user the opportunity to log their mood, check the mood and ultimately change their mood. There are options for depression, anxiety, anger, relaxation, confusion and happiness using CBT.
Action For Happiness
If you can’t commit to either the investment of time or cash, Action For Happiness may be for you. It offers a ‘newsfeed’ of positive affirmations, memes and scientifically proven small daily tasks to improve your mood and sense of well being. There is also a ‘comment’ section under each post to share your successes with other users!
A very gentle free app for everyone. The app focuses on a game in which you navigate a panda around a virtual world. The app uses your phone's camera to take your heart rate, and with both breathing and yoga stretching and gentle exercise, this simple app really does live up to its name.
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.
Men experience MS differently to women. Here we take a look at those differences
Most of the information available about multiple sclerosis (MS) makes a point of telling us that more women than men are affected by the condition. Statistics claim that MS is at least two to three times more common in women than in men and more recent studies have suggested that the female to male ratio may be as high as 4:1, as the number of women diagnosed with MS increases. But how does the predominantly female related condition affect men?
Ageing with MS
Let’s start by looking at how men with MS age. In a Canadian study of 743 men and women, both sexes were found to have similar average age, years of education, years since MS diagnosis and level of disability. The study said that men were less likely to live alone or have additional health problems, however, older men with MS had a lower perception of their health. They didn’t cope as well with setbacks, rated lower in the participation of household activities such as housework, they were less likely to socialise outside of the home and they also had a poorer diet. Researchers suggested men’s struggle to cope as they grow older with MS could be due to the loss of work. Work brings routine and a reason to socialise with other people on a daily basis. The ratio of male to female respondents for this study was 166:577 respectively, the fact that so few men responded confirms the findings of this study but also isn’t necessarily a fair representation because there were so few responses from men.
MS can affect mental health in a number of ways. Struggling to deal with the diagnosis, and changes in condition or symptoms can all have an impact. A survey commissioned by the Mental Health Foundation and published back in 2016 found that not only are men far less likely than women to seek professional support, they are also less likely to disclose a mental health problem to friends and family.
In a study that looked at how depression, high blood pressure and other chronic conditions may be common at MS diagnosis, men with MS had disproportionately higher levels of depression and anxiety than women with MS.
However, research shows that men are less likely to disclose or seek help with mental health issues. For MSers the first port of call should be their MS nurse. They are experienced in dealing with all MS related issues and can make referrals to get the help and support needed.
Fertility and sex
Though men with MS might experience physical difficulties surrounding sex, studies have shown that the count and quality of sperm are not affected, which means MS will not have a negative impact on an unborn child. However, sexual problems, such as the inability to sustain an erection or delayed ejaculation can have a significant impact on a sexual relationship and the ability to start a family. But fear not, there are some solutions. The biggest barrier is talking about it. Don’t be shy about discussing it with your GP or MS nurse, they understand the importance of the matter and will be able to recommend treatment options. There are a few drugs that can help with erection problems for example.
MS Clinical Nurse Practitioner Miranda Olding says: “Men with MS qualify for the medications Viagra, Cialis, Levitra and Spedra on the NHS, and if they are not suitable, ask to be referred to the local erectile dysfunction clinic, where different options like implants, creams, injections and vacuum pumps can be discussed. Pumps can also be bought privately and work well for many men.”
There are currently no drugs to help with ejaculation issues, “the NHS Choices website mentions that Baclofen can cause delayed ejaculation and that amantadine, bupropion and yohimbine are suggested when this problem is caused by selective serotonin reuptake inhibitors (SSRIs),” explains Miranda. “Pseudoephedrine has also shown promise but hasn't been licensed for this use. Interestingly, amantadine is also used for fatigue in MS.”
A lot can also be said for taking the pressure off, relaxing and just having a good time. Try not to focus on what can’t be done and focus more on what can, especially for your partner.
Men have around 10 times more testosterone in their blood than women. It is a hormone which affects sexual development. Both males and females produce the hormone, but those levels fluctuate throughout life. Before puberty testosterone levels in males are low and they start to increase during puberty, levels peak at around the age of 40 and then slowly start to decrease as they age. This is also a similar age that many men are diagnosed with MS, which may or may not be a coincidence. More research is needed to conclude these findings, but one small study of 10 men with relapsing remitting MS, who applied 100mg testosterone gel to the tops of their arms, once a day, for 12 months showed an improvement in cognitive performance and slowing brain atrophy. However, this didn’t change the number or quality of lesions on MRI.
Progressive MS in Men
Studies have shown that when it comes to primary progressive multiple sclerosis (PPMS) the ratio of men to women evens up. In the largest study of hundreds of men and women with PPMS, which spanned decades, researchers found that equal numbers of men and women had the condition under the age of 30. Fewer men than women were diagnosed with PPMS over the age of 50, but usually, symptoms were worse in men than women. However, other studies have shown that symptoms were just as severe and got worse just as fast for men as for women.
More investigation into how men and women are affected by MS is needed in order to personalise both treatment and MS management.
This extract was taken from issue 110 of New Pathways magazine, your MS magazine of choice. To subscribe click here.
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.
Hi, my name is Melissa. I first heard about multiple sclerosis (MS) ten or so years ago now, when my Aunty was diagnosed with the condition. We were all a bit shocked as not many of us had ever heard of MS or what it does to someone. My Aunty was a hard worker, she was the manager of the local JJB soccer dome as it was known then. She would bike to work every day and always had time to go have fun on a Saturday night in town. It was here where my mum and Aunty started noticing my Aunty Cathy get very wobbly after having just one drink. They would make jokes, saying, “you been drinking before you come out?” They couldn’t understand why she kept falling on the floor after only a couple of drinks, so my aunty decided she would go to the doctors. This is when they did many tests and found out she had MS.
So for many years my Aunty has done incredibly well with her MS, she has a couple of remissions, and took poorly but she’s always stayed strong. Over the past 5/6 years things have deteriorated and she is reliant on her wheelchair and help from others. It just upset me so much to see her suffering like this. I always tell people of my Aunty because she has one witty sense of humour and anyone who knows her always has a good laugh. But what I noticed when I would tell people she had MS was that not many people knew what it was.
This is where I decided I was going to do something about that, and started looking into ways I could spread awareness and raise funds for MS-UK. It all started with the idea of doing a skydive, something I have always loved the idea of. So I signed up to do a jump for the charity, which is where I was put into contact with the lovely Lucy at MS-UK. We both discussed about doing the jump and setting my JustGiving page up, and how I can use social media to help reach people and spread the word.
Then I started getting other ideas of how I could help, so Lucy kindly sent me out some buckets and kitty boxes. I got into contact with my local Tesco extra and we booked a date to go in and do a bucket collection. We raised £76.65, which was just incredible. I put the kitty boxes in my local shop and my aunty's pub.
It then struck me, with having three daughters how fun would it be to do a fundraising fun day for all the family. So I have set about organising a fun day. I’ve acquired plenty of prizes to be won on the day with beauty treatments, free meals, free bottles of prosecco. Family days out, photography family shoot, cinema tickets and cakes just to name a few. I secured a venue just down the road from where I live and I started thinking what I could do on the day to make it even more fun.
I got in contact with a bouncy castle company and managed to secure a rodeo bull and bouncy castle for the day. What child doesn’t love a bouncy castle and what adult wouldn’t be able to resist having a go on the rodeo bull? I just thought what an incredible way to attract people to the fundraising event and to help raise more funds.
The local magazine company came and interview me and published a story in May's edition. Which was fantastic news, because now people who aren’t on social media got all the info about the event.
I’m still emailing and phoning plenty of different companies to require some amazing prizes to give out on the day, and I’m looking forward to my sky dive on 01 September 2019.
For anyone within the Manchester area the details for the event are: Sunday 21 July 2019, 1pm-5pm. At the club house in Irlam. (Formly boysnope golf course). Adults £3pp. Children aged 1 and up £1.50pp.
If you would like to challenge yourself to a Skydive or would like to discuss any other fundraising ideas please contact Lucy by email or call on 01206 226500.
If you care for someone and you don’t know where to start, here’s what you need to know
Caring can be both physically and emotionally hard work, so if you’re a carer it is important to find out the different ways you can get help and support for yourself.
One way to get help and support is through an assessment by your local authority social services. Both you and the person you care for can get an assessment, which may result in help and support for both of you.
No matter what your level of need, the amount of care you provide or your financial means you can request an assessment. Your carer’s assessment should cover:
Once you’ve been assessed your local authorities will make a decision on whether you’re eligible for support. This support can be provided to you or the person you’re caring for.
If you are a carer who appears to have a need for support you should be offered a carer’s assessment of the person you are looking after, which will also be conducted by your local authority.
The support you receive may be provided by your local authority, or in some cases may be a financial award paid via a direct payment. This could then pay for a gym membership, help with housework and gardening, driving lessons or taxi fares to name a few.
Whether your local authority will pay for any support will depend on your financial situation. This is because some, but not all local authority do charge for carer support. It will also depend on the financial situation of the person you are looking after and if services are provided to them.
If you find you are not eligible for support, your local authority still has an obligation to provide you with information and advice on local services that may be helpful and could prevent your needs from developing further.
If you are in the position to, you could hire additional help and support for the person you are looking after. You could employ an individual or use a care provider, such as a care agency. Your local authority may have a list of trusted or approved providers. Alternatively, you can use the Care Quality Commission website (www.cqc.org.uk).
Another resource, which can be helpful is the Which? Elderly Care directory (www.which.co.uk/elderly-care/care-services-directory).
Also, you could find out if you have a local carers organisation, and if so what support they offer to carers in your area by visiting www.carersuk.org/localsupport.
Carers Week runs from 10-16 June 2019. For more information, visit www.carersweek.org or call the MS-UK Helpline (free) on 0800 783 0518.
Hello, my name is James and I have been a volunteer for MS-UK for about two months working in various departments in their office.
I had been looking for ways to develop my office skills and gain office experience, and I saw on MS-UK’s website that a way to do this was to volunteer in their offices and support them behind the scenes. I realised that this would be a great opportunity for me so I contacted them immediately. Within a week of filling in an application form, I was contacted by them and asked to come in to do a day’s voluntary administration work in the communications department, where I carried out a variety of tasks such as data entry and posting and packaging. Subsequently, I volunteered in the helpline department to help pack Choices leaflets into envelopes and send them out. Now I am volunteering one day a week in the fundraising department, monitoring Facebook donations and thanking donors for their contributions.
I feel that MS-UK has really helped me develop my office skills. They have excellent staff and have given me lots of support along the way. I can’t thank them enough for all the opportunities they are giving me and I’d encourage anyone to get involved where they can.
Click here for more information about volunteering
This week is national Volunteers' Week and we are celebrating by saying a big thank you to our amazing volunteers. Last year over 130 people volunteered with MS-UK in all sorts of ways. Together you donated 500 hours of time to MS-UK and helped us be here for people affected by multiple sclerosis (MS). We literally couldn't do it without you, thank you!
This year we have lots of opportunities to get involved. You could join our fantastic cheer squad and support our fundraisers to make it over the finish line at a national event. Or you could come into our offices in Essex and get stuck in behind the scenes. We are also currently looking for volunteer counsellors to help us offer telephone counselling to more people who may need it across the UK.
Whatever you decide to do, we'll be here every step of the way to support you. You can share your skills and develop new ones, gain some experience working with a national charity and we provide you with a full induction and ongoing support.
In the mean time, you can find out more about Volunteers' Week across the country on the NCVO website. If you already support MS-UK, don't forget to download our Twibbon to show the world you are part of #TeamPurple.
Best wishes and happy volunteering!
Sarah Wright, General Manager