Skip to main content

Take our annual survey today!

Posted on: March 01 2018

Hello,

vlm-e-news-image1-11.jpgEvery year we run our annual survey, asking you to tell us a bit about yourself. Last year hundreds of you took part – thank you!

We run this survey every year so that we can make sure we are always providing services that really meet the needs of people affected by multiple sclerosis, and so that we ensure we are reaching as many different people as possible that want information or support.

In the survey we’ll be asking questions all about you – from how old you are to what MS-UK services you may have used in the past. Everything is completely anonymous, and we won’t be asking you for any contact details at all.

 

button-survey-webpage.png

Thank you so much for taking part!

Best wishes,

Laura

Laura May, Marketing Manager

Guest blog: Overcoming MS, a personal journey

Posted on: December 08 2017

jamie_before_after_smnew.jpg
Jamie before and after

In this guest blog, Jamie Macpherson gives a personal account of how the ‘Overcoming Multiple Sclerosis’ program has helped with his multiple sclerosis (MS) and his life...

 

My story is an interesting one as both I and my Mother have MS, six years and twenty nine years respectively. My mother is now considered secondary progressive and confined to a wheelchair currently. I, despite been diagnosed with the label MS, consider myself the healthiest I've ever been and intend to be for the rest of my life.

Before the introduction of internet and more recently the findings and practice of George Jelinek there wouldn’t have been much help for my mother as there wasn’t even many options for disease modifying drugs. So this will have led my mother to only be able to try methods such as the oxygen chamber therapy or the will of God.

So as my Mother, Jeanette, slowly declined in health, I for a period of time became her run-around whilst my father Peter worked to keep a roof over our heads. All this time I’m doing this I am smoking, eating poor food, no exercise and unknowingly to me becoming ill with each day of this poor lifestyle whilst thinking ‘I’m wonderful because I’m helping my Mum!’

When I had my first episode of MS the pain was very hard to describe and something I would not like to go through again. Obviously I had all the tests MRI etc. and the confirmation by the neurologist was MS and his words were ‘go away and see how it progresses’ (lovely thank you very much)!

The state of my body at that time, other than having MS, included weighing 22 stone, a BMI of 38, waist size 42 and more importantly really low self-esteem and depressive thoughts daily.

What did I do? Well despite having a loving caring family of partner and two young children 13 and 9, I lost the plot and left home and sat for a time feeling very sorry for myself and my position in life.

Then one day I visited my Mum and she had a magazine delivered called New Pathways, which had a reference to a guy called George Jelinek, who had written a book called ‘Overcoming Multiple Sclerosis’, so I ordered the book and couldn’t believe the similarities that both he and I had had, Mothers with MS, and then sadly for George his mother passed away. Well this book gave me hope, a chance and an opportunity to maybe, just maybe, get out of this position and make something of my life.

I attended the seminar that George and his team held in Brighton in 2013 and was completely amazed at all the people that had been following the seven step program and how well they were doing.

rainbow4_0.jpgSix years later my life is the best it has been ever. I now weigh 15 stone, my waist size 34, BMI around 18 my thoughts are of ‘what can I do today to help people like me?’How have I got here? Obviously the OMS program is a must and I follow as best I can daily. Other things I have implemented include, acupuncture once every two weeks with a fantastic lady, Gisela Conclaves, in Heywood Rainbow clinic, I only eat foods to my blood group, I take high doses of Vitamin D3 and daily flaxseed oil with Herbalife breakfast nutritional shake. More recently I have been trying the virtually no side-effects drug Low Dose Naltrexone which has been a real help in fighting the dreaded fatigue which I no longer suffer from.

 

Above all these I tell myself ‘Every day in every way I get fitter and stronger.’

Jamie

Find out about the Overcoming Multiple Sclerosis program on their website.

Improving accessibility to the helpline

Posted on: August 23 2017

interp-1.pngOur helpline not only attracts people from the UK, but we also chat with many people from overseas via our live webchat facility. This is great, as it allows those in different time zones to contact us if they need to talk.

Another service that complements this nicely is our telephone interpretation service.

This service is not just available for those contacting us from overseas, but for those based within the UK, whose English is limited.

Whilst using the interpretation service, in order to communicate with clients we use a values led, non-for-profit business. This covers over 100 languages, all interpreters are fully qualified and based in the UK.

All interpreters are experienced in working with sensitive issues and all have Disclosure and Barring Service clearance. This gives another layer of protection to our clients.

So, how does our telephone interpretation service work?

The service is straight forward and simple. Once contact has been made with the MS-UK Helpline, all we need to know is your

  • Name
  • Contact number
  • Specified language

We will then make contact with an interpreter who will get back to you as soon as possible. You will then be connected to a three way conversation between yourself, the interpreter and a member of our helpline who will give you the support you need.

Laura Amiss-Smith
Helpline Supervisor

Carers Week: 'You know you’re not the first person to go through this, but it can feel that way'

Posted on: June 14 2017

As part of Carers Week Mark gives his account of caring for his wife, Portia with multiple sclerosis...

mark_brightburn_sm.jpgPortia and I met at university, where we were studying architecture and landscape architecture. We were married in 1998 – around the same time Portia was diagnosed with MS.

You can’t anticipate what a progressive condition such as MS will be like. It’s different for everyone. We have had long periods of managing fairly well – including having our three children who are now aged 15, 12 and 10 years old.

There have also been periods of relapse. Day to day you don’t really notice the changes, but you look back over the years and can see how the condition has developed. 2014 was a particularly bad year, Portia spent a lot of time in hospital and we had the shock of finding out she had also developed epilepsy. It was a steep learning curve.

I’m an architect, and while my workplace has been very good at supporting me there have been difficult, uncertain times – especially when I’ve had to have unplanned time off while Portia has been in hospital. You know you’re not the first person to go through this, but it can feel that way.

Last year I set up a Carers’ Network at work which now has 150 members – including people who are caring now or have in the past, as well as people preparing for what could happen in the future. The best thing has been the opportunity to share our experiences and pool our knowledge. There’s always someone you can ask ‘How did you find this?’, ‘What can I do in this situation?’.

Portia and I are a great team, and we’ve always found a way round any challenge we’ve been faced with. Portia loves learning and is currently part way through an Open University course in Psychology and is training as an Art Therapist. MS may make the practicalities more difficult, but it doesn’t stop you living your life.

Celebrate Carers Week
This week is Carers Week. The annual awareness campaign celebrates and recognise the vital contribution made by the UK’s 6.5 million unpaid carers. The aim is to build carer friendly communities, places where carers are supported to look after their loved ones well, while being recognised as individuals with needs of their own.

Carers Week is a time of intensive local activity with thousands of events planned for carers across the UK. If you’re looking after someone, make sure you find out about the help and support available at www.carersuk.org.

For more information on providing care and getting the right support, read our 2-page feature in issue 103 of New Pathways magazine.

Guest Blog: Why I’m running the British 10K 2017

Posted on: June 13 2017

In this guest blog, Gemma tells us why she is running the British 10K 2017 for MS-UK...

gemma-and-family2.jpgHi my name is Gemma, and I’m going to be taking part in the British 10K 2017 for MS-UK.

In April 2005 I met James. From the moment we met we just clicked as if we had known each other for years. There and then I knew I had met my best friend and the one I wanted to spend the rest of my life with and we have been together ever since.

In December 2006 I finished work as usual and walked home to get dinner on, ready for when James arrived home from work. When he stepped in the door I noticed that half of his face had dropped. At first I thought he had had a mini stroke!

While we waited for the taxi to beep that it was here, to take us up to A&E we discussed what it could be. ‘MS’ James said. His mum passed away when he was 9 years old. She had MS and was bed ridden. She had pneumonia and was not strong enough to fight it when she sadly passed away.

At the hospital he was told that he had to stay in over night to be monitored to then have an MRI test in the morning. I had to say goodbye and that night I stayed with my in-laws.

In the morning my phone rang. It was James. I answered it and he was just sobbing. At first I couldn’t make out what he was saying. ‘Demyelination’ he said. ‘What does that mean?’ I replied. ‘MS’.

That was the day our life changed for ever. At first we thought it was a death sentence. But it isn’t, it just means that you have to grab hold of life now!

In November 2007 we had our first child, a beautiful baby girl. But James was struggling at work. He is a fully qualified chef and has a passion for food. But little did we know that the heat/stress of the kitchen was flaring up his MS. So he went into butchery the following year but this also became difficult too. This was hard for me to watch.

In September 2009 we had our second child, a handsome baby boy. Our family was complete but James was now having 3-5 relapses a year. He was told to give up work. Every time he got over one e.g. loss of legs, sight. Another would hit him. I was now not working, to care for him too. He was also now on beta interferons injections. These were very painful and didn’t seem to be slowing the disease down, this scared me.

In August 2010 we moved from Norfolk to Hertfordshire. New doctors, new neurologist, new MS Nurse, it wasn’t easy. The relapses were still happening violently, especially on his left side.

In June 2011 James started Natalizumab (Tysabri) infusions every 28 days, these have been working, thankfully he hasn’t had a relapse since starting them.

It’s now 2017 and for the first time I feel like we have got this. Don’t get me wrong it’s still a massive hurdle in our life and there are good days and bad but you just have to try your best to adapt, to find a way to try and be a so-called ‘normal’ family.

I am doing this run now as I feel the time is right. James is my hero, he never moans, he just takes it one day at a time. I’m so proud of him and the way he handles it. Now it’s my turn to make him proud and be his hero.

I also want to show our children if you put your mind to something you can achieve anything.

Gemma.

Carer strain in Multiple Sclerosis: development of a new intervention

Posted on: June 12 2017

carers-week.pngIn this guest blog Kristy-Jane Martin gives details of a new study looking into the effects of caring for someone with MS.

Research and clinical experience has shown that some carers of people with MS experience low mood and stress. Together, this is referred to as ‘carer strain’. Currently, there is no specific support available for carers in clinical practice. For any specific support to be made available through NHS services, research must show that the support that is provided is beneficial for carers of people with MS, and it should not cost too much. Carer strain and support has also been a topic identified by the MS Society as an important subject to focus on.

Acceptance and Commitment Therapy (ACT) is a talking therapy that has been found to be useful for people in distress. ACT teaches people to respond more effectively to difficult thoughts and feelings, so that they no longer are a barrier to living a full and enjoyable life. In the context of carer strain, ACT offers a range of strategies – including mindfulness techniques – that could help carers to better cope with their caring responsibilities and associated emotional demands. Our team has tested associated self-help versions of ACT on people with MS but not with carers of those with MS.

The study we are proposing will randomly allocate carers who are distressed to one of three groups: one group of carers will receive an ACT self-help book, one group will receive the ACT self-help book alongside telephone support from a trainee clinical psychologist, and a third group will continue with their usual treatment. The aim will be to compare the three groups 3 and 6 months after joining the study to see if there has been any reduction in carer strain.

The outcomes we feel might be of interest to carers are: carer strain, mood, and quality of life. We will also be looking at the cost-effectiveness of the ACT self-help to assess its applicability to the NHS.

The project will be carried out by Kristy-Jane Martin (Trainee Clinical Psychologist) as part of their doctoral training in Clinical Psychology. The project will be supervised by Prof. Roshan das Nair (Clinical Psychologist), Dr Nima Moghaddam (Clinical Psychologist and ACT specialist), and Dr Nikos Evangelou (MS Neurologist).

For more information please contact Kristy-Jane Martin at kristy.martin@nottingham.ac.uk

 

Helpline opening hours survey

Posted on: May 03 2017

the-ms-uk-helpline-team-kim-ryan-and-laura.jpgHi everyone,

We wanted to let you know about our latest survey…we would like to know your thoughts about our Helpline opening hours.
Currently the MS-UK Helpline is open Monday to Friday 9am to 5pm and is available via the freephone telephone number (0800 783 0518), live web chat or email.

The Helpline is staffed by trained advisors (that’s us!) to offer all the information you may need to make your own decisions.
We are reviewing our opening hours and exploring whether there is demand for us to extend those hours to provide a service through existing and maybe new channels.
Please take the time to complete our survey to help us to make plans for the future.

helpline-hours-survey-advert.jpg

Thank you so much for helping us with this research, your opinion will help us shape this service for the future!

Best wishes,

Kim, Ryan and Laura

The MS-UK Helpline team

National support and information about multiple sclerosis

Posted on: April 25 2017

the-ms-uk-helpline-team-kim-ryan-and-laura.jpgHi everyone, As it is MS Awareness Week, I just wanted to let you know about our national services that we offer here at MS-UK to supporting anyone affected by multiple sclerosis.

In my role at MS-UK I work on our Helpline. We are open Monday to Friday, 9am to 5pm, and we can give you all the information you need to make your own decisions. I answer questions about a range of topics, such as benefits, treatments and travel. There really are no taboo subjects, and because MS-UK does not accept any funding from the NHS or pharmaceutical companies, we can remain completely unbiased.

You can call me or any of our Helpline team on 0800 783 0518, or use our live web chat service online. We also have a telephone interpreting service for anyone with limited English or no English at all. Just visit our website to find out more about this.

np-102a.jpgWe also produce information about multiple sclerosis, including our Choices leaflets. We cover topics like treatment, symptoms and life with MS. We have some useful downloads on our website such as the newly diagnosed booklet which you can download or order a free printed copy of. We also have a symptom diary which can be handy for when you have an appointment with your MS nurse or GP.

Our other national service is the bi-monthly magazine, New Pathways. Available in print, audio CD, plain text or online via the My MS-UK app, New Pathways covers MS news, research and topics you need to know about. At MS-UK we feel it is vitally important to share the real life stories of people affected by multiple sclerosis, and New Pathways gives us a chance to do this and showcase opinions and views.

You can find out more about New Pathways on our website. Should you need any support of information, please do get in touch, as we’re always here to help, Best wishes, and have a great MS Awareness Week!

kim-sig.jpg

Kim Salmon MS Advisor, MS-UK Helpline

Creative fundraising for the Virgin Money London Marathon

Posted on: April 20 2017

chris-bradshaw.pngChris Bradshaw’s Mother in law has come up with a very creative way to fundraise for his Virgin Money London Marathon run for MS-UK – quilting! Find out more in the interview with both Chris and Rosemarie…  

mick-and-rosemary-002.jpgSo Chris, why are you running the marathon for MS?

My father-in law has had MS since his mid 20’s and ever since I’ve known him it’s been remarkable how he still continues to enjoy life through his high-tech wheel chair and still manages to get to occasional gigs. My mother in-law is also a hero as she is his fulltime carer and is amazing how she has the energy to do it continually and still keeps a big smile on her face! Both of these outlooks combined with supporting MS carers is why the least I can do is run the Virgin Money London Marathon.

How has training been going and what have you found the hardest thing?

Training going = Strong! Hardest thing = Time! (lack of)

Hi Rosemarie. How long have you been quilting for?

Coming up to almost 50 years now!

Why did you take it up? blanket-3-5.jpg

Since having children I have always done some sort of sewing, be it clothes for the little one or making fancy dress costumes or dance costumes. I quilted on and off during that time but stopped when my husband’s condition deteriorated, so I became his full time carer. Then four years ago I myself became ill and spent many hours having treatment. As you can imagine I was used to a very busy life so having to sit still for several hours at a time was very difficult. My daughter knowing how I felt bought some material and said 'make me a quilt' which fuelled a passion for hand piecing and quilting. My husband who is totally disabled goes to bed around five in the afternoon until the following morning. Quilting allows me to enjoy the evening sitting with my husband whilst being enjoying my hobby.

What made you want to support Chris' marathon run in such an inventive way?

In the past I have often been asked by friends if I would sell them my quilts but my pleasure is to give them as gifts. As there appeared to be an interest in them we thought that it would be a really nice and original way to help Chris in his fundraising and at the same time allow people to acquire something nice for their donation.

What does supporting MS-UK mean to you?

The work MS-UK do in raising awareness and providing support for those with this terrible disease is so very important, so raising money is a way of saying thank you.

What is the best thing about being able to create beautiful crafts and raise money at the same time? img_5902.jpg

Doing exactly that! Doing something I enjoy whilst helping make a difference for an important cause.

Finally Chris, are you looking forward to the big day?

Absolutely! Everyone has told me how the crowds are incredible and they carry you through the pain of the 26.2 miles!

You can view Rosemarie’s quilts at https://www.etsy.com/uk/shop/SnuggleforMS?ref=hdr_shop_menu

Chris’ JustGiving page is at https://www.justgiving.com/fundraising/Chris-Bradshaw-Marathon-2017

Bank holiday closing times

Posted on: April 13 2017

thur-14-pm.pngHi everyone,

MS-UK will be closed over this long weekend for bank holidays, so just to remind you of the times:

Thursday 13 April - open until 5pm

Friday 14 April - closed

Monday 17 April - closed

Tuesday 18 April - open from 9am

This includes the MS-UK Helpline. If you would like to leave a message for our Helpline team over the weekend, please email us, and we will respond when we get back next week.

Thank you all and do have a lovely Easter if you are celebrating!

Best wishes, The MS-UK team

Pages

Live Chat Software by Click4Assistance UK